MATERIAL ON HIV / AIDS
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- Title
- MATERIAL ON HIV / AIDS
- Rights
- AIDS
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MATERIAL ON HIV/AIDS
SENT BY
MEDICAL MISSION INSTITUTE
UNIT FOR HEALTH SERVICES AND HIV/AIDS
SALVATORSTR. 22
D-97074, WURZBURG
GERMANY
June 2001
eligion has always been part of social life in
in a time of rapid social change, with religions not just
Asia and the Pacific.
The region is the
surviving but thriving amid modernisation. In fact, in several
birthplace of such world religions as Hinduism
countries in the region, religious fundamentalists - Hindu,
and Buddhism as well as many other smaller but
Islamic, Christian - have a growing number of followers.
significant religions, from Sikhism to Shinto.
offering a “return to traditions" as the solution to the
At the
same time, the region has often been tolerantj
problems of modernisation.
welcoming religions from outside. Today,Asia includes
HIV/AIDS poses new challenges to religions.
the largest Islamic countries in the world — Indonesia,
Because its main mode of transmission is sexual, HIV/
Bangladesh and Pakistan.
AIDS intensifies the tensions that are present around
Besides Islam, Christianity
has also flourished in many countries in the region, to
sexuality. Many religions have had ambivalent attitudes
name a few, the Philippines. South Korea and the Pacific
toward sexuality. Religions have always been important
island nations.
For many Asians and Pacific islanders, religions are
forms of social control, especially in the area of sexuality.
not just a matter of paying homage to the supernatural.
and even celebrated the powerful forces that come with
They provide important ethical guidelines for living, for
sexuality, whether for reproduction or for eroticism.
But many religions, especially in the past, also respected
interpreting natural events Including disasters and
The ambivalence continues today,and often creates
misfortune, and for coping with life’s milestones, from birth
problems for HIV/AIDS prevention and care. .The
epidemic is interpreted by some'p'ebpie as ;d[yine
through illness to death. They also often provide an anchor
punishment for sexual transgressions, from premarital sex to
homosexuality. The stigma posed by religion can be powerful.
Governments and NGOs often avoid working with or supporting
groups such as homosexuals or sex workers because they are seen
as sinners who deserve to become infected. Some may even think
of AIDS as a way of cleansing society of such "undesirables”.
Even in countries where there are HIV prevention programmes to
reach such sectors, the targets may themselves be socially inaccessible.
Internalising what religions have said about their “sinful” behaviour, they
remain marginalised, unreached by information and education campaigns
Religious stigma works most strongly against those who are
infected with HIV, who may be left to fend for themselves
Again,
governments may be reluctant to respond to the needs of people
with HIV because they are seen as sinners.
Religious prejudices.
mixed with misconceptions about HIV/AIDS. become a dangerous
and volatile mixture that sends many people to their deaths.
Fortunately, there has been ferment, too. among religious
institutions, as people begin to question biases and prejudices. The
responses have varied
In Thailand, as we see in an article by Noemi
Leis, Buddhist monks are now at the frontlines providing care and
support for people living with HIV, particularly those who are very ill
and who are dying. Christian missionaries and lay workers are doing
similar work in many parts of Asia, again mainly providing institutional
care for the sick and dying. This includes many Catholic workers who
may be reluctant to promote condoms as part of preventive education,
but who are at least willing to minister to the needs of patients.
There are, too, religious thinkers who are tackling the very
doctrinal bases for behaviour
The article in this issue by Masdar
Mas'udi presents, in simple language, the rationale for a more secular
approach in Islam toward the HIV/AIDS epidemic. He explains, for
example, that condom use upholds Islam’s premiere right, the right
to life.
Theologians have tried to tackle other ethical dilemmas brought
about by the threat of HIV/AIDS.
For example, some people may
object to needle exchange programmes,
where drug dependants are given new clean
needles. The objections come about because
the programmes are seen as tacit acceptance
of the use of drugs, but religious ethicists will
say that the needle exchange programmes
constitute a lesser evil because it saves lives.
Other religious thinkers, notably Muslim
and Christian, have contributed to the fight
against HIV/AIDS by questioning the role of
religious' doctrines in reinforcing gender
inequality, and the way this inequality
contributes to women’s vulnerability to HIV.
Religious norms that force women to be
passive may become a death sentence since
they are then unable to protect themselves,
even if they know their husbands or partners
may have HIV.
The inclusion of religious groups in HIV/AIDS work can produce
many benefits, some of which are explained below:
First, many religious institutions have formidable resources that
can be tapped for HIV work. These religious institutions have their
AIDS ACTION Issue 47
April-June 2000
own schools, hospitals, clinics and orphanages. While some of these
institutions may be reluctant to discuss sexuality issues, or to promote
condoms, they can at least be mobilised to provide other services,
especially for care and support.
Second, religion plays such an integral role in people’s lives that
an HIV/AIDS prevention programme
cannot be effective unless it
deals with people’s religious beliefs and practices.
For example.
government and NGOs need to look at how religious beliefs shape
Major Religions of the World
the relationships between men and women. If women see the risk
of HIV/AIDS as unavoidable, as part of karma, then educational
programmes will not be very effective. Religous beliefs and practices
also play vital roles in the care and support of people with HIV. It is
important to emphasise the suppportive aspects of religion.
Third, dialogues between religious institutions and groups
working on HIV/AIDS can be mutually beneficial.
Religions offer
ethical frameworks to discuss many issues that have to be tackled in
HIV/AIDS programmes. Some religious workers rightly object to
programmes that only distribute condoms without encouraging
people to discuss what is meant by "correct use". "Correct" is not
just a matter of technical skills, but must also be based on notions of
a mutual respect, and of sharing of responsibilities.
Conversely, people working in public health can bring up very
practical case studies and challenges for religious leaders and thinkers
to tackle. What does one do. for example, if a husband is infected
and the wife is still free of HIV? Would they be asked to abstain
from sex? Or would they be encouraged to use condoms, an option
still not allowed among Roman Catholics!
Sometimes, the implementation of HIV prevention programmes
raises ethical issues that need dialogues. What happens, for example,
when a Catholic physician goes around claiming that condoms do
not prevent HIV/AIDS!
Would that not be violating religious
injunctions on speaking the truth, and on preserving life?
Dialogues open people’s minds. When religious workers listen
to NGOs and government workers doing HIV prevention, they begin
to see the potential impact of HIV/AIDS on society.and the need for
such measures as sex education.
Source: http://www.adherents.com
Likewise, religious workers are
needed to remind medical people - often jaded by their routines -
to respect human dignity and human rights.
Often, there is a fear that such dialogues' will lead to
compromises when in fact they can lead to new richer partnerships.
— Michael L Tan, HAIN -0-
bsoul
being held in the Philippines. The multr-media programme,-; I
aptly called "Body and Soul", was developed by_t(^A^S?2l
The discussions present.perspectives.frpmJthe,;^ShSicSS
^--Religion can influence a womans reproductive
■ rs; .'("ifiealth, whether positively or •adversely. As the
‘Women’s Feature Services’(WFSf'puts it "Religion
■■^■'^■/is'an’experience sb personal.3&'so political, that
BHr • V;-it tends (d'affect many aspects of womens lives.
'including'reproductive health
-men/ ■
Protestant and Islam religions. Which aie'the''predprnrangr
religions in the Philippines. Fodr multHned^a aiscussjop^
forums have been held, and the papers presented}af^CT?,t
forum have been compiled and published into
discussions have focused on the following themest^^j c'.
©
Frameworks on Religion and Reprc^uctKe’Heajtfir£
©
©
©
Condoms and Religion
Adolescent Sexuality
’
Population . ..
’.’
■
/.
AIDS ACTION Issue 47 April-June 2000
IljrV
__ Buddhist Monks:
RESPONDING TO HIV/AIDS
The Buddhist monks have become a very important stakeholder in the fight against HIV/AIDS and are now
recognised as a strong partner in HIV/AIDS work especially through their spiritual guidance.
r |^| en years ago, Mae Chan hospital in Chiang Rai, Thailand
I
I first encountered cases of HIV. It was at this time that the
-
-Il
t HIV/AIDS epidemic was rapidly spreading in Thailand,
particularly in the northern area which shares borders with Cambodia
and Laos.
.Monks and health workers
planning future HIV/AIDS
activities
The hospital staff, however, found it difficult to talk about HIV/
AIDS with the patients. Likewise, persons with HIV/AIDS (PHAs)
who were admitted to the hospital did not discuss their thoughts
and feelings with the hospital staff. Instead, the patients were going
to the Buddhist monks for counselling and spiritual guidance.
The health workers at the hospital then realised the monks
played an important role in people’s lives, and decided to explore
ways they could work with the monks. Although the monks were
hesitant when HIV/AIDS was first discussed, they became more open
and receptive to the idea as the number of HIV cases increased, and
their friends and family members became infected.Wanting to know
more about a disease which was fast becoming a problem for their
communities, the monks then approached the hospital staff. Gradually,
the monks and health workers started to work together. Since then,
the Mae Chan District Hospital and the Buddhist monks have worked
together for the prevention of HIV/AIDS while providing care and
support for those who are already infected.
NDBLeis/HAIN
WORKING TOGETHER
Today, Mae Chan hospital has a meditation room where patients
can read, listen to tapes of Buddhist teachings, meditate or have a one-
on-one counselling session with monks. If the patient cannot walk, the
monk stays at the bedside. An audiocassette tape of Buddhist teachings
is aired on the hospital’s sound system so that all the patients can listen.
In addition to their work in the hospital setting, the Buddhist monks
also provide community support. The temples have become a venue
for several activities for PHAs and their relatives. They do meditations,
yoga, exercises, herbal sauna, food preparation and even income
generating projects such as making herbal medicines. The monks conduct
home visits as well to talk to those who are infected and affected.
A Buddhist temple
in Chiang Rai, Thailand
Several community therapy centres have been established in
Chiang Rai to provide a venue for community interaction. Community
members who are not HIV positive go to the centre and provide an
informal social support system for the PHAs in the community.The
monks regularly visit the community therapy centre to conduct
information campaigns and to provide care and support services.
The monks emphasise meditating before doing activities such
as counselling or treatment Health workers, PHAs, and their families
AIDSACTION Issue 47
April-June 2000
TH® BUeffiMST
AIDS PROJECT
are also encouraged to meditate.
In conducting educational activities, the monks use Buddhist
teachings on moral conducts for human behaviour. There are five
moral conducts in Buddhism:
©
With its goal of linking together Buddhist communities in
different countries, the Buddhist AIDS Project (BAP)
maximises the use of information technology to reach a
wide audience.
Do not destroy life
@
Do not take what is not given
©
Abstain from sexual misconduct
©
Abstain from falsehood
©
Abstain from intoxicants
The monks do not prohibit condom use. However, they leave
In the past, many of the information resources on HIV/
AIDS and Buddhism have not been easy to find. BAP is
working to change that situation. Through its website.
BAP provides easy access to information resources
its discussion to lay educators in the hospital.
Aside from social, spiritual, and emotional support, monks also
provide PHAs their basic needs such as food, clothing, soap, and others.
The monks conduct their own fundraising activities and are not
dependent on the hospital for funding. The Buddhist community has
The project aims to provide free information and referral on:
© current HIV/AJDS information, with links to local,
national and'international resources
© Buddhist teachings, practice centres and events
complementary alternative medicine services
traditionally supported the monks, who walk through the streets in
The website also contains the BAP Library of Articles, which
is a list of information materials on HIV/AJDS. Buddhism,
spirituality, medicine, research findings, conference reports
and announcements, among others.
to international agencies for funding, and they have been quite
the morning carrying bowls where people can put their donations.
There are also Buddhist festivals when people go to the temples
to bring gifts for the monks.The gifts are usually money, food,clothes,
and other items.These gifts are then shared with their community.
It is interesting to note that monks have also learned to write
successful in generating funds.
Every month, the health workers from the hospital meet with
monks to provide them updates on HIV/AIDS and give information
materials. During these meetings they also talk about future plans
Moreover, the BAP website serves as a virtual gathering
place where many people have made themselves available
for those seeking life enhancing practices that can
strengthen the response to changing physical, mental, and
spiritual challenges.
and fund raising activities.
BAP serves persons living with HIV/AJDS, including family.
friends, caregivers, as well as people who are HIV negative.
The project provides information . on HIV/AIDS and
alternative health care to its clientele.'
■
,
complement each other, and that they should go on working together
While focusing on the San Francisco Bay Area, BAP offers
worldwide information and referral services, responding
to requests through e-mail and phone. Recently. BAP has
assisted community service projects in Thailand and
Cambodia: They also offer study and support groups on
basic Buddhist teachings and practice. ■
'■■'•'■••rTK1-''.'•• •■■■•
< .
BAP is a'ndfi-profif project "of the'Buddhist Peace
but also lessens the impact of stigma. The PHAs have become more
Fellowship, Established in 1987, it is now based in San
Franciisco~'tO^£1^P isfrUrt';,byi:aboijt 30 volunteer
phys1&|ins^%ody..Wb?ke'rs7f counsellors, •'mediation .
instri^to'rS
^iite'i^,'BAP,'Slso'welcomes interested
monk in Mae Chan district observes, “Imagine that HIV/AIDS is a
LESSONS LEARNED
Both the hospital workers and the monks agree that their efforts
in providing HIV/AIDS education as well as care and support services.
The participation of PHAs as well as the non-positive community
is also important.
The community therapy centre provides not only social support
hare their time and skills.
visible in the community without experiencing discrimination from
other community members. Disclosure for PHAs about their HIV-
status is thus not a very sensitive issue.
The Buddhist monks have become a very important stakeholder
in the fight against HIV/AIDS and are now recognised as a strong
partner in HIV/AIDS work especially through their spiritual guidance.
Explaining the Buddhist response to HIV/AIDS, Supakit. the head
glass, and you break the glass so that there are many small pieces.
Each of us can pick up a piece. This is easy to do because it is only a
small piece of glass that we have to pick up.We must all work together
to pick up the little pieces so that we will solve the problem”.
— Noemi D. Boyonetoleis. HAIN
Acknowledgements: The author would like to acknowledge the assistance
provided by Ms. leap Pinitsuwon and Dr. Supalert Nedsuwan of Mae
Chan Hospital andMonks Supakit. Sommai, Niwik Supat Monahir. Pairnv,
Muangvisan from Temple Muang Klang.
AIDS ACTION Issue 47 Apriljune 2000
HIV/AIDS:____
BETWEEN TWO PARADIGMS
o epidemic in the world today attracts as much attention,
Is it not those who are ill who need, even more, God’s love?
publication, debate and controversy as HIV/AIDS. There are
On the argument that HIV/AIDS is caused by sin, secularists
many reasons for this, including HIV/AIDS being incurable
point out that transmission can also occur within the halal (lawful)
and deadly. Another factor which contributes to more public attention
sexual relationship between a husband and wife.
to HIV/AIDS is that its main method of transmission is sexual. This
transmission also occurs through blood transfusions and from a
has brought about
heated debate and controversy between
two
Moreover, HIV
mother to child.
paradigms: the religious and secular paradigms. The religious paradigm
Secularists point out that according to Islamic teaching, there are
claims to be rooted in the sacred texts while the secular paradigm is
five human rights: the right to life, the right to believe, the right to
rooted in the realities of the world.
have knowledge, the right to have property and the right to have clan
Within
of
framework
religious
the
identity (nasob). Of these
the
five rights, the right to life
paradigm,
is the most important For
the
particularly the more
conservative
secularists
then,
condom use upholds this
ones,
human beings have no
premier right to life.
other way to differentiate
In the context of a
the good (al-hasan) from
married couple where one
the evil (afqobih), except
of them has been infected
through drvine revelation.
with HIV, can one allow
Using this perspective,
sexual relations to occur
advocates of the religious
without any protection?
paradigm view the HIV/
Does that not mean we
AIDS epidemic as a
are
blessing in disguise. This
danger,
looks at HIV/AIDS as a
consequences? Or must
putting
them
with
in
fatal
curse and punishment
couples with one infected
from God for humanity’s
with HIV be separated
disobedience. Using this
forever?
line of argument, religious
We have seen many
conservatives condemn
Ced/HAIN
cases of women working
the use of condoms because this is seen as justifying illicit sexual relations,
in brothels who become infected with HIV. Would it not be moral
i.e., disobedience to God. Some religious conservatives even go to the
to offer the use of condoms to protect themselves, their client, and
extent of saying there should be no room for compassion for those
their family? We understand that zina (illicit sexual relations) is a
affected by the virus because they are sinners.
According to
religious sin, particularly for those already married. But is not zina
conservatives, the only way to prevent HIV/AIDS is to return to the
without protection (i.e., without the use condoms) an even greater
demands of religion and faith
sin because it allows a deadly virus to be transmitted?
Those advocating a secular paradigm say that “good" is defined
These critical questions are difficult to answer by the ulama holding
as something useful for humanity and "truth" is something that can
the very formalistic and conservative religious paradigm. A moral and
be proven empirically. This saying explicitly recognises the necessity
ethical perspective concept built on the authority of doctrine without
of looking at the material bases-of one’s faith. If so. the religious
being based on empirical reality tends to become empty words.
people should not look at the human life only from the formal religious
On the other hand, modern humanity must also be aware of
As the Prophet
the dangers of a morality without a transcendental dimension because
Muahammad says, "Kaoda al-foqrv an yakuna kufran: poverty can bring
there is the risk of losing one's orientation. An exchange of views,
about somebody to disbelieve.”
where each side is open to the insights of the other, is clearly needed
perspective, but from the reality of material life.
Responding to conservatives, secularists say that no one can
if we are to work out a program of understanding and action.
positively prove that HIV/AIDS is a curse sent by God to punish
— Masdar F. Mas'udi
human beings for disobeying God's will. Secularists ask how one
Director of The Indonesian Society for Pesantren and Community
can justify isolation or “excommunication" of those in great suffering.
Development, Jakarta, Indonesia &
AIDS ACTION Issue 47
April-June 20CO
____ Re I ig I ous Lea d e r s___
_S ped k Out on HIV/Al DS
"... the magnitude of AIDS epidemic
problem in the ASEAN region is
increasing significantly. The increase has
to be controlled in time, otherwise,
religious, social and economic
development in the region will be hindered
and disparities within and between
ASEAN Member Countries will increase
accordingly,
... every individual has the right to
have an appropriate and right
information on HIV/AIDS. Without
having the information nobody will be
able to prevent HIV infection,
... all Muslim Leaders in all ASEAN
Member Countries have to be properly
trained to use the IEC instruments and
methods. The well-trained Muslim leaders
will then play their important role in
HIV/AIDS campaign in their respective
community.
— The Jakarta Declaration of
Islamic Religious Leaders
December 1998
"To Tibetan physicians, AIDS is
really something new, and the immediate
cause is negative: sexual liberty... such a
major illness or major negative event also
has a karmic cause, no doubt. But I think
AIDS also has a positive aspect. It has
helped to promote some kind of self
discipline. ”
"God loves you all, without
distinction, without limit. He loves those
of you who are elderly, who feel the
burden of the years. He loves those of
you who are sick, those who are suffering
from AIDS. He loves the relatives and
friends of the sick and those who carefor
them. He loves us all with an
unconditional and everlasting love."
— The Dalai Lama, 1994
— Pope John Paul II, California
September 1997
"Perhaps the AIDS crisis is God's
way of challenging us to care for one
another, to support the dying and to
appreciate the gift of life. AIDS need not
be merely a crisis: it could also be a God
given opportunityfor moral and spiritual
growth, a time to review our assumption
about sin and morality. The modern
epidemic of AIDS calls for a pastoral
response."
"For us, an encounter with people
infected with HIV/AIDS should be a
moment of grace - and opportunity for
us to be Christ's compassionate presence
to them as well as to experience His
presence in them."
— Bishops' Conference
of the Philippines, 1993
— Bishops of Southern Africa
June 1990
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AIDS ACTION Issue 47 April-June 2000
AIDS and Muslim Communities: Opening
Up by S AJi. Summary of an international meeting
in Karachi to explore the relationship of Muslim
religious and political concepts with HIV
transmission, medical care, and human rights. AIDS/
STD Health Promotion Exchange 1996(2):! 3-6.
Available from HAIN.
Handle with Care: a Handbook for Care
Teams Serving People with AIDS by RH
Sunderland and EE Shelp. A step-by-step guide
for congregations that wish to organise care teams
to serve people with HIV/AIDS. Contact
Foundation for Interfaith Research and Ministry.
PO Box 205528, Houston, Texas. USA.
AIDS and the Muslim Communities—A
Personal View/AIDS and the Muslim
Communities—Challenging the Myths.
Leaflets in English. Gujrati. Urdu. Arabic. Farsi.
Gengah and Turkish available from The Naz
Project. Palinswick House. 241 King Sc. London
W6 9LP. UK.
Islam, Reproductive Health and Women’s
Rights. Zamah Anwar and Rashidah Abdullah
(editors). 2000 A collection of papers presented
at a recent conference on Islam and reproductive
health.
The papers were prepared by
theologians, academicians and NGO workers.
They discuss Islamic teachings —drawing from
the Quran and hadith — and its relationship to
reproductive health and rights, on issues ranging
from HIV prevention to gender relations.
Available for US$20 (RM40) plus postage cost
which is 25% of the total, order for surface mail
and 100% of total order for airmail Write to
SIS Forum (Malaysia) Berhad. Sisters in Islam. JKR
No. 851, Jalan Dewan Bahasa, 50640 Kuala
Lumpur. Malaysia.Tel: (603) 242 6121/248 3705.
Fax. (603) 248 3601 Write to sis@sisfdro.po.my
or visit http //www.sistersinislom.org.my
Body & Soul: a Multimedia Discussion on
Women, Religion & Reproductive Health,
2000. A collection of papers presented in several
interfaith dialogues related to reproductive
health. Four booklets are available on diferent
themes, namely: Frameworks on Religion and
Reproductive Health; Adolescent Sexuality;
Population; and Condoms and Religion. For
orders.write to Womens Feature Service (WFS)
Philippines. 313-E Katipunan Ave., Quezon City.
Philippines. wfs@pacific net.ph
Catholic Ethicists on HIV/AIDS Prevention,
2000. James Keenan (editor). A collection of
essays and case studies discussing HIV/AIDS
prevention from a Catholic perspective, drawing
on theology, philosophy and ethics. It includes a
good selection of 26 case studies, based on reallife situations from different countries - developed
and developing — with a discussion of options.
Available for US$24.95 (Paperback) from
Continuum International Publishing Group. Inc..
370 Lexington Ave.. New York. NY 10017, USA;
or £15.99 from Continuum International
Publishing Group Ltd., Wellington House, 125
Strand. London WC2R0BB; Or visit their website;
http://www.continuum-books.com
The Church Responds to HIV/AIDS : a
Caritas Internationalis Dossier, 1996. A
selection of statements on HIV/AIDS by Catholic
Church leaders such as Pope John Paul II, bishops’
conferences and other church groups. The
booklet presents the stand of the Church based
on its teachings and as shown by pronouncements
of Church officials. Available for £1.50 from
CAFOD, Romero Close, Stockwell Road, London
SW9 9TY. UK. ISBN I 871 549 639
Friends for Life by R Manning. Describes a
Buddhist monk’s initiatives in establishing Friends
for Life, a hospice for PHAs in the outskirts of
Chiang Mai. Thailand. AIDS Action Asia Pacific
edition Jul-Sep 1995 (28): 11 Available from HAIN.
A Guide to HIV/AIDS Pastoral Counselling.
Explains the process of HIV/AIDS counselling,
provides basic information for pastors on the topic
and features case studies. Available in English,
French. Spanish, Portuguese at US$10, surface
mail. Free to developing countries from CMCChurches’Action for Health, World Council of
Churches. P.O. Box 2100, 1211 Geneva 2.
Switzerland, dgs@wcc-coe.org
AIDS ACTION Issue 47
April-June 2000
AIDiS
AIDS Action is published quarterly in seven
regional editions in English, French, Portuguese
and Spanish It has a worldwide circulation of
179,000
The original edition of AIDS Action is produced
and distributed bv Healthlink in London
• AIDS Action A>ia -Pacific edition staff
Editor
Michael L. Tan
Managing editor
Mercedes B Apilado
Editorial Assistants
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Layout
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Circulation
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Board of Advisers
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Ms Cal uh Wandita (Indonesia)
Dr S Sundararam.m (India)
Dr Kangmai Liu (China)
• Inlernntional edition
Commissioning Editor
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Editor
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Copy Editor
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Design and Production Ingrid Emsden
Publishing partners
ABIA (Brazil)
Colectivo Sol (Mexico)
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HAIN (The Philippines)
SANASO Secretariat (Zimbabwe)
Consultants based at University Eduardo
Mondlane (Mozambique)
The Jakarta Declaration is the result of the
First HIV/AIDS ASEAN Regional Workshop of
Islamic Religious Leaders held November 30December 3. 1998. The Declaration sets forth
the rationale for the involvement of Muslims in
the regional response to HIV/AIDS. It also
includes a Plan of Action which presents
objectives, activities, and recommendations
identified at the workshop. Posted on SEA-AIDS
- Message 1707. Copies available from HAIN.
The Asia-Pacific edition of AIDS Action is
supported by The Ford Foundation, CAFOD,
and Christian A ici
Knowledge, Attitudes, and Behavior:
Cambodia’s Monks, Nuns Fill Gap for AIDS
Patients, 1997. Describes the HIV/AIDS
situation in Cambodia and how the religious
community such as the Buddhist monks and
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Available from HAIN.
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MATERIAL ON HIV/AIDS
SENT BY
MEDICAL MISSION INSTITUTE
UNIT FOR HEALTH SERVICES AND HIV/AIDS
SALVATORSTR. 22
D-97074 WURZBURG
GERMANY
June 2001
~f- Missionsarztliches institut Wurzburg
Medical Mission Institute
Missionsarztliches Institut, Postfach, D- 97067 Wurzburg, Germany
□ Managing Dlrector/Secretarlat
Salvatorstr. 7; D-97074 Wurzburg, Germany
Tel.: ++49-931-791-2900, Fax: ++49-931-791-2801
e-mail: mi.gf@mail.uni-wuerzburg.de
TO ALL RECIPIENTS OF OUR
Units:
LITERATURE PACKAGE
□ Tropical Medicine and Control of Epidemics
Herrmann-Schell-Str. 7,97074 Wurzburg, Germany
Tel.: ++49-931 -80485-23, Fax: ++49-931 -80485-30,
e-mail: mi.tropmed@mail.uni-wuerzburg.de
El Health Services and HIV/AJDS
Salvatorstr. 22; D-97074 Wurzburg, Germany
Tel.: ++49-931 -80485-0, Fax: ++49-931-80485-25
e-mail: mi.health@mail.uni-wuerzburg.de
□ Appropriate Technology In the Health Sector
Herrmann-Schell-Str. 7, D-97074 Wurzburg, Germany
Tel.: ++49-931-80485-15, Fax: ++49-931-80485-20
e-mail: mi.appro@mail.uni-wuerzburg.de
05. June 2001
Dear friends and colleagues,
□ Cooperation In Need and Disaster
Salvatorstr. 22; D-97074 Wurzburg, Germany
Tel.: ++49-931-80485-17, Fax: ++49-7841 - 441
e-mail: mi.cinad@mail.uni-wuerzburg.de
Once again it is time to send you a new information and literature package - we do hope that it arrives
in good order and that it will be of much use to you and to many others who receive copies from you.
Since the silence about AIDS was broken at last year’s Durban Conference, the HIV situation in the
resource poor countries of the world and possibilities of action have been the focus of a number of
national and international conferences. By the time this package will reach you, the Special Session of
the General Assembly of the United Nations will probably have taken place already - we enclose a
declaration by the UN Secretary which was circulated in anticipation of this important meeting (item
No 16). An African summit on HIV/AIDS, tuberculosis and other infectious diseases took place re
cently in Abuja, the capital of Nigeria, where also Kofi Annan addressed the participants (items 14 and
15). It is good to know that heads of governments take vital health issues seriously - it remains to be
seen how much of it will be converted into action.
An UNAIDS publication informs about the reasons for the success of HIV prevention interventions in
Senegal, Thailand and Uganda (Nr 1). Two articles deal with new communication strategies to better
convey prevention messages (Nr 12 and 13). The prevention of mother-to-child transmission of HIV
remains an important issue (Nr. 2 and 3). Care and support for the affected need our attention; the
question of how and when and under what conditions antiretroviral treatment can be introduced in
resource poor countries gains momentum (Nr. 4,5 and 6). Three papers (Nr. 18,19 and 20) deal with
TB related issues. There arc a number of other interesting articles on further HIV/AIDS related issues
and other important health matters which may evoke new ideas and initiatives on your side.
Before you start reading the 22 papers, we ask you to do some other ‘home-work’. We are all painfully
aware, that HIV/AIDS plays an increasing role at the workplace, also at the Catholic workplace.
Please read the letter “Study on HIV/AIDS and the Catholic Workplace” carefully and be kind
enough to complete the attached questionnaire!
C:\Eigene Dateien\AG\SONSTIGS\literaturepackage050601 .doc
Bankers: Postgirokonto Numberg (BLZ 760 100 85) Nr. 13898-853
Dresdner Bank AG, Wurzburg (BLZ 790 800 52) Nr. 30 11 574 - Liga eG, Wurzburg (BLZ 750 903 00) Nr. 300 6565
Finally we want to draw the attention of all those of you who have computer facilities equipped with
CD-ROM to the possibility of participating in the Human Information Project The goal of this nonfor-profit project is to provide the South with a complete basic library of +- 3.000 essential books at
the lowest cost possible, namely for 30 USS or less. For details please inquire from:
Humanity Information Project, Humaninfo.orgNGO - HumanityCD bvba
Oosterveldlaan 156- B-2610 Antwerpen - Belgium Tel 32-3-448.05.54, Fax 32-3-449.75.74
E-mail: mloots(Shumaninfo.org - http://www.humaninfo.org
We wish you enough time to be able to study all the documents sent and the chance to implement what
you find meaningful and suitable for your particular situation! - Please always remember that we ex
pect you to be a multiplicator for the information sent to you and that the latter will finally reach a
number of persons and institutions engaged in HIV/AIDS work!
With kind regards and best wishes for your work
-2-
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=§= Missionsarztliches Institut Wurzburg
Medical Mission Institute
H Health Services and HIV/AIDS
Salvatorstr. 22; D-97074 Wurzburg, Germany
Tel.: ++49-931-80485-0, Fax.:++49-931-80485-25
e-mail: mi.health@mail.uni-wuerzburg.de
TO ALL RECIPIENTS OF OUR
LITERATURE PACKAGE
06. June 2001
Study:
HIV/AIDS and the Catholic Workplace
Dear friends and colleagues,
“The Body of Christ is affected by AIDS”. This was the eye-catching text on a badge carried by a
Ugandan Bishop during the International AIDS Conference in Berlin in 1993. We met at our booth.
Right from the beginning we had a topic to discuss. The statement on the badge is not only an
acknowledgement of a reality, but also a prophetic statement on the response.
I
While the HIV/AIDS epidemic developed in the 90ies, the Church has had difficulties to
acknowledge that people of Christian faith, engaged lay people, as well as priests and members of
religious congregations arc getting infected with the virus. In official statements Church leaders have
generally given priority to the creation of a positive pastoral environment. In many homilies and letters
responsible persons of the Church have been asking for respect, solidarity and charity for those
infected and affected. However it seemed hard for the Church to acknowledge the reality, that it has a
problem like other parts of the society. Church members living with HIV suffered from a special
stigmatisation. Repeatedly they became victims of hasty judgements, unfounded prejudices and
discrimination. The parts of the civil society without Unk to the Church looked very attentively to the
consistency of the messages of a non-judgemental, non-discriminatory approach and the assurance of
basic rights and solidarity within the Church .
This whole issue was brought up at the last meeting of the Working Group on HIV/AIDS of Caritas
and CIDSE organisations (AFNG) in January in London. The organisations of the North had to admit
that they knew very little about concrete policies and approaches of their partners in developing and
rapidly developing countries in respect to HIV/AIDS. The Medical Mission Institute volunteered to
add a questionnaire to their mailing of information materials in order to invite partners to share with
them and the CI/CIDSE network their experiences. Taking into account the diversity of the
correspondents, we are aware that this study is not representative and scientific. The aim is to better
approach the problem and to identify examples and lessons learned which can be shared within the
network. The questions touch on policies and guidelines of the Church as an institution and employer.
The questionnaire tries to look at HIV/AIDS in the catholic workplace. It addresses specifically the
assurance of basic rights, possible approaches to fighting stigma and discrimination, measures taken to
prevent HIV infection and the provision of psychological, social, medical and pastoral care, treatment
and support for infected and affected people.
Bankers: Postgirokonto Nurnberg (BLZ 760 100 85) Nr. 13898-853
Dresdner Bank AG, Wurzburg (BLZ 790 800 52) Nr. 30 11 574 - Uga eG, Wurzburg (BLZ 750 903 00) Nr. 300 6565
We are very well aware that this study touches delicate and sensible issues. Therefore we would like to
assure you the confidentiality you will request. However we would welcome your open collaboration,
because we think it is important to improve the cooperation between CI/CIDSE partners. We intend to
present the results of this study at the next AFNG meeting in October 2001 and provide you with a
feedback. Therefore we ask you to respond till August this year. Feel free to send your answers back
to us by a way most convenient to you. Thank you very much for you collaboration.
Yours sincerely
KJemcns Ochel
-2-
QUESTIONNAIRE
General Information
Country:
Diocese:
Collaborating CI/CIDSE
Partncr(s) in the North:
Information on the HIV Epidemic in your region:
3] Very high prevalence area for HIV (HIV prevalence > 10 % adult population)
Q High prevalence area for HIV ( HIV prevalence > 5 % adult population)
d Medium prevalence area for HIV (HIV prevalence between 1 to 5 % adult population)
I I Low prevalence area for HIV (HIV prevalence less than 1 % of the adult population)
Legal Situation in regard to HIV/AIDS
Do government laws assure basic human rights for people living with HIV
e.g. assurance of confidentiality
| | yes
prohibition of testing without informed consent
O yes
prohibition of discrimination in the labour market
| | yes
exemption of fees in public health services for HIV/AIDS
as chronic disease
| | yes
If yes, can you give a short description of these laws?
□ no
□ no
□ no
□ no
HIV/AIDS in the Catholic workplace
Level of work
Are you working on national level
... on diocesan level
... in a health service
... in another project or programme
d yes
□ yes
d yes
□ yes
□ no
□ no
□ no
□ no
HIV/AIDS at the workplace
Did you discuss the issue of HIV/AIDS at your workplace
□ yes
□ no
□ yes
□ no
□ yes
□ no
Do you have written guidelines and policies, how to deal with
persons affected and infected with HIV/AIDS (PLHIV)
at your workplace.
If yes, would you share it with us. Please send us a copy!
Do you think that basic rights of PLHIV are assured
-3-
Are there any specific preventive activities in respect
to HIV/AIDS for the staff e.g. education?
Are you aware of any mandatory testing procedures
e.g. for employment at a Catholic workplace or for
entering religious life
|
yes
|
no
j
yes
yes
|
|
no
no
yes
yes
I
no
no
Docs the Church provide counselling services for
the ‘worried well’ employees,
PLWHIV
if yes, where arc they established?
Is stigmatisation and discrimination of PLHIV in your
setting a problem?
yes
no
Arc there specific actions to fight the stigma and avoid
discrimination of PLHIV in your setting?
yes
no
Arc there services and benefits for PLHIV,
once they are in need?
If yes, could you please specify
yes
no
Do links to other social, pastoral and medical services exist?
yes
no
Specify.
Are there any services offered to the family and other
affected persons?
yes
no
Specify.
■______________________________________
_____________
Are there any services offered to face the needs of
HIV/AIDS orphans?
Specify.
Has the issue of HIV/AIDS at the catholic workplace been
discussed at the level of the Bishop conference of your country?
If yes, could you share any statement on the issue!
Specify.
__
-4-
yes
yes
no
Do you have any general comments about the problem of HIV/AIDS at the catholic workplace. Could
you share with us your expectations and make suggestions how CI/CIDSE organisations in the North
could be of help to improve the situation?
Thank you very much for answering!
Please sejnd the questionnaire back to:
Medical Missions Institute
Unit Health Services and HIV/AIDS
Salvatorstr. 22; D-97074 Wurzburg, Germany
Tel.: ++49-931-80485-0, Fax.:++49-931-80485-25
e-mail: mi.health@mail.uni-wuerzburg.de
-5-
t -t
Missionsarztliches Institut Wurzburg
Medical Mission Institute
® Health Services and HIV/AIDS
Salvatorstr. 22; D-97074 Wurzburg, Germany
Tel.: ++49-931-80485-0, Fax: ++49-931-80485-25
e-mail: mi.health@mail.uni-wuerzburg.de
TABLE OF CONTENTS
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
UNAIDS: HIV prevention needs and successes: a tale of three countries. An update
on HIV prevention success in Senegal, Thailand and Uganda. Best Practice Collection.
2001. 17 pp.
Healthlink: HIV and motherhood. 2000. 19 pp.
WHO/ UNAIDS/ UNFPA/UNICEF: New data on the prevention of mother-to-child
transmission of HIV and their policy implications. Conclusions. 2001. 11 pp
WHO/UNAIDS: Key elements in HIV/AIDS care and support. 2000 31 pp
UNAIDS: AIDS: Palliative care. Best Practice Collection. Technical Update. 2000. 16
PPWHO, Initiative on HIV/AIDS and Sexually transmitted infections: Safe and effective
use of antiretroviral treatments in adults with particular references to resource
limited settings. 2000. 25 pp.
UNAIDS: National AIDS programmes. A guide to monitoring and evaluation. Pail 12. 2000. 23 pp.
World Health Organization (WHO): Rejection of hypothesis associating an
experimental polio vaccine with the origin of HIV. Weekly Epidemiological Record,
2000, Noi48 pp.406-407
Kahn, P.: Vaccines at Durban: a closer look. IAVI Report. Vol. 5 (2000) no.5 pp.5-7,19.
Aghaji, A.E.: Catholic ethicists on HIV/AIDS prevention. Book review. 2000. 2 pp
Hoppenbrouwer, J.: Mother-to-child transmission of HIV. 2001. 37 pp
Airhihenbuwa, C.O., B. Makinwa, and R. Orbregon: Toward a new communication
framework for HIV/AIDS. Journal of Helath Communication. Vol.5 (2000) Suppl.,
pp.101-111.
Diop, W.: From government policy to community-based communication strategies in
Africa: Lessons from Senegal and Uganda. Journal of Health Communication. Vol.5
(2000) Suppl., pp.113-117.
Annan, K.: Speech at the “African summit on HIV/AIDS, tuberculosis and other
infectious diseases, Abuja, 26 April 2001. 4 pp.
African Summit on HIV/AIDS and other related Infectious Diseases, Abuja, Nigeria, 2427 April 2001: Abuja declaration on HIV/AIDS, tuberculosis and other related
infectious diseases. 2001. 7 pp.
United Nations General Assembly: Special Session of the General Assembly on
HIV/AIDS. Report of the Secretary-General. 2001.30 pp.
Laing, R., H.V. Hogerzeil, and D. Ross-Degnan: Ten recommendations to improve use
of medicines in developing countries. Health Policy and Planning, Vol. 16 (2001) No. 1,
pp.13-20.
Girardi, E., M.C. Raviglione, G. Antonucci, et al.: Impact of the HIV-epidemic on the
spread of other diseases: the case of tuberculosis. AIDS, Vol. 14 (2000) Suppl.3,
pp.S47-S56.
C:\Eigene Dateien\MA\TABLE OF CONTENTS.doc
Bankers: Postgirokonto NQmberg (BIZ 760 100 85) Nr. 13898-853
Dresdner Bank AG, WUrzburg (BLZ 790 800 52) Nr. 30 11 574 - Liga eG, WOrzburg (BtZ 750 903 00) Nr. 300 6565
19
20
21
22
23
24
Hawken, M.P., D.W. Muhindi, J.M. Chakaya, ct al.: Under-diagnosis of smear-positive
pulmonary tuberculosis in Nairobi, Kenya. International Journal of Tuberculosis and
Lung Disease, Vol.5 (2001) No.3, pp.360-363.
Granich, R., N. J.Binkin, W.R. Jarvis, et al.: Guidelines for the prevention of
tuberuclosis in health care facilities in resource-limited settings. Contents and
executive summary. Geneva, 2000. pp. 1-8.
Haddad, S., P. Fournier, N. Machouf, et al.: What does quality mean to lay people ?
Community perceptions of primary health care services in Guinea. Social Science &
Medicine. VoL47 (1998) No.3, pp.381-394.
Jakob, B.: Participating in God’s salvation activities in the world. DIFAM Study
Document, No.3, 2001, pp.74-97.
Ihezue, C.H., and A. Likita: Blood transfusion: the case for preoperative
haemodilution in adults. Africa Health, 2000, May, pp.5-6.
Healtlink and HAIN: Religion and HIV/AIDS. AIDS Action, Asia-Pacific edition, 2000,
No.47. 8 pp.
-2-
MATERIAL ON HIV/AIDS
SENT BY
MEDICAL MISSION INSTITUTE
UNIT FOR HEALTH SERVICES AND HIV/AIDS
SALVATORSTR. 22
D-97074 WURZBURG
GERMANY
June 2001
II
r
H§V Prevention Needs
1
and Successes:
a tale of three countries
T
T
T
m
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m
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m
lU
in
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An update on HIV prevention success
in Senegal, Thailand and Uganda
A revised version of o speech delivered by Werasit
Sittitrai, Associate Director, Department of Policy,
Strategy and Research, UNAIDS, to a meeting of
the Office of AIDS Research Advisory Council,
National Institutes of Health, Bethesda, MD, USA,
28 April 1999
UNAIDS/01.15E (English original, April 2001)
ISBN 92-9173-055-6
© Joint United Nations Programme on HIV/AIDS
(UNAIDS) 2001.
All rights reserved. This document, which is not a
formal publication of UNAIDS, may be freely reviewed,
quoted, reproduced or translated, in part or in full,
provided the source is acknowledged.
The document may not be sold or used in conjunction
with commercial purposes without prior written
approval from UNAIDS (Contact: UNAIDS Informa
tion Centre).
The views expressed in documents by named authors
are solely the responsibility of those authors.
The designations employed and the presentation of the
material in this work do not imply the expression of any
opinion whatsoever on the part of UNAIDS concerning
the legal status of any country, territory, city or area or
of its authorities, or concerning the delimitation of its
frontiers and boundaries.
The mention of specific companies or of certain
manufacturers' products does not imply that they are
endorsed or recommended by UNAIDS in preference
to others of a similar nature that are not mentioned.
Errors and omissions excepted, the names of proprietary
products are distinguished by initial capital letters.
UNAIDS - 20 avenue Appia - 1211 Geneva 27 - Switzerland
Telephone: (+41 22) 791 46 51 - Fax: (+41 22) 791 41 87
e-mail: unaids@unaids.org - Internet: http://www.unaids.org
H«l¥ Prevention Needs
©nd Successes;
o taife of three countries
Ah) ypdote ©st HUY
ww©ss
m S^swgdl,, Wmhinid ©tmdl Ogemdl©
Geneva, Switzerland
April 2001
HIV Prevention Needs and Successes: a tale of three countries.
An update on HIV prevention success in Senegal, Thailand and Uganda
Table of Contents
Introduction
Uganda ........................................................................................................................... ............ 1
Fig. 1:
Fig. 2:
Fig. 3:
Fig. 4:
HIV prevalence among pregnant women. Selected sentinel sites,
Uganda, 1990-1996
HIV prevalence by age group, Nsambya
Percentage sexually experienced by current age (15-24 years old)
in 1989 and 1995
Percentage of sexually active men and women
who have ever used a condom. Urban Uganda, 1989 and 1995
Senegal
Fig. 5:
HIV seroprevalence trends in different populations
in Dakar, Senegal, 1989-1997
]
2
2
3
5
6
Median age at first sex for women in six African countries, 1997
Condom use with casual partners, reported by men, Dakar, 1997
Condom distribution in Senegal by the National AIDS Programme,
family planning services, and the condom social
marketing programme, 1988-1997
6
7
Fig. 9:
Frequency of STIs among women in Dakar, Senegal, 1991-1996
Thailand
Fig. 10: Substantial and sustained risk reduction in urban males
visiting sex workers 1 990-1 997
Fig.l 1: Risk reduction continues
Fig.12a: Risk reduction still continues
Fig.12b: HIV prevalence in northern Thai military conscripts, 1991-1998
Fig. 13: Comparison of increase in condom use with decline in
reported male STIs on a national scale, Thailand 1989 to 1994
Fig.14: Trend in HIV prevalence in 21-year-old Thai military conscripts
Fig.15: Reduction in male, female, and total STIs reported at
government clinics between 1985 and 1996
Fig.l 6: Percentage distribution of frequency of STD checks of SWs
by sector of employment — 1997
Fig.l 7: Increase in condom use with recent clients as reported by sex
workers at direct sex establishments, 1989-1997
Fig.l8: Percentage distribution of reported regularity of condom use with
casual customers by type of SE—1997
Fig.l 9: Percentage distribution of reported regularity of condom use with
regular customers by type of SE—1 997
Fig.20: Percentage of men using condoms every time by type of
partner in the past 1 2 months - 1997
Fig.21: Percentage distribution of risk status related to condom use by
sex workers who know somebody who has AIDS - 1997
8
9
Fig. 6:
Fig. 7:
Fig. 8:
Fig.22: HIV Infection in Thailand, Baseline Scenario
Summary.
7
11
12
12
13
13
14
14
15
16
16
17
17
18
19
iii
HIV Prevention Needs and Successes: a tale of three countries.
An update on HIV prevention success in Senegal, Thailand and Uganda
Introduction
In recent years we have learned a number of things about HIV prevention around
the world.
In industrialized countries where success has been achieved, HIV prevention
efforts need to be sustained among the general public and strengthened among such
groups as ethnic minorities.
HIV prevention is necessary even in the presence of advanced antiretroviral thera
pies. The cost of the drugs, the limited access to these therapies (and to drugs for oppor
tunistic infections in general), and the development of drug resistance remain important
issues, even in the wealthiest countries. In many areas, prevention programmes and
information need to be strengthened as many people mistakenly view antiretroviral thera
pies as a cure and therefore continue to engage in risky behaviour.
Success is not limited to industrialized countries. In developing countries, pre
vention activities aimed at changing behaviour and associated social norms can and do
work, not only on a large scale but also at national level. Examples of changes include
increase in condom use, reduction in visits to sex workers, postponement of first sex and
reduction in the sharing of injecting equipment among drug users.
To demonstrate this, data and experiences from three countries with differing
cultures and different levels of the epidemic are reported here. Uganda was hard hit
throughout the 1 980s, and has had almost two million cumulative deaths to date. Senegal,
on the other hand, has not been seriously affected by the epidemic. In Thailand, the
epidemic became prominent only at the end of the 1 980s but spread rapidly once it took
hold. These are three different situations, but behavioural change and some containment
of the epidemic were achieved in all three.
What are some essential features of effective programmes which are shared by
the three countries? In each one, national AIDS programmes share a package of common
features that UNAIDS regards as "best practice", namely:
□
□
□
□
□
Cl
□
strong political commitment at the highest level to dealing with the epidemic (this
ensures policies and funding to address the epidemic);
multisectoral approaches to prevention and care and, at government level, in
volvement by multiple ministries;
multilevel responses (at national, provincial, district and community levels);
effective monitoring of the epidemic and risk behaviours, and dissemination of
the findings both to improve policies and programmes and to sustain awareness;
a combination of efforts aimed at the general population and focused on groups
at high risk, at the same time;
implementation on a large scale;
integrated prevention and care.
HP*/ Prevention Needs and Successes: a tale of three countries.
An update on HIV prevention success in Senegal, Thailand and Uganda
Uganda
Uganda is one of the world's poorer countries and one of the most severely af
fected by the epidemic. Uganda has 21 million people, with less than 14% living in
cities. The gross national product per capita is equivalent to about US$ 240. Total preva
lence among adults is over 8%.
Fortunately, Uganda is also one of the African countries where the HIV epidemic
was recognized relatively early and so prevention efforts were started on a national level. ’
n
□
□
□
□
In 1986, the President publicly acknowledged the country's HIV/AIDS problem
and made a commitment to mobilizing efforts against it. A national budget for the
AIDS programme was established early in the epidemic.
The country adopted a multisectoral approach. The Uganda AIDS Commission
was set up in the President's office, and HIV/AIDS control programmes were
established in several government ministries, including the Ministry of Health.
Persons at different levels of society were involved, such as political, community
and religious leaders. The Islamic Medical Association of Uganda has supported
community education on HIV/AIDS throughout the country, including the distri
bution of condoms.2 Radio messages on HIV/AIDS were broadcast very widely.
Condom social marketing services, backed by USAID, were implemented coun
trywide.
HIV voluntary counselling and testing was made available extensively and out
side the formal health-care service.
In Uganda the best option for tracking the epidemic was sentinel surveillance
among pregnant women, with samples of blood taken routinely at antenatal clinics. Sur
veillance started in 1989 at six sites in major cities and has since covered the whole
country. The results are shown in Fig.1.
Fig. 1: HIV prevalence among pregnant women. Selected sentinel sites,
Uganda, 1990-1996
1 For more detailed information, see A measure of success in Uganda: the value of monitoring both
HIV prevalence and sexual behaviour, Case Study UNAIDS/98.8, Geneva, May 1998.
2 For further information, see AJDS education through Imams: a spiritually motivated community effort
in Uganda, Case Study UNAIDS/98.33, Geneva, October 1998.
UNAIDS
All these urban sentinel sites showed a significant decline in HIV infection during
the first half of the 1990s. In some cases, the percentage of mothers testing HIV-positive
almost halved.
This evidence is strengthened when the analysis is focused on the youngest
women—those aged 15-19 years. This limits distortions caused by ageing and by infertil
ity, and will actually be much closer to the incidence among the young.
Fig. 2: HIV prevalence by age group, Nsambya
40% HfV positive
O 1990
CZJ
1991
□
1992
□
1994
EZJ
1995
HI 1996
Age group
Fig. 2 focuses on Nsambya, a hospital in Kampala. Prevalence among pregnant
women aged 15-19 dropped from 22% in 1990 to 10% in 1996, after reaching a peak of
28% in 1 991. The steady drop for the youngest women suggests a real fall not just in HIV
prevalence but also in incidence.
Uganda conducted two large population-based surveys in 1989 and 1995 that
permit comparisons. Both surveys covered two urban areas—Kampala and Jinja—where
HIV surveillance was carried out over this period.
Very encouraging data arose from questions about behavioural change among
young people in 1995 when compared with their predecessors of the same age in 1989.
Fig. 3: Percentage sexually experienced by current age (15-24 years old)
in 1989 and 1995
2
HIV Prevention Needs and Successes: a tale of three countries.
An update on HIV prevention success in Senegal, Thailand and Uganda
The first finding related to delayed age of first sexual experience, as shown in Fig. 3.
The clearest difference between 1989 and 1995 can be seen at the left of the
figure. For the youngest, the 15-year-olds, the proportion of boys or girls reporting that
they had never had sex rose from around 20% to around 50%. Overall, age of sexual
initiation shifted upward.
Fig. 4: Percentage of sexually active men and women who have ever
used a condom. Urban Uganda, 1989 and 1995
The second finding related to the increase in condom use {Fig. 4).
Between 1989 and 1995, the percentage of sexually active men and women who
reported using condoms increased significantly. If the numbers are merged, the propor
tion of men who said that they had ever used a condom rose from 15% to 55%. Among
women, the total rose from 6% to 39%.
This steep increase in condom use occurred in all age groups.
In addition to these two large surveys, there have been numerous quantitative
and qualitative investigations into behavioural change in recent years, although on a
smaller scale.
In rural areas, the number of new infections is still high even among the younger
age groups. Obviously, a review of strategies and implementation for rural areas is needed.
However, even with this troubling situation a great deal has clearly been accomplished.
Uganda's experience can be summed up as follows:
□
□
First, sentinel surveillance indicates that the prevalence, and probably the inci
dence, of HIV infection has fallen among pregnant women in urban areas. Other
studies show falling prevalence for other groups, although not as strongly as this
one.
Second, surveys of sexual behaviour suggest that increasing condom use and/or a
delay in starting sexual activity play a key role in the decline of incidence.
3
HIV Prevention Needs and Successes: a tale of three countries.
An update on HIV prevention success in Senegal, Thailand and Uganda
Senegal
Much has been written about the need to intervene early to stop the spread of
HIV before it gets a grip on a population. Obviously, however, if a country intervenes
early and HIV infection rates stay low, it is difficult to say that the low rates were definitely
the consequence of the intervention.
Nevertheless, Senegal's HIV prevention programme has been extensive and con
tains the elements of an effective programme. There is good evidence that Senegal has
maintained one of the lowest rates of infection in sub-Saharan Africa by changing the
behaviour of many of its citizens. 3
Like Uganda, Senegal is not a rich country. It has 9 million people, with 44%
living in towns. Per capita income is below US$ 600 a year. Total HIV prevalence among
adults is estimated at about 1.8%.
Senegal has long emphasized prevention and primary health care. Reproductive
health and child health are well-established priorities. In addition, registered sex workers
are required to have regular health checks, and are treated for any curable sexually
transmitted infections (STIs) that are found.
What was the response in Senegal?
□
□
□
□
o
□
n
As in Uganda, politicians in Senegal were quick to move against the epidemic
once the first cases appeared in the second half of the 1980s.
Since 93% of Senegalese are Muslims, the government made efforts to involve
religious leaders. HIV/AIDS became a regular topic in Friday sermons in mosques,
and senior religious figures talked about it on television and radio.
Many other levels of Senegalese society joined in. By 1995, 200 NCOs were
active in the response, as were women's groups with about half a million mem
bers.
HIV prevention was included when sex education was introduced in schools.
Parallel efforts reached out to young people who are not in school.
HIV voluntary and confidential counselling and testing were made available.
Programmes were immediately put in place to support sex workers to persuade
their clients to use condoms.
STIs moved up the list of health priorities. Senegal was one of the first countries in
Africa to establish a national STI control programme that integrated STI care into
regular primary health services.
3 For more detailed information, see Acting early to prevent AIDS: the case of Senegal. UNAIDS Key
Material, June 1999.
5
UNAIDS
Those were the actions. What happened in epidemiological terms?
Fig. 5: HIV seroprevalence trends in different populations in Dakar,
Senegal, 1989-1997
1989 1990 1991 1992 1993 1994 1995 1996 1997
Again, sentinel surveillance was the best option for monitoring the disease, but
with more groups than in Uganda. In Fig. 5, the bottom line shows that HIV prevalence
among pregnant women was just over 1.4% at the end of 1996, with no significant trend
over time.
The next line represents male STI patients. Their HIV infection rates are higher,
but remained under 6%.
Female sex workers are probably at highest risk. The top line shows their HIV
prevalence levels rising significantly after 1989. Since 1993, however, especially in the
capital Dakar, they have remained stable at around 17%.
Some changes in behaviours resemble the changes seen in Uganda.
Fig. 6: Median age at first sex for women in six African countries, 1997
Fig. 6 tracks age at first sexual experience for women in five African countries.
The line that falls most steeply is that representing women in Senegal. In 1997, most
HIV Prevention Needs and Successes: a tale of three countries.
An update on HIV prevention success in Senegal, Thailand and Uganda
Senegalese women in their early 20s did not have sex until they were almost 1 9 or older.
For their mother's generation—the women who were between 40 and 49 in 1997—the
median age was closer to 16.
What about condom use? From virtually zero before the HIV/AIDS epidemic,
consistent condom use with casual partners in Senegal rose to 68% among men having
casual sex in 1997 (Fig. 7).
Fig. 7: Condom use with casual partners, reported by men, Dakar, 1997
The national HIV/AIDS programme has overcome the checks posed by some
traditional religious teachings. The programme achieved a dramatic rise in condom sales
and distribution.
Fig. 8: Condom distribution in Senegal by the National AIDS
Programme, family planning services, and the condom social
marketing programme, 1988-1997
■ 8 000 000
Number of. condoms distributed
7 000 000
Annual condom distribution rose from 800,000 in 1988 to 7 million in 1997 (Fig. 8).
Most were distributed free but some were sold at a social marketing price.
UNAIDS
It is unlikely that this rise would have happened without the education and condom
promotion campaigns to which men were exposed.
Fig. 9: Rates of STIs among women in Dakar, Senegal, 1991-1996
Fig. 9 is from a study of STIs among pregnant women in 1991 and 1996. It shows
big falls in infection rates for all STIs measured, especially trichomoniasis, from 30%
down to 18%.
This shows that HIV infection has remained low in Senegal since the start of the
epidemic and shows no signs of an upwards trend. But why?
Three major factors can be identified, namely:
□
□
□
People are choosing to have their first sexual experience at a later age (there is
also evidence that extramarital sex is relatively limited).
Condom use during extramarital sex, and especially during commercial sex, is
high.
STI control programmes are apparently quite effective.
The first two factors are strongly linked to the country's HIV/AIDS prevention
efforts. And the change in social norms, which is evident in delayed sexual activity, is
probably being reinforced by the AIDS prevention programme.
Clearly, much in the social structure and health services of Senegal before AIDS
favoured a successful response. In addition, strong political commitment and the imple
mentation of effective prevention activities helped keep Senegal's rates of HIV infection
among the lowest in sub-Saharan Africa.
HIV Prevention Needs and Successes: a tale of three countries.
An update on HIV prevention success in Senegal, Thailand and Uganda
Thailand
Few countries show the link between behaviour and HIV infection as clearly as
Thailand.4 Overall, behavioural changes have reduced the number of new HIV infections
each year from almost 143,000 in 1991 to 29,000 in 2000. 5
Thailand has a little over 60 million people, about 20% of whom live in cities.
The gross national product per capita is equivalent to about US$ 2700. HIV prevalence
among adults is estimated at about 1.9%, with higher prevalence in certain geographical
areas and among certain groups. Thailand's HIV prevalence is lower than that of Uganda,
but it means a similar number of people living with HIV/AIDS.
Until the end of 1987, ad hoc testing in men having sex with men, in female sex
workers and in injecting drug users (IDUs) revealed few HIV infections. Then in 1988,
rapid growth of HIV infections among IDUs first gave the Thai authorities a clue that a
problem was emerging. The prevention programme in the 1980s focused on knowledge
and fear; it was sporadic, lacked continuity and was aimed only at the so-called "high
risk" groups.
After the rise in prevalence among IDUs, Thailand quickly set up a national
sentinel system. In the first round of testing in June 1989, high infection levels were
detected among sex workers in the country's northern provinces. By June 1990, HIV
prevalence among brothel-based sex workers had risen to 15% nationwide. Prevalence
was also growing rapidly among young men.
In addition to the research for monitoring the epidemic, Thailand has conducted
three rounds of a national survey on sexual risk behaviours using a similar methodology
(in 1990 funded by WHO/GPA; in 1993 funded by the office of the Prime Minister; and
in 1997 funded by Ministry of Public Health and UNAIDS). The preliminary results of the
first national survey were presented rapidly to policy-makers, community leaders and the
mass media. The level of risk behaviours among groups of the Thai population was strikingly
high and made Thai society open its eyes to the HIV situation. This helped reinforce a
push for multisectoral, intensive and extensive prevention efforts.
In 1991, some key government officials, politicians, academics and AIDS activists
managed to increase government commitment. The strategies of the 1 980s were replaced
by a new approach—the so-called intensive and extensive prevention programme for
rapid nationwide implementation using combined actions by the mass media and the
community. Some of the guiding principles for the programme's implementation, again
based on the lessons learned during the 1980s, were that:
□
Focusing on populations with high risk behaviour, such as sex workers and injecting
4 For more information, see Relationships of HIV and STD declines in Thailand to behavioural change:
a synthesis of existing studies, Key Material, UNAIDS/98.2, 1998. See also Collecting lower HIV infection rates
with changes in sexual behaviour in Thailand: data collection and comparison, Cose Study, UNAIDS/98.15,
June 1 998, and The success of the 100% Condom Promotion Programme in Thailand: evaluation of the 100%
Condom Promotion Programme and the validation of the decline in trends for selected STDs, Institute for
Population & Social Research, Mahidol University, Thailand (funded by the Thai Ministry of Public Health and
UNAIDS, February 2000).
5 Projections for HIV/AIDS in Thailand: 2000-2020. The Thai Working Group on HIV/AIDS Projec
tion. Bangkok, June 2000.
9
UNAIDS
n
□
□
□
drug users (IDUs), is important but not enough—the general population and young
people are also critical. Emphasis was placed on the risk behaviour and
vulnerability of young people as well as on the more specific risk behaviour of
particular groups.
It is necessary to reach the population both extensively (on a broad level) and
intensively (through many channels at the same time).
Knowledge and awareness are important but are not sufficient; life skills training
(e.g. decision-making and negotiation), condom promotion and long-term
approaches such as changing social norms are also necessary.
Socioeconomic interventions were introduced to reduce vulnerability to HIV
infection; for example, increasing the opportunity for girls to continue their
schooling and to receive vocational training so that they are less likely to become
sex workers.6
Rapid implementation aimed at extensive coverage in a short time, with intensive
efforts between 1991 and 1993, created both a programmatic momentum that
was carried on by subsequent Thai administrations and a societal momentum by
which all regions of the country felt they had a part to play.
The effective nationwide prevention programme, which began in 1991, included
several elements:
□
□
□
□
□
Cl
Cl
□
□
The Prime Minister chaired the National AIDS Programme.
The Office of the Prime Minister took an active role in policy discussion, led the
national public education effort using government-run mass media (that is, public,
not private), and took part in monitoring.
The Parliament established a sub-committee on AIDS.
The National Economic and Social Development Board worked closely with the
Ministry of Public Health to integrate the National AIDS Plan into the five-year
National Development Plan.
The government AIDS budget increased drastically during the following years.
Each key ministry had its own AIDS plan and budget as well as a person as the
AIDS focal point.
All provincial governors led the AIDS programme in their respective provinces
through the provincial development planning system.
The business community, people living with HIV/AIDS, religious leaders and
other community leaders became very involved in contributing to policy
dialogue, resource mobilization and the local implementation of activities.
In Thailand, 1991 was the turning point on human rights protection for people
living with HIV/AIDS. HIV was removed from the list of diseases that required
notification to the health authority. The ban on entry to Thailand of people with
HIV/AIDS was lifted. A set of national policy guidelines to protect the rights of
people living with HIV/AIDS was issued. 7
One of the most striking effects of the national programme was shown in the
number of visits to sex workers. This is the behaviour most closely associated with HIV
infection in Thai studies.
6 For further information, see the Case Study UNAIDS/99.34E, Reducing girls' vulnerability to HIV/
AIDS: The Thai approach, June 1999).
7 Jon Ungphakorn and Werasit Sittitroi. The Thai response to the HIV/AIDS epidemic, AID
( Supplement), pp./Sl 55-S163.
10
a
1Oa/
,
HP/ Prevention Needs and Successes: a tale of three countries.
An update on HIV prevention success in Senegal, Thailand and Uganda
Fig. 1 0 shows the figures for urban men aged 20-24 and 25—29 who visited
sex workers. The proportion of the younger group who said they had visited a sex
worker in the past year fell to about 1 7% in 1993 from over 35% in 1990. It fell even
Fig. 10: Substantial and sustained risk reduction in urban males visiting
sex workers 1990-1997
Sources: Siftitrai et al., Survey of Partner Relations and Risk of HIV Infection, Thai Red Cross
• Thonflthqi at al. Media Effectiveness Survey, Mahidol University
Chamrotrithirong et at, Review of the 100% Condom Programme, Mohidol University
more sharply among those aged 25-29. Men aged 15—49 visiting sex workers dropped
from approximately 19% in 1990 to 9% in 1993. 8 The proportion has changed little
since 1993, but the lower levels have been sustained according to the 1997 survey.
An effect of this nationwide intensive and extensive prevention programme can
be seen in the drastic reduction in the number of Thai men having commercial sex not
only in Bangkok but also in all other regions.
Sustained increase in condom use is a major indicator of success in the Thai
prevention effort. Between 1990 and 1993, data from national surveys show a sharp
increase in consistent condom use among men who visited sex workers. This increase
occurred in Bangkok and in all four regions of the country.
8 Thai Working Group on HIV/AIDS Projection. Projections for HIV/AIDS in Thailand: 2000-2020.
Bangkok, June 2000.
11
UNAIDS
Another study in Bangkok (Fig. 11) shows that the percentage of males visiting
sex workers declined according to the data of 1993, 1994 and 1996 among all three
groups (STI clinic attendees, service workers and students).
Fig. 11: Risk reduction continues
Fig. 12a: Risk reduction still continues
• 100% of military conscripts in North Thailand
Source: Nelson et al., NEJM, 335:297-303,1996; Nelson et al.,
- HlY Infection in young men in northern Thailand, 12th World AIDS Conference, Genova 1998
__ ___________ :__________________________________________ ■
—_________________ ____________________________________________
How does behavioural change correlate with the prevalence of HIV and STIs?
Between 1991 and 1998, researchers found among military conscripts of northern
Thailand a reduction in visits to sex workers, lifetime history of visiting sex workers, and
HIV prevalence, while at the same time condom use with sex workers increased
dramatically ( Fig. 12a and 12b).
12
HIV Prevention Needs and Successes: a tale of three countries.
An update on HIV prevention success in Senegal, Thailand and Uganda
Fig. 12b: HIV prevalence in northern Thai military conscripts, 1991-1998
1991
1993
1995
1996
1997
1998
Source: Nokonaf a/.,HP/infection in young mon in Northern Thailand, 1991-1997,
12th World AIDS Conference, Geneva 1998 and personal communication
How do we link the epidemiological patterns with these behavioural changes?
The patterns of other STIs are independently related both to commercial sex and to HIV
infection. Logic suggests that condom use would be associated with lower rates of STIs.
That logic is borne out in Thailand (Fig. 13).
Fig. 13: Comparison of increase in condom use with decline in
reported male STIs on a national scale, Thailand 1989 to 1994
At the time of the study shown in Fig. 13, the intensive and extensive prevention
programme had been in effect nationally for six years. During that time, reported STI rates
in the country fell by over 90%, as did condom "non-use", which tends to change in step
with STI prevalence.
Major prevention packages were implemented side by side and each one reinforced
the achievement of the other. These were intensive media campaigns, peer education,
workplace AIDS programmes, life-skills training for young people, non-discrimination
campaigns, and the famous 100% condom programme in all commercial sex establish ments
13
UNAIDS
(which was accompanied by the distribution of free condoms and the campaign for
condom use among the general male population).
In this context, what happened to HIV prevalence on a national scale? Evidence
shows that it declined substantially.
Fig. 14: Trend in HIV prevalence in 21 -year-old Thai military conscripts
When military conscripts from all regions of Thailand were tested in 1999, a
considerably lower proportion of 21-year-old conscripts were found to be infected than
in the peak years of 1992—93 (Fig. 14). This indicates that very significant changes in
behaviour among young Thais have continued. A recent study shows that HIV prevalence
among 21-year-old conscripts had fallen to 1% by 1991 from a peak of 3.5% in 1992. 9
Fig. 15: Reduction in male, female, and total STIs reported at
government clinics between 1985 and 1996
’ The Armed Forces Research Institute of Medical Sciences
14
HIV Prevention Needs and Successes: a tale of three countries.
An update on HIV prevention success in Senegal, Thailand and Uganda
As in Senegal, the number of reported cases of new STIs may be an indicator of
recent sexual risk behaviour.
Thai government clinic data here suggest strongly that unprotected sex with highrisk partners continues to decline (Fig. 15). In 1985, about 400,000 people were
diagnosed with STIs, with men much more represented. The numbers began to fall sharply
around the time that the national AIDS strategy got under way. By 1996, the total was
under 50,000.10 An independent evaluation review in 1997 confirmed this decline through
data from population and drugstore surveys on self-reporting of STIs and sales of antibiotics.
The 1997 survey also showed that over 70% of sex workers in a range of establishments
(brothels, hotels, bars, massage parlours, restaurants) had STI checks at least once a week
(Fig. 16). STIs among sex workers were roughly at 25% in 1989 and fell steadily to 1.6%
in 1999."*
11
Fig. 16: Percentage distribution of frequency of STI checks of sex workers
by sector of employment - 1997
,0 In Thailand, STI prevalence data are available only for people who seek treatment at government
clinics. There is a sizeable private sector client base that is not included in these figures.
11 Thoi Working Group on HIV/AIDS Projection. Projections for HIV/AJDS in Thailand: 2000-2020.
Bangkok, June 2000.
15
UNAIDS
Fig. 1 7: Increase in condom use with recent clients as reported by sex
workers at direct sex establishments, 1989-1997 (data from 1995 to
early 1 997 are not available)
The 1997 survey shows that consistent condom use among sex workers in
creased from over 50% in 1990 to almost 90% in 1996 (Figs. 17, 18, 19).
Fig. 18: Percentage distribution of reported regularity of condom use
with casual customers by type of SE—1 997
The news is not uniformly good, however. Condom use appears to be lower
among men from rural areas, and among men with limited formal education. National
behavioural surveillance in the provinces revealed that only half the men reporting
commercial sex said they had always used a condom. As in the case of Uganda, different
or more intensive strategies appear to be necessary for rural populations.
The 100% condom programme was remarkably successful in expanding condom
use between sex workers and clients. Other, complementary programmes aimed at young
people and the general population also increased condom use in non-commercial sexual
relationships. This is especially important because of a shift in sexual behaviour away
from commercial sex towards more casual sex.
16
"I
HIV Prevention Needs and Successes: a tale of three countries.
An update on HIV prevention success in Senegal/ Thailand and Uganda
Fig. 19: Percentage distribution of reported regularity of condom use
with regular customers by type of sex establishment—1997
REGULARITY OF USE
Type of
never
used
almost
never used
sometimes
almost
used
always used
always
used
sex establishment
Brothel
4.5
2.1
92.4
|
Hotel
Bar/Karaoko
Massage parlour
0.3
Source: Institute for Population and Social Research/ Mahidol University, Thailand, 1997
The figures for condom use with minor wives (that is, mistresses), girl-friends and
friends are between 40% and 60% according to the 1997 survey (Fig. 20). The figures were
much lower in the 1990 survey. That represents a major change in behaviour between 1990
and 1997. There is a misconception that if people know someone who has AIDS this will
increase their level of consistent condom use. This does not, however, seem to be the
case in many African countries where HIV prevalence is very high and condom use
remains low. Successes in increasing condom use seem rather to be the result of intensive
intervention programmes.
Fig. 20: Percentage of men using condoms every time by type of
partner in the past 12 months - 1997
Portner
'
Wife ____ _
.......
Minor wife (mistress).
Percentage of use every time*
......
_
Fianc6e
---------- ----------- -.-------’Girl friend .—.-------- ■- - - —------------------ -------Friend
_____ -................
- .
Othorwoman ..........__ _______ . ... __ ...
Direct regular sex worker
......................
Indirect regular sex worker .. ........
.............
Direct temporary sex worker .... _____ ..____
Indirect temporary sex worker.
----. ,. ' Male
--------- ...
----------- .....
57.1
Male sex worker ___ ...>.■------- C------------- ;
H-5
66.7
„
37.9
40.3
66.2
78.4
89.0
84.6
* compared with
all those who
used
condoms
94.3
93.9
2 of 3
Source: Institute for Population and Social Research, Thailand, 1997
In Thailand, condom use during commercial sex increased rapidly between
1991 and 1993, during the first two years of the extensive and intensive prevention
programme. These increases in condom use occurred uniformly across the country,
both in regions where there were many people living with AIDS, such as the upper
north, and in regions were there were few, such as the north-east. Thus, during that
time, most people did not know anyone with AIDS but condom use increased anyway.
17
2
MATERIAL ON HIV/AIDS
SENT BY
»
MEDICAL MISSION INSTITUTE
UNIT FOR HEALTH SERVICES AND HIV/AIDS
SALVATORSTR. 22
D-97074 WURZBURG
GERMANY
June 2001
healthlink
WORLDWIDE
HIV
and safe
motherhood
Acknowledgements
This publication was compiled by (illy Rosser (midwifery consultant) and edited by Helen
Cressey, Healthlink Worldwide, AIDS and Sexual Health Programme. The section on infant
feeding does not reflect the views of Jilly Rosser in some key areas. It has been copy-edited by
Coral Jepson and Christine Kalume and designed by Ingrid Emsden.
Cover photographs by Danielle Baron/JHU/CCP Photoshare and Maggie Murray/Format.
Healthlink Worldwide would like to thank the following organisations and individuals for their
contribution towards this publication: Rachel Baggaley, Honorary Research Fellow, London
School of Hygiene and Tropical Medicine, UK; Marge Berer, Reproductive Health Matters, UK;
Marilen Danguilan, UNICEF, USA; Lynde Francis, International Community of Women Living
with HIV/AIDS, Zimbabwe; Petra ten Hoope-Bender, International Confederation of Midwives,
The Netherlands; Mavis Kirkham, Professor of Midwifery, University of Sheffield, UK; Metre
Kjaerby, Healthlink Worldwide, UK; Sian Long, Healthlink Worldwide, UK; Dr Hermione Lyall,
Department of Infectious Diseases, St Mary’s Hospital, London, UK; Dr Justin Mandala,
UNAIDS, Switzerland; Dr James McIntyre, University of Wirwatersrand, South Africa; Dr Kevin
O’Reilly, World Health Organisation, Switzerland; Gabrielle Palmer, UNICEF, USA; Dr Brian
Pazvakavambwa, UNAIDS, Switzerland; Naomi Rutenberg, HORIZONS, USA; Koenrad
Vanormelingen, UNICEF, USA.
Production and distribution of this publication has been possible thanks to the financial support of
The Ruben and Elisabeth Rausing Trust, UK; HIVOS, The Netherlands; the Swedish International
Development Agency (SIDA), and UNICEF, USA.
HIV and safe motherhood
Published by Healthlink Worldwide, Cityside, 40 Adler Street, London El 1EE, UK.
© Healthlink Worldwide 2000
Keywords: HIV prevention / safe motherhood / HIV infection I transmission - maternal / HIV
testing I infant feeding / breastfeeding
Any part of this publication may be reproduced without permission for educational and non-profit
use if the source is acknowledged.
Printed by Russell Press Ltd.
ISBN 0 907320 47 3
CONTENTS
Definitions
Introduction
Section
1
ii
1
Before parenthood
3
Avoiding infection 3
Reproductive rights and choices 3
Improving access to contraception 3
Abortion 3
Getting pregnant 3
Section
2
HIV in pregnancy 4
Mother-to-child transmission 4
Keeping all mothers healthy 4
Caring for women who know they are HIV positive 5
Section
3
Voluntary counselling and testing for HIV 6
Counselling 6
Testing for HIV 7
Section
4
Care during labour and delivery 9
General care during labour 9
Elective caesarean section 9
Antiretroviral therapy 9
Section
5
Infant feeding and HIV 11
International guidelines 11
Deciding whether to breastfeed 11
Essential information for HIV-positive women 11
Alternatives to breastfeeding 12
Exclusive breastfeeding 12
Stopping breastfeeding early 13
Section
6
What else can health workers do? 14
No need to feel helpless 14
Becoming more at ease with sexuality 14
Safe working practices 15
Making the most of limited resources 17
Section
7
Resources 18
DEFINITIONS
AIDS stands for Acquired Immune Deficiency
Syndrome. HIV destroys the body’s immune system,
leaving rhe body open to infections that it cannot fight
in the normal way. When this happens, a person has
AIDS.
Amniocentesis is a test for genetic abnormalities done in
hospital. A needle is passed through the abdomen of a
pregnant woman and into her uterus, to take a sample
of the amniotic fluid surrounding the baby.
Antibodies are produced by the body’s immune system
in response to an outside organism that causes disease,
such as a virus or bacteria. Antibodies are specific to
the particular virus or bacteria.
Antiretrovirals (ARV) are drugs that fight the HIV virus.
Artificial feeding means feeding a baby on breastmilk
substitutes. These can be any food or drink which is
used as a replacement for breastmilk, whether or not it
is suitable. Examples are infant formula, cow’s milk
and goat’s milk.
Asymptomatic is when a person has HIV infection, but
is well and has no signs or symptoms of HIV-related
illness.
CD4 count is a blood test that measures the number of
CD4 cells in a cubic millimetre of blood. CD4 cells help
to protect the body from getting infections. The CD4
count roughly reflects the state of a person’s immune
system. The CD4 count in a healthy, HIV-negative adult
is usually 600-1200 CD4 cells per cubic millimetre of
blood. HIV attacks and destroys CD4 cells, so the CD4
count of people with HIV usually falls over time. If the
CD4 count drops below 200 cells per cubic millimetre
of blood, there is a high risk of serious infection.
Combination therapy is drug treatment with two or
more different ARV drugs.
ELISA stands for enzyme-linked immunosorbent assay.
This is one of the blood tests done to find out if
somebody is HIV positive.
Exclusive breastfeeding is when a baby is given nothing
except breastmilk - no water, no juice, no other food or
drink. Exceptions are medicines and vitamins.
HIV stands for Human Immunodeficiency Virus. It is
the virus which causes AIDS. There are two types of
HIV: HIV-1 and HIV-2. This paper is only about HIV-1,
because HIV-2 does not usually pass from mother to
child.
HIV-positive is when somebody has become infected
with the HIV virus. The virus multiplies rapidly in the
blood, and antibodies are produced. A person is then
said to be HIV positive. Although she may have no
signs of illness, she can still infect others.
MTCTstands for mother-to-child transmission, and
means the same as vertical transmission.
ii
Monotherapy is drug treatment with only one ARV
drug (not a combination).
Opportunistic infections are the infections which people
with HIV/AIDS get because their immune systems are
damaged. These are infections which the persons’s
body would normally be able to fight, like thrush, or
which are only common among people with HIV/AIDS,
like pneumonia caused by pneumocystis carinii.
Perinatal transmission is any transmission from mother
to child which happens during pregnancy or delivery or
up to one week after birth.
Prophylaxis is the prevention of, or protection against
disease. For instance, if women are routinely given
antimalarial tablets in pregnancy to prevent, rather
than treat, malaria, it is called malaria prophylaxis.
Rapid assay testing is a test for HIV using a kit which
clinic staff can be trained to use. It gives an immediate
result on a blood test to show whether a person is HIV
positive, without the need for a laboratory. Some rapid
assay tests need refrigeration.
Resistance to an ARV means that the HIV in a person’s
body has changed so that the drug no longer works
against it.
Symptomatic HIV is when a person with HIV has
started to become ill with HIV-related illness.
Sexually transmitted infections (STIs) are infections
which can be passed from person to person by sexual
contact. HIV is an STI, so are gonorrhoea, syphilis,
chlamydia trachomatis, herpes simplex, tricho
moniasis, cytomegalovirus (CMV) and hepatitis B.
Unprotected sex means having sexual intercourse
without a condom. It also refers to other sexual
activities where there is a risk of HIV transmission
(oral sex, anal sex).
Vertical transmission is when the HIV virus passes from
an HIV positive mother to her baby. This can happen
during pregnancy, during labour and delivery, or
during breastfeeding.
Viral load is one of the tests done on the blood of an
HIV-positive person. It measures the amount of HIV in
the blood. If a person is HIV positive, a viral load
more than 100,000 is considered to be high, and less
than 10,000 is considered to be low. An undetectable
viral load means that there is not enough HIV in the
blood for it to be measured with the usual tests.
Window period is the time between a person becoming
infected with HIV and a blood test showing a positive
result. Because the blood tests look for antibodies to
HIV, rather than the virus itself, it can be up to three
months before the tests show a positive result. During
the window period people can transmit the HIV virus
to other people.
HIV AND SAFE MOTHERHOOD
INTRODUCTION
The health and wellbeing of women everywhere is of
great importance in its own right. It is also key to the
health and wellbeing of their families, communities
and societies. But every year, over half a million
women in developing countries die in pregnancy and
childbirth. The Safe Motherhood Initiative was started
in 1987 to improve maternity services and to protect
the health of mothers and their infants.
HIV presents an enormous challenge to safe
motherhood. In 1998, it was estimated that
approximately two million HIV-positive women
worldwide would give birth. In several major towns in
eastern and southern Africa, more than a quarter of
pregnant women are now HIV positive.
Women with HIV are more likely to have
complications during pregnancy and delivery, or
abortion. They are also more vulnerable to anaemia,
malaria, pneumonia, urinary infections, and
tuberculosis (TB). For women with symptomatic HIV,
pregnancy can also speed up the progress of their
illness to AIDS. In South Africa, about one in eight
maternal deaths are directly due to HIV, and it is a
factor in other maternal deaths, for instance from
bleeding.
It is estimated that in Africa and Asia, more than
two million children each year will lose their mother or
both parents to AIDS. These children can be at
especially high risk of poverty, neglect and early death.
When grandparents or older children are left to look
after orphans, they often lack the support or resources
to meet basic needs.
HIV can also pass from mother to child during
pregnancy, labour and delivery, or through
breastfeeding. It is not known exactly what proportion
of babies born to HIV-positive mothers will be infected
HIV AND SAFE MOTHERHOOD
themselves, but without any kind of intervention, it is
estimated that between 15 and 45 out of every 100
would be infected. Around 570,000 children aged 14 or
younger (most of them in sub-Saharan Africa) became
HIV positive in 1999, almost all from mother-to-child
transmission.
The prospects for infected children are not good.
Children who are HIV positive are over 20 times more
likely to die before the age of five than non-infected
children. A study in Rwanda found that, even with
frequent medical treatment, over a quarter of the
children with HIV in the study died before they were
two years old, and over half died before their fifth
birthday.
Good HIV prevention and care is an essential part of
safe motherhood. .Maternity services could play a
crucial role by improving care for pregnant women
with HIV and AIDS, and helping to reduce the spread
of HIV and AIDS before, during and after pregnancy.
Fewer resources will be needed if programmes work
together.
This briefing paper is for health workers in subSaharan Africa who care for mothers during and after
pregnancy and delivery. It will also be useful for health
planners, and anyone working with young people and
with women and men, providing information, advice
or counselling on reproductive health and parenthood.
The paper provides information on the issues raised
for Safe Motherhood by the high prevalence of HFV in
the region. It suggests actions that can improve care
and advice for all women, including those who are
HIV positive, as well as ways to reduce the risk of
mother-to-child transmission for those women who
know they are HIV positive.
1
i
BEFORE
PARENTHOOD
Young people, women and men, need advice about
HIV and about pregnancy long before they consider
becoming parents.
Health workers can play an important role in
educating people about HIV/AIDS and how they can
protect themselves against infection. This may involve
working with teachers, youth groups, women’s groups
and others, to help people to understand HIV better and
find ways to encourage and support behaviour change.
Improving women’s status in society is also crucial only then will women be able to negotiate with their
partners for safer sex.
K ttlciiiia
Avoiding infection
Role play helps young people develop their skills in negotiating
and is a good starting point for talking about HIV prevention.
Reproductive rights and choices
All women, regardless of their HIV status, should have
the right to choose whether and when to have children
and how many they would like to have. A woman who
knows she is HIV positive needs information about the
HIV-related risks of pregnancy for herself and her baby
and how they can be reduced. But she must still be free
to make her own decision about whether or not to have
children, and should be supported in her choice.
Improving access to contraception
In an ideal world, every pregnancy would be a wanted
pregnancy. All women and men should have access to
safe and reliable contraceptives, which include barrier
methods, such as condoms. Condoms prevent sexually
transmitted infections (STIs), including HIV, as well as
unwanted pregnancy.
Where women choose other ways to prevent
pregnancy, they should still be encouraged to use
condoms as well, to protect against HIV and other
STIs. Couples should also be advised to use condoms to
avoid infection throughout pregnancy, breastfeeding
and afterwards. Even when both partners are HIV
positive, they should still use condoms to avoid other
STIs and the possibility of re-infection with HIV.
Many women find it difficult to negotiate male
condom use with their partners and more femalecontrolled methods, such as the female condom, are
needed. The female condom is already available in
many parts of Africa, but often women find it
expensive to buy and difficult to use. Female condoms
HIV ANO SAFE MOTHERHOOD
need to be made more affordable and accessible with
better information on how to use them.
Abortion
HIV status should never be used as a reason for forcing
a woman to have an abortion. In many parts of Africa
abortion is illegal. In places where it is available, an
HIV-positive woman may decide to end her pregnancy.
If she does, she should be supported in her decision.
Any decision must be made freely, without pressure
from health workers or family members.
Getting pregnant
Getting pregnant involves a risk of transmitting HFV if
either partner has been exposed to infection. Couples
trying to conceive can minimise the risk of transmis
sion by only having unprotected intercourse (without a
condom) during the few days each month when the
woman is most likely to be fertile.
Research is being done to develop vaginal
microbicides (chemical substances that can be used in
the vagina to reduce transmission of STIs including
HIV). It is hoped that some microbicides will prevent
pregnancy by killing sperm, and also kill sexually
transmitted infections such as HIV. It is also hoped that
other microbicides will be developed which will kill
HIV and other STIs without killing sperm, so that
couples can become pregnant without risking HIV
infection. However, it is likely to be five to ten years
before any microbicides are on the market.
3
2
HIV IN
PREGNANCY
It is estimated that at the end of 1999, over 12 million
women in sub-Saharan Africa between rhe ages of 15
and 49 were living with HIV. As more and more
women become HIV positive, the number of pregnant
women with HIV also increases. In some areas, the
proportion of pregnant women who are HIV positive is
very high. For instance, information collected in a
number of antenatal clinics in major urban centres in
Botswana, Rwanda and Malawi between 1996 and
1998, found that more than 30 in every 100 pregnant
women were HIV positive.
Mother-to-child transmission
In developing countries, between one in three and one
in four babies born to HIV-positive women are born
with HIV themselves. Some of these babies become
infected during pregnancy, but most become infected
during the birth itself.
There appears to be a greater risk of HIV transmis
sion during pregnancy and childbirth if the mother has
a high viral load, or if her immune status is poor. Her
viral load will be; higher if she:
’ has become HIV positive just before or during her
pregnancy
o is continuing to be exposed to the HIV virus through
unprotected sex in pregnancy
♦ has symptomatic HIV.
A woman’s immune status may be linked to a high
viral load and can be assessed by taking a CD4 count.
The lower the CD4 count, the lower her immune status.
Poor diet, having another STI such as gonorrhoea,
chlamydia or syphilis or having other infections such
as malaria also appear to increase the risk of trans
mission from an HIV-positive mother to her baby. In
general, the better rhe health of the mother, the less
likely she is to transmit HIV to her baby.
Keeping all mothers healthy
All women need care and advice to help them remain
healthy during their pregnancy.
Protect women from HIV The only completely reliable
way to stop mother-to-child transmission of HIV is to
prevent all girls and women becoming HIV positive.
Involve fathers Talking to the male partner about HIV
and parent-to-child transmission, and explaining to him
what he can do to keep the pregnancy safe, can
encourage him to practise safer sex and protect the
health of his baby.
4
Women with HIV need information and support to help them
make the best choices for themselves and their babies.
Promote safer sex Even after becoming pregnant,
women should continue t;o practise safer sex (use a
condom) unless they are absolutely certain that their
partner is not HIV positive. Continuing to use condoms
will also prevent STIs. Keeping to one sexual partner
makes sex safer.
Test for, and treat, all infections An essential part of
care for all pregnant women is to look for, ask about
and treat, any infections the woman may have,
especially STIs, tuberculosis (TB) and malaria.
Prevent malaria In areas where malaria is common,
malaria prophylaxis is an important part of antenatal
care. It is even more important for women who are
HIV positive, because an infection can increase the risk
of transmission (see below). Pregnant women should
take whichever antimalarial drug is recommended in
their area, and sleep under an insecticide-treated bed
net where possible.
Promote a well-balanced diet Eating a good diet,
including all the necessary vitamins and minerals, is
important for all pregnant women, but especially those
who are HIV positive. It is difficult for many women to
decide what they eat - poverty, custom or their status
may mean they have few choices. Education about
which local foods are most nutritious and the
importance of pregnant women being well fed, needs ro
be ongoing. In many parts of sub-Saharan Africa,
traditional foods are often more nutritious and cheaper
than popular western diets.
Encourage rest For many pregnant women,
particularly where hard physical tasks are part of their
daily routine, getting enough rest can be difficult.
Supporting women to look after themselves during their
pregnancy, including resting whenever they can, is
important.
HIV AND SAFE MOTHERHOOD
2
Discourage smoking and the use of alcohol and other
drugs Smoking cigarettes, drinking alcohol and the use
of some drugs and herbal remedies can harm the
unborn child. HIV-positive women need to be
especially careful, because anything that damages their
health can lower their CD4 count.
Avoid invasive medical procedures Because of the risk
of HIV and other infections being passed to the baby,
procedures such as amniocentesis should be avoided
unless they are really necessary (see Section 4, page
10).
HIV IN PREGNANCY
TYPES OF ANTIRETROVIRAL THERAPY
Antiretrovirals (ARVs) are drugs that fight the HIV virus.
ARV therapy can help people with HIV stay healthy.
Combination therapy
ARVs are usually given in combination, because different
ARVs fight HIV in different ways and are therefore more
effective when used together. This is known as
combination therapy. (See Resources for where to find
more information on ARVs).
Avoid blood transfusions Blood transfusions are still a
Reducing mother-to-child transmission
source of HIV infection in some parts of Africa and
should be avoided unless they are absolutely essential.
Short courses of treatment (using a single drug, known
Provide voluntary counselling and testing for HIV (see
Section 3, page 7) Many women do not know their
HIV status and may wish to find out during pregnancy.
Knowing their status can help women to make
decisions that reduce the risk of transmitting HIV to
their baby. Confidentiality is essential if women arc to
be encouraged to take up services offered and avoid the
risks of their status becoming public.
as monotherapy) can be given to 'women in the late
stage of pregnancy and/or during labour and delivery, in
order to reduce the risk of passing HIV to the baby.
Sometimes drugs are also given-to the baby in the first
week of life. This short course treatment will not be of
any benefit to the mother's own health, but will not harm
it either. (See Section 4, pages 10 and 11 for more
information).
Post exposure prophylaxis for healthworkers
ARV drugs can also be used for post-exposure treatment
Caring for women who know they
are HIV positive
of health workers, in the event of an accidental needle
stick or other injury (see Section 6, page 18).
For women who know they are HIV positive,
additional care may be available.
Antiretroviral therapy (see box) Most women in sub-
Saharan Africa do not have access to long-term
combination ARV treatment for their own health or the
necessary support services to ensure its correct use. If
an HIV-positive woman is on combination therapy, she
should continue to take it during pregnancy after
talking to her doctor about any changes which might
be needed.
combination ARV therapy is not available for women,
many women do have access to treatments for HIVrelated infections such as TB and Herpes zoster. There
are also plenty of locally available, relatively cheap
and effective treatments for symptoms of opportunistic
infections, such as diarrhoea, weight loss and skin
infections.
Health workers need to be aware of what treatments
women in their community are using - including
traditional treatments - so that they can promote ones
which are effective and warn women against false and
dangerous treatments.
Providing a safe, supportive environment in which to
raise concerns and fears is an important part of care,
and can also help HIV-positive women stay healthy.
HIV AND SAFE MOTHERHOOD
Giacomo Pirozzi/Panos Pictures
Treatment of HIV-related infections Even if
Subsidised pharmacies are one way to improve access to
antiretroviral drugs.
5
'
TESTING FOR HIV
The majority of women in sub-Saharan Africa do not
know their HIV status. But if they are to make
appropriate choices about how to prevent their children
from becoming infected, they need to have access to
affordable confidential and voluntary counselling and
testing. Counselling and testing should be offered to
both the woman and her partner. Both parents are
responsible for preventing HIV transmission to their
children, not just the mother. Women, however, should
never be pressured to include their partner in
counselling and testing if they do not wish it.
AfafQtie Afurr.iy/Form.H
<
VOLUNTARY
COUNSELLING AND
Pre-test counselling of couples, such as here in Zambia, can help
the couple discuss important issues together.
Counselling
HIV counselling is a confidential and supportive
dialogue between a person and a trained counsellor. It
should focus on both the physical and emotional
wellbeing of the person, and help them to make the
decisions that are right for them. Counselling is not the
same as giving advice or telling people what they
should do. The counsellor’s role is to listen to the
individual concerns, raise issues that need to be
considered, and provide information, emotional
support and appropriate referral. Counsellors should
avoid judging the person or their partner.
Counselling must be confidential - the person must
be confident that the counsellor will not talk to
anybody else about what they have discussed together.
But this does not mean that counselling must only be
between one individual and the counsellor. It may
sometimes be better to counsel people together with
their sexual partner. In societies where decisions about
health and welfare are taken by the family, shared
counselling with other family members can be helpful.
Confidentiality is just as important in this situation.
The counsellor may be a health worker such as a
midwife or a nurse, or may be a layperson. Peer
counsellors - such as people who are themselves HIV
positive - can be very valuable and health workers
should welcome their help and involvement. Whoever
takes on this role needs to be specially trained and to
be a good listener. Counselling should be more about
listening than about talking.
Pre-test counselling
Anyone thinking about having an HIV test should
always have pre-test counselling. This is not only to
ensure that the man or woman gives their informed
consent to the test, but so that they have the chance to
consider the impact that a positive result will have on
their life and the'life of their family. If, after
counselling, rhe person decides not to have a test, the
6
counsellor has no reason to pressurise them. The
following guidelines may be helpful:
■ Be in a private area for counselling, where you will
not be disturbed or overheard.
• Assure the person that everything said is confidential
and that you will not talk to anyone else about it.
(You could have a poster on your wall making this
clear and showing your commitment).
> Talk through the reasons for HIV testing - theirs and
yours. Look at both the benefits and the
disadvantages.
J Ask questions in a sensitive way to find out about
current and previous risk behaviour. Remember that
they may not know about their partner’s risk
behaviour.
» Offer information about HIV and AIDS.
» Offer information about the HIV antibody test,
including information about the ‘window period’ of
infection (this is the time between becoming infected
and a blood test showing positive results).
♦ Go through the implications of a positive test result
for the person and their family.
» Discuss the person’s possible responses to a positive
test result. They can think about who they would tell
and where they might get support.
> Be aware of what the person’s concerns are and let
these guide the discussion. For example, if a woman
is being counselled and already has children, her
major concern may be what will happen to them if
she is HIV positive.
> Go through the implications of a negative test result.
s Provide information about how the test is done, how
long before the results will be ready, and how they
should find out the results.
» Give enough time for them to think about whether
or not they want to have the test.
» If they decide to have the test, obtain informed
consent.
HIV AND SAFE MOTHERHOOD
i
If the result is negative
• Deal with the feelings arising from a negative result
and explain about the ‘window period’.
> Discuss ways to prevent HIV infection through safer
sex and the importance of remaining negative for the
rest of the pregnancy, during breastfeeding, and
afterwards.
If the result is positive
■ Tell the person as clearly and gently as possible.
Deal with their immediate feelings and explain the
need for a supplementary test to confirm the result.
Give them time to understand and discuss the result.
• Provide information in a way that they can
understand, give emotional support and help them to
discuss how they will cope.
■ Discuss how the person plans to spend the next few
hours and days.
Identify what support they have.
Discuss who they want to tell about the result. Find
out if they intend to tell their partner, help them to
decide whether or not to tell them and, if
appropriate, how to tell them.
J Go through rhe ways they can take care of their own
health and let them know about any available
treatment.
f For a pregnant woman, go through the ways to
reduce the risk of transmitting HIV to her baby
during pregnancy, labour and after the birth.
o Discuss how she will feed the baby and the
importance, if she breastfeeds, of exclusive
breastfeeding.
» Identify what difficulties or problems the person
foresees and discuss how to deal with them.
’ Encourage them to ask questions.
» Refer the person, where possible, to a community
support organisation and for follow-up care and
counselling.
» Encourage them to return for another session when
they have had time to take in some of the
information they have just heard. If appropriate,
some information could be written down as the
person is unlikely to be able to remember everything
that was said.
(also called seropositive or HlV positive).
1 he test result may be negative if the person has
been infected only recently. It can take up to three
months from the time of infection for antibodies to be
produced. This is known as the window period. Anyone
who might have become infected in the last three
months should take a second test three months after the
first test.
Until recently, the most commonly used antibody test
was the ELISA (enzyme-linked immunosorbent assay).
ELISA testing needs skilled technical staff, equipment
in good order, and a steady power supply. Now, simple
or rapid assay tests are used more widely. These are
quicker and easier to use than ELISA tests, and can be
used for on-the-spot testing. They do not need highly
trained staff or expensive laboratory equipment,
although some do need refrigeration.
It is better to use a combination of tests to be sure of
the results. The price of ELISA and other screening tests
range from about LSS0.45 to S2. Using a combination
of rapid tests cost about USS5 per person.
Deciding whether to be tested
Most women living in the developing world do not
have a choice about whether to be tested for HIV,
because the test is not available to them. It is thought
that only one in twenty women in the developing world
have been tested and know their status.
For those women who do have a choice, deciding
whether to have a test should be done very carefully.
The health worker should not try to persuade the
woman to have the test - it should be a decision which
she takes freely. Because of the fear and
misunderstanding that surrounds HIV and AIDS, there ■
is a lot of stigma towards HIV-positive people.
There are benefits and risks of resting, and these will
vary for each woman. Some of the possible benefits of
Giacomo Piruzzi/Panus Pictures
Post-test counselling
Counselling after an HIV test is essential, whether or
not the result is positive. Always meet with the person
to give the result as soon as possible after the test.
/Gt/TARf counselling ano TESTING FOR HIV
Testing for HIV
What is an HIV test?
Testing for HIV is done on a blood sample. Most tests
look for antibodies to the virus in the blood. Antibodies
are produced by rhe body as it tries to fight the HIV
virus. If no antibodies are found, the person is antibody
negative (also called seronegative or HIV negative). If
antibodies are found, the person is antibody positive
HIV ANO SAFE MOTHERHOOD
Testing blood samples for HIV.
7
j
/ULUm inK ( LUUHJCLLilHj AiiU ICJUN6 rOE Ml'/
worker. Ill health may lead to me losing my job, which is a
major worry. I see patients suffering and it is an indication
of what I may face in the future. I always think about what
people may say about me. However, knowing about HIV and
AIDS does help me practise positive living.'
Health worker, Uganda
Being tested without consent
In some.places, women find out they are HIV positive
through routine testing during antenatal visits, without
having been given adequate pre-test counselling and
without their consent. This should be avoided if at all
possible, but if a healthworker is meeting a woman for
the first time after she has already been tested, she will
need a particularly sensitive approach when being told
her results.
O H M m i 11
‘My first husband died of what I suspect was AIDS. I think I
must have the virus too, especially when I know that we
were having sex right throughout even in the month he
died. I don't want to be told I've got it - even though I
Pregnancy is the time when couples may want to think about
being tested for HIV.
suspect it. It would break by heart to know for certain I
would go through all that suffering like my husband.'
a pregnant woman knowing she is HIV positive are
that she can:
> take the measures available to her to keep herself
healthy for as long as possible
5 decide, in countries where abortion is available,
whether to continue the pregnancy
* take appropriate steps to reduce the risk of
transmitting HIV to her baby
9 tell her sexual partner(s) that she is HIV positive, so
that they can be tested too.
Some of the possible risks of knowing that she is HIV
positive are:
» her family may blame her for bringing HIV into the
family and may react violently or make her leave
her home
a she may be stigmatised and looked down on by her
neighbours and by health workers (if her HIV status
is known about)
* she may become anxious and depressed.
Even where HIV tests are available to all pregnant
women, many choose not to have the test. And after
having the test done, some women will not return to
find out the result.
'My partner died six years ago. Before he died we talked, and
he agreed, on my suggestion, to have an HIV test. We both
took the test and were both diagnosed positive. Hell broke
loose, but we got counselling and accepted the situation. I
29 year old woman, Zambia
Testing babies
When babies are born they have their mother’s
antibodies in their blood. So if their mother is HIV
positive, the baby’s blood will often be positive too,
until the baby is about 18 months old. If they do not
have the virus, the mother’s antibodies go away by this
time. So antibody tests cannot tell if babies are
themselves infected with HIV until the age of about 18'
months. If an earlier test is negative, however, it does
mean that the child is not infected.
There are tests which can give an accurate result
earlier (such as PCR tests) but these are expensive and
not usually available in developing countries.
Where to be tested?
Counselling and testing can be offered as part of an
antenatal service or as a separate service. There are
advantages in both types. Using the antenatal services
may be more convenient for women and so increase the
uptake of testing. But in a separate service there will
often be links to ongoing support services for people
living with HIV and AIDS. This will mean that
continuing care for HIV-positive women may be
available. If a woman is tested elsewhere and is found
to be positive she should be encouraged to share the
information with the antenatal services in order to
ensure that she is given appropriate care and advice.
have since faced problems as a human being and as a health
8
HIV AND SAFE MOTHERHOOD
4
CARE DURING
LABOUR AND
DELIVERY
All women, whether they are HIV positive or not,
should be offered good care and support through their
labour and delivery. For women who are known to be
HIV positive however, there may be additional types of
care or treatment available which can help to reduce
the risk of mother-to-child HIV transmission. Health
workers have no reason to be afraid of looking after
HIV-positive women. Universal precautions for
infection control should be used for all deliveries,
whatever the woman’s HIV status, and if used properly,
will minimise the risk of HIV infection for the health
worker during the delivery (see Section 6, page 17).
Many women do not know their HIV status, so the
following advice on care during labour and delivery'
should be followed for all women. However, inter
ventions specifically for HIV-positive women, such as
ARV therapy (where it is available), will only be
possible where women can find out their status and
have access to confidential voluntary counselling and
testing (see Section 3, pages 7-9).
General care during Labour
Keep the skin intact Avoid, as far as possible, all
practices that break the baby’s skin or increase the
baby’s contact with the mother's blood, for example,
episiotomy and fetal scalp electrodes (for listening to
the baby’s heart beat).
Keep the membranes intact The risk of HIV being
transmitted to the baby increases after the membranes
have been ruptured (‘waters broken’) for more than
four hours. It follows that it is better if the health
worker does not rupture rhe membranes (‘break the
waters’) unless there is a very good reason for doing so,
as this opens up a route for HIV and other infections to
reach the baby.
It is already known that it is better not to do more
vaginal examinations during labour than absolutely
necessary, and this is even more important when the
membranes have ruptured, as it increases the risk of
infection to the mother and baby. The risk of
transmitting infections may be reduced by washing the
vagina (see box).
labour begins), the risk of HIV transmission is reduced
by half. In resource-rich settings, elective caesarean
section is becoming a routine part of care for HIV
positive women.
However, the situation is very different in many
parts of sub-Saharan Africa. In resource-poor settings,
the risks of serious complications after a caesarean
delivery may outweigh the potential benefits. This is
particularly true for HIV-positive women who are more
vulnerable to other infections and whose wounds may
be slow to heal. All women who have a caesarean
delivery should be given antibiotics to prevent
infection, whether they are HIV-positive or not.
Antiretroviral therapy (ARV)
Antiretroviral therapy (ARV) is one of the most effec
tive ways of reducing the risk of mother to-child trans
mission, but it is also the most expensive. The drugs
work by reducing the viral load in the mother, making
it less likely that she will pass on HIV to her baby.
Several different regimens for short courses of ARV
drug treatment to reduce mother-to-child transmision
during pregnancy and delivery have been studied, and
these are summarised in the table on page 11. Further
research is needed to find out whether longer treatment
of infants following delivery can prevent transmission,
whether mothers breastfeed and not.
Decisions on the appropriate drugs to use will be
made by health planners and policy makers according
to which is the most affordable and cost-effective
option. The most recent research does suggest,
however, that single-dose nevirapine given to the
woman at the onset of labour and then to the baby,
may offer the most affordable option for many
countries. For example, in order to treat all HIV
positive pregnant women in Uganda, the costs for
nevirapine would be USS640,000 per year while for
zidos udine the cost would be US$21,450,000.
WASHING THE VAGINA
Known as 'vaginal lavage', this technique consists of
cleaning inside the vagina with a disinfectant such as
chlorhexidine hydrochloride shortly before the baby is
born (when the woman begins to push). Research shows
that vaginal lavage reduces the risk of HIV transmission
to the baby when the membranes have been ruptured for
Elective caesarean section
If the baby is delivering by elective caesarean section
(a planned caesarean delivery which is done before
HIV AND SAFE MOTHERHOOD
more than four hours, but not in other cases. It also
seems to reduce other types of infection in the baby.
More research is being done on this at the moment.
9
Summary of short-course antiretroviral treatments for prevention of mother-to-child transmission
NAME BY
WHICH STUDY
IS KNOWN
DRUGS
USED
STUDY
LOCATION
From
36 weeks
TREATMENT REGIMEN
During labour
1 week
postpartum
NOTBREASTFEl
CDC Thailand
PERCENTAGE TRANSMISSION FROM MOTHER TO CHILD PERCENTAGE REDUCTION
Active group
Placebo group
IN MOTHER-TO-CHILD
(receiving treatment) (not receiving treatment)
TRANSMISSION
ja. 2 n
Thailand
- -e- z ;
BREASTFED j':‘ '■
Zidovudine 300mg
(ZDV)
2 x daily
,e^ .•« ■
r;Ht.
-'■'S
.it
■:
300mg
every hour
None
9.4%
18.9%
50%
___ ..."
'.
Cote D'Ivoire
Zidovudine
300mg
2 x daily
300mg
every 3 hours
None
None
15.7%
21.5%
.24.9%
30.6%
37% (3 months)
24% (18 months)
ANRS Abidjan' Cote D'Ivoire
and
Burkina Faso
Zidovudine
300mg
2 x daily
600mg
at onset of
labour
300mg
2 x daily for
mother only
16.8%
22.8%
25.1%
30.1%
38% (3 months)
30% (15 months)
PETRA A
South Africa,
Tanzania and
Uganda
Zidovudine
and
Lamivudine
(3TC)
300mg ZDV
and
150mg3TC
2 x daily
300mg ZDV
every 3 hours
and
150mg 3TC
every 12 hours
ZDV and 3TC
every 12 hours
for mother
and baby
7.8%
16.5%
53% (6 weeks)'
PETRA B
South Africa,
Tanzania and
Uganda
Zidovudine
and
Lamivudine
None
As above
As above
10.2%
16.5%
38% (6 weeks)
NVP HIVNET
Uganda
Uganda
Nevirapine
(NVP)
None
Single dose
200mg of
NVP at onset
of labour
None for mother
but single dose
of NVP 2mg/kg
for baby at
2-3 days old
11.9%
13.1%
21.3%
25.1%
44% (6-8 weeks)
48% (14-16 weeks)
CDC Abidjan' ’
HIV AND SAFE MOTHERHOOD
1
Wiktor et al.. Lancet 1999; 353: 781-5, with update on follow up data from presentations at Montreal MTCT
Conference
2
Dabis et al, Lancet 1999; 353: 786-92, with update on follow up data from presentations at Montreal MTCT
Conference
INFANT FEEDING
AND HIV
For anyone working with mothers and infants, it has
been distressing to learn that HIV can be transmitted
through breastmilk, because the promotion and support
of breastfeeding has been so important in reducing the
number of infant deaths from diarrhoeal and
respiratory infections and from malnutrition. The
situation has left many unsure about what they should
be doing and saying about breastfeeding in places
where HIV prevalence is high.
It is estimated that out of every 100 children
breastfed by HIV-positive mothers, 14 (or one in seven)
will become HIV positive through breastfeeding. If
mothers are newly infected while breastfeeding, the
infection rare from breastfeeding is even higher - 29 in
every 100 children, or more than one quarter of the
children will become HIV positive. A recent study
showed that the number of infants who get HIV from
their mothers could be reduced by 40 per cent if HIVinfected women avoided breastfeeding.
International guidelines
In 1997, the WHO, UNAIDS and UNICEF made a new
policy about HIV and infant feeding. It says that where
adequate alternatives are available and the risks
associated with artificial feeding can be minimised,
HIV-positive women should be advised not to
breastfeed because of the risk that infants can become
infected through breastfeeding.
In many of the larger towns and cities across subSaharan Africa, at least amongst the more affluent and
well-educated families, HIV-positive women can get
access to breastmilk substitutes and can ensure that
feeds are prepared safely. But for many women, there
will be no safe and economic alternative to
breastfeeding. The risk to the infant of early death
because of not breastfeeding in such circumstances is
likely to be greater than the risk of HIV transmission.
Deciding whether to breastfeed
Women everywhere have the right to be given the
information they need to make an informed decision
about whether or not to breastfeed, according to their
individual circumstances.
Women who choose to breastfeed need support to ensure their
baby is properly attached.
breastfeed their baby with confidence (or near
confidence, see page 2 for information on the window
period), provided rhe} take care not to become infected
while they are breastfeeding.
What increases the risk of HIV through
breastfeeding?
The risk of HIV transmission through breastmilk is
higher when a woman:
> becomes infected with the virus during pregnancy or
while breastfeeding
J shows signs ot HIV-related illness (AIDS) - this is
because she has a high viral load, and because her
CD4 count will be low.
Breast problems such as cracked nipples or breast
infection (mastitis may also increase the risk, but
further research is needed to confirm this.
Getting tested
Many women do not know their status. Voluntary
testing and counselling services should be made more
widely available to enable women to make an
informed decision about the best feeding option for
them and their baby.
Women who know that they are HIV negative can
HIV AND SAFE MOTHERHOOD
Essential information for
HIV-positive women
For HIV-positive women, it is essential that they are
given all the information they need to make an
informed decision about infant feeding.
11
can put her, and her family, at risk of social exclusion
or even violence.
Once a woman has made a decision about which
method of infant feeding is best for herself and her
baby, she should be given support and advice so that
she can do this as safely as possible. (See ‘Alternatives
to breastfeeding’ and ‘Care and advice to breastfeeding
women’).
Maggie Murray
Alternatives to breastfeeding
HIV-positive women need ongoing support with
decisions about infant feeding.
o There is a one in seven risk of an HIV-positive
woman passing the virus to her baby through
breastmilk.
® Children who are HIV positive are much more likely
to die before the age of five than non-infecred children
and may suffer from frequent illness during their
childhood.
s Mixed feeding (giving other foods or drinks as well
as breastmilk) seems to have rhe highest risk of HIV
transmission. If a woman chooses ro breastfeed she
should breastfeed exclusively for at least the first three
months, which means giving no other drinks or food
(see box, page 14).
s Breastfeeding protects babies against infections other
than HIV, and is nutritionally, the best and most
hygienic form of infant feeding. In countries where
malnutrition and infectious diseases are the main cause
of infant deaths, infants who are not breastfed are more
likely than breastfed babies to die from diseases such as
diarrhoea and acute respiratory infections.
o Breastmilk alternatives - formula or animal milk can be very expensive. For example, in Zimbabwe, the
monthly cost of formula milk for a baby would be
around Zimbabwe S250-300, about the same as the
monthly minimum wage.
■» Safe and hygienic preparation of breastmilk
alternatives requires access to adequate supplies of
clean water and fuel, and knowledge about how to mix
feeds correctly. Health workers have an important role
in ensuring that women have good information and
support to help them to prepare feeds safely.
e Cup feeding, rather than bottle feeding of breastmilk
substitutes, is recommended ro reduce the risk of
contamination.
• Exclusive breastfeeding protects against pregnancy.
If a woman decides not to breastfeed, she needs to have
access to safe and reliable contraception.
• Not breastfeeding may signal to others that a mother
has HIV, and she may wish ro keep her status
confidential. The public disclosure of a woman's status
12
» Commercial infant formula provides the best mix of
nutrients for infants who cannot have breastmilk. But it
is expensive if bought commercially, and is not an
option for many mothers at the moment. Feeding an
infant for six months requires on average 40 x 500g
tins (44 x 450g tins) of formula. There are efforts being
made to reduce rhe price of commercially prepared
infant formula and to make it more widely available.
This would mean that HIV-positive women who decide
not to breastfeed would be able to give their babies a
safe and nutritionally adequate alternative to
breastmilk, whatever their economic circumstances.
e Home-prepared formula - made with fresh animal
milk, dried whole milk or unsweetened evaporated
milk. These milks must be modified to make them
suitable for infants. For example, to prepare fresh cow’s
milk: mix lOOmls milk with 50mls of water and two
level teaspoons of sugar, and boil. Micronutrient
supplements should also be given, because animal
milks contain insufficient iron and zinc, and sometimes
vitamin A and folic acid.
a Expressed breastmilk - this must be boiled (to kill
the virus-) and then cooled immediately by putting it in
cold water or a refrigerator.
• Breastmilk banks - in some areas donated
breastmilk is used for short periods, for example, to
feed sick and low birth weight babies in hospital.
Donors, should be tested for HIV and the donated milk
pasteurised before use.
• Breastmilk from another woman who can breastfeed
(known as a wet nurse) and who already knows that
she does not have HIV. This is often the grandmother.
Women who act as wet-nurses, must be given
information about how to practise safer sex, to make
sure they remain HIV negative while breastfeeding the
infant.
Exclusive breastfeeding
For women who decide that breastfeeding is still the
best option for them, it is important that they exclusive
ly breastfeed, for at least the first three months. This
means giving nothing at all to the baby from the
moment he or she is born except breastmilk - no water,
no tea, no formula, no honey, no juice, no porridge and
no dummies.
HIV AND SAFE MOTHERHOOD
5
Recent observations from a study in Durban, South
Africa, found that mixed feeding, where infants were
breastfed but were also given other drinks or food in
their first three months, carried the highest risk of HIV
transmission through breastmilk. These results have not
been confirmed by other studies and more research is
urgently required.
It is not clear exactly why mixed feeding puts the
baby at higher risk of becoming infected with HIV, but
it may be because anything except breastmilk can
damage the lining of the baby’s stomach and intestines.
Once the baby’s intestines have been damaged, then the
natural protection against all infections, including HIV,
is lost.
When women cannot breastfeed exclusively
Mothers cannot always breastfeed exclusively. These
mothers face difficult decisions about how to feed their
babies, whether they are HIV positive or not. Each
must do their best according to their own circumstances,
depending on what food is available, who is caring for
the baby, how old the baby is, and so on. For women
who are not HIV positive, the best advice is for them to
carry on breastfeeding the baby as much as they can;
during the night, before going to work, after coming
back from work, on days off. During work hours
breastmilk will need to be substituted with the most
nutritional, cleanest food and drink possible.
For women who know they are HIV positive and
have decided to breastfeed, going back to work means
that they cannot exclusively breastfeed their babies.
Their babies may then be at a higher risk of becoming
HIV infected through mixed feeding.
Stopping breastfeeding early
There is much discussion about when, and how, to
wean the babies of HIV-positive mothers. HIV can be
transmitted through breastmilk at any time - even
when the baby is over six months old. Some people
think that it might be best to wean the baby from the
breast at six months of age. This is because the main
HIV AND SAFE MOTHERHOOD
INFANT FEEDING ANO HIV
The care and advice to give HIV-positive women who
decide to breastfeed is the same as to other
breastfeeding women:
1 Breastfeed within the first hour of birth, so that the
baby gets the full benefit of colostrum with all its antiinfective properties. HIV is present in higher
concentrations in colostrum, but there is no evidence
to show an increased risk of transmission.
2 Give nothing but breastmilk for the first four to six
months of life. Breastmilk will meet all the babies'
needs for nutrition up to the age of six months and
protects against infections.
3 Make sure the baby is 'attached' properly when
breastfeeding. This means that the baby has got
enough of the breast in its mouth for feeding not to
hurt. Good attachment prevents cracked and sore
nipples.
4 Use a condom when having sex. For women who are
already HIV positive, this may help to prevent
reinfection-with HIV or infection with another STI and
thus keep down the viral load and reduce the risk of
HIV transmission.
5 Seek treatment for infections, particularly malaria, TB,
other chest infections and STIs. This will help to keep
the mother healthy and able to breastfeed and, in HIV
positive women, may help to keep the C04 count up.
benefits of breastfeeding are in the earliest months and
the baby can cope better with other foods after six
months.
More research is needed to find out more about the
importance of breastfeeding to the health of babies
after they reach six months, and the time at which the
risk of HIV transmission through breastmilk is greatest.
It is also important to look at how acceptable early
weaning is to mothers and babies.
13
WHAT ELSE
CAN HEALTH
WORKERS DO?
Health workers can do many things to improve the
services they offer, and reduce the spread of HIV
among women and their families. This may involve
providing information and services or improving their
own skills in dealing with rhe sensitive issues of HIV
and sexual health.
No need to feel helpless
if you work in a health service with very little money
to spend, it is easy to feel helpless in the face of HIV
and AIDS. Even if you cannot provide ARV therapy
for the HIV-positive pregnant women in your area,
there is still plenty you can do:
Make sure all young men and women are well
informed about HIV and how to keep themselves safe.
This may include getting involved in schools or with
youth groups and organisations.
Make condoms available as widely and as cheaply
as possible and promote their use through bars, clinics,
markers, grocery shops, truck stops and so on. They
are still the best way of preventing HIV spreading.
' Improve access to confidential voluntary HIV coun
selling and testing services for women and their partners.
> Encourage women with HIV to form support groups.
Positive women can gain a lot of mutual support and
strength from such groups and they can also be
powerful agents for change.
> Make links with organisations and groups that are
already active in your country. As well as government
health services, you can look for support and resources
from AIDS organisations, churches and mission
hospitals, community-based groups, and many non
governmental organisations (NGOs).
• Strengthen maternity services. Make good-quality
antenatal care accessible to more women, particularly
the poor and those in rural areas. This could involve
running mobile clinics, training traditional birth
attendants, making stronger links with the nearest
hospital and using their laboratory facilities for testing
blood and other specimens.
’ Update your own practice by getting together with
colleagues who also work in maternity care to look
together ar the areas of practice which need to change.
» Improve services for STIs and encourage people to
practise safer sex.
’ Make sure al! women are well informed about the
risks and benefits of different feeding options for their
infants. Where women choose to breastfeed, encourage
them to do so exclusively for the first six months of life.
Find out what women in your area do, and what they
believe, about supplementing breastmilk. Try to find
ways to overcome the common fears that a baby will
go hungry or thirsty if he or she does not receive other
drinks or foods.
Becoming more at ease with HIV
and sexuality
You cannot work in the field of HIV and AIDS without
coming face-to-face with sexuality and very intimate
areas of people’s lives. These are things which you
would not normally talk to people about. They may
make you feel ashamed, embarrassed or angry and you
may not know which words to use. Here are some
activities to help you become more comfortable
discussing these difficult topics.
ACTIVITY 1
GIVING THINGS A NAME
You can do this exercise alone, but it is better in a group.
You might prefer to do it in single sex groups, but
everyone will learn more if it is a mixed group.
Think of all the words you need for your work with HIV and
AIDS which can be difficult or embarrasing. Write up all
the 'proper" words for the group to see - you might have
words like: sexual intercourse, masturbation, condoms,
penis, testicles, kissing, sex worker, anal intercourse, oral
sex, breasts, sperm, vagina, homosexual.
Now, ask the group to think of other names which might
be used for these things. Write them up for everyone to
JHU/CCP Pbotoshare
see.
Discuss where, or how, these words would be used and by
whom - friends of the same sex, health workers, boyfriend
or girlfriend, husbands or wives, children and so on.
Decide which words health workers should use in their
work to make sure that they are clearly understood without
causing offence.
Market places are a good place to promote condoms.
14
HIV AND SAFE MOTHERHOOD
6
WHAT ELSE CAN HEALTH WORKERS DO?
ACCEPTABLE BEHAVIOUR
This exercise can be used for small groups where the
members trust each other and can agree to keep the
exercise confidential. The facilitator should make sure that
the exercise is used to challenge stigma and discrimination
and not to reinforce negative stereotypes about people
living with HIV and AIDS.
Prepare separate pieces of paper with words describing
different kinds of sexual behaviour such as unprotected
vaginal sex, vaginal sex with a condom, oral sex with a
woman, oral sex with a man, group sex, sex with a
IHU/CCl fhotuab.ire
prostitute, anal sex, sex outside marriage, sex between
two men, sex between two women, a man forcing his wife
’
to have sex with him.
Ask the group to sit around a table. Mark one end of the
table "Very Acceptable' and the other end 'Not at all
acceptable’.
Role playing helps health workers practice how to
handle concerns about HIV more confidently.
Each person then selects a piece of paper and places it in
a position on the table according to how she or he feels
about the activity named. The participants should be asked
ACTIVITY 2
to say what thoughts and feelings made them decide to
ROLE PLAYING
discuss how some of their attitudes would affect their
place the paper at that point. You could also ask people to
work and their relationships with HIV-positive people.
It makes it easier to deal with an embarrassing or difficult
situation if you have thought it through ahead of time.
One of the best ways of doing this is by role playing a
situation with a group of your colleagues. Here are some
examples:
a)
Michael, aged 26, is HIV positive. He tells a health
worker he has a new girl friend, Angela, who is now
pregnant by him. She does not know he is HIV positive. Try
acting this out with a health worker and Michael and then
with different combinations, for example, Michael and
Angela, the health worker and Angela, all three together.
What can the health worker say and do? What works and
what doesn't work?
b)
Maria is pregnant and has had an HIV test. Now the
health worker has received the result - Maria is HIV
positive. How does the health worker tell Maria? What words
should the health worker use? What information should be
given? How can the health worker find out Maria's concerns?
c)
Nasiba comes to talk to the health worker. She is an
educated woman with two young children. Her husband is
expected home soon from the city where he has been
away working. Last time he came home Nasiba was
frightened that he might have become HIV positive and
tried to talk to him about using a condom. He became
angry and violent and refused to even discuss it. Now
Nasiba is even more afraid; what would become of her
children if she became HIV positive? Nasiba asks the
health worker for advice.
Try acting this out with just Nasiba and her husband, with
the health worker and Maria, and with all three of them
together. What can the health worker say and do? What
works and what doesn't work?
HIV AND SAFE MOTHERHOOD
Safe working practices
Although the risk of health workers becoming HIV
positive through their work is very low, all health
workers who care for people with HIV and AIDS need
to protect themselves.
Midwives, birth attendants, obstetricians and
anybody else attending births are at higher risk than
other health workers, because of the large amount of
blood present during and after delivery. As well as
being exposed to HIV, they are also exposed to other
serious infectious diseases such as hepatitis B and C,
and TB. Health workers need to know what the risks
are and how to minimise them.
Like anyone else, health workers can also be at risk
from their own or their partner’s sexual behaviour. This
is likely to put them at much greater risk than their
work with HIV-positive patients, yet is often the most
difficult to accept.
Risks at work
HIV can be transmitted from one person to another in
blood and other body fluids such as, amniotic fluid (the
waters that surround a baby when inside the mother),
vaginal and cervical secretions, and breastmilk. HIV
cannot be transmitted in saliva, sweat, tears, vomit,
urine or faeces, unless blood is visibly present.
• Splashes of HIV-infected blood or body fluid on
unbroken skin, presents a very low risk of HIV
transmission.
15
« HIV-infected blood or body fluid on cuts or grazes,
or in the eye, presents a possible risk if a lot of blood
or fluid is in contact with the cut, graze or dye for a
significant length of time.
® Needlestick injuries involving HIV-infected blood,
where the skin is pierced by a sharp instrument such as
a needle or scalpel, present a higher risk, especially if
the injury is caused by a hollow needle.
Preventing accidents
Accidents normally happen during emergencies, when
health workers are working quickly. Poor working
conditions, such as bad lighting or long working hours,
also make accidents more likely. Both individual health
workers and managers have responsibility for
preventing accidents at work.
Health workers
Use universal precautions (see box).
Z Handle sharps carefully, especially in emergencies.
•/ Use gloves to prevent contact with blood and other
body fluids. If necessary, re-use gloves after rinsing in
water (not alcohol or disinfectant) and leaving to dry,
out of direct sunlight.
Z Only give injections or take samples for laboratory
tests when it is really necessary.
Z Avoid episiotomies (cutting the opening to the
vagina during labour).
Health workers working in people’s homes need to take
special care. Poor housing often means that they have
to work in dark and crowded rooms. Home deliveries
may be particularly difficult. Health workers will have
to think ahead about how they and other family
members will stay safe in an environment where there
may not be a clean water supply or an easy way of
disposing of needles. How will the blood of the delivery
be cleared up? Who will dispose of the placenta and
how? The best answers to these questions will depend
on the circumstances, but preparation is needed.
Health workers also need to explain to family
members how to protect themselves - make sure that
the person washing any clothes from the delivery or
disposing of the placenta knows how to do it safely.
UNIVERSAL PRECAUTIONS
FOR LABOUR AND DELIVERY
• Cover open cuts, sores or dermatitis with a waterproof
dressing.
• Wear gloves whenever there is a risk of contact with
blood and body fluids, including when caring for women
after delivery, if you may come in contact with lochia
(the bloody vaginal discharge which is passed for the
first few days after delivery).
o If your skin does come in contact with blood or other
body fluids, wash with soap and water straight away.
e Wear glasses or goggles and a mask if there is a risk
of blood or amniotic fluid being splashed and always
during a caesarean section. Wear a waterproof apron for
delivery.
• Always wash hands before and after contact with the
woman and after removing gloves.
<» Take care to prevent injuries when handling sharps.
Handle them as little as possible and use a needle
holder when suturing. Do not recap used needles. Do not
remove needles from syringes by hand. Do not bend or
break them by hand. Hollow needles are the most risky.
o Place used sharps
in a puncture
resistant container
with a lid (sharps
boxes). Keep these
as close to the place
of use as possible.
Sharps boxes can be
made from large
drug tins, or buckets
with a lid.
•
During a
Caesarean section:
wear eye goggles,
use double gloves,
pass sharps using a
receiver rather than
hand-to-hand, use
needle holders and
avoid using the
fingers in needle
placement.
Managers
Z Judge where the greatest risk is: injecting rooms,
operating theatres, delivery rooms, laboratories, clean
up departments and mortuaries, and make sure that
infection control procedures are followed .
Z Use resources rationally. For example, if supplies of
gloves are limited, keep them for activities with the
greatest risk of exposure, such as delivery.
Z Make staff safety a priority. If health workers
believe that infection at work is unavoidable, they may
take unnecessary risks. Some health units have set up
infection control committees to reduce the number of
accidents..
16
• Avoid using suction on newborns unless really
necessary. If essential, use wall suction if available. The
De Lee type of suction apparatus (in which the suction is
provided by the health worker's mouth) puts health
workers at risk.
• Dispose of solid waste such as blood soaked dressings
safely.
• Handle newborn babies with gloves until they have
been washed.
• Advise women how to handle and dispose of sanitary
pads and rags safely.
,
HIV AND SAFE MOTHERHOOD
6
/ Remember the needs of cleaners, porters and other
auxilliary staff and provide them with the protection
and information they need too.
■/ Encourage staff to report all exposure incidents and
try to make sure that they are treated in a non
judgemental and supportive way.
After an accident
Even if they are careful, health workers can be vulner
able to an accident at some time in their work which
may put them at risk of infection. All health workers
need to know what to do after an accident and where
to go for help. It may be useful to have this information
on a poster on the wall of the clinic or ward (see box).
Health workers who have possibly been exposed to
HIX7 need time to think about the implications of having
an HIV test. They need access to trained, confidential
counselling and support in making decisions.
Post-exposure prophylaxis
Antiretroviral treatment after exposure to HIV can
reduce the risk of infection. After a needlestick injury
with HIV-infected blood, zidovudine alone reduces the
risk of HIV transmission from an average of 3 in 1,000
injuries to less than 1 in 1,000. Combination therapy
with zidovudine and lamivudine is recommended for
deeper injuries and lacerations but is obviously more
expensive. It is recommended that all health facilities,
particularly those offering ARV treatment to patients,
should make drugs available to staff for this purpose.
The availability of the drugs, even if they are never
used, is likely to make health workers feel safer in their
work and reduce the likelihood of substandard care for
patients known to be HIV positive.
WHAT ELSE CAN HEALTH WORKERS 00?
Making the most of Limited
resources
People working in the field of HIV in pregnancy will
need to make decisions about the best use of rhe
available resources. The following exercise can help
health planners, policy makers, health care providers,
community leaders, pregnant women and their partners
and people living with HIV, plan effective activities.
ACTIVITY
HIV INTERVENTIONS
1
Get people together in small informal groups and ask
them to list, on separate pieces of paper, all the
interventions which they believe will reduce the number
of pregnant women with HIV within their community or
country. These might include:
o HIV education in schools
o accessibility and promotion of condoms
o education activities which focus on men
o improved status of women
o health services which diagnose and treat STIs
o availability of ARV therapy.
2
Ask each small group to rank the interventions in order
of effectiveness, that is, putting the most effective
intervention at the top and the least at the bottom.
Each group will then present their list to the larger
group.
3
In the large group discuss the lists of each group and
discuss which of the interventions would be easiest to
achieve and which would be the most difficult.
ACTION AFTER AN ACCIDENT
The
group should also try to identify:
• particular barriers and how these might be overcome
1
If body fluids have been spilled, clean them up
• resources required and where they might come from.
immediately using soap and water, or a chemical
disinfectant if available. Bleach, isopropyl alcohol,
4
transmission of HIV. This time the interventions might
virus.
2
include:
If the eyes or skin have been splashed with blood or
• ARV therapy for pregnant women known to be HIV
body fluid, wash them as soon as possible with water
positive
(for eyes) and soap (for skin). Do not scrub skin or use
• increased availability of voluntary counselling and
disinfectant chemicals as this may cause cuts or
testing
grazes.
3
• HIV education in schools
• better information for women on the risks and
If the skin has been cut or pricked, let the wound
bleed for two minutes. Then clean with alcohol
benefits of breastfeeding
disinfectant if available (which will burn) for 3-4
minutes. Try to judge the risk of transmission. Unless
quite a lot of blood is involved, such as with a hollow
needle, there is no need to do any more.
4
Report the accident to the manager, so that steps can
be taken to avoid similar exposures in the future.
HIV AND SAFE MOTHERHOOD
Repeat the whole exercise looking at the interventions
which would reduce the risk of mother-to-child
povidone iodine and soap will all work to stop the HIV
• accessibility and promotion of condoms.
5
Finally, ask participants to agree:
• What are the priority interventions?
• What can be done now within existing resources?
• Who will do it?
• 8y when?
17
J
J
RESOURCES
BOOKS AND MANUALS
Background materials
A positive woman’s survival kit is written by and for
women living with HIV and AIDS. It includes a set of
fact sheets on specific subjects such as STIs and
reducing mother-to-child transmission. Price: free to
readers in developing countries, £7/US$10.50
elsewhere. Available in English, French and Spanish
from: ICW, 2C Leroy House, 468 Essex Road, London
N1 3QP. Fax: +44 20 7704 8070. E-mail: info@icw.org
HFV/AJDS in Southern Africa - The threat to
development highlights the need to integrate HIV
prevention with wider development activities. Price:
£2.50. Available from: C1IR, Unit 3, Canonbury Yard,
190a New North Road, Islington, London N1 7BJ,
England, UK. Fax: +44 20 7359 0017. E-mail:
CIIR@CIIR.org
Clinical Tuberculosis is a practical, comprehensive and
up-to-date guide to the diagnosis of all forms of TB, in
both adults and children. Price: £3.50. Available from:
TALC, PO Box 49, St Albans, Herts, AL1 4AX, UK.
Fax: +44 1727 8453869. E-mail: talcuk@binternet.com
Counselling and testing
Care counselling model: a handbook designed
primarily for HIV/AIDS counsellors working in the
field, this book covers pre-test counselling, post-test
counselling and ways to mobilise the community.
Includes useful exercises to make counsellors aware of
new techniques for dealing with clients. Price: free.
Available from: SAfAIDS, 17 Beveridge Road, PO Box
A509 Avondale, Harare, Zimbabwe. Fax: + 263 4
336195. E-mail: info@safaids.org.zw
Counselling and voluntary HIV testing for pregnant
women in high HIV prevalence countries: guidance for
service providers provides an overview of the
magnitude of mother-to-child transmission. It looks at
both the content of counselling and voluntary testing
during pregnancy and the operational issues in setting
up and maintaining a service. Price: free. Available
from: UNAIDS, CH-1211, Geneva 27, Switzerland.
Fax: +44 7914187. E-mail: unaids@unaids.org.
Internet: www.unaids.org
HIV testing: apractical approach contains information
on HIV testing and counselling services for use in
developing countries. Price: free to readers in
developing countries, £7.50/US$ 15 elsewhere.
Available from: Healthlink Worldwide.
18
Infant feeding
HIV and infant feeding, a set of three manuals
comprising: guidelines for decision-makers, a guide for
health care managers and supervisors, and a review of
HIV transmission through breastfeeding (WHO/FRH/
NUT/CHD). Price: US$8.30 developing countries,
US$14 elsewhere. Available in developing countries
from any UNICEF office or from WHO, CH-1211,
Geneva 27, Switzerland. Fax: +41 22 7910746. E-mail:
publications@who.int
Frequently asked questions on: Breastfeeding and
AIDS, a short but useful fact sheet. Price: free.
Available from: AED, 1255 23rd Street NW,
Washington DC, USA. E-mail: linkages@aed.org
Safe motherhood
Care in normal birth: a practical guide looks at
common practices used during labour. It recommends
interventions which can support normal birth and
points out those which are harmful and should be
discontinued (WHO/RHT/MSM/98.3). Price: free.
Available from: RHR Documentation Centre, WHO,
CH-1211, Geneva 27, Switzerland. E-mail:
lambert.s@who.ch. Internet: www.who.int/rht
Note: practical guides are also available on
postpartum care of mother and newborn; detecting pre
eclampsia; basic newborn resuscitation and preventing
prolonged labour (the partograph)
Safe Motherhood Initiatives: critical issues, analyses
the successes and failures of safe motherhood initiatives
and offers a wide range of perspectives on making
pregnancy, childbirth and abortion safer in the future.
Price: £8/US$14 for students/those in developing
countries, £24/USS40 for others. Available from:
Blackwell Science Ltd, Osney Mead, Oxford 0X2
OEL, UK. Tel: +44 1865 206206. Fax: + 44 1865
721205. E-mail: jnl.orders@blacksci.co.uk. Internet:
www.blackwell-science.com/rhm
HIV in pregnancy: a review is a technical overview of
the issues, not written specifically for the developing
world. Price: free. Available from: WHO (see above)
NEWSLETTERS
Relevant back issues of Child Health Dialogue (CHD)
and AIDS Action (AA) are:
CHD8 Safe motherhood (1997)
CHD12 HIV and children (1998)
CHD14 Reducing mother-to-child HIV transmission
(special supplement,1999)
CHD18 Strengthening safe motherhood (2000)
AA3S HIV and its impact on health workers (1997)
AA43 Improving access to care (1999)
Please write to Healthlink Worldwide stating which
issues you require.
HIV AND SAFE MOTHERHOOD
Other free and Low cost
practical publications from
Healthlink Worldwide
AIDS and Sexual Health
Child Health
Disability
Health Policy
For futher details and to recevie a copy of Healthlink Worldwide's
Publications List, please contact:
Healthlink Worldwide (HIVSAFEM)
City si de
40 Adler Street
London El 1EE, UK
Telephone +44 20 7539 1570
Fax +44 20 7539 1580
E-mail info@healthlink.org.uk
or visit our website at www.healthlink.org.uk
HIV and safe motherhood is aimed at all
those working in health, family planning
and women’s organisations in sub-Saharan
Africa. It provides practical information to
strengthen communication with women who
are vulnerable to and affected by HIV, to
help them keep themselves and their infants
healthy. It calls for efforts to prevent HIV
transmission among women and infants to
be approached within the context of wider
Safe Motherhood initiatives.
hteaBlhlink
WORLDWIDE
Healthlink Worldwide
Cityside
40 Adler Street
London E1 1EE.UK
Telephone +44 20 7539 1570
Fax +44 20 7539 1580
E-mail info@healthlink.org.uk
http://www.healthlink.org.uk
3
MATERIAL ON HIV/AIDS
SENT BY
MEDICAL MISSION INSTITUTE
UNIT FOR HEALTH SERVICES AND HIV/AIDS
SALVATORSTR. 22
D-97074 WURZBURG
GERMANY
June 2001
//J2
New Data on the Prevention of Mother-to-Child
Transmission of HIV and their Policy Implications
Conclusions and recommendations
WHO Technical Consultation on Behalf of the
UNFPA/UNICEF/WHO/UNAIDS Inter-Agency Task Team on
Mother-to-Child Transmission of HIV
Geneva, 11-13 October 2000
Approved: 15 January 2001
mtct_consultation_report.doc (16 Jan 01 14:34)
Printed 17 Jan 01 12:38
Contents
Introduction.......................................................................................................................... 1
Objectives......................................................................................................................... 3
Participants................................................................... .■................................................... 4
Background information.......................................... ...................................................... 4
Conclusions and recommendations on the use of antiretrovirals................................... 5
Short term efficacy of ARV prophylactic regimens................................................... 5
Long-term efficacy of ARV prophylactic regimens................................................... 5
Safety of ARV prophylactic regimens..........................................................................5
Selection of resistant viral populations.........................................................................6
Women who received a sub-optimal antepartum regimen.......................................... 7
Scaling-up MTCT-prevention programmes and choice of ARV regimen................ 7
Conclusions and recommendations regarding infant feeding......................................... 7
Risks of breastfeeding and replacement feeding:......................................................... 7
Cessation of breastfeeding..............................................................................................8
Infant feeding counselling...................................... ........................................................ 9
Breast health................................................................................................................... 10
Maternal health............................................................................................................... 10
Identified needs for research.............................................................................................12
References........................................................................................................................... 15
Abbreviations...................................................................................................................... 19
Participants
WHO Technical Consultation 11-13 October 2000
Page 1
Introduction
Mother-to-child transmission (MTCT) of HIV is the most significant source of HIV
infection in children below the age of 10 years. The strategy recommended by the
United Nations agencies to prevent mother-to-child transmission of HIV includes: (1)
the primary prevention of HIV infection among parents to be, (2) the prevention of
unwanted pregnancies in HIV-infected women, and (3) the prevention of HIV
transmission from HIV-infected women to their infants. While the best ways to
prevent HIV infection in infants remain primary prevention of HIV infection and
reduction of unwanted pregnancies among women who are infected with HIV, many
HIV-infected women become pregnant. In 1994 a long and complex regimen of the
antiretroviral drug Zidovudine (ZDV) taken 5 times daily from the 14th week of
pregnancy and intravenously during labour was shown to reduce the risk of
transmission from mother to child by two-thirds, from 26% to 8%. This regimen had
little practical value in developing countries and more appropriate short course ZDV
regimens starting later in pregnancy were evaluated and also shown to be effective.
Other interventions shown to prevent transmission of HIV include elective caesarean
section and the avoidance of breastfeeding. While these interventions have become
standard practice in developed countries, they are not always practical or safe in
resource-limited settings.
Following release of results in 1998 that a short course ZDV regimen starting from 36
weeks of pregnancy reduced- the rate of transmission of HIV by 50%, a
comprehensive strategy for MTCT- prevention was developed.3
Considerable
experience has been obtained with pilot intervention projects, many initiated by
UNICEF under the umbrella of the UN Inter-Agency Task Team (IATT) on Motherto-Child Transmission (MTCT). The entry point to the interventions is voluntary
counselling and testing (VCT) for HIV, followed by ZDV from 36 weeks and during
labour to mothers who are HIV-infected, and counselling on infant feeding options.
More recent clinical trials have shown that other short-course ARV regimens using
ZDV, the combination ZDV + Lamivudine (3TC), and Nevirapine are also effective
in reducing the risk of transmission.
MTCT-prevention interventions should not stand in isolation, but be integrated where
possible into existing health care infrastructures and reproductive health services.
Moreover, the interventions should be seen as part of a wider response to HIV/AIDS,
which includes expanding access to care and support for HIV-infected mothers and
their families, including treatment of opportunistic infections and accelerating access
to HIV treatment.
While the efficacy of ARV regimens in reducing the risk of HIV transmission is
important, other issues need to be considered about the use of ARVs in MTCTprevention interventions:
•
Practicality and effectiveness. The selection process for enrolment and individual
monitoring in clinical trials produce ideal conditions for women to access, and
adhere to the treatment under study. These ideal conditions are seldom achieved
once the treatment is expanded to a wider population in implementation
•
WHO Weekly Epidemiological Record, 1998: 73, 313-320
WHO Technical Consultation
11-13 October 2000
Page 2
programmes and the actual reduction in the rate of mother-to-child transmission
achieved (effectiveness) is likely to be less than that observed in clinical trials
(efficacy). The effectiveness of antiretroviral regimens that are the more practical
and simpler to administer should be close to their efficacy observed from clinical
trials while the effectiveness of regimens complex and difficult to administer may
be considerably less.
•
Safety: For the women and infants who are offered antiretroviral prophylaxis, the
risks of exposure to one or more drugs must be balanced by the benefit of
preventing transmission of a fatal infection in the infant.
In randomized
controlled trials the incidence of adverse events can be compared between the
treated and untreated groups, providing good comparative data on safety.
However, observational studies and long-term monitoring of exposed mothers and
infants are an important additional source of information that better reflects the
actual conditions under which the ARV regimens are used.
•
Drug Resistance. Drug resistance has been reported in some women exposed to
short course antiretroviral regimens used for MTCT-prevention. The implications
of such resistance are uncertain and need to be considered in the context of
increasing access to ARV treatment for patients in developing countries.
There is continued concern that up to 20% of infants bom to HIV-infected mothers
may acquire HIV through breastfeeding, depending on duration and other risk factors.
Replacement feedingb is the only way to completely avoid post-natal HIV
transmission; however, this may not be possible in many locations in the developing
world. Despite the risk of HIV transmission, breastfeeding provides appropriate
nutrition, passively conveys protection against some micro-organisms including
respiratory and gastrointestinal pathogens, and is more economical. Exclusive
breastfeeding0 provides the infant’s complete nutritional needs up to the age of four to
six months, and delays the return of fertility playing an important role in birth
spacing. To protect breastfeeding from commercial influences, the World Health
Assembly adopted the International Code of Marketing of Breastmilk Substitutes,
now implemented world wide. UNICEF and WHO launched the Baby Friendly
Hospital Initiative to improve maternity services so that they protect, promote, and
support breastfeeding.
Breastfeeding remains the best source of nutrition for the great majority of infants and
should continue to be promoted and supported among mothers who are not known to
be HIV-infected. Implementation of the Code of Marketing in national legislation
and regulations provides protection to all women and their infants, whether or not
they are breastfed.
b
Replacement Feeding is defined as the process of feeding a child, who is not receiving any breast
milk, with a diet that provides all the nutrients the child needs.
c
Exclusive Breastfeeding is defined as giving an infant no other food or drink, not even water, apart
from breast milk (including expressed breast milk), with the exception of drops or syrups consisting
of vitamins, mineral supplements or medicines.
WHO Technical Consultation
11-13 October 2000
Page 3
New information on MTCT-prevention has emerged since WHO issued guidance on
the choices of ARV regimens'1 and the risks of HIV transmission through breastmilk.'
Important new research data related to the long-term efficacy and safety of different
ARV regimens, to the dynamics and clinical implications of viral resistance, and to
the role of infant feeding practices were published or presented at the 13th
International AIDS Conference in Durban, South Africa in July 2000. In addition,
considerable experience has accumulated over the past two years from pilot
implementation of MTCT-prevention programs in resource-limited settings. In
particular, programme managers have identified problems implementing current
recommendations on HIV and infant feeding and have asked for clarification.
On behalf of the Inter-Agency Task Team on MTCT, WHO’s Department of
Reproductive Health and Research, in collaboration with the HIV/STI Initiative and
the Department of Child and Adolescent Health, convened a Technical Consultation
on new data on the prevention of MTCT and their policy implications. The objective
was to review recent scientific data and update current recommendations on the
provision of ARVs and infant feeding counselling. The Technical Consultation
focused on these two components, although it was recognized that many other
components are important for a comprehensive package for MTCT-prevention.
Objectives
The specific objectives of the meeting were:
1. To review the most recent scientific data on the use of ARV regimens to prevent
MTCT, including issues of efficacy, safety, drug resistance and factors affecting
optimal choices of ARV regimens in different settings;
2. To consider developments and likely time frame for access to and use of
antiretroviral drugs for the treatment of HIV infection in resource-limited settings
and the likely impact that MTCT-prevention programmes may have on the
effectiveness of such treatments;
3. To review evidence on risks and benefits for mother and infant of breastfeeding,
including exclusive breastfeeding, and of replacement feeding, and consider issues*
d
Available on UNAIDS Web site http://www.unaids.org/publications/documents/mtct/index.html
• WHO/UNAIDS recommendations on the safe and effective use of short-course ZDV for
prevention of mother-to-child transmission of HIV (WHO Weekly Epidemiological Record 1998,
73, 313-320).
• Technical Working Group Meeting to Review New Research Findings for the Prevention of
Mother-to-Child Transmission of HIV. Geneva, 10-11 August 1999.
• Use of Nevirapine to Reduce Mother-to-Child Transmission of HIV (MTCT). WHO Review of
Reported Drug Resistance. Geneva 24 March 2000.
'
Available on UNAIDS Web site http://www.unaids.org/publications/documents/mtct/index.html
• HIV and Infant Feeding: A Policy Statement Developed Collaboratively by UNAIDS, UNICEF
and WHO. May 1997.
• HIV and Infant Feeding: a Guide for Health-Care Managers and Supervisors, Guidelines for
Decision-Makers and Review of HIV Transmission through Breastfeeding. Jointly issued by
UNICEF, UNAIDS and WHO. June 1998.
• HIV and Infant Feeding: WHO, UNICEF, UNAIDS Statement on Current Status of
WHO/UNAIDS/UNICEF Policy Guidelines. 4 September 1999.
WHO Technical Consultation
11-13 October 2000
Page 4
in conveying complex information on risks and benefits of different feeding
options to mothers and enabling informed choice;
4, To review, and revise if necessary, existing UN agency policies on choices of
ARV regimens and infant feeding guidelines and counselling in MTCTprevention programs in resource-limited settings;
5. List outstanding research questions on the prevention of MTCT using ARV
regimens or through infant feeding.
Participants
Participants included expert scientists and programme managers from the African
region (11), Asia (2), Latin America (1), The Caribbean (1), Europe (4) and the USA
(2), HIV-infected mothers (2), collaborating agency scientists (6), representatives
from non-governmental organizations implementing MTCT-prevention programs (6)
and UN agencies (UNAIDS, UNFPA, UNICEF, WHO). The full list of participants
is given at the end of the report.
Background information
Background papers that were prepared for the consultation, presented in plenary
sessions and discussed in the sub-groups, included:
•
Munjanja S.
Antiretroviral regimens for the prevention of MTCT: the
programmatic implications.
•
Farley TMM, Buyse D, Gaillard P, Perriens J. Efficacy of antiretroviral regimens
for prevention of MTCT and some programmatic issues.
•
Mofenson L, Munderi P. Safety of antiretroviral prophylaxis of perinatal
transmission on HIV-infected pregnant women and their infants.
•
Najera R. MTCT and antiretroviral drug resistance.
•
Fowler MG, Newell ML.
resource poor settings.
Breastfeeding, HIV transmission and options in
These papers are available on the WHO and UNAIDS web sitesf together with a
summary of information presented during the discussion.
The conclusions and recommendations from this meeting are given below. They will
be reconsidered as new information becomes available.
f
Available on WHO Department of Reproductive Health and Research web site:
http://www.who.int/reproductive-health/
and on UNAIDS web site: http://www.unaids.org/publications/documents/mtct/index.html
WHO Technical Consultation
11-13 October 2000
Page 5
Conclusions and recommendations on the use of antiretrovirals
Short term efficacy ofARV prophylactic regimens
Several antiretroviral regimens evaluated in randomized controlled clinical trials
showed short-term efficacy, as determined by infant infection status at 6-8 weeks.18
This reflects the reduction of in utero, intrapartum and early postpartum transmission.
•
The drugs used in the effective antiretroviral prophylaxis regimens evaluated
included zidovudine (ZDV) alone, ZDV + Lamivudine (3TC), and Nevirapine.
•
All regimens include an intrapartum component, with varying durations of
antepartum and/or postpartum treatment (see table).
•
The most complex effective regimen includes antepartum/intrapartum/postpartum
ZDV, while the simplest effective regimen includes single dose intrapartum/
postpartum Nevirapine.
•
The mechanisms by which these regimens provide protection against mother to
child HIV transmission include decrease of viral replication in the mother and/or
prophylaxis of the infant during and after exposure to virus.
Long-term efficacy ofARV prophylactic regimens
Short-course ZDV, ZDV + 3TC, and Nevirapine have been evaluated in breastfeeding
populations. Long-term efficacy as measured by infant infection status through 12 to
24 months has been demonstrated for short-course ZDV and Nevirapine regimens,9-10
showing that the early reduction in HIV transmission persists despite continued
exposure to HIV during breastfeeding. Analysis of long-term efficacy of the ZDV +
3TC regimens is in progress.5
Safety ofARV prophylactic regimens
Short-term safety’ and tolerance of the effective antiretroviral prophylactic regimens
has been demonstrated in all the controlled clinical trials,1'4’6'8’10'12 while collection of
long-term safety data is ongoing.
•
In the controlled clinical trials, the effective antiretroviral prophylaxis regimens
have not been associated with an excess of severe adverse events (including
mortality) compared with the control arms in HIV-infected women or their
children.1'4’10-13-14
•
Normal growth, neurologic development, and immunologic parameters have been
demonstrated in industrialized countries in uninfected children with in
utero/neonatal exposure to ZDV compared to those without such exposure.15
•
HIV-related disease progression in mothers does not appear to be altered by
receipt of prophylactic antiretroviral regimens.16
There have not been significant differences in HIV disease progression or
mortality in children who became infected despite receipt of prophylaxis
WHO Technical Consultation
11-13 October 2000
Page 6
compared with infants who became infected in the control arms in the clinical
trials.17’18
•
In the randomized, controlled clinical trials the only adverse effect attributable to
drug exposure was mild transient anaemia in infants receiving ZDV-containing
regimens.1'4’7’11-13’17
•
Mitochondrial dysfunction has been reported to occur in a small number of infants
in France exposed in utero or neonatally to nucleoside reverse transcriptase
inhibitor (ZDV or ZDV/3TC),19 but no similar findings were reported following
an extensive review of deaths in a cohort of 16,000 infants in the USA,20 nor in
the PETRA study.21 However, neither of these studies did specific laboratory
assessment for mitochondrial dysfunction. Non-nucleoside reverse transcriptase
inhibitor drugs, like Nevirapine, do not inhibit mitochondrial DNA polymerase
and therefore should not be associated with such toxicity.22
Conclusion: The WHO Technical Consultation concluded that benefit of these drugs
in reducing mother-to-child HIV transmission greatly outweighs any potential adverse
effects of drug exposure.
Selection of resistant viral populations
Selection for pre-existing resistant viral populations or development of new mutations
may occur with all antiretroviral drugs or drug regimens that do not fully suppress
viral replication. However, this is more likely to rapidly occur with drugs in which a
single mutation is associated with development of drug resistance; such drugs include
3TC (with and without concomitant ZDV treatment) and Nevirapine.22'24 Virus
containing drug resistant mutations decreases in amount once antiretroviral drug
prophylaxis is discontinued, and wild type virus dominates.25 However, the mutant
virus may remain present in an individual at very low levels.
•
This could decrease antiviral effectiveness of future treatment with antiretroviral
regimens that contain the same drug, or drugs within the same class, as that used
for prophylaxis.
•
It is unknown if such low-level drug resistance would affect the efficacy of the
antiretroviral prophylaxis regimen if used in a subsequent pregnancy.
•
There is currently no evidence that drug-resistant viruses are more transmissible
than non-resistant viruses.
•
There are currently no data to indicate that drug-resistant viruses are more virulent
than non-resistant viruses.
Conclusion: The WHO Technical Consultation concluded that the benefit of
decreasing mother-to-child HIV transmission with these antiretroviral drug
prophylaxis regimens greatly outweighs concerns related to development of drug
resistance.
WHO Technical Consultation
' 11-13 October 2000
Page 7
Women who receive a sub-optimal antepartum regimen
For antiretroviral prophylaxis regimens that include an antepartum component, the
minimum duration of antepartum treatment necessary for protection is not defined.
However, it is likely that a major mechanism for effective antepartum prophylaxis is
reduction in maternal viral load, which is likely to require at least one to two weeks of
treatment.4’6
Recommendation: For women receiving prophylactic regimens that include an
antepartum component and who have received less than two weeks of ZDV
antepartum treatment, prophylaxis with six weeks ZDV to the infant, intrapartum/
postpartum ZDV + 3TC, or the two-dose Nevirapine regimen may be considered.5'8
Scaling-up MTCT-prevention programmes and choice ofARV regimen
Since the last WHO Technical Consultations on prevention of mother-to-child HIV
transmission with antiretroviral prophylaxis, important new data have become
available related to long-term efficacy and safety of these regimens. Additionally,
longitudinal assessment has demonstrated that antiretroviral resistant virus detected at
6 weeks postpartum was no longer detectable when reassessed at 12 months
postpartum.
Furthermore, the presence of detectable resistant virus was not
associated with either increased mother-to-child HIV transmission or increased
mortality in infants who became infected despite prophylaxis.25
Conclusion: The WHO Technical Consultation concluded that implementation of any
of the antiretroviral prophylaxis regimens shown to be effective in randomized
clinical trials (ZDV, ZDV + 3TC, or Nevirapine regimens) can be recommended for
general implementation. There is currently no justification to restrict use of any of
these regimens to pilot project or research settings.
Recommendation: The local choice for the antiretroviral prophylactic regimen to
include in the standard package of care should be determined by issues of feasibility,
efficacy and cost.
Considerations that contribute to decisions regarding the
composition of the standard prophylactic package include: proportion of women
attending antenatal care; time of initiation of antenatal care; frequency of antenatal
visits; type of HIV voluntary counselling and testing available; logistics and
acceptability of antiretroviral prophylaxis administration; and cost of drugs.
Recommendation: The prevention of mother-to-child HIV transmission should be part
of the minimum standard package of care for women who are known to be HIV
infected and their infants.
Conclusions and recommendations regarding infant feeding
Risks of breastfeeding and replacement feeding:
The benefits of breastfeeding are greatest in the first six months of life (optimal
nutrition, reduced morbidity and mortality due to infections other than HIV, and
delayed return of fertility).26'34
WHO Technical Consultation
11-13 October 2000
Page 8
Exclusive breastfeeding during the first 4-6 months of life carries greater benefits than
mixed feeding with respect to morbidity and mortality from infectious diseases other
than HIV.27'29-35-36
Although breastfeeding no longer provides all nutritional requirements after six
months, breastfeeding continues to offer protection against serious infections and to
provide significant nutrition to the infant (half or more of nutritional requirements in
the second six months of life, and up to one third in the second year).37
Replacement feeding carries an increased risk of morbidity and mortality associated
with malnutrition and associated with infectious disease other than HIV. This is
especially high in the first 6 months of life and decreases thereafter. The risk and
feasibility of replacement feeding are affected by the local environment and the
individual woman’s situation.38’41
Breastfeeding is associated with a significant additional risk of HIV transmission
from mother to child as compared to non-breastfeeding. This risk depends on clinical
factors and may vary according to pattern and duration of breastfeeding. In untreated
women who continue breastfeeding after the first year, the absolute risk of
transmission through breastfeeding is 10-20%.42’45
The risk of MTCT of HIV through breastfeeding appears to be greatest during the first
months of infant life but persists as long as breastfeeding continues. Half of the
breastfeeding-related infections may occur after 6 months with continued
breastfeeding into the second year of life.9'44'45
There is evidence from one study that exclusive breastfeeding in the first 3 months of
life may carry a lower risk of HIV transmission than mixed feeding.46
Recommendations:
•
When replacement feeding is acceptable, feasible, affordable, sustainable and
safe, avoidance of all breastfeeding by HIV-infected mothers is recommended.
•
Otherwise, exclusive breastfeeding is recommended during the first months of
life.
•
To minimize HIV transmission risk, breastfeeding should be discontinued as soon
as feasible, taking into account local circumstances, the individual woman’s
situation and the risks of replacement feeding (including infections other than HIV
and malnutrition).
•
When HIV-infected mothers choose not to breastfeed from birth or stop
breastfeeding later, they should be provided with specific guidance and support
for at least the first 2 years of the child’s life to ensure adequate replacement
feeding.
Programmes should strive to improve conditions that will make
replacement feeding safer for HIV-infected mothers and families.
Cessation of breastfeeding
There are concerns about the possible increased risk of HIV transmission with mixed
feeding during the transition period between exclusive breastfeeding and complete
cessation of breastfeeding. Indirect evidence on the risk of HIV transmission through
WHO Technical Consultation
11-13 October 2000
Page 9
mixed feeding, suggests that keeping the period of transition as short as possible may
reduce the risk.
Shortening this transition period however may have negative nutritional consequences
for the infant, psychological consequences for the infant and the mother, and expose
the mother to the risk of breast pathology which may increase the risk of HIV
transmission if cessation of breastfeeding is not abrupt.
The best duration for this transition is not known and may vary according to the age
of the infant and/or the environment.
Recommendation: HIV-infected mothers who breastfeed should be provided with
specific guidance and support when they cease breastfeeding to avoid harmful
nutritional and psychological consequences and to maintain breast health.
Infant feeding counselling
Infant feeding counselling has been shown to be more effective than simple advice for
promoting exclusive breastfeeding in a general setting.47’50 Good counselling may
also assist HIV-infected women to select and adhere to safer infant feeding options,
such as exclusive breastfeeding or complete avoidance of breastfeeding, which may
be uncommon in their environment. Effective counselling may reduce some of the
breast health problems which may increase the risk of transmission.
Many women find that receiving information on a range of infant feeding options is
not sufficient to enable them to choose and they seek specific guidance. Skilled
counselling can provide this guidance to help HIV-infected women make a choice that
is appropriate for their situation to which they are more likely to adhere. The options
discussed during counselling need to be selected according to local feasibility and
acceptability. '
The level of understanding of infant feeding in the context of MTCT in the general
population is very limited, thus complicating efforts to counsel women effectively.
The number of people trained in infant feeding counselling is few relative to the need
and expected demand for this information and support.
Recommendations:
•
All HIV-infected mothers should receive counselling, which includes provision of
general information about the risks and benefits of various infant feeding options,
and specific guidance in selecting the option most likely to be suitable for their
situation. Whatever a mother decides, she should be supported in her choice.
•
Assessments should be conducted locally to identify the range of feeding options
that are acceptable, feasible, affordable, sustainable and safe in a particular
context.
•
Information and education on mother-to-child transmission of HIV should be
urgently directed to the general public, affected communities and families.
06o93
Oo\
WHO Technical Consultation
•
11-13 October 2000
Page 10
Adequate numbers of people who can counsel HIV-infected women on infant
feeding should be trained, deployed, supervised and supported. Such support
should include updated training as new information and recommendations emerge.
Breast health
There is some evidence that breast conditions including mastitis, breast abscess, and
nipple fissure may increase the risk of HIV transmission through breastfeeding, but
the extent of this association is not well quantified.51-53
Recommendation: HIV-infected women who breastfeed should be assisted to ensure
that they use a good breastfeeding technique to prevent these conditions, which
should be treated promptly if they occur.
Maternal health
In one trial, the risk of dying in the first 2 years after delivery was greater among
HIV-infected women who were randomized to breastfeeding than among those who
were randomized to formula feeding.54 This result has yet to be confirmed by other
research.
Women who do not breastfeed or stop breastfeeding early are at greater risk of
becoming pregnant.
Recommendation: HIV-infected women should have access to information, follow-up
clinical care and support, including family planning services and nutritional support.
Family planning services are particularly important for HIV-infected women who are
not breastfeeding.
11-13 October 2000
WHO Technical Consultation
Page 11
Regimens of proven efficacy (randomized controlled clinical trials)
Antepartum
Study
Drug
ACTG 076
ZDV
Harvard Thai
ZDV
Harvard Thai
ZDV
Harvard Thai
ZDV
Harvard Thai
ZDV
DITRAME
ZDV
CDC
ZDV
PETRA Arm A
ZDV + 3TC
PETRA Arm B
ZDV + 3TC
HIVNET/SAINT
NVP
14-28 wks
28-36 wks
Intrapartum
>36 wks
Labour
Postpartum/postnatal
1 wk PP
1-6 wks PP
MATERIAL ON HIV/AIDS
SENT BY
MEDICAL MISSION INSTITUTE
UNIT FOR HEALTH SERVICES AND HIV/AIDS
SALVATORSTR. 22
D-97074 WURZBURG
GERMANY
June 2001
UNAIDS
The World Health Organization
Draft Working Document
KEY ELEMENTS IN
HIV/AIDS CARE AND SUPPORT
WHO/UNAIDS
8 September 2000
2
CONTENTS
1.
Introduction
2.
Care Needs
3.
Principles and Values
4.
Key Interventions for Care and Support
5.
Structural Elements for Service Delivery
6.
Prioritisation
3
Appendix: List of Abbreviations
AFRO:
Regional Office for Africa
AIDS:
Acquired immuno-deficiency syndrome
ARV:
Antiretroviral
CBO:
Community based organisation
DOT:
Directly observed therapy
GIPA:
Greater involvement of people living with AIDS.
I-IAART:
Highly active antiretroviral therapy
HIV:
Human immuno-deficiency virus
MTCT:
Mother-to-child transmission
NGO:
Non-governmental organisation
0!:
Opportunistic infection
PAHO:
Pan American Health Organization
PLHA:
People living with HIV/AIDS
SEARO:
South East Regional Office
STI:
Sexually transmitted infection
TB:
Tuberculosis
UNAIDS:
Joint United Nations Programme on HIV/AIDS
VCT:
Voluntary counselling and testing
WHO:
World Health Organization
4
1.
INTRODUCTION
Purpose
A lot of publications have been produced on care for people living with HIV/AIDS. This
document attempts to bring key issues on HIV/AIDS care in one practical and concise
publication. It is intended to provide guidance to all partners in the provision of HIV care
and support in resource-constrained settings. The purpose of this document is to identify the
key elements and interventions in provision of care and support for PLHA and affected
communities. Each element of care is discussed and references for more information on how
this element should be implemented are provided as much as possible. These references
will be interactive for those documents having an electronic file available in WHO or in
UNAIDS Secretariat websites. These references are practical publications useful for the
implementation of the key elements of HIV/AIDS care. This document also covers
structural elements for service deliver}'. Finally, it discusses prioritization of the various
elements of HIV/AIDS care: these two sections are helpful in the process of prioritization
and implementation of HIV/AIDS care interventions listed in this document.
Target audience
The intended audience of this document is policy makers in health care (e.g., senior officials
in government ministries, directors of health and medical services, district health officers,
National ADDS Control Programme managers) and related sectors such as education,
transport and finance. It is also directed to implementers of health policies or care providers
(physicians and other clinicians, including nurses, social workers and counsellors), people
living with and affected by HIV/AIDS, non-governmental organisations, multi/bilateral aid
agencies, UN agencies and other partners working in provision of HIV/AIDS care and
support.
Link to other documents
Following the resolution adopted by the WHO Executive Board in January 2000 and by the
World Health Assembly in May 2000, WHO is developing a Global Health'Sector Strategy
for improving health systems response to HIV/AIDS and Sexually Transmitted Infections1.
This strategy has been developed within the framework of the UNAIDS Global HIV/AIDS
Strategy12. The present paper represents a contribution toward the discussion surrounding the
development of these global strategics, from a care and support perspective, and each
country will need to adapt these key elements in IIIV/AIDS care and support to its own
realities.
2.
CARE NEEDS
2.1. Epidemiology and background
At the end of 1999, there were 33.6 million people living with HIV/AIDS. More than 95%
of them live in developing countries. The epidemic is continuing to spread globally, with 5.4
million newly infected people in 1999. The cumulative number of deaths due to HIV/AIDS
is 18.8 million. 2.8 million deaths due to HIV/AIDS occurred in 1999. HIV/AIDS is the
leading cause of death in sub-Saharan Africa where two-thirds of all PLHA are found3.
Worldwide, the main burden of disease in PLHA arises from a limited-number of common
infections - and their complications - to which PLHA are particularly susceptible, namely
tuberculosis, pneumonia, diarrhoea and Candida infection of the mouth and throat.
Tuberculosis is worldwide the single biggest killer of PLHA.
Appreciation and understanding of the care and support needs of PLHA are essential in
order to develop relevant and adequate care responses. Studies have revealed that needs of
PLHA go beyond clinical care and treatment. PLHA’s needs also include, for the most part,
social support to alleviate the socio-economic impact of HIV (e.g. basic needs for food,
school fees and shelter), psychological support to cope with the implications of having a
life-threatening condition, PLHA’s right to protection in employment, to confidentiality, to
medical care and access to new treatments, counselling, emotional, protection against
discrimination and stigma, social support for their orphans left behind after the patients die,
etc.
1 Global Health Sector Strategy for Responding to HIV/AIDS, WHO, 2000 (draft)
2 Global HIV/AIDS Strategy Framework, UNAIDS, 2000 (preliminary draft for discussion)
3 Report on the global HIV/AIDS epidemic, UNAIDS, June 2000
2.1.1.
6
The need to strengthen responses
Health systems face increasing challenges in providing care and support for PLHA When
one looks at the impact of HP//AIDS on the health care system, several observations can be
noted: for instance, HIV/AIDS lays additional burdens on the already over-stretched health
services and reduces the capacity of health systems to adequately respond to other health
challenges.
Demand for health services increases due to the increasing numbers of
individuals who become ill as a result of HIV infection. This results in increased workload
and congestion of health facilities. Hospital bed occupancy rates have increased with over
55% of beds occupied by PLHA in several most affected countries. In addition to demand
for hospital beds, consumption of medical supplies and drugs has increased.
HIV infection has given rise to a concurrent epidemic of tuberculosis, which requires
additional efforts and resources to address.
The output of health workers in some high prevalence countries can be substantially reduced
by HIV/AIDS because of illness and death among health workers; need to care or attend
funerals for family members or relatives; bum-out due to overwork; and the fear of
perceived risk of occupational transmission of HIV infection.
Some clinical conditions become much more difficult to diagnose and to treat when
associated with HIV/AIDS. This and the chronic nature of HIV/AIDS disease translate into
increased cost of care to both the service and the users.
Difficulties experienced in resource-constrained settings include:
-
low priority for financial support to the health sector nationally and internationally (very
small proportion of health budget in most affected countries)
insufficient remuneration and support for care professionals
serious managerial weaknesses in health sector at all levels
irregular and inadequate supplies of drugs, reagents, and equipment,
J
lack of investment in buildings infrastructure.
-
local production of drugs and other commodities insufficient given the weakness of local
pharmaceutical manufacturers and markets and patent protection
7
Insufficient response to PLHA needs may also be explained by the following factors:
Within the national and health budgets, HIV care has low priority.
Sometimes, health reforms and globalisation do not allow for a strong emphasis on HIV
care.
Loss of staff due to burn-out.
Shortage of relevant HIV information and HIV training opportunities,
Essential drug lists and drugs procurement not adapted to needs of PLHA
Loss of staff due to high HIV-related mortality and morbidity among staff,
Increasing demand while resources are decreasing.
All these factors lead to inadequate provision of care not only to PLHA but also to other
patients.
2.2. Objectives
The goals of providing a care and support for PLHA are
to:
•
reduce HIV-related mortality and morbidity,
•
improve the quality of life for PLHA, and
•
improve the survival of PLHA
Specific objectives are:
•
to strengthen HIV prevention ,
•
to expand greater involvement of PLHA (GIPA),
•
to reduce the impact of HIV on the TB and HIV-related diseases,
•
to mitigate the socio-economic and psychologic impact of HIV on individuals, families,
communities, countries and society at large, and
•
to improve HIV care for vulnerable populations such as young people, pregnant
mothers, drug users and orphans, whose access to care is limited.
8
2.3. Rationale for Care and Support
•
The consensus about the importance of care highlighted the fact that health care is a
human right.
•
Access to care and support also contributes to the prevention of HIV infection. Care
provision offers an opportunity to discuss with the client and significant others how they
might prevent further spread of the infection, and support them in their choices to do so,
e.g. by availing access to interventions that reduce mother to child transmission of HIV,
enabling them to increase their safety as a sexual partners through safe sex and condom
use, and through use of antiretroviral therapy.
•
Care and support for PLHA decreases the spread of infectious diseases that are
common among HIV-infected people, in particular TB and STIs by early diagnosis and
treatment of these conditions.
•
By caring openly and compassionately for HIV infected people, their care-givers
alleviate the fear of their community for HIV infection, and alleviate stigma and
discrimination.
•
Social and economic benefits of care and support for PLHA arise from recognising that
when PLHA live longer and healthier, the loss of income for themselves and their
families is postponed, and the future of their dependents will be better. And, the
economy will benefit through the better performance of its workforce.
•
Care and support for PLHA builds confidence and hope in clients: if the quality of
life of PLHA improves as a result of care and support, hope will be instilled to the
benefit of the individual and the family, and as a result to the society at large.
•
Care and support for PLHA supports the Greater Involvement of People living with
HIV/AIDS (GIPA) in the fight against the epidemic. Beyond opening the possibility
of involving PLHA in policy and decision making, and target action against the
epidemic with more precision, GIPA enables the personalization of HIV infection in
9
provision of health care, prevention, peer counselling, community care and HIV/AIDS
advocacy. This makes non-infcctcd people, institutions and policy makers realize that
HIV is also their problem, and motivates them to do something about it.
10
3. PRINCIPLES AND VALUES
To meet the physical, emotional, social and economic needs of PLHA, care and support
should be governed by the following principles and values:
•
Respect for human rights, ethics, confidentiality, informed consent, privacy, and
individual dignity. Human rights and ethical practices apply equally to PLHA as to other
individuals. Fighting discrimination, enhancing respect of individual autonomy and
human dignity, and pursuing informed consent are all relevant to HIV care and support.
•
Equity: affordable care of acceptable quality should be provided to all people regardless
of gender, age, race, ethnicity, sexual identity, income and place of residence. More
attention should be given to those groups of the population that have more problems to
access care: widows and orphans, pregnant women, children, the elderly, the uneducated
and the poor.
•
Quality of care: care should be of good quality. Interventions and services have
maximum benefit if they are of good quality. There ought to be continuous improvement
in quality of the services. Quality can be measured in terms of the nature of services
provided and in the specific interventions. Measures of quality of services include
indicators such as waiting time, attitude of health workers and the type of facilities
available. Indicators of specific interventions include compliance with recognized
standards in administering the interventions. Quality of services is a strong indicator of
how responsive the services are to the expectations of the people.
•
Efficiency and effectiveness: care should be. provided at reasonable societal costs.
Resources invested should be result-oriented and there should be corresponding concrete
quantifiable results. Efficiency considerations fuel the need to coordinate and integrate
health systems so as to ensure the continuity of service delivery among different
providers and different levels of care.
•
Accessibility and availability: all levels of the health system should make care
accessible to as many people as possible. The provision of care appropriate to the
11
resources available and levels of HIV prevalence need to be decided through local
consensus building that involves the whole community. This requires regular review
with all stakeholders.
Sustainability: initiatives in provision of care and support will remain meaningful - and
other principles of care and support will only be viable - where they are embedded in a
sustainable programme of provision. This requires taking into account human, logistic
and financial resource requirements.
12
4.
KEY INTERVENTIONS FOR HIV/AIDS CARE AND
SUPPORT
There exist several cost-effective HIV/AIDS care interventions for which evidence has been
documented. Key activities for HIV/AIDS care and support are presented below in Table 1
and arc grouped according to their complexity and cost. It should be noted that HIV testing
of transfusion blood, the promotion of universal precautions, and health policy activities,
such as the regulation ofcarc delivery and the drugs supply, should be undertaken
everywhere, and are thus also essential health sector activities.
Tabic 1 : Care and Support activities, according to need, complexity and cost
Essential
activities
Care and
support
activities of
intermediate
complexity
and/or cost
Care and
support
activities of
high
complexity
and/or cost
HIV voluntary counselling and testing
Psychosocial support for PLHA and their families
Palliative care and treatment for common Ols : pneumonia, oral thrush,
vaginal candidiasis and pulmonary TB (DOTS)
• Nutritional care
• STI care and family planning services
• Cotrimoxazole prophylaxis among HIV-infected people
• Recognition and facilitation of community activities that mitigate the impact
of HIV infection (including legal structures against stigma and
discrimination)
ALL THE ABOVE PLUS
• Active case finding (and treatment) for TB, including for smear negative
and disseminated TB, among HIV-infected people
• Preventive therapy forTB among HIV-infected people
• Systemic antifungals for systemic mycosis (such as cryptococcosis)
• Treatment of H IV-associated malignancies : Kaposi’s sarcoma, lymphoma
and cervical cancer
• Treatment of extensive herpes
• Prevention of mother to child transmission of HIV
Post exposure prophylaxis of occupational exposure to HIV and for rape
• Funding of community efforts that reduce the impact of HIV infection
•
•
•
ALL THE ABOVE PLUS
• Triple antiretroviral therapy
• Diagnosis and treatment of opportunistic infections that are difficult to
diagnose and/or expensive to treat, such as atypical mycobacterial
infections, cytomegalovirus infection, multiresistant TB, toxoplasmosis, etc
• Advanced treatment of HIV related malignancies
• Specific public services that reduce the economic and social impacts of
HIV infection
It is a widespread belief that the majority of health care needs of PLHA can be addressed by
ensuring access to medications, in particular antiretroviral therapy. However, this idea falls
13
short of effectively meeting their complete range of medical, emotional, social and
economic needs. PLHA require comprehensive care and support, not just medicines.
For a care and support package for HIV to be comprehensive, it should include elements of
voluntary counselling and testing for HIV infection, psychosocial support, home and
community-based care, and clinical management (including medical, nursing and
counselling care). Many of the activities in each of these areas straddle the divide between
care and support, and prevention. This is one of the reasons why care and support to PLHA
contribute to prevention. Major elements of care and support of PLHA are described below.
Taken as a whole, each contributes to the development of an enabling environment which
is essential for ensuring adequate levels of care, support, and prevention.
4.1.
Voluntary Counselling and Testing for HIV infection (VCT)
Voluntary counselling and testing (VCT) for HIV infection is an entry point for HIV/AIDS
care and prevention. It has several benefits as figure 1 below show. It is therefore important
that voluntary counselling and testing for HIV infection be made available on a much
larger scale than today.
It needs to be emphasised that availability of testing alone is not enough: testing should be
voluntary and confidential, and it should be accompanied by counselling. Counselling is
important to prepare clients to come to terms of their HIV status: this includes dealing with
fear, guilt, stigma, discrimination, care for a chronic condition, the possibility of early death,
and to give them an understanding of what they can and should do about HIV infection,
should they be HIV-infected. It is also important to help people devise or strengthen ways
of staying HIV negative, if they test HIV negative4.
In order to be effective, the implementation of VCT services requires many key elements,
including community awareness, education and mobilization to ensure those wishing to be
tested understand what the test process is and where testing may be undertaken, and to
ensure that those who are tested and found infected are not discriminated against and
supported with their infection, the training of people (health, educational and other staff and
volunteers) in minimum standards of counselling and psychological recognition, acute
4 Voluntary Counselling and Testing Technical Update (UNAIDS, 2000)
14
management and onward referral (and therefore the development of networks of services
and resources for taking up onward referrals from counselling); the provision or
development of support groups for those affected; the provision of physical facilities
suitable for having private, confidential discussions, and monitoring and support for those
doing the complex task of counselling5, 6.
Figure 1: VCT is an entry point for HIV prevention and care
VCT as an entry point for
HIV Prevention and Care
Facilitates
Behavioural
Early Management of
Opportunistic Infections
and STDs
and Contraceptive Advise
3 Voluntary counselling and testing for. HIV infection in antenantal care: an implementation guide, WHO,
1999.
6 Tools for Evaluating Volunteray Counselling and Testing, (UNAIDS, 2000)
15
4.2
Psychosocial support
A key element in care and support is the provision of psychosocial support. Counselling,
spiritual support, support to enable disclosure and risk reduction strategies, medication
adherence, and end of life and bereavement support are all part of psychological support.
This should be part of the care package at all levels. At its most basic level, this requires the
establishment and support of peer-support groups for those found positive, and those
affected by HIV. Many good examples of such services - which act as a focus for education,
training, and provision of material, basic economic, spiritual and psychosocial support -
currently exist in many countries. Those most affected often create such groups through a
need for solidarity in the face of broader public stigma and discrimination. The greater
involvement of people affected by HIV/AIDS (GEPA) is a vehicle for generation of
psychosocial support in communities, and needs to be incorporated and encouraged in
designs for care and support.
4.3.
Home and community-based care
Home and community-based care means any form of care given to PLHAin their own home
and community. It can be care activities that PLHA might do to take care of themselves or
the care given by their relatives, friends or health workers within their homes and
communities. HIV/AIDS being a chronic condition, it is essential to recognize that PLHA
do not always require to be hospitalized and care within their families might be more
appropriate at some stage of their disease. Discharging PLHA back to their communities at
an early stage or not admitting the person in the first place can be more appropriate provided
that the individual’s needs can be addressed outside the institution7. There will be times that
person will need to consult the health professionals for follow up but most of the time,
PLHA are well taken care in their homes , their families and communities. Home and
community care is thus an essential element of comprehensive care for PLHA in a
continuum of care from health institutions to homes and vice versa. For those facing a future
of uncertainty and who are fearful of possible consequences of having their status disclosed
to others because of stigma and discrimination associated with HIV/ADDS8,9, an^ for those
living far from care and treatment facilities, or without the means to obtain transport to
medical and psychosocial support services, provision of care in the home and community
7 Sexual Health and Health Care: Care and Support for people with HIV/AIDS in resources poor settings,
DFID, 1998
s VCT Outcomes, UNAIDS, 2000
’ Opening up the HIV/AIDS Epidemic, UNAIDS, 2000
16
based care is critically important. Such provision requires community-level organisation,
training and support to ensure services are being appropriately implemented and used10.
Nursing care and support to nursing activities in home-based care and elsewhere must be
encouraged11.
4.4.
4.4.1.
Medical management
Diagnosis and treatment of HIV-related diseases
Worldwide, the main burden of disease in PLHA arises from a limited number of common
infections - and their complications - to which PLHA are particularly susceptible, namely
tuberculosis (TB), pneumonia, diarrhoea, and Candida infection of the mouth and throat11
12.
Diagnosis of these infections is usually possible al health centres and district hospitals, and
they are generally amenable to successful treatment with cheap, affordable and effective
antibiotics13,14- Strengthening of the general health services is crucial to ensuring that PLHA
have access to care for common HIV-related diseases.
TB is worldwide the single biggest killer of PLHA, yet a course of TB treatment costs as
little as US$20. In addition to strengthening national TB programmes and harnessing
community contributions to ensure that every PLHA with TB has access to effective TB
care, increased collaboration is necessary between TB and HIV programmes to provide a
coherent response to the dual TB/HIV epidemic15,16,17.
In addition to these common HIV-related diseases, there is a variety of HIV-related
infections and cancers for which treatments are more expensive and, in many parts of the
world, not widely available. These HIV-related infections include toxoplasmosis,
cryptococcosis, pneumocystis carinii pneumonia, herpes simplex virus, cytomegalovirus and
atypical mycobacteria. HIV-related cancers include Kaposi’s sarcoma and lymphoma.
10 AIDS Home Care handbook, WHO/GPA, 1993
11 Nursing Fact sheets in HIV/AIDS, WHO/UNAIDS, 2000
12 Technical Update on Opportunistic Infections (UNAIDS
)
13 Guidelines on Treatment of Opportunistic Infections (WHO/EDM-------- )
c-rn i
14 WHO model prescribing information on essential drugs used in the treatment of HIV infection and i 1 us;
15 TB/HIV: A Clinical Manual (WHO/TB/96.200)
oom
16 Treatment of Tuberculosis: Guidelines for National Programmes, 2 Edn, 1997. (WHO/TB/97.2- )
17 TB and HIV: The Dual Epidemic. (UNAIDS PoV).
17
4.4.2.
Ensure adequate nutritional advice to PLHA
As denutrition is an important feature of advanced HIV infection, it is important to prevent
it. This requires nutritional assessment, nutritional counselling and education that includes
food safety, and, if possible, the development of a plan of action to prevent weight and
muscle mass loss. With some drugs dietary changes are also needed to prevent side effects
and specific symptoms. In some cases provision of nutritional supplements, and the use of
anabolic steroids may be useful to prevent or treat wasting. More information on HIV
infection and nutrition is found in the UN Secretariat Committee on Nutrition Newsletter,
199818.
4.4.3.
Palliative care
Palliative care not only includes the management of physical symptoms, such as pain,
cough, skin rashes, fever, diarrhoea, but also dealing with depression, suicidal thoughts, and
other psychological problems.
It also comprises spiritual support, and bereavement
counselling, and is inclusive of the client and his environment.
It often requires a
multidisciplinary approach.
More on palliative are can be found in the UNAIDS Technical Update on Palliative Care19.
4.4.4.
Prevention of HIV-related diseases.
Fortunately, affordable and effective drugs are available to prevent many of the common
HIV-related diseases responsible for the main burden of illness and death in high HIV
prevalence countries. Isoniazid is effective in preventing reactivation of latent TB20 and
colrimoxazole is effective in protecting against many of the common pathogens (such as
pneumococcus and salmonella) responsible for pneumonia and diarrhoea and their
complications21. The challenge remains to find ways of drammatically increasing access of
PLHA to preventive treatments.
4.4.5
Antiretroviral treatment
While antiretroviral therapy is expensive, it should be recognized that it also represents the
present gold standard for the treatment of HIV infection. Regardless of whether
18 UN Secretariat Committee on Nutrition Newsletter, 1998, Volume...
19 UNAIDS Technical Update on Palliative care
■° Preventive therapy against tuberculosis in people living with HTV. Policy Statement. Weekly
Epidemiological Record 1999; 74: 385-400
Provisional recommendations on the use of cotrimoxazole in Africa.
18
governments can afford to subsidize their availability to the general public, there is the
need to regulate their use to protect their future usefulness. Also, rather than refusing to deal
with these drugs for fear of having to fund them, governments should consider regulating
their use and facilitating access to them by supporting human resource development and
treatment monitoring infrastructures for antiretroviral therapy, so as to build capacity in the
health system to safely and effectively use these drugs22,23. In countries where resources are
more plentiful, there is in addition a strong case to subsidise their use.
4.4.6
Family planning
Family planning is important for PLHA as part of an adjustment strategy that aims to
guarantee or improve a future of their family, including their spouses and children. Limiting
family size might also enable them to have saved enough to contribute to the cost of their
treatment, where such treatment needs to be totally or partly privately funded. It also has a
role in the prevention of mother to child transmission24.
4.4.7.
Promotion of safe sex and condom use to clients in HIV care and support
programmes
In the care of HIV infected people the focus is often on drugs, results of viral load tests and
CD4 counts, and possible toxicity of the treatments received. Contacts with health services
should be used to support preventive behaviour and to promote safe sex or condom use.
When doctors perform poorly in this area, the services should be organized in such a manner
that HIV-infected people get referred to counsellors or services that avail these services to
them25, 26, 27.
4.4.8.
Diagnosis and treatment of STIs
Diagnosis and treatment of STIs are important not only to prevent HIV but also to prevent
complications from STIs. STIs increase HIV transmission, with a factor of 2 to 40. When
an STI is treated, this enhancement of HIV transmission disappears. In addition to
considerations about the cost-effectiveness of STI intervention, the potential to prevent HIV
infection explains why WHO and UNAIDS vigorously promote STI control.
22 Guidance Modules on antiretroviral Treatment, WHO and UNAIDS, 1998
23 Safe and effective use of antiretroviral in resource-constrained settings, WHO/UNAIDS, 2000.
24 RELEVANT FAMILY PLANNING REFERENCES
25 RELEVANT REFENCES ON MALE AND FEMALE CONDOM USE
26 Sex and Youth: contextual factors affecting risk for HTV/AIDS, UNAIDS, 1999
27 RELEVANT REFERENCES ON ADOLESCENT HEALTH AND HTV/AIDS
19
Where STI control is insufficient, it would make sense to strengthen it first in services
where known HIV infected people consult. Indeed, targeting PLHAwith enhanced STI
treatment services has significant benefit beyond that individual: chances of HIV
transmission to sexual partners are reduced. Practical information on STI control can be
found in various publications28,29,30, 31, 32.
4.4.9.
1.2
Intervention to reduce mother to child transmission of HIV
million children under the age of 15 years arc infected with HIV now, and a cumulative
total of 3.6 million children have already died of AIDS since the beginning of the epidemic.
Mother to child transmission (MTCT) is responsible for more than 90% of these infections.
Strategies to reduce mother to child transmission of HIV infection include primary
prevention of HIV infection among women, family planning, antiretroviral therapy,
restricted use of invasive obstetric procedures during vaginal delivery, and replacement
feeding for the infant.
In the field, pilot programmes on prevention of MTCT are being undertaken. Their
monitoring and evaluation will provide many lessons in taking the MTCT experiences to a
larger scale. So far, it is known that MTCT prevention has to face many challenges: the
weakness of antenatal care infrastructures and services in many developing countries, lack
of awareness of HIV transmission and personal HIV infection in many pregnant women,
reluctance to engage in VCT for HIV, relatively weak compliance in taking ARV and
dilemmas in maintaining infant feeding options.
The UNAIDS technical update on mother to child transmission of HIV provides an
overview and strategic guidance for the implementation of interventions to prevent mother
to child transmission of HIV33.
28 Consultation on STD interventions for preventing HIV: what is the evidence?, WHO/UNAIDS, Geneva
2000
29 Management of sexually transmitted diseases, WHO/GPA 1994
30 Guidelines for Sexually Transmitted infections Surveillance, WHO/UNAIDS, 1999.
31 The public health approach to STD control, UNAIDS Technical Update, 1998.
12 Sexually transmitted diseases: policies and principles for prevention and care, WHO/UNAIDS, 1997.
“ CITE REFERENCE
20
4.4.10.
Post exposure prophylaxis of HIV infection for occupational exposure to HIV
and for rape victims
Interventions to reduce HIV transmission in the health care setting include the use of
universal precautions when handling potentially infected material, e.g. wound care and
surgical procedures, and ensuring the safety of blood and blood products.
While the use
of universal precautions is clearly more cost-effective than that of antiretroviral therapy
after an occupational exposure to HIV (or possible exposure to HIV through rape), post
exposure prophylaxis of HIV infection is also among the interventions to be considered
here .
4.5.
•
Behavioral issues in IHV/AIDS care and support
Avoid stigma and discriminatory attitudes: Improving access to HIV/AIDS care and
support requires conducive behaviour. Health professionals, relatives and friends should
avoid stigma or discrimination against PLHA: stigma and discrimination constitute
obstacles to care service development and use, and may jeopardise access to care,
openness, adherence to treatment and the whole quality of care.
•
Management of drug addicted people and vulnerable groups: when present, drug
addiction can greatly complicate the clinical management of HIV infection. Continued
IV drug use might also put others at risk of becoming infected, in particular when
needles are shared or when drug users resort to sex work to finance their habit. For both
the individual client and society it is therefore important that care and support services
take into account the management of drug addiction in HIV infected clients. Care
provision should be an opportunity to explain and recommend to the clients, particularly
vulnerable groups (e.g. youth, sex workers, mobile and migrant groups, intravenous drug
users, men having sex with men) cost-effective HIV prevention methods that could be
used to protect themselves and their entourage.
•
Social and legal support: community involvement and household assistance to mitigate
the impact of HIV/AIDS are examples of social support. Providing food support,
volunteers for daily duties, orphan support, PLHA peer support, welfare services, and
legal support are also part of social support and should be part of a comprehensive care
and support package.
34 ‘Title of relevant publication on universal precautions, WHO, 1993’
‘The safe and effective use of antiretrovirals in resource constrained settings .
21
STRUCTURAL ELEMENTS FOR SERVICE DELIVERY
5.1. Identification of actors of comprehensive care and support for PLHA
The provision of comprehensive HIV care and support requires the inputs of many people,
ranging from family members to nurses and doctors, and from community workers to
psychologists. These people can be grouped according to their affinity with, and access to
training in, different care and support activities. There will be people involved more in
clinical care, usually the formal health sector where health professionals offer relief of
symptoms and diagnosis and treatment of specific diseases and psychosocial problems, and
those more obviously involved in social support provided by community based
organisations, counsellors or support groups, and social sector organisations.
Figure 2: Care and support continuum
22
5.2
Human resource development.
The response to HIV/AIDS requires additional skills and approaches that may not have
been characteristic of the health system. This includes not only skills for effective clinical
management of PLHA but also counselling and psycho-social support skills. These skills
are now essential for the response and need to be developed because of the particular
PLHA care requirements. There is need to develop human resource management
strategies that take into account the impact of the epidemic on the health system as
discussed earlier: basic training as well as continuing education will be necessary to
produce qualified health personnel in sufficient numbers to cope with the epidemics.
5.3
Guidelines and training.
National guidelines need to be updated or developed on all essential and enhanced elements
of comprehensive care. Curriculum revision of existing basic health cadres training from
nursing aides to medical specialist training needs to be undertaken. In service training on
new interventions such as counselling or ARV management needs to be strengthened.
Existing guidance from the global level needs to be widely distributed.
5.4.
Strengthening the links among various channels of comprehensive care
To improve the efficiency of service delivery, it is necessary that these people, and the
services in which they work, collaborate together, so as to create a continuum service, as
depicted in Figure 2. The concept of care across a continuum expresses the need for care
through all stages of HIV infection, which should be accessible at several points along a
continuum from VCT services, health services (primary health care (PHC), secondary and
tertiary health care) and social services to community-based support and home care35*,3S,37,
35 HIV/AIDS care and support for persons living with HIV/AIDS, USAID discussion paper, 1999
34 Model ofcarc for patients with HIV/AIDS, Osbome, van Praag and Jakson.
37 The international Newsletter on AIDS prevention and care. AIDS Action. January-March 1999.
38 39
,
•
23
•
. An important feature of the concept is the explicit recognition that community
based activities play a vital role, not only for HIV care and support, but also for HIV
prevention, and a formal recognition of the links between care and prevention. Depending
on the needs of the patients, they are provided care at PHC level, or secondary or tertiary
level of health services. The health services may refer the patients to the community-based
care organisations that in their turn refer the patients to health care services when necessary.
Thus, the system needs to strengthen the referral system between different levels of health
services and between health services and community based care.
5.5
Infrastructure development
Health care services should be established where necessary. VCT services and laboratories
need to be established and adequately staffed and equipped. Where advanced ARV
treatment is given, there is need for basic facilities to monitor the side effects (toxicity) of
the drugs and to measure the efficacy of the treatment by CD cell counts and viral loads.
5.6.
Drugs and medical supplies (commodities, condoms, reagents, needles and syringes,
surgical equipment and supplies, gloves, etc.): having human resources and infrastructure is
not enough to provide good quality health care. Another important ingredient that the
government should secure is drugs and medical supplies. Most people living with
HIV/AIDS have very limited access to essential medicines.
Essential medicines for
HIV/AIDS include established essential-drugs (for pneumonia, TB, diarrhoea, Candida,
palliative care, STI treatment), drugs to prevent mother-to-child transmission, and newer
high-cost drugs (for opportunistic infections, HIV-related cancers, and highly active
antiretroviral therapy - HAART). In order to increase access to drugs and medical supplies,
four strategies are suggested38
40:
39
38 HIV/AIDS care in Uganda, MOH, March 2000.
39 Enhancing care initiative, Harvard School of Public Health, 1999 Report.
40 The UN strategy for increasing access to HIV-related drugs, IIT on access to drugs, 2000.
1.
Rational selection and use
24
- Drugs of choice are identified for specific priority
indications based on best evidence on local morbidity patterns and drug efficacy, safety,
quality, and cost-effectiveness.
2. Affordable prices - “Best prices” for governments, NGOs and people living with AIDS
will be sought through better price information, negotiation, competition, and reduction
of duties, taxes, and distribution costs.
3. Sustainable financing - There will be strong advocacy for reallocation of government
resources to HIV/AIDS care (taking 'from outside health sector, not from HIV
prevention or other priority health problems) and expansion of external financing.
4.
Reliable health care services - Effective use of new HIV-related drugs and prevention
of resistance depends on the ability of health care services to diagnose HIV infection, to
diagnose associated illnesses and adequately to monitor treatment
5.7.
Financing : advocacy programmes to get resources mobilised at national and
international levels for care should be developed. Financing of health systems for effective
response to HIV/AIDS must achieve two things. First there must be an overall increase in
the amount of funds available in health systems. This is because the magnitude of the
HIV/AIDS problem requires a lot more resources to deal with than what is available in most
countries. HIV/AIDS increases the cost of providing health care. The second goal must be to
implement measures that offer protection to people living with HIV/AIDS and their families
from financial ruin or reduced access to health services as a result of increased cost of health
care.
5.8
Reorganisation of service delivery and partnership: the above-mentioned inputs need
to be well planned, equitably distributed and effectively implemented. Supervision,
monitoring and evaluation of the services should be ensured. Comprehensive care for PLHA
25
should be accessible at all levels along a continuum ranging from formal health and social
services to community based services and home care. Partnerships between communities
and institutions within a catchment area should be developed in such a way that an effective
referral system between VCT services, basic hospitals and health centres, and home care
services is strengthened. Hospitals, NGOs, and CBOs should ensure complementarity and
discharge planning across the
continuum.
In view of the large number of actors
(stakeholders and partners), there is a need for synergy through effective collaboration
among different actors or centres on the continuum of care. There is also a need to
harmonise the inputs of different partners so that efforts are complementary and relevant to
priority PLHA care and support needs. This synergy
is essential for improving the
effectiveness of different levels and actors within the continuum of care.
5.9. Other factors to take into account in the reorganisation:
•
Essential care delivery needs not only trained staff but also a conducive working
environment. This would include: space, privacy and staff time for VCT in general
health services and for particular groups such as young people, antenatal services;
operational procedures for patient care, for referrals to home care or enhanced care to
ensure a care continuum and for universal precautions, and monitoring of coping
capacity and adherence to standards to be put in place.
•
Care for the carers, including activities to prevent burn-out of staff and access to post
exposure prophylaxis at the institutional level, VCT services for health staff,
antiretroviral treatment and institutional policies for HIV infected staff.
•
Universal precautions and safe blood supplies. Institutional policies for infectious
disease control should be developed or updated. These include institutional procedures
for the rational prescription of blood transfusions. Order and distribution procedures for
HIV test kits, gloves, blood collection equipment and sterilisation facilities.
26
5.10.
Facilitating community mobilisation and action
Health services have been traditionally perceived as possessing the knowledge, expertise
and means to make people healthy. However, this has often led to complete dependency of
people on health services and diminished the autonomy of individuals to safeguard their
health. Therefore, when health systems experience difficulties or fail to perform well, health
outcomes decline significantly. Therefore the people’s responsiveness is as important as the
services. Individuals and their behaviour -- sexual relationships, eating habits, substance
abuse, or drug compliance - determine the effectiveness of the intervention.
Health systems ought to aim at empowering individuals and communities to identify health
challenges and take measures to promote and protect their health and prevent disease. One
way of empowering individuals and communities is by providing appropriate, practical and
timely information. The participation of communities and affected individuals is considered
essential for a responsive campaign. The more the users participate the more the services
may be made more responsive to the expectations of the people. Broader participation also
ensures that there is a multiplicity of efforts and skills that are needed for the scale and
complexity of the epidemic. Partnerships need to be developed between health services and
communities through mutual influences and support.
5.11.
Policy development and legislation: several relevant policies and regulations need to
be formulated: e.g., HIV testing policies for diagnostic and clinical purposes at national and
institutional level, including professional codes need to be reassessed to ensure
confidentiality and disclosure policies of HIV testing and result provision, prevention of
discrimination and stigma against PLHAin health settings; formalization of counselling as a
duty or occupation; formulation of HIV care policies and national standards of essential and
27
comprehensive HIV care; policies on collaboration between private and public sector and
with NGO/CBOs to ensure care provision and referrals across a continuum from institution
to home. National drug policies and essential drug lists should be updated to reflect the
needs for HIV care. Regulation and standardization of use of relevant HIV treatments (e.g.
antiretroviral treatments at accredited sites, for MTCT and post exposure prophylaxis,
preventive therapies. Policies to protect the rights of people living with HIV/AIDS need to
be developed, promoted and implemented.
5.12.
Monitoring and evaluation
HIV/AIDS comprehensive care programs must include a monitoring and evaluation
component to refine, adapt and strengthen existing and new services and should be budgeted
for and implemented in all HIV/AIDS comprehensive care programs. Services will only be
effective if they are consistently evaluated to measure effectiveness, efficiency, quality,
usage and acceptability in the community. Programs should seek to collect, analyse and use
data that reflect the extent to which quality care is provided at all levels of the health system,
and to identify any problems and potential gaps requiring remedial actions, including
participatory assessments and evaluation involving communities.
This implies developing indicators and measurement tools appropriate to compare the
quality, extent and coverage of care services at each level with needs, demands and set
standards and norms. It also implies that monitoring and evaluation systems must be
designed to respond to questions that are relevant for decision-making purposes. More
information on HIV/AIDS monitoring and evaluation can be found in the guide to
monitoring and evaluation of national AIDS Programme41.
41 National AIDS Programmes: A guide to monitoring and evaluation, UNAIDS, WHO, MEASURE, etc.
2000.
28
6.
PRIORITISATION
As resources are never sufficient to satisfy the needs of all, resource allocation is a key
activity in public decision making, also in HIV care. WHO and UNAIDS advocate that in
care and support resources be allocated taking into account the principles of respect, equity,
quality of services, efficiency and effectiveness, accessibility and availability, and
sustainability so as to make services available and accessible to as many people as possible.
In order to protect the rights of the poor, it is also important to define what services should
be considered as first priority and which services of intermediate or high complexity and
cost could be considered when more resources are available. Table 1 attempts to do this.
As Table 1 shows, there are three levels of HIV/AIDS care and support interventions on the
basis of their complexity and cost. Ideally, all components should be provided within the
health system. According to resources available in a setting, the focus might be on the
provision of essential (basic) care interventions (Type 1 settings) or on the provision of
intermediate cost/complexity care interventions (Type 2 settings) or on the provision of
more advanced and highly complex care interventions (Type 3 settings). One might think
about a gradual dynamic progress with the ultimate goal of obtaining the standard of care in
type 3 settings accessible and available to all PLHA. But in real life of most countries, it is
seen that both essential and more complex and costly elements of HIV/AIDS care and
support co-exist. For instance antiretroviral drugs (ARVs) are found in most countries, but
only for very limited number of patients and in a few clinics in resource-constrained
settings. Whenever more resources (human, technical and financial) are available,
HIV/AIDS care and support can be scaled up to increase coverage and/or additional
elements of care can be considered. The process of enhancing HIV care and support is seen
not to be a static “process” but an evolving, dynamic process in which new HIV care
elements can be added or integrated depending on the amount of human and financial
resources available. Each country may consider a different set of enhanced care elements,
that could change over time and place depending on socioeconomic conditions.
While different health sector activities differ in their complexity and cost, it is clear that
essential (basic) and complex and high cost services co-exist in all health systems. When
essential services don’t cover the majority of their target population some would argue that
these essential services must be improved before one can even think of public funding or
29
other public support for more complex and high cost services. It is suggested that the
strategic planning approach be used, with the objective to make progress where possible, by
choosing from Annex 1 the activities which could be implemented in effective and
sustainable way. The process of making the choice and the formulation of a strategic plan42
to enhance care and support should involve all stakeholders in HIV care, including NGOs
and PLHA groups. The outcome of the exercise should be a community consensus about
the future content of the local care and support package, about how service delivery will be
optimised, and about how different components will be financed.
WHO/PAHO has also developed a model of prioritisation of care options in relation to
resource availability. The advantage of this model is that it covers not only the health sector
but also the community and home based care activities43. WHO/SEARO has developed a
concept of care which suggests a step-by-step approach in the implementation of HIV/AIDS
care activities44.
42 Guide to strategic planning process for a national response to HTV/AIDS, UNAIDS, 1999.
43 Building Blocks: Guidelines for providing comprehensive care to persons living with HTV/AIDS in the
Americas, WHO/PAHO, 1999.
44 Planning and implementing HIV/AIDS care programmes: a step-by-step approach, December 1998
30
Annex 1: Comprehensive HIV/AIDS Care and Support
________ activities by level of service delivery.________
COMMUNITY
LEVEL
•
• Financial support
• Legal representation
• Management of drug banks
• Provision of sterile needles
• Hospice care
• Bereavement and funeral support
♦
•
Level of Health System
Day care centers
•
•
•
•
•
•
•
•
•
•
Emotional support and counselling
Community information, education, communication (IEC) and
participation
Personal accompaniment
Support groups
Nutritional assessment, counseling and food safety
Food kitchens and programs
Multidisciplinary health practices
Condoms and bleach
Access to family planning methods
Advocacy
Assistance to orphaned children
Formal sharing of experience and networking
•
Adherence to medications and complementary measures
»
•
•
•
•
Universal precautions
Safer sex activities, including family planning
Personal and environmental hygiene practices
Nutrition and food safety measures
Knowledge about when and where to seek additional support
HOME CARE
LEVEL
Annex 1: Comprehensive HIV/AIDS Care and
Support activities by level of service delivery
___________ (cont'd)L_________________
TERTIARY
LEVEL
Level of Health System
SECONDARY
LEVEL
PRIMARY
LEVEL
•
♦
•
•
•
•
•
•
•
•
•
•
Use of steroids and other hormones
Elective surgery
Management of anxiety and depression
ARVs for IIAART
Antitumoral treatments
Management of chronic pain
Management of anal and procto-colonic syndromes
Parenteral nutrition
Post-exposure prophylaxis (PEP) among health providers
Treatment of toxoplasmosis, PCP and other relevant OIs
Management of complex manifestations of HIV
ARVs for I-IAART •
• Screening, prophylaxis and treatment of toxoplasmosis and PCP
• Nutritional interventions, including anabolic steroids
• ARVs for selected patients
• Management of sexual functions
• Counseling for secondary prevention
• Screening, prophylaxis and treatment of TB
• Prophylaxis of PCP
• Confirmatory diagnosis of HIV infection and related conditions
• ARVs to prevent MTCT
’ Breast milk substitutes/altematives to breast-feeding
• Vaccination against tetanus and HBV
♦ Access to safe blood and derivatives*
• Clinical and laboratory monitoring of progression of disease
Flu vaccination
• Prophylaxis/treatment of TB, toxoplasmosis and PCP
• Management of HIV-related diseases
• Nutritional supplements (vitamins, micronutrients)
• Sensitivity-based management of STI
• ARVs to prevent MTCT
♦ Breast milk substitutes/altematives to breast-feeding
• . Vaccination against HBV
•
•
•
Voluntary and confidential counseling and testing
Management of pain, malaise and fever
Education on personal and environmental hygiene, universal
precautions, safer sex and family planning
♦ , Nutritional assessment, counseling and food safety
• Syndromic management of STIs
• Clinical diagnosis of HIV-related diseases
• Vaccination against tetanus
* In countries where transfusional services are available at the primary level, this component
should be available at the primary level.
5
MATERIAL ON HIV/AIDS
SENT BY
MEDICAL MISSION INSTITUTE
UNIT FOR HEALTH SERVICES AND HIV/AIDS
SALVATORSTR. 22
D-97074 WURZBURG
GERMANY
June 2001
PolJiative Care
UNAIDS
Technical update
October 2000
-
‘UNAIDS Best Practice Coie^-cr
,Zrr''u»''*'w
>iS- Sxs"
06893
C
a«°
VV°”£S*
At a Glance
UNAIDS Best Practice materials
Palliative care aims to achieve the best quality of life for pa
tients (and their families) suffering from life-threatening and in
curable illness, including HIV/AIDS. Crucial elements are the re
lief of all pain-physical, psychological, spiritual and social and
enabling and supporting caregivers to work through their own
emotions and grief.
Palliative care has relieved the intense, broad suffering of people liv
ing with HIV/AIDS but the latter brings a number of challenges to its
philosophy and practice including:
The complex disease process with its unpredictable course and wide
range of complications, which means that palliative care has to
balance acute treatment with the control of chronic symptoms;
Complex treatments which can overstretch health services;
The stigmatization and discrimination faced by most people living
with HIV/AIDS;
Complex family issues, such os infection of both partners;
Role reversal in families, such as young children looking after their
parents;
Burdens on health care workers.
A wide range of palliative care is needed for people living with HIV/
AIDS, including:
Pain relief;
Treatment of other symptoms such as nausea, weakness and
fatigue;
Psychological support for psychological problems;
Spirituol support and help with preparation for death;
l he Joint United Nations
Programme on HiV/AIDS (UNAIDS)
publishes materials on subjects of
relevance to HIV infection and
AIDS, the causes and consequences
of the epidemic, and best practices
in AIDS prevention, care and
support. A Best Practice Collection
on any one subject fypical/y
includes a short publication for
journalists and community leaders
(Point of View); a technical summary
of die issues, challenges and
solutions (Technical Update); case
studies from around the world (Best
Practice Case Studies); a set of
presentation graphics; and a listing
of Key Materials (reports, articles,
books, audiovisuals, elc.) on the
subject. These documents are
updated as necessary.
‘technical Updates and Points of
View are published in English,
French, Russian and Spanish. Single
copies of Best Practice materials are
ava liable free from UNAIDS
Information Centres. To find the
closest one, visit the UNAIDS
website (http://www.unaids.org),
contact UNAIDS by e-mail
(unaids@unaids.org), or telephone
(—41 22 791 4651), or write to the
UNAIDS Information Centre,
20 Avenue Appia, 1211 Geneva 27,
Switzerland.
Support for families and carers-help with nursing, infection con
trol and psychological support.
To ensure that effective palliative care is provided for all people living
with HIV/AIDS, governments must tackle the misconceptions that pal
liative care is only for people approaching death. They also need to:
improve the training of health and community workers, and gen
eral health education, including tackling stigmatization;
make good palliative care widely available in hospital, hospices
and in the community for people living at home;
provide access to the necessary drugs;
provide support for carers, counsellors and health care workers;
recognize the special needs of children.
AIDS Palliative Care. UNAIDS
Technical update. English original,
October 2000.
I. UNAIDS
II. Series
1. Palliative Care
2. Medical/Nursing Staff
3. Voluntary Workers
UNAIDS, Geneva
October 2000
WC 503
UNAIDS Technical Update : AIDS: Polliotivc C_o_rc_
HSi
38
What is palliative care?
Palliative care is a philosophy of
care which combines a range of
therapies with the aim of
achieving the best quality of life
for patients (and their families)
who are suffering from lifethreatening and ultimately
incurable illness. Central to this
philosophy is the belief that
everyone has a right to be
treated, and to die, with dignity,
and that the relief of pain physical, emotional, spiritual, and
social is a human right and
essential to this process.
broad suffering of people living
with HIV/AIDS. However, HIV/
AIDS has challenged the ideas of
palliative care because of its
specific dimensions:
3
The course of HIV/AIDS is
highly variable and
unpredictable, with a wide
range of potential
complications, rates of
progression, and survival.
Some patients remain free of
serious symptoms for a long
time; others experience
alternating periods of
increasing dependency with
This philosophy of care developed
out of the treatment of patients
dying in hospital, usually from
cancer It led to the establishment
of the hospice movement, and
palliative care is now provided for
patients living with many life
threatening diseases, including
HIV/AIDS.
Palliative care ideally combines
the professionalism of an
interdisciplinary team, including
the patient and family. It is
provided in hospitals, hospices
and the community when patients
are living at home. This care
should be available throughout a
patient’s illness and during the
period of bereavement. An
integral part of palliative care is
providing the opportunity and
support for caregivers to work
through their own emotions and
grief, which inevitably arise from
their work.
Carers work hard to remain
sensitive to patients' personal,
cultural and religious values,
beliefs and practices, and to
ensure effective communication
with patients, their families and
others involved in their care.
Palliative care for people with
HIV/AIDS
Experience shows that palliative
care can relieve the intense,
AIDS: Palhstuc C=-c : UNAIDS Tcchr.:c.o!.Up
s:
The complex disease
process.
episodes of acute illness, or
suffer frequent non-life
threatening complications
throughout their infection. So
palliative care for HIV/AIDS is
- unlike that for other
illnesses-a balance between
acute treatment and attending
to the control of chronic
symptoms and conditions.
Patients also vary in their
emotional response to the
infection; this again
complicates the planning and
delivery of palliative care.
B
Complex treatments
A wide range of treatments for
HIV/AIDS patients is now
available. Antiretroviral drugs
(ARV) have been shown to be
highly effective in controlling
the progress of HIV disease, but
their high cost means they are
not readily available to most
patients in developing coun
tries. Patients may experience
many treatable opportunistic
infections and other symptoms,
which puts stress on health
delivery systems as well as
creating compliance problems
when the treatments produce
unpleasant side-effects. As HIV/
AIDS patients are living longer,
they may become more de
pendent on health care workers,
and this can create psychologi
October 2000
cal problems for both patients
and carers.
Stigmatization and
discrimination.
People living with HIV/AIDS
face a very specific set of
psychosocial problems. Many
patients have to live with
stigmatization and discrimina
tion, even in high-prevalence
countries where HIV affects
nearly every member of the
population. People are reluc
tant to be open about their HIV
status, thus increasing their
feeling of isolation, and carers
may be wary of disclosing the
positive status of a sick relative.
In communities where HIV is
less common, people with HIV
are often from marginalized or
minority groups, such as drug
users, men who have sex with
men, or sex workers. They may
have less well established
support networks, and face
added discrimination if they
are suspected of being serop
ositive.
Complex family issues.
HIV/AIDS has a major effect on
families, especially in areas of
high prevalence and where
most patients are young and
economically active. Both
partners in a relationship may
be infected. Or often the
partner of someone with HIV
may be unsure if he or she is
infected, and thus the illness of
one partner raises worries
about infection in the other as
well as anger with the infected
partner. If a child is infected,
the mother, and often the
father, will usually be infected.
Siblings may also be infected.
Financial problems increase as
the breadwinner becomes ill
and children will often not be
able to continue, or even start,
schooling.
■ ■■■■■■■ MSS® '
■
Role reversal in families.
HIV care often involves older
people looking after their
younger, previously productive
children, without the financial
contribution from those
children. This has resulted in
harsh economic and social
consequences. When people
become unwell with HIV
disease, and are unable to
continue working Io support
lheir family, they may return to
their parents to be cared for
during the last stages of their
illness. Old people are being
left to care for their grandchil
dren. In other homes, children
have become the main carer
for their parents or their sick
siblings. Child carers need
special emotional and practical
support.
H
The burden on health care
workers.
Caregivers working with HIV/
AIDS patients face causes of
stress unique to this condition.
So many patients are young
and health workers caring for
people with late-stage HIV
disease face the death of all
their patients. Eventually,
workers may become with
drawn and fatigued by multiple
losses and the complex care
needs of patients. In develop
ing countries, these stresses
are exacerbated by the lack of
resources, in turn creating
feelings of hopelessness
because workers feel they have
so little to offer patients in
terms of treatment. In palliative
care, the mental health of
health care workers is vital if
they are to remain empathic
and effective in the direction
and delivery of care.
The range of care needed for the patient
Treatment of symptoms
PREVALENCE OF SYMPTOMS: Multi-centre French National Study
(314 people) '
Prevalence
Symptom
Pain----------- -------------------------------------- ------------------- --------------------
52%
Tiredness___ ___ ____ __ __ __ ______________
50%
Anxiety.............. ...... ............................ ...... ................. .........................
40%
Sleep disturbance____________________________________ 37%
Mouth sore....................................... ..................... ............... ..............
33%
Sadness............ ..................................... ...... .................... ...................
32%
Weight loss—___________________________________________
31%
Nausea____________________ ____ _________________________
28%
Fever....................................................................... ............................. ..
27%
Cough__________________________________________ ______ 27%
Depression__________________________ ___ ............ ............ ......
24%
Diarrhoea________________ ____________________ ______ ____
24%
Skin problem._ _____________ ___ ___ __ _____ 24%
Pruritus_______________________________ ___ ___ _____ _____
23%
Respiratory problem__________________________ __ _______
22%
Vomiting........................................................... ................ ...... ...........
20%
' Larue F, Brasseur L, Musseault P, Demeulemeester R, Bonifassi L,
Bez G. Pain and symptoms during HIV disease. A French national study.
J Palliative Care 1994: 10(2):95
The medical management of
people with AIDS is a balance
between acute treatment and
trying to control symptoms. Most
people living with HIV/AIDS
suffer from many symptoms,
including pain. These symptoms
can occur at the same time, can
affect one or more body
system(s)/function(s) and can
lead to other symptoms,
including anxiety and depression.
As people reach the end of their
illness, it may be inappropriate to
continue investigations and
treatments that will have little
long-term benefit and merely
add to the distress of the patient.
However, some of the HIV
associated illnesses and
opportunistic infections (Ols) are
easy to treat - for example,
tuberculosis-and should be
diagnosis of Ols is important at
any stage of HIV disease.
Wherever possible, the person
with HIV should decide about
his/her treatment and be
informed of the options;
educating the patient is an
essential tenet of palliative care.
He/she should be helped to
understand the limits of any
treatment, and its outcome.
1.
Pain
Pain relief is paramount for
people living with HIV/AIDS. Pain
is what the patient says hurts. It
is always subjective, never what
others, such as caregivers, think
it ought Io be. Every patient
should be helped to lead as painfree a life as possible. Health
workers should not withhold pain
relief because they worry that a
treated. Early and accurate
October 2000
UNAIDS Technical Update : AIDS: Palliative Core
patient will become addicted to
pain killers. Pain medication
should be reviewed frequently
and increased when necessary.
Pain should be controlled in a
way that keeps the patient as
alert and active as possible.
used instead of analgesics.
Pain relief should begin with a
straightforward explanation of
the causes of pain. Many pains
are best treated with a
combination of drug and non
drug measures.
a
"By mouth". If possible an
algesia should be given by mouth.
a
"By the clock". Analgesics
should be given at fixed time
intervals. The dose should be
titrated against the patient's
pain and the next dose should
be given before the previous
one has fully worn off. In this
way, it is possible to relieve pain
continuously.
A relatively inexpensive yet
effective method of pain relief
exists for the majority of people
with pain. The keys to this
method are:
Unlike cancer, pain for AIDS
patients is not permanent, but
temporary and associated with
infections. So if the infections are
treated energetically, the pain
reduces and less pain control is
needed. But there is often more
than one source of pain and each
needs to be diagnosed and
It is important to remember that
emotional pain, the fear of dying,
for example, or the pain of guilt,
the meaninglessness of life, can
be as real and hurt just as much
as physiologically inspired pain.
The psychological and spiritual
suffering of AIDS patients can be
concerning the patient's disease,
he or she may feel even more
isolated and this can lead to
more pain and fears about the
pain worsening. The problem of
Step 1
Aspirin or paraceta
mol (simplest and
most widely
available
analgesics)
With or without
non-steroidal
anti-inflammatory
drugs such as
ibuprofen or
indomethacin
If they do not
relieve the pain,
If they do not
relieve the pain,
move to step 2
move to step 3
Adapted from Cancer pain relief, second edition, WnO, 1996 and Douleurs sans frontiers,
1998
■
"By the ladder". The sequen
tial use of analgesic drugs is
shown in the figure:
of inadequacy among carers.
■
Psychotropic drugs, however, are
not analgesics and should not be
AIDS: Palhgti
. UNAIDS Technical Updot.
Initial management should
include the diagnosis and
treatment of underlying infection.
If no cause can be found and
there is no blood in the stools or
dihydrocodeine
Physical pain can lead to anxiety
and/or depression, which in turn
can lower a person's pain
threshold. If there is a conspiracy
of silence in the family
patients may need an
appropriate psychotropic drug in
addition to analgesia, otherwise
the pain may remain intractable.
Diarrhoea and constipation
Step 2
Codeine or
unusually severe.
Very anxious or depressed
2.
The analgesia ladder
treated.
uncontrolled pain con create
anger from the patient and the
family, and anger and/or feelings
Recently, pain guidelines have
recognized that pain suffered
by people with HIV disease is
very like that of cancer pain.
For this reason, carers should
rapidly advance to step 3
medications. When opiate
analgesia is given, nausea
and constipation commonly
occur and it will be necessary
to treat these at the same
time.
"For the individual". The
choice and dosages of
analgesics will vary widely
from individual to individual
and must be tailored
accordingly. Keeping a pain
score is useful for adjusting
the dose of pain medications.
constant fever, diarrhoea should
be treated with oral agents such
as loperamide (up to 16 mg per
day in divided doses) or codeine
(15-60 mg every 4 hours). People
with diarrhoea should take plenty
of fluids or use oral rehydration
solutions to avoid dehydration. If
the person has diarrhoea
immediately after eating, the
initial problem could be lactose
intolerance or pancreatic
October 2000
gi
KJ
insufficiency. A review of the diet
and an attempt to temporarily
Summary of treatment for oral and oesophageal infections
eliminate milk products or fat
may be helpful. A stool with the
consistency of thick soup may be
Gingivitis
oral hygiene
metronidazole 400 mg twice daily for 5 days.
betadine mouth wash
Oral candidiasis
topical or systemic anlifungals
caused by the mechanical
obstruction by o hard stool or a
tumour, and might be treated
(e.g. nystatin oral suspension 2-4 times daily,
miconazole oral gel (2-4 times daily) or
amphotericin lozenges (10 mg 2-4 times daily)
with an enema rather than
something to decrease motility.
Constipation may result from
prolonged bed rest, profound
cachexia {weakness through
considerable weight loss), a poor
diet, or opioid use. Treatment
includes dietary advice, increased
fluid intake and the use of stool
Oesophageal
candidiasis
or severe oral
candidiasis
systemic anlifungals (e.g. ketoconazole 200
mg twice a day for 10-14 days) or fluconazole
200 mg for 3 days
Mouth ulcers
1% gentian violet
prednisolone 10 mg daily for 5 days
softeners and laxatives.
3. Nausea, vomiting, anorexia
and weight loss
Nausea and vomiting can be
caused by drug therapy, central
nervous system infections or
space occupying lesions, gastro
intestinal infections, or blockage
of the gastric outlet or proximal
duodenum by intra-abdominal
tumours (most commonly a
lymphoma or Kaposi's sarcoma).
Prochlorperazine (5-10 mg 2-3
times daily) is useful for mild
nausea.
Metoclopramide (1 0
mg every 4-8 hours) or ginger is
useful for nausea caused by
gastro-intestinal disturbance.
However, it may cause
neurological side effects in
people who are cachexic. It
should not be used in intestinal
obstruction. When nausea is
caused by central nervous system
disorders, low doses of
antidopaminergic drugs such as
haloperidol may be useful.
If oral and oesophageal infection
is present, antifungal treatment
may improve dysphagia
(problems with, or painful,
swallowing) considerably.
a mw ■■■■■■■
Nutritional support with
multivitamin and micronutrient
supplementation may be useful,
with, if possible, advice from a
dietician. Making meals smaller,
more appetizing and more
frequent may improve dietary
intake.
People with advanced HIV
infection may have profound
weight loss with loss of muscle
bulk: the so-called "wasting
syndrome". Although dietary
advice, antiemetics, appetite
stimulants, treatment of
diarrhoea, and anabolic steroids
may be of some benefit, this
usually has a poor prognosis.
4. Cough and shortness of
breath
In developing and many middle
income countries, tuberculosis
(TB) is commonly associated with
HIV infection. As TB can occur at
any stage during HIV infection, it
should always be actively sought
for and treated in people with HIV
disease. Any cough that persists
for longer than three weeks after
treatment with a standard
antibiotic should be thoroughly
investigated for TB (including by
chest X-ray where available
because many patients with HIVassociated TB have negative
Ocfpber 2000
sputum smears). Other causes of
cough that should be considered
are Pneumocystis carinii
pneumonia (PCP) and bacterial
and fungal pneumonias. Noninfectious causes of cough include
pulmonary Kaposi's sarcoma,
lymphoma and interstitial
pneumonitis.
As well as treating the underlying
infections, use should be made of
antitussive agents (cough
suppressants).
Morphine or codeine can also be
used to decrease the sense of
breathlessness. People who are
very short of breath despite
treatment may find breathing
easier if they are sitting upright.
Physiotherapy is usually helpful to
clear secretions and improve air
entry.
Benzodiazepines should be used
to relieve the associated anxiety.
During a patient's last days of life,
scopolamine 0.3-0.6 mg
subcutaneously every 4-3 hours
or glycopyrrolate 0.1-0.4 mg
intramuscularly every 4-6 hours
will be useful in reducing the
quantity of secretions when the
person is too weak to cough.
Oxygen may prolong death rather
than improve quality of life, ond
may not be appropriate.
UNAIDS Technical Update ; AIDS: Palliative Cure
It is important in such cases to
provide support and information
for those people at the bedside,
particularly if this laboured
breathing is perceived as
distressing to the patient.
5.
Malaise, weakness and
fatigue
Fatigue, lack of energy and
malaise are common symptoms
reported by people with HIV
disease. Fatigue is reported as
being a distressing symptom fay
40-50% of people with advanced
HIV disease. There are often
many reasons for fatigue, but it
may be associated with:
n
anaemia
o
direct HIV effects on the
central nervous and
neuromuscular systems
a
malnutrition and "wasting*
syndrome
a
secondary infections and
tumours
n
adverse effects from drug
therapy
®
chronic pain
o
insomnia
n
depression.
Where possible, any underlying
problem should be treated. Often
no specific cause is found but
physiotherapy and rehabilitative
exercise may be helpful. Changes
in work and household duties
may enable people with fatigue
to cope better and have an
improved quality of life.
6.
hours if necessary. Ensuring
adequate fluid intake is
important and sponging the
person with a wet towel can also
bring some relief.
7.
Skin problem*
About 90% of people with HIV
have skin problems.
It is
important to recognize the
underlying cause, as some of
these are treatable with cheap
and simple medicines. Successful
treatment will improve a person's
quality of life because skin
problems often cause emotional
Common skin problems associated with HIV disease
Skin problem
First-line treatment
Bacterial infections
(boils, abscesses etc.)
violet
Antibiotic treatment (e.g. erythromycin
or flucioxacillin) and topical gentian
Abscesses should be drained, cleaned
and dressed before antibiotic treatment
Fungal infections
tinea corporis, folliculitis,
candidiasis
Topical antifungals if mild, systemic
antifungals in severe cases
Virol infections
herpes simplex
herpes zoster
molluscum contagiosum
papillomavirus (warts)
Early herpes zoster can be treated with
aciclovir
800 mg 5 times daily (if
available) or topical gentian violet and
most importantly pain relief.
If warls/molluscum are uncomfortable
they can be treated with topical
podophyllin or a silver nitrate stick.
Scabies
Topical treatment with lindane, benzyl
benzoate or permethrin
(treat contacts as well).
Pressure sores
Prevent by keeping skin clean and dry
and turning a bed-bound person every
2-4 hours. Treat by cleaning with salt
solution (should taste no more salty
than tears) daily and covering with a
dean dressing.
Wounds or ulcers
Clean with salt solution and keep
covered with a clean dressing. Infected
wounds can be treated with antibiotics:
smell and infection can be controlled by
metronidazole powder or gel.
Drug-induced eruptions
Supportive care with oral antihistamines
and 1% hydrocortisone cream.
Fever
Fever is often the sign of
secondary infections, and every
effort should be made to find and
treat the underlying cause. For
symptomatic treatment,
paracetamol (500-1000 mg
every 4-6 hours) or aspirin (600
mg every 4 hours) is usually
effective. Paracetamol and
aspirin can be alternated every 2
AIDS: PolliQfivo Core : UNAIDS Tcchnicol Update
distress and the avoidance of
social interaction. Some people
fear stigma or rejection if their
lesions are unsightly and may
need counselling and
reassurance. Scabies is often
atypical and should always be
considered if significant itching
pruritus is present, regardless of
the nature of the rash. This will
often require at least three
courses of treatment as well as
antipruritic agents such as
antihistamines and/or topical
steroids after the treatment is
washed off. Opioids may be
needed to treat severe itching.
October 2000
■ ■■■■■■■ K HUR
At
JSi
S
8.
Brain Impairment
HIV associated brain impairment
(often called HIV dementia) is an
important illness of advanced HIV
disease. Up to 15% of people
with advanced HIV disease will
develop some degree of brain
impairment ond a further 1520% may develop some degree
of motor or cognitive impairment.
HIV associated brain impairment
is characterised by abnormalities
in motor and cognitive function
consisting of psychomotor
slowing with behavioural
disturbance. Early symptoms
include apathy, poor
concentration, mood swings and
memory disturbance. Later
symptoms may include
disinhibited behaviour, agitation
and poor sleep.
Global
dementia, paralysis and
incontinence can occur in the
final stages. If is important to
differentiate mild brain
impairment from a depressive
illness, as the latter is treatable
with antidepressants.
Antiretroviral drugs are helpful in
treating HIV dementia. Where
these are not available, the
outlook is poor, as the brain
impairment is irreversible and
progressive. At the early stages,
counselling may be helpful.
Environmental clues to improve
memory such as family pictures
calendars and clocks may be
useful. Most importantly, family
members and friends should
receive support and counselling
so that they understand the
illness and are aware of the
prognosis. Delirium or agitation
of late-stage dementia may
respond to neuroleptic drugs,
such as haloperidol (1-5 mg 6-8
hourly) or chlorpromazine (25—
50 mg 6-8 hourly). Low doses
should be used initially because
of the increased risk of
exirapyramidol side effects in
people with HIV-related brain
impairment. For brain impaired
patients who live on their own,
day-to-day activities can be a
ma(or problem, especially as
some people may hove few
physical symptoms or problems
but still need 24-hour supervised
care. Hospices or palliative care
units, if available, may be
required to give medium-term
care. If these are not available,
regular support and supervision
from a home care team is
important to support the carer
and patient.
Counselling and social
support
Psychological problems
People living with HIV/AIDS
frequently experience emotional
and psychiatric problems. But
their quality of life can be
considerably improved when
health workers, family members
and carers understand these
problems, and support the
patient experiencing them.
Depression is common. If mild
and clearly associated with
factors in the patient's life, it may
be helped by counselling alone.
If it does not respond quickly to
psychological support, or
symptoms are severe, treatment
with antidepressant drugs should
be started promptly. Tricyclic
antidepressants drugs (such as
amitriptyline, imipramine or
trimipramine) will usually be the
first line therapy. In physically ill
patients, antidepressant drugs
should be started slowly, to
minimize side-effects (such as dry
mouth, sedation ond postural
hypotension). Once the
depression improves,
antidepressants should be
continued for a further 4-6
months to avoid relapse. When
antidepressants are stopped the
dose should be reduced
gradually, monitoring for signs of
relapse.
People living with HIV/AIDS may
consider suicide. This may result
•■if $ &&■■■■■■■■ October 2000
from depression or be a rational
choice. Such tendencies can
usually be helped with emotional
support from health care
workers, including the
reassurance that these feelings of
hopelessness are common with
any chronic illness and tend to be
short-lived. Some people with
advanced disease, with severe
symptoms, or those who have
also watched family and loved
ones die from HIV disease, state
that they wish to end their lives.
Family and spiritual support as
well as counselling may be
particularly important in these
circumstances.
Anxiety is also a common
symptom in people with
advanced HIV infection,
expressed in physical as well as
psychological symptoms.
Tachycardia, palpitations,
shortness of breath and panic
attacks may occur. Emotional
support and behavioural
interventions such as relaxation
therapy are the first line of
management. Benzodiazipines
(such as diazepam 2 mg 6-8
hourly as required) may be
helpful for short-term severe
anxiety, and beta-blockers (e.g.
propranolol 10 mg 4-6 hourly as
required) may be used for
palpitations.
Forms of psychological
support
1. VCT (voluntary counselling
and testing)
In many developing countries a
diagnosis of HIV infection or
AIDS is made by a health care
worker when the patient already
has advanced HIV infection. If
HIV testing is available it should
confirm the diagnosis. Whether
HIV testing is carried out or not,
it is important to share the
presumed or confirmed diagnosis
with the patient. Carers and
families often believe that it is
kinder to shield the patient from
UNAIDS Technical Update
AIDS: Polliativ££arc
Vt
S3
36
a
the diagnosis of HIV infection
and that talking about HIV will
make him/her more depressed.
However, most people with
symptomatic HIV infection will
have given it much thought and
sharing their worries and fears
can be of great comfort. They
may wish to discuss whether they
should disclose their HIV status to
other family members and
friends, if they have not already
done so. Carers can listen, be
non-judgmental and offer love
and support, especially if the
patient feels isolated or fears
rejection.
2.
Spiritual support
Even if they have not been
actively involved with a church or
religious group, many people
find great comfort from priests or
other spiritual leaders during
chronic illness Others, however,
may feel pressurized into talking
about spiritual issues by loved
ones, when they would prefer not
to. Carers should acknowledge
the patient's spiritual needs, or
lack of them, and arrange for
support and visits from a priest,
pastor or other spiritual person,
when appropriate.
3.
Preparing for death
It is often believed that it is not
appropriate to talk about the fact
that someone is going to die, and
that mentioning death will in
some way hasten it. However, for
those who wish to discuss death,
open discussion, ideally from
early diagnosis, can help dying
persons to feel that their
concerns are heard, that their
wishes are followed, and that
they are not alone. Sometimes it
is easier for patients to express
their feelings and concerns with a
counsellor rather than their
family, especially initially. Support
Most people want to know that
they will be remembered.
Encouraging friends and family
to share stories or memories of
the individual's life makes the
person feel loved and cared for.
People who are nearing death
are frequently afraid of dying in
great pain. Health workers
should be oble to reassure
patients that pain relief will be
carried out up to the point of
death. Another great worry is
what wid happen to patients'
dependants after they die. Where
possible, plans should be made
for dependants and partners.
Although it can be distressing to
discuss these issues, making
plans can reduce anxiety. Making
a will can prevent family conflict
and ensure that partners and
children are not left destitute.
This is particularly important
where "property grabbing"1 is
common.
Practical issues to be discussed
before death
«
custody of children
n
family support
■
making a will
■
funeral costs
■
future school fees.
Emotional issues to be discussed
before death
■
resolve old quarrels
■
tell patient and family
members or friends that they
ore loved
■
■
shore hopes for the future,
especially for children who
are left behind
say goodbye to corers ond
providers.
groups can provide great comfort
and relief; many patients are
helped by talking to other people
who are terminally ill.
Support for families and
carers
For family members, partners
and friends, looking after
someone with HIV infection can
be very daunting, (n highprevalence areas carers may be
looking after several family
members who are sick with HIV
infection. Carers need technical
assistance with nursing and
infection control, and emotional
support. They need educating in
the limits and outcomes of
particular treatments, and advice
and support so as to avoid
burnout.
J. Nursing
Nursing people with late-stage
HIV can be time consuming and
tiring. If the patient is not fully
mobile or bed bound he/she will
need constant attention, such as:
n
turning to prevent bedsores
■ ' helping to the toilet or latrine,
or to use a bed pan
®
washing and keeping cool by
sponging with a damp towel
■
if the patient is incontinent of
urine or faeces, washing both
patient and bedclothes
■
preparing food and drinks
and helping to feed the
patient
»
providing company when the
patient is feeling lonely,
anxious or scared
■
helping with drug taking
«
cleaning and dressing sores
and ulcers.
Many of these nursing tasks will
be new to the family or
community carer. They will
therefore need help and support
from a nurse, or knowledgeable
health worker, who can explain
about drug taking schedules and
simple nursing techniques, such
os how to dress ulcers. This will
It is the practice of relatives or me deceased to seize his/her property
al death. This alien results tn women and orphans being left destitute following a death.
1 "Property grabbing' occurs in some countries in sub-Saharan Africa.
AIDS. Put.-otiv0 Core ; UNAIDS Technical Update______________________ _____ ________ Oc»obc» 2000
$
IK?
9B
give them confidence and make
them feel less isolated. Written or
illustrated material explaining
drug taking schedules can be
useful as these may be
complicated, and some
medicines have adverse effects,
drug interactions or must be
taken with particular foods.
Coping with HIV related brain
impairment could be particularly
difficult and distressing for friends
and relatives, especially when the
patient behaves aggressively or
without normal inhibitions.
Health care workers need to toke
time to explain what is
happening when cognitive and
behavioural problems develop,
and to support corers in this
situation.
2. Infection control
There are many myths about HIV
and its transmission. Carers often
worry about being infected
themselves with HIV by the
person they are looking after.
Health workers should help
carers explore these anxieties
and, whilst giving them practical
information on how to avoid
infection, reassure them that the
risk of catching HIV whilst caring
for someone is minimal.
Carers should be aware of and
understand the following:
■
The risk of HIV infection to
carers and household contacts
is extremely low.
■
There is no risk from casual
household contact such as
sharing eating utensils, and
gloves do not need to be worn
when touching and lifting
someone with HIV.
■
Gloves, when available,
should be worn for cleaning
wounds and clearing up blood
or body fluids. When gloves
are not available, covering the
hands with plastic bags is a
helpful alternative.
«■■■■■■■■
<*
Spillage of blood, faeces, urine
or vomit should be cleaned up
using household bleach.
®
Cutlery, bed linen, etc. should
be washed with normal
washing products.
3. Psychological support
When carers, such as partners or
children, are uncertain about
their own HIV status, health
workers can help them address
their worries and offer a referral
to voluntary counselling and
testing (VCT).
Other problems, such as a shift in
family dynamics when the elderly
parent or young child becomes
the carer, can make carers feel
isolated. They may be reluctant
to talk about these issues for fear
of being judged as inadequate.
Health workers can try to
reassure them that their concerns
are normal, or put them in touch
with other carers. Sharing their
experiences, for example,
through support groups, can be
very helpful to both parties.
The need to offer counselling to
partners and families following
the death of a family member or
friend is often overlooked,
particularly in developing
countries. Bereavement
counselling can help the
bereaved person to discuss and
reflect on the changes brought
about by loss, to mourn
appropriately and to look to the
future. Partners ond parents of a
child who dies may have
unresolved fears about HIV
infection for themselves, or other
family members, and can be
helped to come to decisions
about HIV testing.
The process of grieving may last
many months or even years.
However, for some people a
single counselling session may be
sufficient to clarify their thoughts
and feelings, and to reassure
them that they are coping as best
October 2000
they can under the
circumstances. This is particularly
true for people who have other
emotional supports, such as
family, friends and church or
other spiritual support. Other
people may need several
sessions. Some people never
completely come to terms with a
loss, particularly that of a child.
In high-prevalence developing
countries, grieving may be made
worse by multiple losses of
friends and relatives through HIV
infection. People who have
recently suffered multiple losses
may be afraid that they are
'going crazy' or losing their
mind. Reassurance that such
feelings are a normal part of
grieving is important. Some
traditional beliefs and practices
may be helpful, but others, such
as "property grabbing" , may add
to difficulties.
4.
Helping the carers to care
Carers may become exhausted if
they have been looking after a
sick person for a long time, or if
they have had many other friends
or family members die recently. If
they are tired or distressed, they
cannot give their sick relative or
friend the care they need. If
respite care is available, it may
be appropriate for the patient to
spend short times there. If this is
not available, other family
members, friend or volunteers
can be encouraged to share the
care so that the main carer can
get adequate rest. Health
workers should reassure carers
that they are bound to be tired
and give them 'permission' to
'have a break' or take more rest.
Day respite care for children with
symptomatic HIV disease may be
offered. This not only gives
respite to the children, but also to
the carers who are often
themselves sick or elderly.
Structured home-based care
programmes, where available,
U N AI DS Technical Update : A|DSj_Polhotiv£_£arC |
can provide good support for
corers as well as patients. Health
workers can share the burden of
care, as well as providing
treatment, odvice and support.
They also encourage acceptance
of HIV/AtDS patients by
communities, and help dispel
myths and stigmatization.
particularly medicines used for
symptomatic relief, is not always
seen as a priority. Governments
must appreciate that for
humanitarian reasons alone,
palliative care—reducing the pain
and suffering of those who are
chronically ill or dying—should
be a priority
In order to provide effective
palliative care, governments and
planners may need to transform
health services through improved
training, by making care
available in a wide range of
settings and by ensuring a
sustained supply of appropriate
drugs and medicines.
Mony patients first seek help and
support from traditional or
complementary medical
practitioners. These practitioners
may offer symptomatic treatment
with herbal or other remedies, or
pain relief through therapies such
as acupuncture. Patients and
carers may also be offered
counselling and support. Health
workers should discuss treatment
and care plans with other
practitioners involved in a
patient's care, and should ensure
that any complementary therapy
is useful and not too costly. They
can protect patients and carers
from exploitation by
unscrupulous charlatans.
Although HIV has added
enormously to the health care
burden in many of the poorest
countries, many of the drugs and
services which can benefit people
with HIV are readily available,
listed as WHO/UNAIDS essential
drugs, and are cheap. If,
however, additional resources are
not provided to care for the
increasing numbers of people
with HIV, and to train carers and
health workers, many people will
die in pain, isolation and distress,
and their carers, including many
orphaned children, will be left
feeling unsupported and
helpless.
Organizing training
Challenges:
Perceptions and recognition of
palliative care
Palliative care has developed
considerably since its early days
when most patients treated were
terminally ill and approaching
death. But still many people
living with HIV/AIDS shy away
from the notion of palliative care
because they link it with death
and many of them don't want to
admit they are dying. Policy
makers, planners and health
workers have to tackle this
misconception in order to ensure
patients with HIV/AIDS receive
palliative care.
Many developing and middle
income countries have limited
health resources, including drug
budgets, and palliative care,
In some low-prevalence
countries, people living with HIV/
AIDS are even more isolated
because HIV is perceived as a
problem of marginalized groups
such as injecting drug users,
refugees and men who have sex
with men. Health services need
to structure health care and
support to meet the needs of
these particular groups, including
tackling their isolation and
stigmatization.
There are other sound
development reasons for
ensuring that people living with
HIV/AIDS receive treatment to
ensure a decent quality of life.
Many people who are ill with HIV
ore intermittently ill and with
access to appropriate medicines
they have much to contribute to
their families and communities.
As people with HIV are often
young adults, many have young
children who need their parents
to be with them for as long as
possible.
Even in settings where HIV is a
major health problem, most
communication about HIV
infection has dealt with HIV
transmission and prevention, with
little emphasis on how to care for
people with HIV. Nor do the
majority of health professionals
know how to holistically assess
and control pain.
Palliative care training should be
provided for health care workers
in hospitals and in the
community, for teachers, religious
and community leaders; they in
turn can teach community health
workers, community volunteers
and families caring for people
living with HIV/AIDS.
General HIV education in the
community can be very beneficial
in reducing stigma, by helping to
change negative attitudes
towards people with HIV and
their families, and giving factual
information about caring for
people living with HIV/AIDS.
Making good palliative care
services available
In areas of high HIV prevalence
the number of people with
symptomatic disease requiring
medical and psychological
support increases as the epidemic
matures. For example, in
Zambia, which has a population
of about 8.5 million, one in five
adults ore infected and an
estimated 90 000 become unwell
with HIV each year. In some
hospitals in sub-Saharan Africa,
50-70% of adult medical beds
D
AIDS: Palliative Core ; UNAIDS Technical Update
October 2000
$
9K
are occupied by people with HIVrelated illnesses. This has put an
impossible burden on already
very over-stretched and under
funded health services. Wards
and outpatient clinics become
overcrowded and medical staff
feel demoralized and impotent as
they have little treatment to offer.
In response to this crisis, two
main approaches have been
taken in developing countries.
First, alternatives to traditional
inpatient and outpatient hospital
services were sought. Secondly,
there has been a development
and expansion of services,
including home care services,
provided by nongovernmental
organizations (NGOs).
1.
Home care
Many successful models of home
care have been developed in
different settings. Those that are
community-based, rather than
developed as outreach from
hospitals, tend to be cheaper to
run and provide a wider
coverage. Using volunteers has
not only been successful in
keeping costs lower, but has also
enabled communities to work
together in supporting each
other, raising awareness and
promoting tolerance and
acceptance.
2.
Residential hospice care
Residential hospices have been
set up in many industrialized
countries to help care for people
with terminal HIV disease.
Hospice care is particularly
helpful for people who live alone
or who have poor symptom
control or symptoms that are
difficult to manage, such as those
associated with severe brain
impairment. Hospice care is also
useful for providing respite care,
when carers need a break or
when patients are being
stabilized on new drug regimes.
In developing countries there are
a few examples of hospices, often
run by religious groups. In high-
HlV-prevalence developing
countries, inpatient hospice care
is too expensive to provide for
the large numbers of people
requiring palliative or terminal
care.
3.
Day centres
In some countries day care
facilities for people living with
HIV/AIDS may be available.
These enable patients to remain
at home whilst allowing carers
time off during the day. Patients
can receive palliative care at the
day centre, counselling and
emotional support, cooked
meals, services for their children
and, in some cases, schemes for
income-generation.
Each of the models of care has
advantages and disadvantages
and patients may benefit from
different care at different stages
in their illness.
4. Access to analgesics and
palliative care drugs
There are often strict legal
controls on analgesics such as
codeine and other opiates.
Because of fears about their
misuse, in many countries they
can only be prescribed by
doctors. In settings where the
majority of palliative care is
delivered by nursing staff ar
community carers, and there are
few doctors, access to analgesics
can be problematic. A balance is
needed between increasing
access to adequate pain relief for
people with HIV and the careful
supervision and record keeping
of prescription of opiate
analgesics.
In some settings cannabis has
been found to be helpful in
symptom control (particularly for
the relief of nausea and
improvement of appetite) for
people with HIV. However, their
use is often restricted by strict
5. Providing support for
carers, counsellors and health
care workers
Health services need to address
the specific causes of stress for
people who care for HIV/AIDS
patients. Support groups for
carers enable them to share their
particular anxieties and concerns,
such as coping with multiple
deaths or coming to terms with
the person's sexual orientation.
Caring for people with HIV at the
end of their life is emotionally
draining and can be depressing.
To avoid burnout adequate
support for carers, counsellors
and health care workers should
be available.
In many cultures, parents find it
difficult to discuss painful issues
with their children. As a result,
children are unprepared for the
death of their parents, unable to
protect themselves from HIV
infection in the future and often
unable to trust adults. Children
with HIV or whose parents or
siblings have HIV disease may
need culture and age-specific
counselling and their parents or
carers need support and
guidance in talking to children
about sensitive and distressing
issues.
6. The special needs of
children with HIV
Most children with HIV disease in
developing countries have little
access to medical care, and
palliative care or rehabilitation is
seldom offered. Assumptions
such as 'because the child does
not verbalize his or her problems
he/she has none', or that
'addressing issues around death
and dying will cause more harm
than good' are now being
challenged. The importance of
communicating with children and
involving them in decision
making is now being recognised
by parents and health workers.
legislation. Some PLHA groups
argue for these drugs to be made
more widely available.
ft ® ® 83 ■■■■■■■ ■ October 2000
I1HAI0S Tcihnicol Update ; AIDWalliativ^orc
What is currently being done to
overcome these challenges?
Examples of current projects
initiatives in palliative care.
The Catholic Diocese in Ndola,
Zambia
In the late 1980s Zambia
developed the new strategy of
"home based" care to cope with
the increasing number of people
with symptomatic HIV disease.
This strategy was not confined to
medical treatment and nursing
care, but took a more
comprehensive approach to the
needs of individuals, families and
communities. However, many of
the early projects had limited
coverage and were relatively
expensive to operate. In 1991 the
Catholic Diocese in Ndola, in the
Zambian copperbelt, established
a comprehensive home care
programme for people with HIV
disease, which aimed to provide
much higher coverage at less
expense. The key to its success is
the role of the 500 volunteers
who offer counselling, social and
emotional support, and basicmedical and nursing care for
people with HIV disease and their
families. They also provide links
between the local health centres
and the community, allowing
people with HIV to receive care in
their homes rather than as
inpatients. HIV education to the
communities has helped to
change attitudes to PLHA
increasing acceptance and
tolerance and reducing stigma.
The AIDS Support
Organisation (TASO), Uganda
TASO in Uganda was founded in
1987 as a self-help support
group, and it is an example of
what can be done when people
living with HIV/AIDS and their
families identify their own needs
and spearhead the process of
defining the nature of services to
meet those needs. TASO began
by offering counselling and
AIDS: Pollionvc Core : UNAIDS Tc<hmca! Updal.
outpatient clinical care of
opportunistic infections to people
living with or affected by HIV/
AIDS. Soon it became evident
that when TASO clients became
bed-bound, they were often not
receiving good-quality care due
to stigma in homes and
communities, and the lack of
care skills in the homes. TASO
started a campaign of AIDS
awareness aimed at changing
attitudes in communities. At the
same time TASO began training
and supervision programmes for
families and community members
in basic home care. People living
with or affected by HIV became
the driving force of this
campaign, sharing their personal
experience and advocating
"positive Jiving". Family level
income-generation activities were
started and linked to church and
other community-based
organizations. TASO also runs
training programmes for
counsellors, community carers
and community-owned resource
persons.
The Mildmay Mission Hospital,
London, United Kingdom
Mildmay is a Christian
foundation and was the first to
set up inpatient and day
palliative care services in Europe.
If is funded mainly through
contracts with the National
Health Service together with by
donations and grants. It is
situated in central London and
aims to care for people with HIV
without regard to race, religion,
culture or lifestyle.
People with HIV may be admitted
for rehabilitation, respite or
terminal care, or for support
while changing drug regimens.
The use of the hospice has
changed since the use of ARVs
became routine for people with
HIV in the United Kingdom. Many
more patients are now seen for
rehabilitation or respite care than
for terminal care. Associated
services include counselling,
referral for hospital outpatient
care such as gynaecology and
dermatology, social support and
support for children. Mildmay has
a family care unit and a unit for
people with brain impairment,
with separate day care centres
for children and adults. People
who use the centre include men
who have sex with men, injecting
drug users, and people from
Africa now living in London.
Mildmay has found that close
links with churches and religious
groups in the community have
helped to raise awareness about
HIV and enabled people living
with HIV/AIDS to obtain ongoing
spiritual support once they are
back in their homes.
The Mildmay Centre for AIDS
palliative care and
international study centre,
Kampala, Uganda.
The Mildmay Centre in Uganda
was developed as a joint project
between the Ugandan Ministry of
Health (AIDS control
programme), the United
Kingdom Department for
International Development and
Mildmay International, who have
a contract to manage the centre
for ten years. It was opened to
patients in 1998.
The Mildmay Centre was
designed to provide specialist
outpatient palliative care and
rehabilitation for people living
with HIV/AIDS, and to serve as a
demonstration model for costeffective care in resource-limited
settings. It also provides day and
residential training programmes
in all aspects of HIV care for
health workers, volunteers and
carers.
OctoAci 2000
■ ■■■■■■ BHiaisS
'
The emphasis is on rehabilitation
and the promotion of
independence wherever possible.
It has a patient-focused team
with support from:
n
Medical and nursing staff
»
Physiotherapists
»
Occupational therapist
®
Nutritionist
n
Counsellors
®
Spiritual core
■
On-site laboratory services
n
On-site pharmacy.
At the Mildmay Children's Centre
in Kampala, children with HIV
have free access to the same
range of services as at the adult
centre. The services are child
friendly, with therapeutic play
and counselling. The aim is to
meet not only their physical
needs but also their emotional
needs as many children seen are
severely traumatized. Day respite
care for orphans with advanced
HIV disease is also provided.
Calmette Hospital, Cambodia
The Calmette hospital and a
Phnom-Penh military hospital
have implemented an innovative
treatment and training
programme to fight AIDS in the
community through education,
and to provide a comprehensive
response to the medical and
psychosocial care needs of the
patients it serves. If is now
estimated that 200 000
Cambodians are HIV-positive, of
whom 30 000 have progressed to
AIDS, with an impact thol is also
growing on military and police
forces. Working with Doctors
hospitals. The current project was
based on the premise that a
professionals and non
professionals. The professional
response is required which
addresses medical and
psychosocial needs
simultaneously. Treatment
focuses particular attention on
pain management and
responding to symptoms.
Psychological and social supports
are provided to infants who are
orphans. Another primary
objective of the project is to
provide education and training
for clinicians, pharmacists, and
family members. Within
communities, families and
neighbourhoods receive health
education and HIV prevention.
The system of care has expanded
to include ambulatory and home
care for patients living with AIDS
and cancer.
team consists of a consulting
physician and nurses. The care
staff includes 17 men and
Sahara Michael’s Care Home,
India
Sahara Michael's Care Home, a
nongovernmental organization in
India, is pioneering a continuum
of care that addresses aspects af
HIV/AIDS care lacking in the
health service, concentrating on
areas that include treatment,
training, human rights advocacy,
and the development of networks
and partnerships. The Care
Home, a 16-bed facility, evolved
in response to changing disease
patterns for HIV/AIDS and the
need for care giving of a greater
intensity and longer periods. The
programme has been serving
areas of high need, in resourceconstrained settings, since 1978.
Funded by the Catholic Relief
Organisation, the model of care
initiated in 1997 for people living
without Borders, the programme
has developed a capacity to
with HIV/AIDS is now being
utilized by HIV/AIDS communities
throughout India.
provide both care, including
inpatient and outpatient services,
and training for health care
providers. As a result, trained
physicians have established a
pain clinic and provide pain
management in these two
The model of care includes care
giving, counselling, a nutrition
programme, cost viable
treatment strategies, crisis care,
and training for self and family
care provided by a team of
October 2000
women who perform a variety of
tasks ranging from autoclaving,
cooking and driving to hospital
visits. In the next year, the team
will be developing an outpatient
department for HIV-positive
people, counselling which
embraces issues that go beyond
HIV status, and a systematic
training programme for the
intricacies of HIV/AIDS care.
The Care Home has a spiritual
undercurrent to its programmes
and a team with a service-like
devotion to care giving. This has
fostered an acceptance of HIV/
AIDS in local communities and
encouraged people everywhere
to offer materials and support.
The Positive and Living Squad
(PALS) and Kara Counselling
and Training Trust (KCTT),
Zambia
KCTT and the PALS are closely
linked Zambian NGOs, working
to provide care and support
services for people living with
HIV/AIDS. The PALS are a group
of people living openly with HIV.
They organize a wide range of
HIV prevention activities, but also
have an important role in
supporting other people with HIV
when they become sick and
families when a loved one dies.
For people who are unwell with
HIV, having support and
understanding from someone
who is also infected with HIV is
often very helpful. It can lessen
the feeling of isolation and help
families to see that their
problems are not unique. During
the time of someone's last illness
and death the PALS often provide
practical and material help,
including helping with funeral
arrangements and helping make
plans for dependants. The PALS
UNAIDS Technical Update ; AIDS; Polliath
□ Iso have an important advocacy
role and are active in fighting
discrimination and promoting the
rights of widows and dependants.
Among the activities provided by
KCTT is a training programme for
home care volunteers. Lay
volunteers are taught about basic
nursing and listening and
counselling skills. KCTT olso has
a day centre where people with
HIV can meet and learn skills
from an income generation
scheme, counselling services and
close links with community based
care teams. They also provide TB
screening and preventive therapy
for people with HIV and family
counselling for families affected
by HIV.
As palliative and supportive care
needs are often overlooked, they
must be emphasized in national
strategic plans. There is also
need for coordination with
donors to ensure that palliative
care is seen as a priority, and
resource mobilization is essential
to strengthen these efforts.
AIDS: Palliative Ca
: UNAIDS T.
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20CQ
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people with HIV/AIDS and TB in
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for Hope series No. 1 4.
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N. (eds.) (1 998) Oxford textbook
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Morisette MR, Cameron R, Bally
GA (eds.) (1995) A comprehensive
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care. Mount Sinai Hospifal/Casey
House Hospice.
Oleske J, Czarniecki L (1999)
Continuum of palliative care:
Lessons from coring for children
infected with HIV-1. The Lancet
354. 1287-90.
Osborne C, van Praag E (1997)
Models of care for people with
HIV/AIDS. AIDS 11 (suppl B)S135-S141.
Sims R, Moss V (1995) Palliative
care for people living with AIDS.
Second edition. Arnold, London,
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Welch J, and Newbury J. (1 990)
Looking after people with late HIV
disease. Lisa Sainsbury
Foundation. Pattern Press, United
Kingdom.
WHO (1993). AIDS home care
handbook. WHO/GPA/IDS/HCS/
93.2.
WHO (1 996). Cancer pain relief.
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154482 1.
WHO (1 998). Concer pain relief
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prescribing information. WHO/
DMP/DSI/99.2.
© Joint United Nations Programme on HIV/AIDS (UNAIDS) 2000. All rights reserved. This publication may be freely reviewed, quoted, repro
duced or translated, in part or in full, provided the source is acknowledged. It may not be sold or used in conjunction with commercial purposes
without prior written approval from UNAIDS (contact: UNAIDS Information Centre, Geneva-see page 2.). The views expressed in documents by
named authors are solely the responsibility of those authors. The designations employed and the presentation of the material in this work do
not fmpfy the expression of any opinion whatsoever on the part of UNAIDS concerning the fegaf status of any country, territory, city or area or
of its authorities, or concerning the delimitation of its frontiers and boundaries. The mention of specific companies or of certain manufacturers'
products do not imply that they are endorsed or recommended by UNAIDS in preference to others of a similar nature that are not mentioned.
Errors antf omissions excepted, the names of proprietary products are distinguished by initial capital letters.
M St MB BBBBBBB 0:1:5c- 2000
UNAIDS Tcshnisal Update
AIDS- Palliative Care
MATERIAL ON HIV/AIDS
SENT BY
MEDICAL MISSION INSTITUTE
UNIT FOR HEALTH SERVICES AND HIV/AIDS
SALVATORSTR. 22
D-97074 WURZBURG
GERMANY
June 2001
Table of Content
1
Introduction
3
2
Section one
4
2.1
BACKGROUND
4
2.2
CHARACTERISTICS OF AVAILABLE ANTIRETROVIRAL DRUGS
5
2.3
INITIATION OF THERAPY
6
Choice of regimen
7
2.3.1
MONITORING
2.4
3
9
10
11
SECTION TWO SOME EXPERIENCES WITH ART IN RESOURCE LIMITED SETTINGS
12
3.1
4
9
TREATMENT FAILURE
HIV RESISTANCE TO ANTIRETROVIRAL DRUGS
FUTURE APPROACHES TO THERAPY
2.4.1
2.4.2
2.4.3
ART COVERAGE
12
3.2
CONTEXT: PUBLIC OR PRIVATE SECTOR, DONOR SUPPORTED AND
RESEARCH PROJECTS
12
3.3
QUALITY OF CARE AND OUTCOMES
13
3.4
LABORATORY MONITORING SERVICES
13
3.5
Surveillance for Drug Resistance
13
3.6
SUPPLY AND DISTRIBUTION OF THE DRUGS
13
3.7
Initiation of treatment
14
3.8
CHOICE OF THERAPEUTIC REGIMEN
14
SECTION THREE GUIDE TO ART IN RESOURCE LIMITED SETTINGS
4.1
WHAT SHOULD BE IN PLACE BEFORE INITIATING ART PROGRAMMES * 14
4.1.1
4.1.2
4.1.3
4.1.4
4.1.5
4.1.6
4.1.7
4.1.8
4.2.1
4.2.2
15
15
16
16
17
17
17
18
___ 19
WHOM TO TREAT
________ 19
CHOICE OF THE REGIMEN
19
MONITORING ANTIRETROVIRAL THERAPY *
4.3.1
4.3.2
4.3.3
4.4
COUNSELLING FOR ART
FINANCIAL CONSIDERATIONS
DRUG INFORMATION
EMOTIONAL SUPPORT AND DIFFICULT DECISIONS
CONFIDENTIALITY AND SHARING HIV STATUS*
ADHERENCE TECHNIQUES
CLINICAL EVALUATION BEFORE INITIATION OF ART
HIV-RNA TESTING
INITIATION OF THERAPY
4.2
4.3
14
__________ 20
Monitoring adherence to ART
_____ _____________ 20
Monitoring tolerance to ART
_____________ 21
Monitoring the efficacy of ART
22
CONSIDERATIONS OF DRUG INTERACTIONS
22
4.4.1
ANTIRETROVIRAL DRUGS AND THE TREATMENT OF TUBERCULOSIS
23
4.4.2
INTERACTIONS WITH DRUGS COMMONLY USED FOR THE PREVENTION
AND TREATMENT OF OIs
24
4.5
FURTHER RESEARCH NEEDS
24
4.6
INFORMATION AND TRAINING NEEDS
25
-2-
1 Introduction
In April 1997,WHO and UNAIDS held an Informal Consultation on the Implications of Antiretroviral
Treatments for HIV/AIDS, with the objective of providing policy guidance on major issues relating to
the use and provision of antiretroviral drugs.
As a follow up activity to this consultation, a set of nine Guidance Modules on several aspects of
antiretroviral treatments was produced. 2 Guidance Module number 4, entitled Safe and Effective use
of Antiretroviral Therapies, provided guidance primarily to clinicians, counsellors, and managers of
clinical services. Policy makers, people living with HIV/AIDS (PLHA) and decision-makers in
national referral and district hospitals as well as training institutions have also found this guidance
module very helpful. The module reflected the published standards of care and the consensus of
participants at the time of the consultative meeting in 1997.
Treatment guidelines need to be regularly updated to take into account evolution in knowledge and
experiences from different healthcare settings. There is today a much better understanding of the
biological basis for antiretroviral therapy (ART) and clinical research has provided consistent data on
its effectiveness. The adherence difficulties and adverse effects associated with some of the
antiretroviral drug combinations are better understood and regimens that are easier to take are being
developed.
There is also an increasing body of knowledge on the therapeutic implications of antiretroviral drug
resistance. A variety of international treatment guidelines have been developed to keep clinical
practice as much as possible in pace with the data emerging from basic and clinical research. Clinical
guidance for the use of ART must take into account the profile of patients seeking care as well as the
capacities of the healthcare setting in which this care is being delivered. Low and middle-income
countries have requested recommendations for the provision and monitoring of ART that are more
directly relevant to their resource limited settings than the published International Guidelines. In
response to this requirement, WHO in collaboration with UNAIDS and the International Aids Society
(IAS) organised a technical consultative meeting, in February 2000.This consultation brought together
experts in HIV/AIDS care and HIV clinical research from industrialised countries and developing
countries, to analyse available scientific evidence and discuss contextual issues relating to the safe and
effective use of antiretroviral therapies in resource limited settings. This guide is a result of the
discussions and recommendations of the February 2000 consultation.
In section one, the principles behind current use of antiretroviral drugs for the treatment of HIV-1
infection are outlined. This section refers to existing international recommendations. Several factors
that relate to the profile of patients seeking HIV care in resource limited countries may influence the
choice and the outcome of antiretroviral therapy:
• the vast majority of patients are currently treatment naive because antiretroviral drugs are usually
not available through the public sector and are poorly introduced into private markets.
• most patients have advanced stage HIV disease at the time treatment is initiated because in the
absence of wide spread counselling and testing, diagnosis is often delayed.
• patients in resource poor countries are more likely to have co-existing morbidity such as anaemia,
malnutrition as well as tuberculosis and other medical conditions, which may act in concert to
affect the choice of therapy and the considerations on the potential spectrum of drug interactions
and drug toxicity.
• the majority of patients are in a low-income bracket and because antiretroviral drugs are not
usually provided free of charge, financial constraints are a common cause of treatment
interruptions and of further delay in initiating therapy.
Within many resource limited countries there are “sites of excellence” where small scale ART
programmes have been implemented. Nevertheless, inadequacy of healthcare services in terms of
-3-
Table of Content
1
Introduction
3
2
Section one
4
2.1
BACKGROUND
4
2.2
CHARACTERISTICS OF AVAILABLE ANTIRETROVIRAL DRUGS
5
2.3
INITIATION OF THERAPY
6
Choice of regimen
7
2.3.1
MONITORING
2.4
2.4.1
2.4.2
2.4.3
3
9
9
10
11
TREATMENT FAILURE
HIV RESISTANCE TO ANTIRETROVIRAL DRUGS
FUTURE APPROACHES TO THERAPY
SECTION TWO SOME EXPERIENCES WITH ART IN RESOURCE LIMITED SETTINGS
12
3.1
ART CO VERAGE
12
CONTEXT: PUBLIC OR PRIVATE SECTOR, DONOR SUPPORTED AND
3.2
RESEARCH PROJECTS
4
12
3.3
QUALITY OF CARE AND OUTCOMES
13
3.4
LABORATORY MONITORING SERVICES
13
3.5
Surveillance for Drug Resistance
13
3.6
SUPPLY AND DISTRIBUTION OF THE DRUGS
13
3.7
Initiation of treatment
14
3.8
CHOICE OF THERAPEUTIC REGIMEN
14
SECTION THREE GUIDE TO ART IN RESOURCE LIMITED SETTINGS
4.1
WHAT SHOULD BE IN PLACE BEFORE INITIATING ART PROGRAMMES * 14
4.1.1
4.1.2
4.1.3
4.1.4
4.1.5
4.1.6
4.1.7
4.1.8
4.2
4.2.1
4.2.2
4.3
4.3.1
4.3.2
4.3.3
4.4
14
COUNSELLING FOR ART
___________________________________ 15
FINANCIAL CONSIDERATIONS.
__________________________________ 15
DRUG INFORMATION
16
EMOTIONAL SUPPORT AND DIFFICULT DECISIONS
16
CONFIDENTIALITY AND SHARING HIV STATUS*
17
ADHERENCE TECHNIQUES
17
CLINICAL EVALUATION BEFORE INITIATION OF ART
17
HIV-RNA TESTING 18
INITIATION OF THERAPY
______ 19
WHOM TO TREAT
CHOICE OF THE REGIMEN
____________ 19
19
MONITORING ANTIRETROVIRAL THERAPY *
Monitoring adherence to ART
Monitoring tolerance to ART
Monitoring the efficacy of ART
20
__ _________________ 20
21
'____________________ 22
CONSIDERATIONS OF DRUG INTERACTIONS
22
4.4.1
ANTIRETROVIRAL DRUGS AND THE TREATMENT OF TUBERCULOSIS
23
4.4.2
INTERACTIONS WITH DRUGS COMMONLY USED FOR THE PREVENTION
AND TREATMENT OF OIs
24
4.5
FURTHER RESEARCH NEEDS
24
4.6
INFORMATION AND TRAINING NEEDS
25
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1 Introduction
In April 1997,WHO and UNAIDS held an Informal Consultation on the Implications of Antiretroviral
Treatments for HIV/AIDS, with the objective of providing policy guidance on major issues relating to
the use and provision of antiretroviral drugs.
As a follow up activity to this consultation, a set of nine Guidance Modules on several aspects of
antiretroviral treatments was produced. 2 Guidance Module number 4, entitled Safe and Effective use
of Antiretroviral Therapies, provided guidance primarily to clinicians, counsellors, and managers of
clinical services. Policy makers, people living with HIV/AIDS (PLHA) and decision-makers in
national referral and district hospitals as well as training institutions have also found this guidance
module very helpful. The module reflected the published standards of care and the consensus of
participants at the time of the consultative meeting in 1997.
Treatment guidelines need to be regularly updated to take into account evolution in knowledge and
experiences from different healthcare settings. There is today a much better understanding of the
biological basis for antiretroviral therapy (ART) and clinical research has provided consistent data on
its effectiveness. The adherence difficulties and adverse effects associated with some of the
antiretroviral drug combinations are better understood and regimens that are easier to take are being
developed.
There is also an increasing body of knowledge on the therapeutic implications of antiretroviral drug
resistance. A variety of international treatment guidelines have been developed to keep clinical
practice as much as possible in pace with the data emerging from basic and clinical research. Clinical
guidance for the use of ART must take into account the profile of patients seeking care as well as the
capacities of the healthcare setting in which this care is being delivered. Low and middle-income
countries have requested recommendations for the provision and monitoring of ART that are more
directly relevant to their resource limited settings than the published International Guidelines. In
response to this requirement, WHO in collaboration with UNAIDS and the International Aids Society
(IAS) organised a technical consultative meeting, in February 2000.This consultation brought together
experts in HIV/AIDS care and HIV clinical research from industrialised countries and developing
countries, to analyse available scientific evidence and discuss contextual issues relating to the safe and
effective use of antiretroviral therapies in resource limited settings. This guide is a result of the
discussions and recommendations of the February 2000 consultation.
In section one, the principles behind current use of antiretroviral drugs for the treatment of HIV-1
infection are outlined. This section refers to existing international recommendations. Several factors
that relate to the profile of patients seeking HIV care in resource limited countries may influence the
choice and the outcome of antiretroviral therapy:
• the vast majority of patients are currently treatment naive because antiretroviral drugs are usually
not available through the public sector and are poorly introduced into private markets.
• most patients have advanced stage HIV disease at the time treatment is initiated because in the
absence of wide spread counselling and testing, diagnosis is often delayed.
• patients in resource poor countries are more likely to have co-existing morbidity such as anaemia,
malnutrition as well as tuberculosis and other medical conditions, which may act in concert to
affect the choice of therapy and the considerations on the potential spectrum of drug interactions
and drug toxicity.
• the majority of patients are in a low-income bracket and because antiretroviral drugs are not
usually provided free of charge, financial constraints are a common cause of treatment
interruptions and of further delay in initiating therapy.
Within many resource limited countries there are “sites of excellence” where small scale ART
programmes have been implemented. Nevertheless, inadequacy of healthcare services in terms of
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consistency of supplies and quality assurance of laboratory support as well as a scarcity of trained
clinicians, are characteristic of most resource limited settings. Experiences with the use of ART in
these settings, however, continue to accumulate and there are important lessons to be drawn from
them.
In section two of this guide, some national ART programmes and some pilot initiatives from six low
and middle income countries arc described. In section three, discussions and recommendations on the
use of antiretroviral drugs in resource limited settings, for the treatment of HIV-1 infection, are
presented. The participation of patients in decision-making processes is crucial to the outcome of any
treatment programme. People living with HIV/AIDS (PLHA), from resource limited countries
participated in this consultation and their contributions on adherence issues and on the psychosocial
support needs of patients form an important clement of the contents of this guide.
2
Section one
2.1 BACKGROUND
Data published over the last two years in Europe and North America, from clinical trials and
observational cohorts, provide convincing evidence of the beneficial impact of combination
antiretroviral therapy on the morbidity and premature mortality from HIV infection. This benefit is
mainly due to a reversal of the progressive immune deficiency that is characteristic of HIV infection
and to effective restoration of the immune system’s reactivity to HIV induced opportunistic infections
(OIs).
The course of many OIs has been altered by widespread use of effective ART. Previously untreatable
OIs like cryptosporidiosis and AIDS defining illnesses like Kaposi’s sarcoma may resolve without
specific treatment and the clinical progression of complicated OIs like cytomegalovirus and atypical
mycobacterial infections may be halted and/or reversed. As an extension of the benefits of effective
ART, criteria for the discontinuation of chemoprophylaxis against pneumocystis carinii pneumonia,
which in the past was a lifelong intervention, have been introduced into current practice guidelines. In
time, HIV infection may therefore be considered as a chronic disease manageable over the course
many years. The approach to antiretroviral therapy and the design of therapeutic regimens has been
influenced by the following key findings from studies on the pathogenesis of HIV infection:
• demonstration that a continuous high-level of replication of HIV is present from the early stages of
infection (at least IO10 particles are produced and destroyed each day)
• demonstration that a specific immune response to HIV occurs in HIV infected subjects during
“primary” infection but begins to decline after the first months of infection.
The strength of this primary immune response may be predictive of subsequent concentrations of HIV
in the body as measured by the plasma HIV-RNA or “viral load”.
• demonstration that the measured concentration of plasma viral load is predictive of the subsequent
risk of disease progression and death.
• proof that combination antiretroviral therapy is not only able to consistently suppress HIV
replication, but also able to induce a significant delay in progression to AIDS; this survival benefit
is particularly marked in previously untreated patients.
• elucidation of the molecular, functional and clinical impact of resistance to antiretroviral drugs.
Since ongoing replication of HIV drives the disease process, causing progressive immunological
damage, an ideal target of antiretroviral treatment is to obtain timely and sustained suppression of viral
replication. Many ART regimens that achieve this target to some degree have already become
available. Reliable techniques for quantifying HIV in plasma, measured as the amount of HIV-RNA or
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the “viral load” arc also available and have allowed clinical researchers to compare the relative
antiviral potency of various antiretroviral drug regimens, while providing a rational tool for
monitoring the efficacy of ART in clinical practice. Measurement of the numbers of CD4+ cells in the
blood are a reliable indicator of the extent of immunological damage caused by HIV infection and
provide further rationale for clinical decisions on antiretroviral therapy.
While the progress so far has been impressive, there is a growing appreciation of some of the
difficulties associated with ART and much work still remains to be done. Difficulties with adherence
to treatment, long-term toxicity and cross-resistance among antiretroviral drugs have become major
drawbacks of cunent ART strategics. Even with the most potent antiretroviral drug regimens available
today, there exists a proportion of patients who fail to have complete and durable virologic responses
to therapy for a myriad of reasons. These shortcomings of the current regimens are particularly evident
in patients whose baseline levels of plasma “viral load” are high, who have had extensive prior
treatment and in whom the stage of disease is advanced.
2.2
CHARACTERISTICS OF AVAILABLE ANTIRETROVIRAL
DRUGS
Currently available antiretroviral drugs belong to two major classes:
1. Reverse Transcriptase Inhibitors (RTIs)
2. Protease Inhibitors (Pls).
Reverse Transcriptase Inhibitors are further divided into 2 groups:
1.1 Nucleoside Reverse Transcriptase Inhibitors (NRTIs)
1.2 Non-Nucleoside Reverse Transcriptase Inhibitors (NNRTIs).
In most industrialised countries a range of antiretroviral agents have been approved, licensed and
registered for the treatment of HIV. At present, they include:
six NRTIs
three NNRTIs
•
•
•
•
•
•
•
•
•
zidovudine (AZT, ZDV)
didanosine (ddl)
zalcitabine (ddC)
stavudinc (d4T)
lamivudine (3TC)
abacavir (ABC)
five Pls
nevirapine (NVP):
efav.irenz (EFV)
dclavirdine (DLV)
•
•
•
•
•
saquinavir (SQV)
ritonavir (RTV)
indinavir (IDV)
nelfinavir (NFV)
amprenavir (APV)
.
All these drugs act by blocking the action of enzymes that are important for replication and
functioning of HIV. Once HIV invades a macrophage or T-lymphocyte, the enzyme HIV reverse
transcriptase initiates copying of the viral genetic code (RNA) into the genetic code of the infected
host cells (DNA). After this, HIV genetic material is integrated into the host’s DNA. This is followed
by multiplication, creating several billion new copies of HIV per day. The enzyme protease
contributes to viral reproduction by enabling the assembly and release of viable particles of HIV from
infected cells.
For optimal efficacy, antiretroviral drugs, usually from different classes, must be used in combination.
A similar approach to therapy is already established practice in the treatment of other important long
term diseases such as cancers, tuberculosis and leprosy. Several combination regimens with
demonstrated effectiveness in achieving durable suppression of HIV replication are available. All
available antiretroviral drugs have class-specific adverse, effects, which are summarised below. For
more details on drug specific adverse effects, see Annex II.
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Nucleoside Reverse Transcriptase Inhibitors
(NRTIs) may cause fatty change in the liver, which is reversible upon stopping the medications, or
lactic acidosis, a metabolic complication that is potentially fatal if unrecognised. These two adverse
effects are due to toxicity of the NRTIs on cbllular mitochondria. Changes in body fat distribution as
well as derangements in the metabolism of fats, which are described below, have also been associated
with the prolonged use of NRT1 containing regimens.
Protease Inhibitors
(Pls) have been associated with body fat redistribution which manifests physically as thinning of the
arms, legs and face and/or deposition of fat in the abdominal and shoulder regions. A further effect of
this class of drugs on the metabolism of fat may result in raised levels of scrum cholesterol and scrum
triglycerides, in insulin resistance and rarely in increased blood sugar levels. The overall cumulative
incidence of these metabolic disturbances may be 30% to 60% after 1 to 2 years of treatment,
increasing with duration of therapy. AJ1 drugs in this class may cause bleeding episodes in patients
with hemophilia.
Non-Nucleoside Reverse Transcriptase Inhibitors
All NNRTIs may cause a skin rash. These rashes are generally mild and self-limited, though severe
forms similar to a Stevens-Johnson syndrome have been reported. NNRTIs may also cause elevation
of scrum aminotransferases and rare cases of fatal hepatitis have been reported.
2.3 INITIATION OF THERAPY
Earlier hopes that HIV could be eradicated from an infected individual were based on the erroneous
assumption that complete suppression of viral replication could be achieved using currently available
therapies. It is now known that low-level replication of HIV occurs at concentrations of plasma “viral
load” below the limits of detection by the most sensitive assays in use. The decay half-life of resting
memory CD4+ lymphocytes which harbour latent HIV in ‘sanctuary sites’ in the body, is at least 6
months and as long as 44 months. It is therefore estimated that eradication of HIV with ART alone
would take at least a decade and so the goal of treatment must now be redirected towards the long
term management of a chronic infection.
The ultimate aim of antiretroviral treatment must be maximal suppression of HIV replication because
the major short-term risk of any continuing viral replication in the presence of antiretroviral drugs, is
the emergence of drug resistance. The success of ART is determined more by the patient’s compliance
with and adherence to the prescribed regimen than by the specific drug combination used. Decisions
about when to start therapy and what regimens to use are crucial because future treatment options may
be severely compromised by an initial regimen that is inadequately adhered to or insufficiently potent.
Physicians and patients together need to weigh the advantages and disadvantages of starting
antiretroviral therapy and make individualised informed decisions.
Arguments in favour of early initiation of antiretroviral treatment include:
• HIV infection almost invariably causes progressive immune damage
• disruption of the immune system and the building of viral reservoirs are early events the natural
history of untreated HIV infection includes selection for more diverse and more virulent strains of
HIV
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There is, however, an increasing tendency to defer initiation of ART until immune deficiency becomes
measurable and the risk of disease progression becomes relevant because:
• the risk of disease progression is low until substantial CD4+ cell loss has occurred
• immune recovery is impressive even when therapy is delayed
• many patients only achieve incomplete or transient control of viral replication, resulting in
selection for resistant strains of HIV
• any regimen has toxicity and cost.
According to current published international guidelines, the following broad criteria guide the
selection of patients for initiation of therapy:
• all patients with symptomatic HIV infection, regardless of CD4+ count and “viral load” levels
• all patients with CD4+ counts below 350/mm 3
• all patients with a high viral load (i.e. above 30,000 copies/ml by RT - PCR )
Current guidelines recommend that treatment be considered for patients in the intermediate range, i.e.
plasma viral load between 10, 000 and 30,000 copies/ml (RT-PCR) and CD4+ cell counts between
350/mm3 and 500/mm3. Treatment of asymptomatic patients, with CD4+ cell counts above 500 mm 3
is generally deferred as long as the probability of significant immune system damage and of clinical
progression of HIV infection remains low.
2.3.1
Choice of regimen
Several regimens with acceptable antiviral potency are available, particularly for patients being treated
for the first time. These regimens are composed of three to four drugs. Two Nucleoside Reverse
Transcriptase Inhibitors (NRTIs) generally form the backbone of most of these combinations. The
choice of specific NRTI is based on convenience, adverse effects and patient preference.
Possible NRTI combinations (not in preferred order)
• zidovudine + didanosinc, zalcitabine, or lamivudine
“ stavudine + didanosine or lamivudine
Zidovudine and Stavudine should not be used together because of their antagonistic effect on each
other. Similarly, Didanosine and Zalcitabine may lead to additive neurotoxicity and should not be
combined.
Combination regimens containing a Protease Inhibitor
Pl-containing regimens, (2 NRTIs + 1 PI), have been the first choice for initiating ART since 1997 and
there is sufficient data on their effectiveness over the last two to three years. Protease Inhibitor
regimens have proven potency and are effective in patients at all levels of plasma “viral load.”
However, there are important disadvantages that limit the acceptability of PI containing regimens:
• complexity of the regimens makes adherence difficult
• cross-resistance between different Pls may limit future use if initial therapy fails
• there is growing concern over the long-term toxicity of Pls, particularly the fat redistribution and
the metabolic abnormalities whose effect on cardiovascular morbidity and mortality remains
uncertain.
* The different techniques used for measuring viral load; reverse transcriptase polymerase chain reaction (RTPCR), branched chain DNA (bDNA) and nucleic- acid sequence based amplification (NASBA), produce
different results that are consistent within the technique, but different between techniques. The values of viral
load referred to in this document are those of RT-PCR.
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Combinations of 2 Pls are increasingly being used instead of a single PI because they have
pharmacokinetic advantages and possibly increase the PI regimen’s potency while potentially
improving adherence to therapy. Addition of a reduced dose of Ritonavir, to Saquinavir, Indinavir or
Amprenavir improves the pharmacokinetic profiles, may reduce pill burden, lower the dose frequency,
lower cost, and obviate the need for administration of Pls on an empty stomach. The long-term benefit
and toxicity of dual PI combinations remains to be fully characterised.
Combination regimens without a Protease inhibitor
Combination regimens without a Protease Inhibitor Combinations between NNRTIs and NRTIs have
recently gained popularity .There is convincing evidence from controlled clinical trials that in
treatment-naive patients, NNRTI regimens offer a suitable alternative to Pl-containing combinations in
terms of antiviral potency. Besides the advantage of deferring the introduction of Pls, NNRTI
containing regimens may also allow for a lower pill burden and for improved adherence. The main
disadvantage of NNRTIs is the ease and rapidity with which resistance develops to the individual
drugs in this class if they arc used in the context of a regimen that is not maximally suppressive and
the very strong likelihood that cross class resistance will follow. Data on the long-term clinical
efficacy of NNRTI containing regimens remains limited.
The use of three NRTIs to “spare” both Pls and NNRTIs has recently been proposed. Most data refer
to the combination of abacavir, zidovudine and lamivudine which has shown durable antiviral activity
(after 48 weeks of treatment), equivalent to that of a “standard” 2NRTI + 1PI regimen
(zidovudinc/lamivudine/indinavir), in treatment naive patients. This combination, however, seems to
have reduced potency in patients with high baseline plasma viral loads. The main attraction of a
3NRTI regimen is deferral of the use of Pls, while also sparing the NNRTI and placing only a single
class of antiretroviral drugs “at risk” for the development of resistance. Once again, the long-term
efficacy and toxicity of multinucleoside regimens remains unknown and there is concern over the
potential possibility of selecting for multinucleoside-resistant variants of HIV.
There is no data at present demonstrating superiority of any one of the above acceptably potent initial
regimens over the others and recommendations for a specific initial regimen or for a specific
combination of individual drugs cannot be made. The choice of a particular regimen remains
individualised with consideration given to the strength of supportive data, the tolerability of the
regimen, the potential for adverse effects, likely drug-drug interactions, convenience and likelihood of
adherence and the potential for alternative treatment options should an initial combination fail.
Table 1. Summary of currently available initial ART regimens*
Advantages
| Disadvantages
2 NRTIs + 1PI
• Complexity and high pill burden
• Solid clinical data
• May compromise future PI regimens
• Longest experience for viral suppression
• Concerns on long-term toxicity
2NRTIs + 2PIs
■
• High pill burden with some regimens
• High potency
• Long-term toxicities unknown
• Low pill burden
2 NRTIs + 1 NNRTI
• Limited long-term data
• Low pill burden
• Compromises future NNRTI regimens
• Equal potency to PI regimens
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3 NRTIs
• Defers 2 classes (PI, NNRTI)
• Low pill burden
•
•
•
•
Lower potency in patients with high baseline
viral load
Limited long-term data
May compromise future NRTI regimens
Potential convergence of mitochondrial
toxicity
* Source: Carpenter et al. JAMA, January 19, 2000: 283 (3); 384.
2.4 MONITORING
Response to ART is monitored clinically and biologically. The most important biological
measurements are the concentration of HIV - RNA in plasma (the “viral load”) and CD4+ cell counts.
These measurements correlate with clinical outcome. The desirable “virologic” endpoint is a plasma
viral load that is “below the limits of detection”, by the most sensitive assay being used, within 3 to 4
months of starting treatment and the achievement of a minimum decline from the baseline viral load of
1.5-2.01og by the end of the first month of treatment. In patients with higher baseline plasma viral
loads (e.g. above 100,000 copies/ml by RT-PCR) maximal suppression of viral replication may take a
longer time. When optimal response to therapy is achieved, the median CD4+ cell rise is 100 - 200
cells within the first year. The CD4+ cell response may lag behind the “virologic” response in timing
and at times the two responses may even be discordant.
The optimal frequency of viral load monitoring is unknown. In general, plasma viral load is checked
within 1 month of initiating therapy and two-monthly thereafter until the virologic goal of therapy, i.e.
viral load below the limits of detection, is achieved. Following this, plasma viral load may be checked
every 3 to 4 months. Due to possible individual oscillations in the concentrations of HIV1-RNA and to
variability in the assays in use, the baseline viral load measurement before initiation of treatment and
any measurement thereafter that indicates a viral “rebound” significant enough to warrant considering
a change in therapy, is routinely confirmed by a repeat test.
Table 2a. HIV-RNA measurements in monitoring antiretroviral therapy
HIV-RNA levels that suggest initiation of therapy
•
above 30,000 copies/ml by RT-PCR
Target level of HIV-RNA after initiation of treatment
•
Timing of target response
•
Frequency of HIV-RNA measurements at baseline:
•
•
“below the limits of detection” (at present taken as
below 50 copies/ml RT-PCR) (< 400 copies/ml
may be acceptable in some settings)
“below the limits of detection” within 3 to 4
months of initiating ART (in patients with high
baseline HIV-RNA levels, maximal suppression
may not be for 6-8 months)
2 measurements 3-4 weeks apart
within 1 month of starting therapy to confirm
antiviral activity of the regimen
every 2 months until viral load is below the limits
of detection every 3 to 4 months thereafter together
with CD4 count (shorter intervals before critical
decisions on therapy)-
•
2.4.1
TREATMENT FAILURE
The most frequent reasons for changing treatment are drug toxicity, drug intolerance, difficulties with
adherence to the regimen and treatment failure i.e. a drug regimen that is providing insufficient control
of viral replication as indicated by lack of an adequate and sustained suppression of plasma HIV-RNA,
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lack of a satisfactory increase in CD4+ cell count or clinical progression of disease.
In clinical trials, a substantial proportion of patients (over 30%) do not achieve viral loads below the
limits of detection. This is dependent on many factors such as baseline viral load and CD4+ count,
primary acquisition of drug resistant virus, prior antiretroviral treatment, occurrence of adverse events
and poor quality of adherence. In clinical practice, up to one year after the initiation of potent
combination antiretroviral therapy, up to 1/3 of patients on ART may have viral loads above 20,000
copics/ml. (RT-PCR) Failure to reach the virologic target of therapy prompts investigation into
probable problems of drug adherence, drug absorption or the presence of drug resistant virus.
Table 2b. Viral load in treatment failure
Changes in HIV-RNA that suggest treatment failure
• insufficient viral suppression 4-6 months after starting ART
• confirmed return above 400 copies/ml (by RT-PCR) in a patient with previously
undetectable viral load
The management of treatment failure depends on the reasons for failure. Where toxicity and
intolerance arc the main problems, supportive medication, dosage alteration or substitution of the
offending drug is reasonable. When adherence difficulties are responsible for treatment failure,
measures aimed at improving the patients’ compliance arc advised. If poor control of viral replication
has been going on for an extended period of time, the presence of drug resistance is likely and
resistance testing may, in this instance, guide the choice of subsequent treatment.
2.4.2
HIV RESISTANCE TO ANTIRETROVIRAL DRUGS
The high rate of replication that is found throughout the course of HIV infection and the variability of
HIV, coupled with the relative inaccuracy of the enzyme HIV reverse transcriptase, are the main
reasons for the frequent occurrence of copying errors in the transcription of viral genetic information.
HIV replicates at the rate of around 10s to 1010 virus particles per day, probably giving rise daily to
about 3x10 -3 spontaneous changes (mutations) in its genetic sequence. The ultimate size of a viral
population containing a mutation is probably determined by three concurrent factors: the forward
mutation frequency, the replicative capability of the mutated virus and the “age” of the viral
population containing the mutation i.e. how long ago this population was generated. With the on-going
production of genetic variants of HIV there is then a continuous selection for the “fittest” virus
population.
Sub-optimal ART regimens that allow replication of HIV to continue in the presence of antiretroviral
drugs, encourage the growth of viral populations that are carrying a genetic mutation which protects
against these drugs. It is likely that many of these drug resistance mutations already exist before any
antiretroviral drug is introduced and are further encouraged to proliferate under the selective pressure
exerted by drug treatment.
Antiretroviral therapy can minimise the emergence of drug resistance in two ways:
• by maximising and sustaining the suppression of viral replication
• by using drugs where multiple mutations are required before resistance can occur.
In recent years laboratory testing for antiretroviral drug resistance has become available raising the
possibility of using resistance testing to guide therapeutic choices. The testing methods in use,
however, are still hampered by technical complexity, poor sensitivity, difficulties in interpretation and
high cost. The place of resistance testing in every day clinical practice remains to be clearly defined
because while it appears useful in patients experiencing treatment failure, its utility in other situations
(treatment naive patients, patients who have failed on multiple regimens or pregnant HIV-positive
women) is still under investigation. When performing testing for antiretroviral drug resistance, it is
important to ensure that this is done while the patient is still on therapy in order to maximise accuracy.
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Cross resistance among the available classes of antiretroviral drugs is common and is an important
consideration when assessing the possibility of sequencing (replacing one drug with another) should it
become necessary to change a therapeutic regimen (Table 3). Cross-resistance implies that a
population of virus resistant to one drug in a class is also resistant to other drugs of the same class.
This is particularly liable to occur with the NNRTIs especially if they are used as part of a regimen
that produces incomplete suppression of viral replication. The NNRTIs in general present a very low
“genetic barrier” to resistance because a single mutation is sufficient to produce resistance. Pls and
NRTIs arc more robust in this respect since multiple mutations are required to confer resistance to
drugs in these classes.
2.4.3
FUTURE APPROACHES TO THERAPY
The seemingly large number of possible antiretroviral drug combinations is only apparent. Therapeutic
options are actually limited by cross reactivity within the currently available classes of antiretroviral
drugs. New drugs with increased potency that are safer, easier to take, with more favourable
pharmacologic properties and with activity against drug-resistant viruses, are needed. Validation of
drug resistance testing for use in clinical practice will provide clinicians with a helpful patient
management tool and the choice of therapy will hopefully be guided by individual resistance profiles,
allowing for more effective treatment.
It is becoming increasingly evident that the course and the outcome of HIV infection are mostly
determined by events that take place during primary infection. Future treatment strategies, through
controlled studies, will focus on the early recognition and treatment of primary HIV infection. There is
evidence that a specific and effective cellular immune response to HIV occurs in infected subjects.
This has led to the exploration of alternative approaches to therapy that would aim at enhancing this
host immune response such as therapy with drugs like Interleukin 2 and with certain HIV-derived
immunogens. Studies are ongoing to design further strategics of treatment based on immunologic
intervention.
The example of the “long term non-progressor” (individuals whose HIV infection is effectively
controlled by their own specific CD4+ T cell response) suggests that enhancing the immune response
may lead to a stable equilibrium between virus and host. A similar response is observed in other
persistent viral infections such as those caused by herpes viruses, where the host’s immune system is
able to keep a virus silent. One approach to ART that is under investigation is antiretroviral therapy
with structured treatment interruptions. The hope is that intermittent interruptions in ART, by allowing
host immunity to be exposed to HIV, may act to augment the duration and the strength of host immune
responses to HIV and therefore increase immunologic control of the infection. Additional potential
advantages of structured interruptions of ART are: reduced toxicity, improved tolerance, greater
adherence to treatment and reduced overall cost. Results from a few uncontrolled studies are available
which indicate that the majority of patients seem to experience a rapid rebound in plasma HIV-RNA
during treatment interruptions as well as a rapid decline in CD 4+ cell counts. The implications of
these results and the possibility of boosting HIV-specific immune responses through this approach still
remain controversial and need to be further clarified by controlled studies.
A variety of other approaches to stimulating the immune system are under investigation. While
research into eradication of HIV also continues, a combination of potent ART with immune-based
therapies may be the most durable approach to achieving long term containment of HIV replication.
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Table 3. Cross resistance among available classes of antiretroviral drugs and possibilities of
subsequent sequencing of drugs from the same class.
NNRTIs
Likelihood of Possibility of Possibilities of Sequencing Comments
Cross-rResistiince
High
No
may only have one chance
Pls
High/Modcrate
Yes
NRTIs
Modcratc/Low
Yes
3
Recommendations about
optimal sequencing cannot be
made from ART history alone
Cross resistance may be due to
unique pathways of multi-drug
resistance
SECTION TWO
SOME EXPERIENCES WITH ART IN RESOURCE LIMITED
SETTINGS
Experiences with ART in resource limited settings are a source of important information in terms of
defining the standards of clinical practice in those settings as well as the social and economic contexts
which influence the use of antiretroviral drugs. National programmes and pilot initiatives from six low
and middle-income countries are described in the pages that follow. All have in varying ways fulfilled
the essential pre-conditions (See section 3.1) for introduction of ART programmes.
3.1 ART COVERAGE
The proportion of people with symptomatic HIV infection who are receiving ART ranges from small
to insignificant. In Uganda, probably less than 1% of people with HIV related illnesses arc receiving
ART. In Thailand, in 1996, nearly 10% of people eligible for treatment were being treated through the
Ministry of Public Health (MOPH) programme in 58 hospitals, but that proportion has substantially
decreased since then. In Brazil, however, nearly 100,000 out of 530, 000 people with HIV infection
are receiving ART following a presidential decree, in November 1996, that access to antiretroviral
drugs be made universally available through the public health system.
3.2 CONTEXT: PUBLIC OR PRIVATE SECTOR, DONOR
SUPPORTED AND RESEARCH PROJECTS
With some exceptions such as Brazil, where ART is provided at no cost within the public health
sector, “ability to pay” is determining access to drugs in many low and middle-income countries. The
drugs themselves may be obtained privately and medical care as well as related services such as
laboratory monitoring is often provided through the private sector. The public/private distinction is
however blurred by the fact that private patients who can pay for the drugs are often treated and
monitored in “centres of excellence” (e.g. the teaching hospitals of major cities) which themselves are
publicly funded. A few patients receive drugs at subsidised cost through donor supported projects such
as the UNAIDS Drug Access Initiative in Ivory Coast. Similarly, in Senegal, less than one hundred
patients are being treated with antiretroviral drugs, through an initiative supported by the National
Aids Control Programme, Agence Nationale de Recherche sur le SIDA — France, Institut de Medecine
et d’Epidemiologic Africaine — Paris and Fondation d’Espoir — France.
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A minority of PLHA receive free treatment through participation in clinical trials which may be
externally and/or nationally funded. This is the case in Thailand, where patients are receiving drugs
through the HIV-NAT clinical trials conducted in 19 hospitals around the country.
3.3 QUALITY OF CARE AND OUTCOMES
Available data suggest that the clinical outcomes of treatment, in the context of centres of excellence,
externally funded projects or clinical trials, are very similar to those in industrialised countries. From
about 1997, HIV care centres in 2 large Brazilian cities have recorded a significant decrease in the
number of AIDS deaths, a reduction in the prevalence of major HIV related opportunistic infections
and an overall decrease in the number of hospitalisations for HIV related illnesses. In the context of
unregulated practice, the quality of care and the outcomes of treatment may be different but because
such situations are difficult to evaluate, there is no information available.
3.4 LABORATORY MONITORING SERVICES
Access to reliable laboratory monitoring is limited in low and middle-income countries and is
concentrated in the major cities. Within the public health system in Brazil, there is a network of 70
laboratories with capacity to perform CD4+ counts and 56 laboratories with the capacity to measure
plasma viral load. Elsewhere, the necessity for regular CD4+ cell counts and estimations of plasma
viral load to evaluate the effectiveness of treatment adds to the overall cost of ART and within the
private sector, laboratory monitoring is largely dependent on financial resources, so that patients
themselves will often request for less monitoring in order to pay for more drugs. Treatment centres
accredited to the UNAIDS HIV Drug Access Initiative in Uganda, have been able to carry out the
required virologic monitoring of ART through the collaboration and aid of a donor funded research
laboratory, which provides the tests at no costs to patients, as part of the evaluation of that pilot
initiative. Similarly laboratory monitoring has been provided at not cost to patients within the Drug
Access Initiative in Ivory Coast, while in Thailand, regular immunologic and virologic monitoring
form part of the research protocols for clinical trials.
3.5 Surveillance for Drug Resistance
Monitoring for resistance is rarely undertaken in any developing country setting but its importance as
a public health responsibility is recognised. Within every ART programme, as for any antimicrobial
treatment, lies a public health responsibility to protect the future utilisation of the drugs by minimising
the emergence of drug resistance. Modalities for surveillance of HIV drug resistance are a necessity
and though the technology is too costly for most resource limited countries to afford, there exist
.innovative ways to strike a balance between resource constraints and good clinical/public health
practice. To this end, Ivory Coast, Senegal and Uganda have initiated collaboration with international
laboratories that have the capacity to carry out monitoring for antiretroviral drug resistance.
3.6 SUPPLY AND DISTRIBUTION OF THE DRUGS
By and large, the entire range of antiretroviral drugs is available anywhere in the world through
private channels. Where resources permit, the supply may be adequate and consistent. Through the
public sector, however, and for low-income patients, the choice of drugs may be somewhat restricted.
This has implications for decisions such as when to start therapy, which therapeutic regimens to use,
and what to do when treatment fails. In the context of clinical trials, reliability of supply and quality of
-13-
drugs is relatively well assured. In the donor - supported projects, despite the subsidised cost of
antiretroviral drugs, it is still not unusual for financial constraints to lead to cessation of treatment. In
Brazil, a substantial and rapidly increasing proportion of antiretroviral drugs are being produced in the
country with considerable cost savings and a positive impact on sustainability and supply.
3.7 Initiation of treatment
The majority of patients in low income countries start treatment at an advanced stage of HIV disease
as illustrated by records from some of the treatment centres: in one treatment centre in Ivory Coast,
55% of patients were in CDC category 3 at the start of the treatment, in Senegal this proportion was
75%, while 68% of the patients at the Mildmay centre in Uganda had advanced disease at the start of
therapy. This is due to a combination of factors such as late care seeking through fear or denial, a lack
of accessible counselling and testing services so that many people arc unaware of their HIV infection
and the high cost of the drugs which leads to treatment being deferred.
Initiation of treatment for private patients may follow the same criteria as established in industrialised
countries. At the same time, private sector patients are often advised to save scarce resources and
delay initiation of ART until the occurrence of the first serious HIV related illness. In the context of
clinical trials and donor-supported projects, treatment is initiated according to biological criteria
determined by in-country technical committees. In Senegal, treatment for symptomatic patients is
started when the CD4+ cell count is below 350/mm 3 and the viral load above 10,000 copies/ml, while
the eligibility criterion for asymptomatic patients is a viral load above 100, 000 copies/ml. In the
public health system in Brazil, the recommendation is that PLHA be treated when CD4+ cell count is
between 200 and 350 cclls/mm3 or if the viral load is over 50,000-copies/ml.
3.8 CHOICE OF THERAPEUTIC REGIMEN
Most of the ART initiatives particularly those linked to clinical trials and in the externally funded
projects have aimed to use the highly potent three-drug combination therapies i.e. regimens containing
a Protease Inhibitor, as recommended by international guidelines. In Brazil, 55% of patients on ART
are on triple combination therapy as are 43 of 109 patients treated in one centre in Ivory Coast.
Generally speaking, however, as the choice and sustainability of ART regimens is largely determined
by cost, there is widespread use, especially in private practice, of dual nucleoside regimens (2 NRTIs)
because of simpler monitoring requirements, improved compliance and lower cost. There is also a
significant amount of use of Hydroxyurea containing regimens. The implications of these therapeutic
practices seeking to adapt ART combination regimens to the resources of low-income countries are
discussed in section 3.4.
4 SECTION THREE GUIDE TO ART IN RESOURCE LIMITED
SETTINGS
4.1 WHAT SHOULD BE IN PLACE BEFORE INITIATING ART
PROGRAMMES *
Due to the high cost of antiretroviral drugs, the complexity of the regimens and the need for careful
monitoring, specific services and facilities must be in place before considering the introduction of
ART into any setting.
-14-
The following conditions are essential to the introduction of ART:
• Assured access to voluntary HIV counselling and testing (VCT) and institution of follow up
counselling services for ART to ensure continued psychosocial support and to enhance adherence
to treatment.
• Capacity to recognise and appropriately manage common HIV related illnesses and opportunistic
infections.
0 Reliable laboratory monitoring services including routine haematological and biochemical tests
for the detection of drug toxicity as well as access to facilities for monitoring the immunologic and
virologic parameters of HIV infection.
• Assurance of an adequate supply of quality drugs, including drugs for the treatment of
opportunistic infections and other HIV related illnesses.
• Identification of sufficient resources to pay for treatments on a long-term basis.
• Information and training on safe and effective use of antiretroviral drugs for health professionals
in a position, to prescribe ART.
• Establishment of reliable regulatory mechanisms against misuse and misappropriation of
antiretroviral drugs.
4.1.1
COUNSELLING FOR ART
ART may be a lifelong undertaking. A relationship of confidence needs to be established from the
outset between the patient and the care team. It is important that adequate time is set aside for
counselling so that appropriate and informed decisions on therapy and its implications are made by the
patient, based on information given to them that is as accurate and as complete as possible. Many
people seeking ART will have had prior counselling at the time of diagnosis (pre & post-test
counselling).The positive messages and future plans initiated during pre and post-test counselling
should be reinforced during counselling for ART.
ART must not detract from HIV prevention messages. Even though the aim of treatment is to
lower the amount of HIV in the blood, often to levels below the limits of detection by sensitive
laboratory assays, patients must not conclude that it is no longer necessary to use protective
measures to prevent the transmission of HIV. Counsellors should stress that HIV can still be
transmitted even while on ART.
Whenever available, the services of a care provider with counselling skills are invaluable. However,
the counselling and psychosocial support process is an ongoing component of ART requiring
contributions from the prescribing physician, the pharmacist, other health workers, family members
and peer support groups of PLHA. An assessment of psychosocial support needs should be made right
from the start with the intention of assuring that this will be maintained through out the period of
therapy. The issues that need to be addressed during counselling may be broadly classified into 5
categories: Financial considerations, Drug information, Emotional support, Issues of disclosure and
Adherence.
4.1.2
FINANCIAL CONSIDERATIONS
In many developing countries the patient or their family meets the cost of ART. Alternatively, drugs
may be obtained as part of a clinical trial; as part of an “expanded access” program; through private
sector funding, e.g. employment health insurance; or as a donation. It is important to discuss how the
drugs are going to be paid for before embarking on treatment since financial constraints are a common
reason for default from treatment. The importance of adherence to therapy and the consequences of
intermittent therapy, cessation of therapy or of taking sub-optimal doses to minimise drug costs,
should be candidly discussed with all concerned.
-15 -
4.1.3
DRUG INFORMATION
Antiretroviral drugs have received a large amount of publicisation in the popular press. Even in lowincome countries many people with HIV know about antiretroviral drugs and may at times have
unrealistic expectations about the availability and effects of ART. Counsellors should be equipped
answer questions on the different ART drug regimens, the requirements for clinical monitoring of
ART, the expected results, the possibility of treatment failure and the criteria for changing or cessation
of therapy. Sources of reliable medical information on ART which are patient oriented, should be
identified and provided.
The counsellor must inform that ART is not a cure. Elimination of HIV from the body has not been
achieved using the most potent antiretroviral combination therapies available and even when HIV viral
RNA is not detectable in the plasma, there is still ongoing viral replication. The drugs will therefore
need to be taken for an indefinite period of time. It is equally important to convey an understanding
that knowledge on ART is still evolving and that up to date information about the positive and the
possible negative outcomes of treatment will constantly be provided.
Some adverse effects such as headache, nausea and minor allergic reactions are common in the first
few weeks of ART. Counsellors should be aware of these and reassure clients that some initial adverse
effects will usually lessen with time while simple symptomatic remedies can alleviate many of them.
The nausea and vomiting that is commonly experienced at the onset of treatment with zidovudine, for
example should not lead to discouragement or discontinuation of treatment. Counsellors should at the
same time give detailed information on the possibility of potentially serious adverse effects in the
event of which drug therapy must be discontinued. Examples are the polyneuritis and hepatitis, which
can occur with Reverse Transcriptase Inhibitors and the skin rash that results from a severe
hypersensitivity reaction to abacavir. Patients need to know how to recognise the symptoms of these
adverse effects and where to go for help should they occur.
The presence and types of food in the stomach affects the absorption of some of the Protease
Inhibitors. Dietary changes will have to be made and meals will often have to be' planned carefully
around a drug regimen. This can be inconvenient and disrupt family and social life. If family members
can be involved in discussions about these issues, it will help them to understand the importance of
timing meals and changing routines. The counsellor may have to take time to work out a “meal and
drug taking time table” that fits in with the client’s and the family’s life style. Many PLHA may resent
the constraints that taking drugs imposes on their lives and this has to be acknowledged and explored
when starting therapy. Asymptomatic PLHA who feel unable to embark on the strict regime that some
regimens will impose on them may do better to postpone treatment and the implications of this advice
should also be discussed.
4.1.4
EMOTIONAL SUPPORT AND DIFFICULT DECISIONS
Many PLHA commencing ART in developing countries, experience feelings of guilt, fear, anxiety and
isolation because this therapy is extremely costly and not universally available. Many may have
partners and/or children who also require treatment and who cannot access it for financial reasons and
vital family resources may be being diverted to buy the medications. Patients often know and associate
with other PLHA who themselves are not being treated but who were a source of encouragement and
support before the decision to commence ART. Very often patients themselves question the wisdom of
commencing antiretroviral therapy at all. Time taken to work through these feelings and doubts will
significantly enhance commitment to therapy.
ART in symptomatic patients often results in remarkable clinical improvement. This improvement
however, is not universal. Furthermore, clinical improvement may be incomplete or short lived
particularly in patients who have had prior antiretroviral treatment or when drug resistance or severe
adverse effects supervene. Additionally, in many resource-limited settings, treatment is often put off
until such advanced stages of immune deficiency that the outcome is less favourable. Counsellors will
have to support patients through the disappointment of treatment failure and balance optimism and
-16-
realistic caution. Depression and despair are common when CD4+ counts do not rise and weight is not
gained as had been expected. This is aggravated when the patient is aware of draining his or her
financial resources into a treatment that may be viewed as futile. There will also come a time when
counsellor and patient will have to discuss cessation of treatment and end of life issues.
4.1.5
CONFIDENTIALITY AND SHARING HIV STATUS*
The disruption of life style brought about by complicated lifelong ART regimens should not be
underestimated. Involving a partner or significant other in treatment counselling will make taking
antiretroviral drugs much simpler. The counsellor should encourage disclosure of HIV status to
partners and/or close relatives so that the burden of the drug-taking schedule can be understood and
shared. Informing sexual partners of the continuing risk of HIV transmission, even while on ART, also
ensures that protective action is maintained. It is however, important to explore the patient’s own
perception of the risks associated with disclosure so that reassurance and support can be planned
against such barriers to disclosure as the fear of rejection, abandonment and violence; the risk of
loosing one’s employment or the refusal of insurance. Antiretroviral treatment of children presents a
special challenge for counselling on disclosure. Should children be told about their own serostatus?
Should their siblings be told? Should the school be told?
4.1.6
ADHERENCE TECHNIQUES
Incomplete adherence to the prescribed drug regimen is a major factor that limits the effectiveness of
ART. The drug regimens are complex and the duration of treatment indefinite. In order to maximise
the benefits of treatment immense personal discipline and commitment are required of the patient.
Possible barriers to adherence such as number and timing of doses, number and size of pills, food
restrictions and fear of undesirable side effects, should be identified and used to design programs to
support adherence. A “drug timetable” is useful and helps patients with their drug-taking schedule.
Reassurance concerning the immediate and long-term side effects of the drugs is also very helpful and
enhances adherence. In addition, the patient should be given explanations on the variety of alternatives
available in the event that an initial drug regimen becomes intolerable.
4.1.7
CLINICAL EVALUATION BEFORE INITIATION OF ART
A detailed clinical evaluation is essential prior to initiating ART and should aim to:
-• assess the clinical staging of HIV infection
• identify past HIV related illnesses
• identify current HIV related illnesses that will require treatment
• identify co-existing medical conditions that may influence the choice of therapy
The standard detailed medical history should include questions on the following:
• when the diagnosis of HIV infection was first established
• the cunent symptoms and concerns of the patient
• symptoms of all past illnesses and if known the diagnosis and treatment given
• a history of symptoms of or previous treatment for tuberculosis
• a history of possible contact with tuberculosis
• past symptoms of sexually transmitted infections the possibility of pregnancy in a woman
• social habits and sexual history
The following are important components of the physical examination:
• patient’s weight
• skin and lymphnodes:
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•
•
•
•
•
•
•
herpes zoster, Kaposi’s sarcoma, lympadenitis, HIV dermatitis
oropharyngeal mucosa Dcandidiasis, Kaposi’s sarcoma, leucoplakia
examination of the heart and lungs including examination of a Chest x-ray
examination of the abdominal system particularly for liver and spleen size
examination of neurological and musculoskeletal systems for: mental state, motor or sensory
deficits.
whenever possible examine the optic fundus □retinitis or papilloedema
examination of the genital tract
The initial laboratory evaluation should provide the following:
1. confirmation of diagnosis of HIV infection DHIV testing should be done or repeated,
particularly where no prior documentation is available and especially if the patient is
asymptomatic
2. indicators of the patients immune status CD4+ cell counts * are good indicators of immune
function in HIV infection. DThe total lymphocyte count correlates very well with CD4 cell
counts, particularly in advanced HIV disease, and can be used as an indicator of immune
function.
3. information on the patients baseline haematological, hepatic and renal function DThe baseline
blood count complete with examination of a peripheral blood film is necessary because of the
frequent occurrence of anaemia, neutropenia and thrombocytopenia both as complications of
HIV infection and as adverse effects of ART. DBiochemical tests of liver function arc needed
to exclude co-existing hepatitis and as baseline references in case of ART drug induced
hepatic toxicity. A complete urine analysis comprised of a test for glycosuria, proteinuria and
careful microscopy of the urine sediment is adequate initial screening
4. screening for tuberculosis ^Tuberculosis is the most common O1 in HIV infection in
developing countries and must be actively excluded and/or treated. Examination of a chest Xray is therefore considered an essential part of initial clinical evaluation.
5. diagnosis of other intercurrent illnesses Several “supplementary” laboratory investigations,
for the diagnosis of HIV related or other illnesses that may require treatment, will be indicated
by findings from the patient’s history and physical examination. Examples arc histological
examination of skin lesions to confirm Kaposi’s Sarcoma, aspiration or biopsy of enlarged
lymph nodes and screening tests for sexually transmitted infections (STIs). This list is by no
means exhaustive.
Table 4. Initial laboratory evaluation for ART : A number of alternative techniques to the conventional
cytofluorometry_____________________________________________________________________
Essential lab investigations
Desirable investigations Supplementary
investigations
HIV Serology
CD4+ counts or
Total lymphocyte count
Complete Blood Count
Tests of Liver Function
Complete Urinalysis
Chest X-ray 4.
4.1.8
HIV - 1 RNA
that may be indicated by
symptoms and signs . .
Histology on skin biopsy/lyrnph nodes
Screening for STIs
Pregnancy test
Abdominal ultrasonography
HIV-RNA TESTING
Plasma HIV-1 RNA assays/viral load assays are useful for indicating the prognosis of HIV infection,
for indicating when asymptomatic patients should be treated and as a reference for subsequent
monitoring of the virological response to therapy. In settings where resources are limited the
availability and the cost of these assays are important considerations for the patient.Though desirable,
there is no need to routinely perform a viral load assay as part of the initial laboratory evaluation of a
patient who is symptomatic.
-18-
Some of the first generation viral load assays give falsely low results of viral load on samples from
patients with subtype A/E infections and do not detect HIV-1 group 0 or HIV-2 RNA. The relative
regional prevalence of HIV subtypes should therefore be taken into consideration when recommending
viral load assays.
4.2 INITIATION OF THERAPY
4.2.1
WHOM TO TREAT
Most countries with ART programmes have established criteria for initiating ART developed by
national technical committees, which balance the need to extend access to treatment as widely as
possible against the feasibility of ART. Wherever possible national criteria should be developed by
countries themselves. In resource limited settings, where the conditions necessary for the introduction
of ART have been fulfilled, priority for treatment should be given to symptomatic patients with severe
immune damage (i.e. CD 4 count below 200 cells/mm 3 ), because these patients arc at a high risk for
disease progression. In the event that initial viral load testing is available, patients identified to have
very high plasma viral loads, (i.e. above 100 000 copies/ml RT-PCR) have a poor prognosis and
should also be offered treatment.
4.2.2
CHOICE OF THE REGIMEN
The use of combinations of antiretroviral agents aimed at maximal suppression of viral replication is
the standard of care, (see Table 1)
No currently available antiretroviral agent is sufficiently potent to provide sustained suppression of
viral replication on its own. At best, monotherapy yields incomplete viral suppression for a very
limited duration of time: 0.6 to 0.8|Og reduction in the viral load for 6 to 8 months. Thereafter, drug
resistance is inevitable and cross-resistance to other antiretroviral agents may emerge. Monotherapy is
therefore not recommended for the treatment of HIV infection. However, for the specific indication of
prevention of mother to child transmission of HIV infection, short course monotherapy is still
recommended.
Dual Nucleoside Therapy (2 NRTIs)
Historically, controlled clinical trials comparing dual nucleoside regimens of 2 NRTIs to monotherapy
demonstrated enhanced ‘virologic’ efficacy as well as a survival benefit, in patients with advanced
HIV infection (CD4 counts below 350 cells/mm3). Therapy with 2 NRTIs can potentially achieve a
1.51og reduction in “viral load”.
Between 1995 and 1997, before the potent three-drug combinations became the standard of treatment,
many PLHA were treated with dual nucleoside regimens. A small proportion of patients in
industrialised countries are today still maintained on 2 NRTIs because this regimen is relatively well
tolerated by the patients and careful clinical monitoring indicates continuing suppression of viral
replication. It should nevertheless be noted that, during the ‘era’ of dual nucleoside therapy in
industrialised countries, despite some benefits on an individual level, there was no record of a
significant beneficial impact at population level in terms of reduction in HIV related mortality.
Experiences from the resource limited countries where dual nucleoside regimens are presently being
used indicate that there is some benefit from dual nucleoside regimens, but that these regimens do not
achieve or sustain suppression of HIV replication to the same extent as the three-drug regimens.
Despite the limitations of dual nucleoside regimens, where a more potent regimen is not available:
2NRTIs may be suitable for treating patients with advanced HIV disease, who arc at high risk for
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disease progression (e.g. CD4 count below 200 cells/mm 3 ).
Patients with advanced immune suppression often have high levels of HIV activity as measured by the
plasma viral load. Because of the limited duration of the clinical and immunological benefits of dual
nucleoside therapy and because viral replication is very' likely to continue during dual nucleoside
therapy, every effort should be made to switch the patient to a maximally suppressive regimen in order
to minimise the progressive accumulation of drug resistance mutations.
Table 5. Advantages and disadvantages of dual nucleoside regimens
| Advantages of 2 NRTI
low cost lower
pill burden/better tolerance
easier to monitor
Disadvantages of 2 NRTI
lower antiviral potency
emergence of resistance more likely
The place of Hydroxyurea
In many resource limited settings, Hydroxyurea + Didanosine or Hydroxyurea + Stavudine are
occasionally used in the treatment of HIV because of the low cost of these combinations. Hydroxyurea
has no direct antiretroviral activity and is not considered as an antiretroviral drug. Hydroxyurea may,
however, enhance the antiviral activity of nucleoside analogue reverse transcriptase inhibitors (NRTIs)
through various possible mechanisms:
• depletion of host cellular enzymes that are essential for cell replication;
• repletion of cellular enzymes necessary for metabolising NRTI’s to active form;
• depletion of numbers of activated lymphocytes vulnerable to HIV infection.
This specific targeting of host rather than viral proteins provides an alternative approach to
antiretroviral therapy so that efficacy of hydroxyurea is not affected by emergence of HIV mutations
resistant to NRTIs. The main disadvantage is that these effects are also exerted on other replicating
cells in the host and this is the basis for the common toxic effects of hydroxyurea i.e. reduction in the
numbers of circulating blood cells. The slight increase in antiviral efficacy when hydroxyurea is added
to Didanosine or Stavudine is therefore offset by a significant decrease in the CD4+ cell numbers. This
effect can be harmful in patients with low CD4 counts who also have active opportunistic infections.
There have also been recent reports of fatal acute liver insufficiency as well as pancreatic insufficiency
among patients receiving a Hydroxyurea + Didanosine regimen. Much of the evidence for the
therapeutic effectiveness of Hydroxyurea combined with Didanosine and/or Stavudine comes from
small studies with short follow-up periods. Before any recommendation can be given, further safety
and efficacy data are needed.
4.3
MONITORING ANTIRETROVIRAL THERAPY *
Patient on ART should be closely followed to assess adherence to therapy as well as tolerance of the
treatment and efficacy of the treatment. At the start of treatment it is advisable for patients to be seen
monthly and once stabilised they can then be seen every three to four months. More frequent visits
may certainly be dictated by various intercurrent needs so follow up plans should be tailored to
individual patient requirements.
4.3.1
Monitoring adherence to ART
PLHA from resource poor countries have identified the following as important determinants of
adherence to ART:
• the quality of initial and continuing counselling resulting in well-informed decisions and
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commitment by the patient to start and to maintain ART.
the availability of accessible, knowledgeable and committed medical support teams.
the assurance of a continued supply of antiretroviral medications
At each follow up visit, adherence to the treatment should be discussed in depth. The “drug timetable”
which was made at the onset of ART should be revisited to see how this is functioning in real life and
the patient should be assisted to work through any difficulties they have encountered. Close co
operation and communication between clinicians, pharmacists/dispenscrs, other counsellors, patients
and family are vital. Carers need to remain aware of the issues surrounding individual patients’ access
to ART in order to anticipate difficulties in adherence and to plan support.
4.3.2
Monitoring tolerance to ART
The causes of any new symptoms or signs developing after the initiation of ART should be identified
whenever possible. New symptoms may be related to intercurrent illness or due to adverse effects of
antiretroviral drugs. Shortly after commencing ART, certain opportunistic infections may become
clinically apparent as a result of the syndrome of immune reactivation, and these should be diagnosed
and treated.
If new complaints are due to adverse effects of drugs, these should be explained to the patient and
appropriate measures implemented, be this by adapting the drug regimen, providing symptomatic
treatment or giving simple reassurance. Direct questioning on early symptoms of the documented
clinically serious adverse effects of antiretroviral drugs is mandatory, as is systematic physical and
laboratory examination to look for indicative signs. In this way adverse effects like severe anaemia
and neutropenia; polyneuritis; pancreatitis; hepatitis; nephrolithiasis and serious hypersensitivity
dermatitis can be detected early and remedial actions taken. Table 6 lists the ancillary laboratory tests
that should complement patient interview and physical examination to monitor for drug toxicity. The
necessity for these tests will vary according to the antiretroviral drugs being used and to whether or
not tests are indicated by the patient’s symptoms.
Table 6. Laboratory monitoring for tolerance of ART
Antiretroviral drug class
Laboratory Tests
NRTI
NNRTI
Essential to monitor routinely and at baseline:
Complete blood count
X
Urine (glucose, protein, microscopy)
X
Necessary when indicated by clinical features:
X
X
• Scrum transaminases
• Serum amylase
X
• Scrum creatinine/Urea
X
• Creatine phosphokinase
X
Protease inhibitor
X
■■■
••• *
X
X
• Serum triglycerides
X
• Blood glucose
X
* Further Reading: Laboratory Requirements for the Safe and Effective Use of Antiretrovirals. Guidance Module
number 5. Guidance Modules on Antiretroviral Treatments. WHO/UNAIDS. WHO/ASD/98.1; UNAIDS/98.7
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T>|S '3>X S"
06893
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4.3.3
Monitoring the efficacy of ART
The efficacy of ART is indicated by clinical improvement of the patient and by a favourable response
of the biological markers of HIV infection, namely CD4+ cell counts and plasma “viral load”. Some
clinical indicators of disease progression and response to treatment:
• a gain in body weight
• increase in total lymphocyte count
• decrease in frequency/scvcrity of opportunistic infections
• decrease in occurrcnce/severity of HIV related malignancies
CD4 lymphocyte counts*
The clinical manifestations of HIV infection are mostly dependent on the levels of CD 4+ cells; the
CD4 count.Where viral load assays are not available, a rise in the CD4 count is an acceptable
indication of treatment efficacy. In addition, CD4+ cell levels arc very useful when deciding on the
time to start or to stop prophylaxis against certain opportunistic infections. In patients in whom
undetectable viral load levels have been achieved, which indicates the desired suppression of retroviral
activity, a median increase in CD4+ cells of about 100-200 cells per year may be expected.The
magnitude of this increase in CD4+ cells will depend on the baseline CD4 count as well as other
factors which influence the outcome of ART. It is worth noting that following initiation of therapy, the
“CD4 response” as evidenced by rising CD4+ cell counts, is much slower than the “viral load
response” and may take several months to years to be complete. A reasonable frequency of CD4 count
measurements in patients on ART is every 3-6 months.
Plasma HIV-1 RNA assay or “viral load”*
The plasma viral load is a measure of HIV replication and the suppression of viral replication is one of
the primary goals of antiretroviral therapy. Sustained suppression of HIV replication is not only an
indication of the efficacyof treatment but also may delay or prevent the emergence of drug resistance.
It is advisable to measure viral load shortly after initiating ART i.c. within 1 to 3 months, as a check
on the effectiveness of the therapy. It also becomes necessary to measure the viral load when the
response to therapy, as shown by the other indicators, is unfavourable and whenever a change in the
therapeutic regimen is contemplated. When interpreting the results of viral load assays caution is
advised for several reasons:
• viral load levels vary according to the technique that has been used, the laboratory where the test
has been done, the time and the way the sample was transferred to the laboratory.
• viral load levels may be increased after a recent infection, vaccination or lapse in treatment;
• certain viral strains that are particularly frequent in developing countries may be difficult to detect
with some of the commercially available testing methods.
Wherever ART is introduced, a reliable reference laboratory, where the necessary biological
monitoring tests can be assured, should be established.
4.4
CONSIDERATIONS OF DRUG INTERACTIONS
The majority of patients presenting for care in resource limited countries have symptomatic HIV
infection and so, in addition to antiretroviral agents, they are likely to be taking other medications:
• for the control of HIV/AIDS related symptoms
• for prophylaxis of opportunistic infections
• for treatment of opportunistic infections and tumours
• for treatment of other coincident infections
-22-
Successful ART results in amelioration of many HfV/AIDS related symptoms and a decreased
likelihood of opportunistic infections. It may even be possible, once immune competence has been
restored, to discontinue primary prophylaxis for some of the opportunistic infections. There are
nevertheless, numerous possibilities for drug interactions of which clinicians need to be aware. Drug
interactions are of clinical importance if they increase the likelihood of drug toxicity or if they
decrease the therapeutic effectiveness of an administered drug. The longer the duration of any drug
therapy, the more significant this becomes. In the context of ART clinically important interactions are
likely:
• between the different antiretroviral drugs that arc prescribed
• between prescribed drugs and alternative or non-prescription medications,
• between drugs and food (see section 3.2.2)
• with certain “recreational” drugs
A detailed synopsis of all possible drug interactions is beyond the scope of this publication and only a
few important examples arc cited on the following pages. There exist several sources of information
on potential drug interactions, particularly where access to the Internet is available and these are well
worth referring to.
4.4.1
ANTIRETROVIRAL DRUGS AND THE TREATMENT OF TUBERCULOSIS
The Rifamycin antibiotics (Rifampin & Rifabutin) stimulate the activity of the enzyme system in the
liver (cytochrome P450) that metabolises Protease Inhibitors (Pls) and Non Nucleoside Reverse
Transcriptase Inhibitors (NNRTIs).This can lead to a reduction in the blood levels of the Pls and the
NNRTls. Conversely, Pls and NNRTIs may also enhance or inhibit this same enzyme system,
although to individually different extents, and can ...1
... 1 lead to altered blood levels of the Rifamycin antibiotics. The potential drug to drug interactions
may result in ineffectiveness of the antiretroviral drugs, to innefective treatment of tuberculosis or to
an increased risk of drug toxicity. It is worth noting that:
• Rifabutin, can be used with all Pls (except Saquinavir) and with all NNRTIs (except Delavirdine),
although dosage adjustments are sometimes necessary.
• Isoniazid, which is recommended for the preventive therapy of tuberculosis, is free from any
interactive effect with Pls and NNRTIs.
• The Nucleoside Reverse Transcriptase Inhibitors (NRTIs) are not metabolised by the cytochrome
P450 enzyme system and arc free from interaction with either of the Rifamycin antibiotics.
Tuberculosis is an important public health problem in many resource-limited countries and also a
common “opportunistic infection” in HIV infected individuals. With time, as the use of antiretroviral
drugs increases, it is likely that the concurrent treatment of these two infections will become more
frequent. It has been suggested that in resource limited settings, patients with active tuberculosis
should not commence ART until chemotherapy for tuberculosis has been completed. While this would
greatly simplify treatment regimens and enhance adherence, the effects of this approach on the overall
outcomes of treatment have not been fully evaluated and further research is needed. In general, the
treatment of tuberculosis should be in accordance with the recommendations of the National
Tuberculosis Programme in each country. Since Rifabutin is often not available in resource limited
countries, the following are possible options for the treatment of tuberculosis in patients receiving
ART, which are drawn from published guidelines.
Possible options for ART in patients with active Tuberculosis (TB)
•
*
Defer ART until TB treatment is completed
Defer ART until ‘the continuation phase’ of treatment for TB and use Ethambutol + Isoniazid as
.
-23-
•
•
•
•
continuation.
Treat TB with Rifampin containing regimen and use Ritonavir + 2 NRTIs *
Treat TB with Rifampin containing regimen and use Ritonavir/Saquinavir + 2 NRTIs *
Treat TB with Rifampin containing regimen and use Efavirenz + 2 NRTIs *
Treat TB with Rifampin containing regimen and use a 2 NRTIs regimen, then change to
maximally suppressive ART once TB treatment is completed.
4.4.2 INTERACTIONS WITH DRUGS COMMONLY USED FOR THE PREVENTION
AND TREATMENT OF OIs
Trimethoprim/Sulfamethoxazole, Ganciclovir and Hydroxyurea can potentially cause additive
haematologic toxicity when given together with Zidovudine. In these situations, careful monitoring of
haematologic indices is necessary. Dapsonc, may lead to additive neurotoxicity when used together
with Stavudine, Zalcitabinc, and Didanosine. The antifungal agents Ketoconazole and Fluconazole
may inhibit the metabolism of Protease Inhibitors and the resultant increase in the serum levels of Pls,
increases the risk of toxicity.
4.5
FURTHER RESEARCH NEEDS
Research is vital to inform future treatment and care decisions as well as for the advancement of
scientific knowledge. To date there has been a paucity of controlled clinical trials in low and middle
income countries. However some programmes such as HIV-NAT in Thailand and HIV-NET in South
Africa have paved the way for successful needs based research applicable to local requirements. This
has been achieved through interaction between local researchers, governments and international
funding and research agencies. Such partnerships for clinical research not only provide locally
applicable evidence for treatment strategies but also build research capacity in low and middle-income
countries.
It is vital to ask appropriate research questions that will have an impact locally but which could also be
applicable to other settings. Most treatment advances will have initially been evaluated during the
licensing process in industrialised countries. Whilst not aiming at duplicating research, an evidence
base for local application of ART interventions must be developed for resource limited settings.
A vast amount of medical research is underway worldwide in the field of HIV. Researchers have a
duty to establish that their studies are not unnecessarily repetitive, ask appropriate questions and do
not unduly raise expectations in advance of favourable findings. The establishment of local research
committees and a Data and Safety Monitoring Board for individual studies can help to maintain
transparency and probity of the research process. All research conducted must adhere to the ethical
guidelines which exist in individual countries and which reflect those established by International
regulatory authorities. Suitable topics for research could be:
• Research in supportive medication and processes related to medication
• Alternative therapies including traditional approaches to care and treatment
• Assessment of cost-effectiveness of novel treatment strategies using antiretrovirals, particularly
those investigating simplified regimens, new induction-maintenance regimens and pulsed/cycled
antiretroviral therapy.
• Treatment and monitoring strategies adapted to resource limited settings.
• Research related to treatments which have not been studied in the populations in which they will
•
be used
Research on utility of treatments against local viral strains and HIV-2
-24-
4.6 INFORMATION AND TRAINING NEEDS
Quality information is the basis of good decision making in health care provision, and in-service
training or continuing medical education for health personnel ensures that standards of good clinical
practice are maintained. Even when antiretroviral drugs are not yet directly available or affordable by
the health systems or patients, the attention generated by these drugs in the media is such that carers
need to be equipped with regularly updated information that is technically sound and regularly
updated. Information needs to be at a level appropriate for the user and in suitable language. The
targeted populations should include: Decision-makers, Health-care professionals in both public and
private sectors, Patients, Family and carers in the General Public.
Every HIV care centre accredited or regulated to provide and monitor ART should therefore design an
information and training plan as an integral part of the treatment programme. This represents a costeffective intervention in its own right and training programmes on comprehensive clinical care of
HIV, including ART, should be initiated at country level and tailored to local needs.
-25-
7
MATERIAL ON HIV/AIDS
SENT BY
MEDICAL MISSION INSTITUTE
UNIT FOR HEALTH SERVICES AND HIV/AIDS
SALVATORSTR. 22
D-97074 WURZBURG
GERMANY
June 2001
T UNASDS
UNICEF • UNDP • UNFPA • UNDCP
UNESCO « WHO « WORLD BANK
r NATIONAL AIDS PROGRAMMES
- A GUIDE TO MONITORING AND EVALUATION
m
T
T
T
ra
ru
to
TABLE OF CONTENTS
INTRODUCTION TO THE GUIDE
1
1
1.1
Components of the toolkit
1
1.2
The importance of monitoring and evaluation for AIDS programmes
4
1.3
The use of indicators at different levels
5
1.4
The different functions of surveillance, monitoring and evaluation
7
2
A MONITORING AND EVALUATION SYSTEM
11
2.1
The monitoring and evaluation unit
13
2.2
Clearly stated programme goals
14
2.3
Indicators
14
2.4
A data collection and analysis plan
19
2.5
A data use plan
21
3
INDICATORS
25
3.1
Policy and political commitment
29
3.2
Condom availability and quality
35
3.3
Stigma and discrimination
43
3.4
Knowledge about transmission of HIV
49
3.5
Voluntary counselling and testing services
59
3.6
Mother to child transmission
69
3.7
Sexual negotiation and attitudes
77
3.8
Sexual behaviour
79
3.9
Sexual behaviour among young people
89
3.10
Injecting drug use
99
3.11
Blood safety
105
3.12
STI care and prevention
113
3.13
Care and support for the HIV-infected and their families
121
3.14
Impact: HIV, STIs, mortality and orphanhood
133
Contents
iii
,
In the early years of the H1V/AIDS epidemic,
programme managers had little information
about what interventions were likely to work in
reducing the spread of the virus, and little idea
of how they might measure the success of their
interventions beyond simply tracking HIV or
AIDS itself. What’s more, it was widely be
lieved that sensitive behaviours such as sex
and drug injection - known to spread the virus
- could not be reliably measured at all. There
was an urgent need to respond in any way
possible. Measuring the success of the re
sponse was not high on the list of priorities for
most programme managers.
Over the last decade, this thinking has
changed. Much more is known about how HIV
spreads through a population, and what
changes are needed to slow the spread. It has
been amply demonstrated that people will an
swer questions about their sex lives, and there
is growing evidence that their answers give a
fairly reliable picture of trends in behaviour
over time.
As the body of knowledge surrounding HIV
grows, so does the interest in monitoring and
evaluating the success of programmes de
signed to reduce the spread of infection and the
impact it has on the lives of families and com
munities. This interest comes from national
governments as well as from the taxpayers,
programme directors and international donors
who support their efforts. The need for better
monitoring and evaluation has also spawned a
growing number of data collection instruments
and indicators.
Many different countries and institutions have
contributed to the current understanding of
how best to monitor and evaluate HIV and
AIDS programmes. This guide, the result of a
broad consultation with country programme
staff, donor representatives and evaluation
specialists from institutions all over the world,
attempts to bring together their experience. It
aims to summarise the best practices in the
field of monitoring and evaluation (M&E) of
Introduction
national HIV and AIDS programmes at the end
of the 1990s, and to recommend options for
M&E systems in the future. By consolidating
existing data collection instruments and creat
ing a framework within which improved in
struments can be developed, this guide and the
toolkit which accompanies it aim to simplify
an increasingly complex field.
This introduction outlines the contents of the
toolkit and gives an overview of the different
functions of surveillance., monitoring and
evaluation. The next pan of the guide de
scribes the main features of a sound M&E
system. Finally, indicators for key areas of
HIV prevention, AIDS care and STI control
programmes are proposed. It should be
stressed that this is not an attempt to reinvent
the wheel. In proposing indicators, the guide
takes into account existing standards and ex
perience. New indicators are only proposed in
those areas where none previously existed, or
where country experience suggests that exist
ing indicators are not useful or have been over
taken by the HIV epidemic.
1.1
Components of the toolkit
This guide is accompanied by a number of data
collection instruments and guidelines needed
to construct the proposed indicators. These are
based on existing materials from a variety of
sources, and co'.er different areas of AIDS
programmes: knowledge, attitudes, sexual
behaviour: programme context, input and out
put; service provision: and health status. They
include various types of data collection in
struments, for example population surveys and
health facility assessments. Some of the in
struments have been in existence for many
years and have been widely tested, others are
relatively new. and a few are still being tested.
If specific instruments improve with experi
ence, previous versions can simply be replaced
with newer versions. To enable users to access
the latest version of a given data collection
instrument, all updates will be posted on the
Internet at a UNAIDS Web site, initially oper
ated by the MEASURE Evaluation Project
(m ww.cpc.une.edu/nteasure and
www.unaids.art;).
Panel 1 lists the data collection instruments
included, grouping them according to which
aspect of programming they measure. Panel 5
cross references individual indicators by pro
gramming area data collection instrument.
The choice of indicators and therefore of data
collection instruments will depend on a num
ber of things, including the stage of the epi
demic. available resources and capacity for
data collection. These choices are discussed at
greater length in the second section of this
guide.
Panel 1: Monitoring and e'aluation tools (Instruments in italics are still under development)
Monitoring of pro
gramme performance
and context
Population
Surveys
AIDS Programme Effort
Index (Futures/
POLICY project)
General population
survey (UNAIDS)
Assessment of STI ser
vices (WHO/UNATDS)
HIV surveillance: policy
guidelines
(WHO/UNAIDS)
MEASURE Evaluation/WHOtPSI Compiled
Condom Retail Avail
ability and Quality Pro
tocol
AIDS Module DHS
(MEASURE DHS+)
Assessment of VCT
services (UNAIDS)
HIV surveillance in sub
populations of high-risk
behaviour
(WHO/UNAIDS)
Monitoring spending
and budget allocations
(UNAIDS. Futures
Group)
Youth target group
behavioural surveillance
(FHI/IMPACT)*
Assessment of MTCT
services (UNICEF.
WHO, UNAIDS. Hori
zons)
STI surveillance (RPR.
other lab data, disease
reporting) (WHO)
Assessment of discrimi
natory practices and
legislation (UNAIDS)
Female sex workers
behavioural surveillance
(FHI/IMPACT)*
Protocol for the evalua
tion of HIV1AlDS care
and support
(WHO/UNAIDS)
Media review-based
tools and indicators
(MEASURE Evaluation)
General adult population
behavioural surveillance
(FHI/IMPACT)’'
Blood safety draft pro
tocol (MEASURE
Evaluation)
Men who have sex with
men behavioural
surveillance
(FHI/IMPACT)*
MEASURE Service
Provision Assessment
Facility-Based Assessment
■
(SPA)
Intravenous drug users
behavioural surveillance
(FHI/IMPACT)*
* Part .of the Behavioral Surveillance Surveys (BSS): Guidelines for repeated behavioral surveys in
population groups al risk for HIV
Monitoring of programme context and
effort
Programme context monitoring focuses on the
compilation of input and output data that can
be used tb monitor changes in effort and con
text over time. This includes the assessment of
condom distribution and quality, based on
instruments developed by WHO/GPA and
Population Services International (PSI), as
well as indicators of STI drug distribution. The
newly developed AIDS Programme Effort
Index, co-ordinated by the Futures Group’s
POLICY Project, attempts to capture some of
the contextual and programmatic aspects of the
national response. UNAIDS Country Profiles
provide a series of indicators that can help
describe the socio-economic and demographic
background of the epidemic.
Monitoring of knowledge, attitudes and
sexual behaviour
Tools for monitoring knowledge, attitudes and
sexual behaviour include guidelines for house
hold surveys in the general population, and in
specific sub-populations, including informa
tion on sampling methods and questionnaires.
Such surveys yield most of the information
necessary for constructing indicators of knowl
edge, attitudes and sexual behaviour, together
with some information that can be used in
indicators of stigma. Surveys also give infor
mation about access to or utilisation of services
such as counselling and testing, home-based
care for the terminally ill, and orphan support
services. Guidelines for the collection of quali
tative data are also available.
The instrument for collection of behavioural
data in the general population draws heavily on
the general population survey section of the
WHO/GPA’s Prevention Indicators and other
WHO/UNAIDS work, as well as on the new
AIDS module of the Demographic and Health
Survey (MACRO International). The sub
population surveys were developed by Family
Health International (FHI). and are based on
FHl's considerable body of experience in im
plementing Behavioural Surveillance Surveys
Introduction
(BSS). Recent surveys conducted with help
from MEASURE Evaluation have also con
tributed to these tools.
Monitoring and evaluation of the avail
ability and quality of health and other
services
Information in this area can be gathered by
conducting regular and systematic surveys at
health facilities and at other facilities providing
HIV-related services such as voluntary coun
selling and testing centres. Instruments include
protocols for collecting information related to
STI care, counselling and testing, prevention
of transmission of HIV from mother to child
and blood safety. The STI care section is based
heavily on protocols developed by the
WHO/GPA. However, it offers additional
and/or alternative methodologies further de
veloped and tested by several countries, often
in collaboration with FHI.
In other areas covered by the facility survey.
little existing material is available upon which
to draw, and new guidelines have been devel
oped.
Monitoring HIV, AIDS and STIs
The guidelines for monitoring the presence of
HIV itself, together with syphilis and other
STIs, have been developed by UNAIDS and
WHO. They are based on a framework for
second generation surveillance developed by
the two institutions in partnership with others.
The guidelines give advice on selection of
sentinel groups and sites and provide informa
tion on using data from a number of sources
for most effective monitoring of the spread of
the virus in a given epidemic state. Other data
collection instruments in this area include
guidelines for STI surveillance (RPR. other
laboratory data, syndromic or disease report
ing), collection of specimens for HIV/STI
testing in household or sub-population surveys
and collection of data on AIDS-related mor
bidity and mortality. Guidelines on the collec
tion of blood, urine, saliva or other specimens
for HIV or STI testing are also available.
3
1.2 The importance of monitoring
and evaluation for AIDS
programmes
Monitoring and evaluation of programmes
designed to improve health and promote de
velopment are old news. Basically, M&E sys
tems track what is being done and whether the
programme is making a difference. M&E sys
tems allow programme managers to calculate
how to allocate resources to achieve the best
overall result.
All of this is familiar to anyone who has
worked in family planning, child nutrition,
primary' education or a host of other health and
development fields. Indeed, efforts by the De
velopment Assistance Committee of the OECD
and other bodies to develop evaluation and
resource allocation tools in other fields of de
velopment have laid the groundwork upon
which this guide is built. So is a separate guide
for the monitoring and evaluation of HIV and
AIDS programmes really needed? Yes. The
HIV epidemic is different from many other
issues in health and development because it is
relatively new, and no one knows exactly
where it is headed. New interventions are con
stantly proposed, and each must be shown to
be effective to justify becoming part of a na
tional or international response. Operations
research can show that a given intervention can
be effective - for example that sex education
in selected high schools can reduce risk behav
iour. For a strong national.M&E system, much
more is needed to track more generalised suc
cess. In this case, repeated behavioural surveys
among a national sample of high-school stu
dents would be needed to reflect changes in
risk behaviour following the integration of sex
education into the nation-wide curriculum.
The epidemic itself continues to shift. For
years, everyone’s attention was focused on
prevention. As HIV epidemics turn into AIDS
epidemics in one country after another, care of
the sick and social support to people with
AIDS and their families become more impor
tant. These programmes are often hard to de
liver and potentially expensive — monitoring
4
their implementation and evaluating their im
pact will be important in ensuring that the best
possible services are delivered.
HIV is politically charged in most countries.
Important religious and political lobbies, along
with the general population, may oppose inter
vention. and senior decision-makers may be
reluctant to tackle the issue in consequence,
preferring to focus on maternal mortality, child
nutrition or other more "politically neutral”
programmes. It is in this context that M&E is
perhaps most useful of all. Only careful meas
urement and recording of the success of exist
ing initiatives will persuade reluctant policy
makers to expand programme efforts.
When conducting monitoring and evaluation
activities, because so many different disci
plines contribute to the field of evaluation and
there are cross-cultural variations, it is always
useful to start with definitions that include not
only surveillance, monitoring and evaluation.
but also the terms “programme", “interven
tion”. and "project”. In the context of this
document, "programme" refers to an overarch
ing national or district-level response to HIV.
Within a national programme there are typi
cally a number of different areas of program
ming, such as the blood safety programme, the
STI control programme or the HIV prevention
programme for young people. The term "inter
vention” or “intervention strategy” refers to
specific types of activities designed to achieve
the goals of an area of programming. The
training of a large number of teachers in HIVrelated communication might, for example, be
an intervention within the HIV prevention
programme for young people. The term “pro
ject" is sometimes used interchangeably with
intervention, since in practice interventions are
often limited in scope to specific projects
funded from a single source, at least in their
initial or "pilot” phases. More often “projects"
are a mix of interventions that aim at a specific
population, defined geographically or other
wise.
1.3
The use of indicators at
different levels
This guide identifies a set of indicators and
methods for measuring them to be used at the
national level. These indicators are intended to
measure a broad range of issues regarding the
HIV epidemic and the country’s response to
that epidemic. The selected indicators help to
focus attention in the country on key preven
tion and care components of the response and
the resulting impacts. They provide a way to
track changes over time in specific prevention
and care areas. They also allow comparison of
the overall implementation and effectiveness
of the national response in different countries.
However, because the set covers so many top
ics and because substantial resources can go
into collecting indicators at a national level,
the number of indicators in any particular area
must remain limited. This means that the set
presented here will not comprehensively ad
dress all the specific monitoring and evaluation
needs of the national program in a given coun
try. nor will it cover the much more detailed
monitoring and evaluation needs of individual
projects to prevent and mitigate the impacts of
HIV. In this section we will briefly discuss the
roles which these indicators play in monitoring
and evaluation at three levels: international,
national, and project.
International level
At the international levels, the collection of
these indicators in different countries will help
international agencies and donors to:
•
•
•
•
•
track the trends in the epidemic and the
response on a global scale
identify regional trends or patterns in the
epidemic and the response
highlight persistent global and regional
problems in responding to the epidemic
advocate for expanded resources to ad
dress the pandemic
allocate financial and technical resources
so as to have the greatest impact on the
global pandemic
Introduction
It is therefore important that the indicators are
defined and measured in the same way, so that
they are understandable when viewing at the
global level and between countries and re
gions. This guide provides detailed recom
mendations as to how to measure each of the
indicators. Although contextual information is
needed to form a full picture behind any par
ticular indicator, taken roughly they can be
compared directly from country to country.
National level
At the national level the indicators presented
here can be used for many of these same pur
poses: tracking trends, identifying problem
areas, advocating for and allocating resources.
However, at the national level they will also
inevitably contribute to evaluation of the effec
tiveness of the country's overall response, that
is the sum total of all activities going on in a
country which relate to the HIV/AIDS epi
demic. For example, varied and aggressive
prevention activities among young people
might be expected to produce increased con
dom use or greater levels of abstinence from
sexual activity. The young people’s sexual
behaviour indicators presented here can track
whether this is happening or not.
In deciding on a national set of indicators, it is
important that countries realise they are not
limited to this set of indicators, nor should they
necessarily collect all of them. The choice of
indicators should be driven instead by the ob
jectives, goals, and activities which constitute
the national response to HFV and by the local
epidemiology and nature of HIV and risk be
haviours, keeping in mind that it costs time and
money to collect and analyse data for each
indicator. There is no point collecting informa
tion about risk behaviours or groups which are
not relevant to the local epidemic. In this
guide, the indicators have been divided into
core and additional indicators, with this desig
nation varying with the stage of the epidemic,
as described below. Core indicators relate to
important factors influencing the epidemic or
tracking its course and are recommended for
collection in all countries at a particular epi
demic stage. Additional indicators are only
recommended in countries where they have
5
relevance to the local epidemic or the local
national response. The applicability of each
additional indicator and suggestions for its use
are discussed in detail in the indicator descrip
tion later in this volume.
Where they fit the needs of a country, national
AIDS programmes are encouraged to use the
indicators defined here to ensure standardisa
tion of information across countries and over
time. When necessary, however, countries
should add or delete indicators to make certain
the data collected is linked to improving the
national response. For example, in a lowprevalence country where voluntary counsel
ling and testing for pregnant women is not a
national program emphasis, little value will be
added by collecting many of the indicators
listed here on mother to child transmission. If
resource constraints limit the number of
indicators collected, these might be dropped or
only one or two of them collected. On the
other hand in a country with a severe general
ised epidemic, a supplemental series of indica
tors measuring response at the local level
might be required, e.g., the number of prov
inces implementing an active provincial AIDS
committee chaired by the local governor. In a
country with a concentrated epidemic among
men having sex with men and injecting drug
users, the set of indicators here might be ex
panded to include specific nationally relevant
indicators such as percent of drug users in
methadone treatment receiving counselling on
HIV or percent of gay bars distributing con
doms.
District level
In the context of decentralisation and health
sector reform, districts are playing an increas
ingly important role in health programmes.
including AIDS programmes. Even though
monitoring and evaluation functions of dis
tricts have not been specified in most coun
tries, it is likely that districts will have two
main functions. The first pertains to district
level monitoring of AIDS programmes, the
second concerns the provision of data relevant
for national level monitoring and evaluation.
6
Many of the indicators listed in this guide are
suitable for district monitoring purposes. Re
sources however are much more limited at the
district level. A large survey could easily con
sume more than half of a districts AIDS
budget in a single year. Furthermore, districts
generally do not have the human resources to
carry out a population-based survey. In some
districts it may be possible to carry out regular
behavioural surveys of specific groups, such as
school youth, with limited outside assistance.
In general, however, district monitoring should
focus on programme inputs and outputs and
assess whether or not implementation of activi
ties progress according to a district plan. A
small facility assessment as part of routine
supervision could serve to provide information
on the quality of STI care or the availability
and utilisation of voluntary counselling and
testing services, or AIDS care by health facili
ties. In addition, districts can make use of the
existing routine health information system to
obtain data on the incidence of sexually trans
mitted infections. Between 3 percent and 5
percent of district financial resources for AIDS
should be devoted to monitoring and evalua
tion activities.
The district contribution to national level
monitoring and evaluation also focuses on
reporting of input and output data in line with
national guidelines. Good reporting by districts
would tremendously help national level moni
toring and evaluation. For instance, if a coun
try had actual data on condom distribution by
district instead of one national overall figure,
monitoring of trends in condom use may be
come more meaningful and more accurate. In
many ways the considerations listed below for
project level evaluation also apply to districts.
Project level
There is often a strong desire to use the indica
tors presented in this guide for evaluation of
specific prevention and care projects and a
belief by many that this can be done easily.
However, while some of these indicators may
remain relevant at the level of monitoring and
evaluating a specific project, they will cer
tainly not cover the full range of project moni
toring and evaluation needs. Good project
monitoring and evaluation requires a mix of
input, process, output, outcome and impact
indicators which are directly tied to the project
activities, goals and objectives. These should
then feed directly back into the project to im
prove the implementation of activities and
maximise the project’s impacts.
Many of the indicators in this volume are de
fined for use in the population at large or in
specific HIV/AIDS service settings. Collection
arid reporting of the data in the way specified
in this document may not, therefore, meet the
needs of a specific project to be assessed. And
even if they are, unless the data collection
simultaneously includes measures of exposure
to the project or an examination of other out
comes which are unique to the project’s target
audience, directly attributing any change in the
indicator to the project will not be possible.
This is a limitation of general indicators such
as those defined here when applied to national
level assessment. Even if they measure behav
iour change, the change cannot generally be
tied to one specific project since the popula
tions in question have also been exposed to
mass media and other sources of HIV/AIDS
information, friends and relatives with HIV
and AIDS, and other national and local preven
tion and care activities in addition to the pro
ject undergoing evaluation.
Thus if it is necessary to determine or demon
strate the effectiveness of a specific project,
the design of that project must include its own
baseline and follow-up assessments which
measure not only project-specific outcomes
(e.g.. increased condom use among a specific
sub-population or increased social support for
those living with HIV in the community), but
also level of exposure to the project and its
activities.
While much of the impetus for standardising
indicators has come from international bodies
wishing to make cross-country comparisons,
the value of standardised indicators within a
country cannot be overemphasised. In design
ing its own evaluation activities, a project
should bear in mind the national standard for
indicators in that field. Projects may have their
Introduction
own information needs that conform to a rig
orous evaluation design. However they are
often able to choose indicators with standard
reference periods, denominators, etc. that
would allow the data they collect to be fed
easily into the national M&E system.
If a measurement method comparable to one
proposed here is used or if the project evalua
tion activities can be altered slightly to allow
data to be collected as specified in this docu
ment without compromising the evaluation of
the project, then those indicators which are
relevant to the project should be collected and
reported to the national program.
Using comparable measures can provide the
national program with valuable measures of
the same indicator in different populations,
permitting triangulation of findings and allow
ing regional or local inconsistencies and dif
ferences to be noted and addressed. This can
help to direct resources to regions or sub
populations with greater needs, identify areas
for intensification or reduction of effort at the
national level, and aid in improving the overall
effectiveness of the national response.
1.4 The different functions of
surveillance, monitoring and
evaluation
While surveillance, monitoring and evaluation
serve different functions, they do overlap. This
section attempts to clarify how the terms are
used in this guide.
Surveillance, monitoring and evaluation all
play a role in providing information to help
determine the links between programme efforts
and resources, and the goals the programme is
trying to achieve. In the case of national AIDS
programmes, the ultimate goals will be to re
duce the spread of HIV, to improve care for
those infected, and to minimise the social and
economic impact on affected families and
communities. For a programme to achieve its
goals, inputs such as money and staff time
must result in outputs such as stocks and de
livery systems for drugs and other essential
commodities, new or improved services.
7
trained staff, information materials, etc. If
these outputs are well designed and reach the
populations for which they were intended, the
programme is likely to have positive short
term effects or outcomes, for example in
creased condom use with casual partners, re
duced needle-sharing among drug injectors, or
later age at first sex among young people.
These positive short-term outcomes should
lead to changes in the longer-term impact of
programmes, measured in fewer new cases of
STIs or HIV. or less HIV-associated death.
Monitoring
Monitoring is the routine tracking of priority
information about a programme and its in
tended outcomes. This is likely to include
monitoring of inputs and outputs through re
cord-keeping and regular reporting systems as
well as health facility observation and client
surveys. Data are usually compiled at the dis
trict level and later forwarded to the national
level to be aggregated. Such monitoring is
called programme, process or output monitor
ing.
The linked interpretation of data from different
sources is a key component of useful monitor
ing systems. Often, one indicator alone will be
unconvincing - this is especially true of indica
tors that rely on self-reported data in sensitive
areas such as extra-marital sex. The advocacy
value of an indicator showing increased self
reported use of condoms is greatly strength
ened if it is presented together with data show
ing an increase in condom distribution and a
reduction in the caseload at STI clinics.
In tracking the status of HIV infection, the
behaviours that spread it and the strength of
different areas of response, monitoring indica
tors function like the “vital signs” of the HIV
epidemic at a district, regional or national
level. They help programme managers deter
mine which areas are in need of greater effort,
and flag questions which might contribute to
an improved response but that can only be
answered by more refined outcome research
methods than those used in routine surveil
lance and monitoring.
8
Monitoring can also include the tracking of
short-term programme outcomes and long
term impact. Such data frequently come from
surveillance systems. Surveillance is the rou
tine tracking of disease (disease surveillance)
or. less commonly, risk behaviour (behavioural
surveillance) using the same data collection
system oxer time. Surveillance helps describe
an epidemic and its spread, and can contribute
to predicting future trends and targeting
needed prevention programmes. In the case of
HIV, surveillance systems typically track im
pact in terms of HIV and sometimes STI
prevalence, and outcomes in terms of sexual
risk behaviour. It is typically performed at both
the district and the national levels.
Evaluation
Evaluation is a collection of activities de
signed to determine the value or worth of a
specific programme, intervention or project.
That means being able to link a particular out
put or outcome directly to a particular inter
vention. There are three sequential levels or
phases of evaluation. The first phase - process
evaluation - involves the assessment of the
programme's content, scope or coverage, to
gether with the quality and integrity of imple
mentation. If the process evaluation finds that
the programme is not even being implemented.
or is not reaching its intended audience, then it
is not worth going on to the next phase of
evaluation. If the reality is that there is no pro
gramme. then the programme cannot be having
an}' effect. However if process evaluation
shows progress in implementing the pro
gramme as planned, then it is worth going
ahead with an evaluation of short-term out
comes. a phase known as outcome evaluation.
(In HIV prevention, HIV-related knowledge,
attitudes and beliefs have conventionally been
considered outcomes, as well as HIV-related
behaviours. But as discussed on page 15
(Framework for indicator selection), an in
crease in knowledge about HIV can only be
translated into lower infection rates through
changes in sexual or drug-taking behaviour.
This guide therefore does not consider simply
monitoring changes in knowledge, attitude,
and beliefs to be able to provide evidence of
the effectiveness of a specific program. Out
puts of programme efforts to increase knowl
edge are important, but cannot lead directly to
changes in impact without first being reflected
in an outcome indicator such as higher levels
of condom use or lower levels of sexual activ
ity.)
What is the difference between outcome moni
toring and outcome evaluation? Essentially,
outcome monitoring tracks changes in out
comes following the implementation of a pro
gramme or project, but is not able to attribute
those changes directly to the intervention. In
outcome evaluation, however, the evaluation is
designed specifically with the intention of
being able to attribute the changes to the inter
vention itself. Without the appropriate evalua
tion design, the monitoring of outcome indica
tors alone cannot produce causal evidence
about the effectiveness of a specific program.
At the very least, the evaluation design has to
be able plausibly to link observed outcomes to
a well-defined program, and should also be
able to demonstrate that changes are not the
result of non-programme factors.
In evaluating HIV prevention programmes, if
no positive changes can be seen in outcome
measures such as risky sexual or drug-taking
behaviour, then there is little point looking at
impact measures such as HIV or STD preva
Introduction
lence. Even if there is a change in prevalence,
the change cannot be plausibly attributed to
programme activities unless it is preceded by a
change in risk behaviour. Without changes in
risk behaviour, observed changes in HIV
prevalence may well be attributed to other
factors such as rising mortality or changes in
service use. However it outcome indicators
show that behaviour is changing, then it is time
for impact evaluation. True impact evalua
tions, able to attribute long-term changes in
HIV infection to a specific programme, are
very rare. Rather, monitoring impact indicators
such as HIV prevalence or adult death, taken in
conjunction with process and outcome indica
tors, are considered to be sufficient to indicate
the overall impact of a national response to the
epidemic. Taken together, monitoring indica
tors can give programme managers and deci
sion-makers an idea of whether the sum total
of all HIV-related efforts in a district, region or
country is making any difference. For exam
ple, when HIV prevalence levels among young
pregnant women attending antenatal clinics
began to fall in Uganda, a wide range of moni
toring indicators on condom distribution, con
dom availability, sexual activity among youth,
the prevalence of multiple partnerships, and
condom use were used to assess whether be
havioural changes may have caused the decline
in HIV prevalence among antenatal women.
9
Until the mid-1990s, most monitoring and
evaluation has been done in a relatively piece
meal fashion. A surveillance system for HIV is
often in place but not functioning well, a few
behavioural studies may have been done here
and there, though not necessarily using the
same sampling methodologies or indicators.
Very few countries are able to track changes in
behaviour, and they may never be able to at
tribute such changes to interventions. Research
studies may have contributed extra information
in some areas, but the results are often not used
for programmes and policy making. Extensive
evaluation of a donor-sponsored project may
have been carried out in an important area of
programming, without the results ever being
shared with others in the field. Rapid Plasma
Reagin (RPR) for sero-syphilis testing may
happen at local antenatal clinics (ANC) for
diagnostic purposes without the results ever
being passed on to the district or central level
for use in monitoring. In short, the utility of
much of the HIV-related measurement in a
country may be lost because there is no coher
ent M&E system.
A coherent system has several advantages. It
contributes to more efficient use of data and
resources by ensuring, for example, that indi
cators and sampling methodologies are compa
rable over time and by reducing duplication of
effort. Where resources are scarce, this is an
important asset. Data generated by a compre
hensive M&E system ought to sene the needs
A Monitoring and Evaluation System
of many constituents, including programme
managers, researchers or donors, eliminating
the need for each to repeat baseline surveys or
evaluation’ studies when they might easily use
existing data. Good co-ordination should lead
to better use of resources.
From the point of view of the national pro
gramme, a coherent M&E system helps ensure
that donor-funded M&E efforts best contribute
to national needs, rather than simply serving
the reporting needs of agencies or legislatures
overseas. A further advantage of co-ordination
in monitoring and evaluation is that it encour
ages communication between different groups
involved in the national response to HIV.
Shared planning, execution, analysis or dis
semination of data collection can reduce over
lap in programming and increase co-operation
between different groups, many of whom may
work more efficiently together than in isola
tion.
The ultimate use of data and indicators for
programme planning and evaluation is crucial
in any M&E system. Data that cannot or will
not be used should not be collected. Countries
have different M&E needs, dictated in part by
the state of the HIV epidemic in that country,
in pan by the effons being made by the AIDS
programme and in part by the resources avail
able. Yet successful M&E systems will share
common elements. A list of some of these
elements is given in Panel 2.
11
Panel 2: Checklist of features of a good M&E system.
| M&E UNIT
An established M&E unit within the Ministry of Health
A budget for M&E that is about 10 percent of the national
HIV/AIDS/STI budget
A significant national contribution to the national M&E budget
A formalised (M&E) link with the research institutions
*
A formalised (M&E) link with leading NGOs and donors
Epidemiological expertise in the M&E unit or affiliated with the unit
•
■
Behavioural/social science expertise in the M&E unit or affiliated with
the unit
Data processing and statistical expertise in the M&E unit or affiliated
with the unit
j
Data dissemination expertise in the M&E unit or affiliated with the unit
I
| CLEAR GOALS
Well-defined national programme goals and targets
•
1
Regular reviews/evaluations of the progress of the implementation of
the national programme plans
Guidelines and guidance to districts and regions or provinces for M&E
Guidelines for linking M&E to other sectors
•
INDICATORS
Co-ordination of national and donor M&E needs
A set of priority indicators and additional indicators at different levels
of M&E
•
Indicators that are comparable over time
•
A number of key indicators that are comparable with other countries
: DATA
COLLECTION &
ANALYSIS
An overall national level data collection and analysis plan
A plan to collect data and analyse indicators at different levels of M&E
Second generation surveillance, where behavioural data are linked to
HIV/STl surveillance data
DATA
DISSEMINATION
12
An overall national level data dissemination plan
•
A well-disseminated informative annual report of the M&E unit
•
Annual meetings to disseminate and discuss M&E and research find
ings with policy-makers and planners
•
A clearinghouse for generation and dissemination of findings
•
A centralised database or library of all HIV/AIDS/STI-related data
collection, including ongoing research
•
Co-ordination of national and donor M&E dissemination needs
2.1
The monitoring and
evaluation unit
Monitoring and evaluation of HIV/AIDS/STI
programmes generally rests with the Ministry
of Health at a national level. A special HIV
M&E unit has often been set up within the
national AIDS programme. Where the Minis
try of Health has an effective health informa
tion system. HIV and the response to it can be
monitored along with other diseases by a cen
tral epidemiological unit such as Thailand’s
Centre for Disease Control. Where the AIDS
programme is steered by an inter-ministerial
committee, the responsibility for co-ordination
of M&E activities may be located outside the
Ministry of Health, although this tends to make
M&E more complicated. This co-ordination
role of the national AIDS programme or its
affiliates is one whose importance cannot be
stressed strongly enough. Even while it is
recognised that many countries have limited
funding for tracking projects and inputs spon
sored by different donors and researchers,
maintaining an overarching picture of the in
puts into the M&E system is crucial. To be
sustainable, this must be in place as part of an
effective and coherent national M&E system
and national programmes should not hesitate to
advocate for a better use of resources from
both within and outside the national pro
gramme.
Clearly there is a wide variation in funding for
HIV/AIDS and STI programmes from country
to country. If spending on the programme is
minimal, the amount dedicated to M&E sys
tems for HIV will also be minimal. The re
verse. however, is not always true. In some
countries with relatively good resources for
drugs and treatment, monitoring of the epi
demic is either neglected, or funds for monitor
ing are allocated inefficiently. Donors wanting
to see if their money is well spent often push
for better monitoring and evaluation. In conse
quence. they also fund a disproportionate share
of M&E activities. This has created anxieties
for recipient countries, as the end of donor
A Monitoring and Evaluation System
funding has in practice led to the collapse of
many M&E activities. Since a good M&E
system is crucial to ensuring resources tire well
used, it is recommended that about IO percent
of the HIV/AIDS budget be used for monitor
ing and evaluation activities, excluding the
routine surveillance of HIV and risk behaviour.
No M&E activity should be entirely donor
dependent.
Human capacity is a major constraint to M&E
in many countries. While M&E units or com
mittees do exist in many national programmes,
they are generally dramatically understaffed
and their work is often limited to managing
sero-surveillance systems. Capacity building is
vital if M&E systems are to be strengthened. If
capacity cannot be maintained, within the na
tional programme, networks can be created to
access outside skills as necessary. At a mini
mum. M&E units should have access to an
epidemiologist, a statistician, a social scientist
and a data manager. Since available data are
often poorly packaged and communicated, the
team should also include a professional com
munications specialist/lobbyist.
The central M&E unit should maintain a for
malised link with universities and NGOs, in
the form of a technical support group for
M&E. In this group academic researchers and
donors are actively involved along with part
ners from the government, NGOs and other
national institutions. This support group com
plements the technical capacity of the central
M&E unit. The involvement of academic insti
tutions, NGOs and others assures that data
generated by these bodies are integrated into
the central M&E system. Furthermore, the
credibility of information generated by the
M&E unit is much higher if supported by a
technical group.
Where health programmes are organised verti
cally, it is important that working groups oh
M&E include monitoring and evaluation spe
cialists from other sectors sharing interests
with the HIV programme. Specialists and pro
grammes with a focus on reproductive health
including STI care and Tuberculosis (TB) pro
grammes, for example, are obvious sources of
13
data which should be integraied into the M&E
of HIV/AIDS/STI programmes.
2.2
Clearly stated programme
goals
It is not possible to monitor - much less to
evaluate - progress towards goals unless the
overall national programme goals are clear. If
the national programme has no interventions in
place to reduce vertical transmission, there is
not much point in monitoring efforts to reduce
HIV transmission from mother to child. Time
and money may be better spent on tracking
whether knowledge, attitudes and sexual be
haviour among school children are changing
following the introduction of a sexual health
education programme in primary schools. An
important step in developing, an M&E plan,
therefore, is to understand interventions and
systems in place and hov. they are currently
monitored and evaluated.
A clear statement of programme goals will
generally be made in a national strategic plan
or other strategy document. Such a document
generally includes an overall goal (something
along the lines of: “to reduce transmission of
HIV and minimise its negative impact on those
infected and affected") and then more specific
goals for particular areas of prevention and
care. These may, for example, include a reduc
tion of sexual transmission among adolescents,
the increased provision and use of quality STI
care services, or the provision of social support
including health care and schooling to orphans.
M&E systems should be designed - with the
nation’s stated goals in mind. Ideally the na
tional plan should include quantifiable goals,
although in practice this is often not the case.
In the earlier years of the epidemic, the key
national
planning
instruments
were
WHO/GPA-supported medium term plans,
usually spanning five years. Review of a me
dium term plan was.a very useful M&E exer
cise in many countries. Increasingly, planning
exercises involve a greater breadth of actors
and take more careful note of the existing
situation and of the response to date. This
process, supported by UNAIDS and its part
14
ners and described in the UNAIDS Guide to
Strategic Planning for HIV and AIDS, includes
a comprehensive situation analysis and re
sponse review. These exercises, which often
increase the resources available for data collec
tion and analysis, are likely to provide invalu
able information to complement the routine
M&E system. They also provide important
opportunities for the dissemination of informa
tion and for the strengthening of partnerships
necessary in a solid M&E system.
2.3
Indicators
The programme goals will dictate the areas in
which progress might be expected, and there
fore the areas in which it might be measured.
But how can "progress” in these areas be
measured? This is where the choice of indica
tors comes in. Indicators exist or can be con
structed for many areas of programming. (De
tails on choosing and constructing indicators
will be discussed further in part three of this
guide.)
What indicators should be selected? A number
of guiding principles can help us choose the
most appropriate set of indicators for M&E of
AIDS programmes. First, we need to use a
conceptual framework for M&E to select indi
cators and to interpret results. Second, we
should consider specific qualities of the indica
tors, such as the link with programme goals,
the indicator's ability to measure change, the
cost and feasibility of data collection and
analysis, and comparability with past indica
tors, and comparability between countries or
population groups.
Framework for indicator selection
The most commonly used framework for the
selection of indicators for M&E is the input
output-outcome-impact framework described
in Panel 3. The indicators can measure what
goes into a programme (money, number of
condoms, drugs for treating opportunistic in
fection, test kits, training, etc. - these are
known as the input indicators) and what comes
out of it (trained nurses, safe units of blood,
adolescents educated about safe sex. orphans
supported with school fees, condom sales, etc.
- these are known as output indicators). Pro
gramme outcomes are often described as better
knowledge, changed attitudes, adoption of
safer sexual behaviour, etc., and ultimately
such outcomes may have impact on HIV or
STI transmission.
The input and output of programmes and the
extent to which outputs lead to short-term out
comes (such as behavioural changes or better
STI treatment practices) are influenced by the
context in which the programme operates. This
context includes socio-economic factors, and
health system factors, but also the level of
political commitment. For instance, introduc
ing the syndromic approach for STI treatment
by training of health workers and improving
drug supply is likely to be more successful in
the context .of a strong health system with
well-paid workers than in a low-coverage
weak health system. Promotion of condoms
may be more effective if the policy and reli
gious climate is favourable to condom use.
Short-term outcomes for HIV prevention pro
grammes can be defined more strictly by using
the same logic as that used in the proximate
determinants frameworks used extensively in
the study of the determinants of fertility and of
child mortality. In this framework an outcome
(or proximate determinant) must have two
features: it can be changed by behavioural
changes (and interventions), and, if it changes,
it must have a direct effect on HIV transmis
sion. Knowledge of HIV transmission is not a
programme outcome indicator but an output
indicator, since it has no direct effect on HIV
transmission. Only if better knowledge leads to
adoption of safer sexual practices can a reduc
tion in HIV transmission be achieved.
Based on infectious disease epidemiology,
several factors affect the spread of HIV and
can be defined as programme outcomes:
Panel 3: Framework for monitoring and evaluation of AIDS programmes.
National Context
Prevention
Care and Support
A Monitoring and Evaluation System
15
»
Risk of transmission per contact: affected
by condom use, by the presence of other
STIs, by the age and sex of the uninfected
person, by type of sexual practices, by the
stage of the seropositive person's infection
and by injecting practices
o
Risk of sexual or blood contact with an
HIV infected person: affected by the over
all prevalence of HIV in the population,
the number of contacts a person has, and
the characteristics of those contacts, in
cluding their age and their levels of risk
behaviour, as well as by needle exchange
and drug preparation practices: risk of re
ceiving contaminated blood: affected by
blood screening and transfusion practices
•
Duration of infection: affected by the
treatment and care available for infected
people
Social, cultural and economic context affect
behaviour as well as programme implementa
tion. They do not, however, greatly affect the
link between behaviour and infection. If risk
behaviours change, changes in new infection
rates must inevitably follow, whatever the
country context.
This specification of programme outcomes is
most relevant to the prevention component of
national AIDS programmes. Obviously, many
national programmes do more than just HIV
prevention work: they also try' to care for peo
ple who are infected with the virus, and to
reduce the impact of the epidemic on families
and communities. These programmes, too,
affect the proximate determinants of infection.
Better care for an HIV-infected person means a
longer, healthier life. Therefore, success in the
care component of AIDS programmes can be
measured in lower morbidity and mortality the “impact” level indicator for care. But it
also may mean that infected people remain in
the pool of infectious partners, increasing the
chances of epidemic spread. Many aspects of
care and support aim to increase the quality of
life of people with HIV. and do not directly
affect the course of the epidemic. It is, how
ever, recognised that there is a strong link be
tween care and prevention programmes which
is just now becoming a focus for attention
16
among programme managers. Many aspects of
care and support programmes also feed back
into indicators at the context level and the suc
cess of care and support programmes depends
upon the context in which they operate. For
example, many programmes attempt to reduce
the stigma surrounding HIV infection. Pro
grammes address stigma mostly because
stigma may lead to active discrimination
against HIV-infected people. But addressing
stigma has a wider implication for prevention
efforts. Where HIV is highly stigmatised, peo
ple may avoid condoms simply because they
do not want anyone to think they are con
cerned about their own HIV status. A reduc
tion in stigma surrounding HFV produces a
more favourable context in which programme
inputs and outputs might affect behaviours. In
this example stigma reduction could contribute
to an increase in condom use. with a direct
effect on the likelihood of transmission per act
of sex. and therefore on HFV incidence. An
other example: prevention programmes are
beginning to provide services to reduce trans
mission of HIV infection from mother to child.
Since little can be done to save the life of the
mother, a reduction in HIV incidence among
children bom to HIV-positive mothers leads
inexorably to an increase in orphanhood.
Monitoring success in this part of the national
prevention effort will illustrate the need to plan
for more care and support services for orphans.
As links between care and prevention become
clearer, the framework for monitoring HIV
prevention programmes will certainly expand
to include care and support components of
national AIDS programmes. The prevention
framework, however, already provides a good
starting point for considering the measurement
of HIV-related indicators.
Selection of indicators
Good indicators for the M&E of AIDS pro
grammes need to be relevant to programmes,
feasible to collect, easy to interpret and able to
track changes over time. The choice of indica
tors will depend upon what the programme
aims to do. Many commonly used indicators
have grown out of international survey pro
grammes such as Demographic and Health
Surveys (DHS), or out of protocols promoted
by international bodies such as the United
Nations. While such indicators allow for com
parison between different countries, some may
be of limited local relevance.
As a first step, programmes should monitor
their inputs and outputs. Unless these change,
any change in outcome can not in any case be
ascribed to programme effort. Input and out
put indicators are often relatively easy and
cheap to collect: where they register change,
the> indicate the need for monitoring and
evaluation at the outcome or impact level.
Indicators should be chosen to measure change
in areas of programme effort. Since most na
tional AIDS programmes tailor their responses
to the state of the epidemic in their country, it
follows that the appropriate indicators will also
differ according to epidemic state. This is dis
cussed in far greater detail in the section of this
guide dedicated to the choice of indicators.
Needs for data collection
Ideally, indicators should be measurable with
already available data. Most frequently, how
ever, special data collection efforts are needed
to construct reliable indicators. In general, the
costs and difficulty of data collection increase
as indicators shift from input through output
and effect to impact. It should be possible to
collate data for input and output indicators
centrally from regular health reporting sys
tems. whereas data for many outcome and
impact indicators must be collected through
surveys (or surveillance) of health facilities, or
in population-based surveys. The cost and
incremental benefit of more regular or more
extensive data collection must also be borne in
mind. It may be worthwhile to increase the
sample size for sentinel surveillance so that
data can be disaggregated by age. yielding
important information. The trade-off may,
however, be to reduce the number of sentinel
sites, or to reduce the frequency of surveil
lance.
Why use indicators?
makers tell how successful the national pro
gramme is in meeting its goals: Indicators are
just that - they give an indication of the magni
tude or direction of changes over time. They
can not, however, tell managers much about
why the changes have or have not occurred,
and so are not always useful for diagnostic
purposes. National level monitoring systems
are generally unable to do much more than
track changes in behaviour or infection coun
try-wide. When HIV prevalence falls follow
ing a reported fall in risk behaviour, and the
change in behaviour follows an intervention
designed to promote just such a change, it may
be inferred that the national response is con
tributing to the fall in HIV infection. It is
rarely possible however to attribute the impact
directly to a particular intervention.
Most indicators are not designed to explain
why a situation has changed or has failed to
change - they are designed simply to measure
the change. Only smaller scale qualitative stud
ies can answer the "why’' question, although
understanding "why" and inquiring about
"how" change occurs are essential first steps in
deciding what to do about a problem. While
small explanatory studies do not necessarily
form pan of a nation’s regular tracking system
for HIV and the behaviours that spread it, they
are an essential link between M&E systems
and policy formulation. It is worth stressing
that small explanatory studies do not yield
standard indicators that are comparable across
countries: by definition they are trying to ex
plain something that is situation-specific.
Operations research also has a contribution to
make. Once small-scale research studies have
demonstrated that an intervention can produce
the desired result under ideal research condi
tions (in evaluation jargon, once the efficacy of'
the intervention has been demonstrated), op
erations research puts the intervention through
its paces to demonstrate its effectiveness under
real world conditions. Inputs and outputs are
carefully monitored in a programme context
rather than a strictly research environment, and
the outcome is evaluated.
Tracking changes in indicators over time will
help programme managers and decision
A Monitoring and Evaluation System
17
Composite indicators
In many areas of health and development,
there is a tendency to develop indices, compos
ite or summary indicators, which encompass
several aspects of service provision or its out
come. These summary indicators are useful in
that they limit the number of statistics that
need to be presented at the highest policy level,
or to people who are not specialists in the field
and just need a general idea of whether things
are getting better or worse.
The limitation of summary indicators is that
changes are harder to interpret. A higher score
may mean an improvement across all compo
nents measured by the index, or may be the
result of a massive improvement in one area
but an actual deterioration in another. Pro
gramme managers, who need to know about
the performance of all components, will be
interested in disaggregated data that allow
them to see progress in each area of service
18
provision separately. A good example is the
WHO/GPA prevention indicator 6, which is
correct management of STI patients using the
syndromic approach. Correct management is
defined as sound history taking, physical ex
amination and appropriate treatment.
The history taking and examination practices
may go up significantly, but if treatment prac
tices don’t improve because drugs are not
available, then the best training programme in
the world will have little effect on the compos
ite indicator. The good news is that the same
data set can usually meet both sets of needs - it
is just a matter of aggregating or disaggre
gating the data. It is important to bear the po
tential uses in mind when designing the data
collection instrument and in analysis. Aggrega
tion too early in the process of data collection
or analysis may mean that disaggregated indi
cators cannot then be calculated to meet the
needs of programme or project managers.
2.4
A data collection and analysis
plan
Once a decision has been made about what to
measure, a coherent plan must be made. This
plan foresees all necessary indicators and takes
into account all major data collection efforts
within the country, leading to the most effi
cient use of resources in data collection. For
example, a large and nationally representative
household survey on reproductive and sexual
health may be planned. Such surveys are ex
pensive and generally infrequent; they repre
sent an opportunity to collect a range of data
that may be important for monitoring progress
in the national programme. They may, for
instance, be expanded to include questions on
antenatal care service use which could be used
in the analysis of .HIV prevalence data, or
questions on orphans within the household
which may be used in the analysis of orphan
support data. The best-known international
household survey programme is the Demo
graphic and Health Surveys (DHS). In many
developing countries, DHS surveys are con
ducted once every five years or so. In addition,
regular census rounds, typically held every 10
years, can include questions which can help
monitor some areas of programming, espe
cially demographic and household impact.
The inclusion of an AIDS module in the DHS
may be sufficient to obtain data on a number of
key indicators at the national and sub-national
level. Therefore, if possible, the timing of the
last and next DHS should be taken into ac
count in devising a data collection plan.
Data collection plans should not forget to in
clude data that are already collected by agen
cies not directly involved in HIV work, and
that can help in monitoring HIV-related trends
or behaviours. Data generated by TB pro
grammes can be useful in illustrating trends in
HIV, particularly in the male population where
sentinel surveillance data for HIV is scarce.
Reproductive health programmes may already
have data on service use or sexual behaviour
which can eliminate the need for some data
collection in general population surveys or
A Monitoring and Evaluation System
health facility surveys. The data collection plan
should stipulate systems by which data from
other sources will be collected, reported and
analysed by the M&E system for HIV.
A data collection plan will detail the sampling
frame and the frequency of data collection. It
will stipulate who is responsible for what, how
much it will cost and who will pay. Since few
countries have the Financial or human re
sources to collect every bit of data they would
like to monitor their programmes, the process
of detailing responsibilities and a budget will
often lead to a re-examination of priorities.
A national M&E system should act as a clear
inghouse for both generating and disseminat
ing data. A formal mechanism for screening
data collection efforts can ensure that whatever
is collected best meets the country’s M&E
needs. In general, every extra layer of bureauc
racy carries with it the potential for unneces
sary delays. The "clearinghouse" function
should not be viewed as an approval process.
Rather, it should be a registration and rapid
review mechanism that ensures that the na
tional programme is aware of all data collec
tion efforts that could contribute to national
needs. It also allows the programme to check
that suggested indicators conform to the na
tional standards chosen by the programme, so
that comparisons can be made between differ
ent populations and across time. This is espe
cially useful in countries where responsibility
for data collection has devolved to the provin
cial or district level.
A centralised database or library of all
HIV/ALDS/STI-related data collection contrib
utes immensely to the efficiency of M&E ef
forts. What has already been done should be
noted and tracked to avoid duplicating studies
unnecessarily. Biological and behavioural data
generated by the second generation surveil
lance system, baseline studies, academic re
search and project evaluation reports should all
be centrally filed and universally available.
(Tracking and accessing evaluation reports are
the most problematic, since many government
agencies, NGOs and donor agencies involved
in programming are reluctant to share evalua
tion reports, especially if the project in ques
19
tion has achieved less than spectacular results.)
The database should list ongoing data collec
tion efforts as well as those already completed,
to avoid the duplication of studies before their
results are published. It is also exceptionally
useful to keep a record of research protocols
and questionnaires so that they can be repeated
to maintain consistency between populations
and over time.
Unfortunately - partly because M&E of
HIV/AIDS/STI-related interventions have been
so fragmented to date - donors all have their
own institutional requirements. Most pro
gramme managers are all too familiar with a
repetitive and seemingly endless stream of
reporting forms, log frames and mid- and endof-cycle evaluations. Each of these may re
quire indicators which differ only marginally
but which require a new data collection effort
each time. Even when donors are funding the
data collection, the cost in time and national
expertise of meeting all these different de
mands can be considerable. And yet where
resources are strained, it is hard for national
programmes to refuse to jump through the
hoops set up by the many different supporters
of the national response. A national M&E sys
tem should take into account the needs of the
countries and the requirements of the donors,
so that duplication of efforts and waste of re
sources can be minimised. Donors are increas
ingly aware of the need to adapt their own
reporting needs to fit in with a national moni
toring and evaluation system that is well de
signed and well co-ordinated. The indicators
suggested in this guide have been endorsed by
a large number of international supporters of
HIV programmes.
Many countries are now engaged in decentral
ising their health systems, bringing decision
making, planning and resource allocation to
the provincial or even district level. Part of the
impetus for this move is a belief that decisions
made at the local level will be more relevant to
the beneficiaries than decisions made in a dis
tant capital. In the best case scenario, monitor
ing of HIV prevalence and evaluation of the
response at the local level does indeed provide
information that is locally relevant. This in
formation is far more likely to be acted upon in
20
a decentralised system than more general, na
tionally aggregated information. Where M&E
systems do function at a local level, there is
still a need for central co-ordination of the
M&E system. Indicators must be as compatible
as possible and information exchange should
be guaranteed between different provinces or
districts. In addition, core indicators should be
compiled on a national level for advocacy with
the central government as well as to contribute
to the information needs of the international
supporters of the national response. Therefore,
a national M&E system plan should include
guidance to districts on indicators, data collec
tion and analysis and dissemination.
Multisectoral response to HIV
In several countries attempts are being made to
expand the response to the HIV/AIDS epi
demic from the health sector to a "multisec
toral approach." Planning, and in some coun
tries implementation, of HIV prevention and
AIDS care programmes has been broadened to
include all social and economic sectors. To
date, multisectoralism has been more talked
about than implemented. However, if a sub
stantial proportion of HIV-related programmes
do indeed shift from health ministries to other
sectors, multisectoralism will provide new
opportunities to gather more data and have a
broader basis to influence policy making. For
example, data from the Ministry of Education
may provide information about the schooling
of orphans. On the flip side, the involvement
of multiple sectors will also complicate the
task of monitoring and evaluation. The more
diffuse the response, the more important it
becomes to have a strong centrally co
ordinated M&E system to which each sector
can contribute information.
Cross level linking of indicators
A data collection and analysis plan should also
focus on the linking of indicators at the differ
ent levels of measurement. Programme outputs
should be interpreted in relation to programme
inputs. Programme outcomes, such as an in
crease in self-reported condom use, should be
analysed in relation to changes in programme
outputs, such as numbers of condoms sold,
HIV prevalence trends should be interpreted in
association with changes in sexual behaviour.
The latter is one of the key principles of the
“Second Generation Surveillance’- initiative.
This global effort aims to strengthen or revital
ise existing HIV surveillance systems and to
improve the linking of behavioural data with
biomedical surveillance for HIV. Panel 4 de
scribes the main features of second generation
surveillance.
2.5
A data use plan
There is no point at all in collecting data that
cannot or will not be used. The ultimate use of
the data should guide the design of a coherent
M&E system, especially the selection of the
most appropriate indicators in a country. A
clear plan for data use and dissemination will
include a stipulation of the end users for each
indicator, and how the data will be presented to
them. It may include a plan for developing a
shared database of information, and for sharing
data between programme elements, research
ers, donor agencies and others. A framework
for regular dissemination of information to the
public may also be included. In general, the
data generated by M&E systems are used in
three major ways: advocating for action; plan
ning, revising and improving programs; and
attributing change in the epidemic to interven
tions undertaken.
Advocating for action
Good information about levels of HIV infec
tion and the risk behaviours that spread it are
critical to generating a will to act. Information
about the social and economic impact of the
epidemic is also powerful in this regard. In
planning M&E systems, public health officials
should consider individuals or groups with the
power to act to change the course of the epi
demic. Public health officials should generate
data most likely to persuade those individuals
or groups to act and should package it to meet
the needs of their audience.
A Monitoring and Evaluation System
Planning, revising and improving pro
grammes
Both monitoring systems and evaluation stud
ies generate information that should be used to
improve existing programmes and to plan
more successful interventions in the future.
Monitoring information can be fed into pro
gramming immediately to correct for weak
nesses and improve performance.
This
mechanism can provide information on
whether an intervention is on track or on
budget, or whether it is producing the desired
number of trained nurses or the targeted in
crease in condom sales outlets. Evaluation
results can be used to inform future pro
gramme design, prompting a decision to repli
cate an intervention in other areas, or to scrap
it altogether because it is expensive and not
making any difference.
Information on HIV and STI prevalence and
risk behaviour generated by second generation
surveillance systems should produce a swift
response from programmers, indicating new
populations at risk and suggesting behaviours
most in need of addressing through interven
tion.
Attributing change to interventions and
generating resources
It is said that nothing succeeds like success. If
successes in HIV prevention or care are not
measured and recorded, the opportunity to
generate further success is lost. Evaluation
studies demonstrating the success of particular
interventions or of national prevention efforts
are instrumental in keeping HIV high on the
agenda. They encourage increased funding of
prevention and impact mitigation efforts and
may bring in more resources for monitoring
and evaluation.
Success stories should never be exaggerated,
however. They demonstrate successful strate
gies rather than outright victory. A feeling that
the war has been won often leads to a drop in
interest and in resources. Many countries un
dertake comprehensive programme reviews as
part of their regular planning cycle. As coun
tries move to a more strategic, less normative
planning framework for HIV programmes.
21
reviews and the situation analysis that precedes
them become broader in scope. Planning also
involves a broader spectrum of people, bring
ing representatives of all sectors of govern
ment together with others involved in the re
sponse. Strategic planning exercises provide an
22
excellent opportunity to review the M&E
framework itself, to ensure that indicators re
main relevant and cover all priority areas of
the response and to set up mechanisms for the
regular sharing of data where they do not al
ready exist.
Panel 4: Second Generation Surveillance Systems: What's new?
Second generation systems look at behaviour as well as HIV infection
Traditional surveillance systems tracked HIV infection or other biological markers of risk such as STIs.
Since HIV
. infection among adults must be preceded by one of a limited number of behaviours, such as unprotected sex with an >
J infected partner or injection with contaminated needles, we know that if these behaviours change, there will be a i
j change in the spread of HIV. Second generation surveillance systems monitor risk behaviours, using them to warn of
I or explain changes in levels of infection. Thus, second generation surveillance uses data from behavioural surveillance
i
' to interpret data gathered from sero-surveillance efforts.
I Second generation systems are tailored to the type of epidemic
t As the diversity of HIV epidemics becomes'more apparent, it also becomes evident that there is no “one size-ftts-all"
surveillance system. Efficient surveillance of a predominantly heterosexual epidemic tn a country where one adult in
six is infected will differ radically from surveillance in a country where HIV infection is growing rapidly in drug injec
tors but has yet to spread to the general population. In general, surveillance systems can be divided into three broad
types directly related to the type of epidemic:
•
In generalised epidemics where HIV is over one percent in the general population, surveillance systems concen- :
trate on monitoring HIV infection and risk behaviour in the general population.
•
In concentrated epidemics where HIV is over five percent in any sub-population at higher risk of infection (such
as drug injectors, sex workers, men who have sex with men), surveillance systems monitor infection in those ]
groups and pay particular attention to behavioural links between members of those groups and the genera] popula- ]
tion. They might ask, for example, whether male sex workers have wives or girlfriends, or whether drug users fi- :
nance their habit through sex work. In these situations, surveillance systems also monitor the general population j
for high-risk sexual behaviour that might lead to rapid spread of the virus if it were introduced.
•
In low-level epidemics where relatively little HIV is measured in any group, surveillance systems focus largely on j
high-risk behaviours, looking for changes in behaviour which may lead to a burst of infection. Such changes have
recently been recorded in several Eastern European countries, for example, where a surge in injecting drug use
was followed by very rapid growth in HIV infection.
Second generation systems use data in ways that maximise their power to explain the epidemic
i A classic antenatal clinic (ANC) surveillance system may show that HIV prevalence among women 15-49 years at
tending ANCs rose rapidly from 0 to 12 percent over eight years, and then levelled off. In the rising phase the upward
I trend meant more new infections (increasing HIV incidence), probably at all ages. But once the curve flattens out, the
explanatory power of that single figure is lost. Prevalence may be unchanged for any number of reasons: because as
I many women are dying as are becoming newly infected, for example, or because many infected women are no longer
becoming pregnant and so have dropped out of the pool of women tested at sentinel sites.
Some of these problems of interpretation can be reduced by concentrating analysis to women in the youngest age
groups, who are less subject to biases of mortality or reduced fertility and whose infection is more likely to reflect
recent trends in the epidemic. Analysing the ANC data together with data from other sources, such as general popula
tion surveys or behavioural surveys, also increases the explanatory power of sero-surveillance systems. The need to
focus on young women in antenatal clinics was acknowledged several years ago when WHO/GPA designated two of
; its prevention indicators to HIV and sero-syphilis prevalence among women 15-24 years.
I Second generation systems make the best possible use of resources
By concentrating surveillance in areas where it provides the most information and tailoring systems to a country’s
capacity, second generation surveillance ensures that money and expertise are used as efficiently as possible. For ex
ample. sentinel sites are carefully chosen to provide reliable information from a minimum number of sites, while sam
pling forbehavioural data collection takes sentinel sites into account so that strong inferences can be made in compar
ing behavioural and serological data sets.
Strenethened surveillance systems also make an effort to ensure that all data gathered are actually used, something
which, perhaps surprisingly, has not been the case in the past. Syphilis data from ANC clinics have rarely been ana
lysed for surveillance purposes, for example. Despite the association between HIV and TB. TB surveillance data are
rarely included in HIV surveillance reports. For more information see www.unaids.org.
A Monitoring and Evaluation System
23
8
MATERIAL ON HIV/AIDS
SENT BY
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June 2001
I
I'
II
II
i|
il
J
Rejection of hypothesis associating an
experimental polio vaccine with
the origin of HIV
Rejet de I'hypothese d'une association
entre un vaccin antipoliomyelitique
experimental et I'origine du VIH
Background
Historique
Since the beginning of the AIDS epidemic, there has been
Depuis le debut de 1’epidemie de SIDA, I’origine du virus de 1’im-
much speculation in both the scientific literature and in
munodeficience humaine (VIH) a donne lieu a d’abondantes spe
the popular press on the origin of the human immunodefi
ciency virus (HIV). One such theory, first put forward about
culations aussi bien dans la literature scientifique que dans la
presse grand public, line de ces theories, avancee pour la premie
10 years ago, was that HIV was initially spread through
re fois il y a une dizaine d’annees, etait que le VIH avait ete a
contamination of an experimental attenuated type 1 oral
I’origine propage par contamination d’une souche experimenta
polio vaccine virus strain called CHAT, developed at the
le de virus poliomyelitique de type 1 attenue servant a la prepara
Wistar Institute in Philadelphia,and produced only at Wis-
tion du vaccin buccal,baptisee CHAT,developpee a 1’Institut Wis
tar and at Recherche et Industrie therapeutiques (RIT),
tar de Philadelphie et produite uniquement a Wistar et Recher
Belgium. CHAT was used during vaccination campaigns
che et Industrie therapeutiques (RIT), Belgique. Le vaccin CHAT
conducted in the Congo (then a colony of Belgium) be
a ete utilise lors de campagnes de vaccination menees au Congo
tween 1957 and 1959. The theory alleged that some lots of
(alors colonie beige) entre 1957 et 1959. Selon cette theorie, cer
the vaccine were manufactured using chimpanzee kidney
tains lots de ce vaccin auraient ete fabriques a partir de cellules de
cells, causing contamination with a relative of HIV - simi
rein de chimpanze, entrainant une contamination par un virus
an immunodeficiency virus (SFVcpz) - which was said to
parent du VIH - le virus de 1’immunodeficience simienne (VIS-
have infected vaccines and transformed itselfinto the HIV
cpz) - dont on pensait qu’il avait infecte des personnes vaccinees
known today. The theory also contends that early cases of
et s’etait transforme en VIH, le virus connu aujourd’hui. La theorie
AIDS in Zaire (now Democratic Republic of the Congo)
veut egalement que les premiers cas de SIDA apparus au Zaire
occurred within close proximity of vaccination sites where
(d^sormais Republique democratique du Congo) soient surve-
CHAT vaccine was used.
nus a proximite immediate des sites de vaccination oil le vaccin
CHAT avait ete utilise.
New scientific findings
Nouvelles constatations scientrfiques
A meeting was held at the Royal Society in London in Sep
Une reunion a ete organisee a la Royal Society de Londres en sep-
tember 2000, to examine available evidence for the origin of
tembre 2000 pour examiner les donnees disponibles sur I’origine
HIV. Several hypotheses were considered.
du VIH. Plusieurs hypotheses y ont ete etudiees.
The following evidence and scientific findings presented to
Les donnees et constatations scientifiques suivantes presentees a la
the Royal Society allow rejection of the hypothesis that an
Royal Society permettent de rejeter I’hypothese selon laquelle un
early experimental oral polio vaccine was the origin of
vaccin antipoliomyelitique buccal experimental aurait ete a I’ori
HIV:
gine du VIH:
•
Using ultrasensitive molecular methods, early samples
of the experimental CHAT polio vaccine (which have
• Des echantillons du vaccin antipoliomyelitique experimental
been in safe storage since the late 1950s) have recently
des annees 50) ont recemment ^te testes au moyen de methodes
been tested, and were found negative for HIV and SIV.
moleculaires ultrasensibles et se sont reveles negatifs aussi bien
CHAT (qui avaient ete soigneusement conserves depuis la fin
pour le VIH que pour le VIS.
• The same samples also tested negative for chimpanzee
• Les memes echantillons ont Egalement donne des resultats
DNA. This finding refutes the allegation that chimpan
negatifs pour 1’ADN de chimpanze. Cette constatation refute
zee kidney tissue was used to prepare the experimental
1’aUegation selon laquelle des tissus de rein de chimpanze
CHAT vaccines that were tested. Contemporaneous
auraient et£ utilises pour preparer les vaccins experimentaux CHAT qui ont the testes. Des documents de 1’epoque
documents show that macaque monkey cells, not chim
Macaque monkeys derive from Asia and are not natu
montrent que 1’on a utilise des cellules de macaque et non de
chimpanze pour produire le vaccin. Or les macaques pro-
rally infected with SIV.
viennent d’Asie et ne sont pas naturellement infectes par le
panzee
cells, were
used
to produce
the vaccine.
VIS.
•
Many persons present at the meeting with first-hand
knowledge of the situation at the Wistar Institute and the
• De nombreuses personnes presences a la reunion et directe-
RIT laboratories in Belgium, where the CHAT vaccine
laboratoires de 1’Institut royal de midecine tropicale de Belgi
was manufactured, deny categorically that chimpanzee
que oil le vaccin CHAT a ete fabrique nient categoriquement
cells were ever used to produce the vaccine.
que des ceUules de chimpanze aient jamais ete utilisees pour
ment au courant de la situation a 1’Institut Wistar et dans les
produire le vaccin.
406
WtMir EPIDEMIOLOGICAL RECORD, NO. 49. S DECEMBER 2000
• Assertions that CHAT vaccine was produced in what
was then the Belgian Congo, using tissue from a chim
panzee colony near Kisangani, are denied by persons
directly involved in the trials. No documentary evidence
has ever been produced to prove that CHAT vaccine was
produced in Africa.
• Phylogenetic data from 3 laboratories suggest that HIV
first entered the human population around 1930, well
before the CHAT vaccine trials of the 1950s. Also, there is
substantial laboratory evidence to show that the SIV
strains most closely related to HIV-1 were not found in
Congo but in West Africa.
• Les affirmations selon lesquelles du vaccin CHAT aurait ete fa-
brique en ex-Congo beige, a partir de tissus provenant d une
colonie de chimpanz£s proche de Kisangani, sont refutees par
les personnes ayant participe directement aux essais. Aucune
preuve ecrite etablissant que le vaccin CHAT a ete fabrique en
Afrique n’a jamais ete produite.
« Les donnees phylogenetiques provenant de 3 laboratoires suggerent que le VIH a penetre pour la premiere fois la population
humaine aux alentours de 1930, c’est-a-dire bien avant les essais
du vaccin incrimine dans les annees 50. D’autre part, il existe
suffisamment de donnees de laboratoire montrant que les souches de VIS les plus proches du VIH-1 n’ont pas ete trouvees au
Congo mais en Afrique occidentale.
® Experiments carried out in several laboratories showed
° Les experiences pratiquees dans plusieurs laboratoires ont
that the process used to manufacture the vaccine could
not have permitted the experimental vaccine to be con
montre que la methode de fabrication utilisee n’aurait pas permis la contamination du vaccin experimental par le VIS ou le
taminated with SIV or HIV. Production of the experi
VIH. La production du vaccin experimental comportait un trai-
mental vaccine included treatment with trypsin (a
powerful proteolytic enzyme), freezing, thawing and fil
congelation, la decongelation et la filtration, chacune de ces
tement a la trypsine (enzyme proteolytique puissante), la
tration, each of which is known to destroy or remove SIV
or HIV.
etapes etant connue pour detruire ou supprimer le VIS ou le
* Early cases of AIDS in Zaire were detected in cities,
° Les premiers cas de SIDA deceles au Zaire Pont ete dans les
where sexual transmission was more likely and where
villes, oil la transmission sexuelle Etait plus probable et oil la
medical surveillance was better. The assertion that
surveillance medicale etait meilleure. L’affirmation selon la-
early AIDS cases occurred in close proximity to previ
quelle les premiers cas de SIDA se sont produits a proximite
ous vaccination sites using CHAT vaccine was also
d’anciens sites de vaccination oil le vaccin CHAT aurait ete
contradicted by the demonstration of crucial errors in
the information used to support the putative associa
utilise ont aussi ete contredits par la revelation d’erreurs cruciales dans 1’information utilisee pour soutenir Tassociation
tion.
VIH.
putative.
• Vaccination trials conducted in the United States and in
° Des essais de vaccination effectues aux Etats-Unis et en Europe
Europe with the same lots of CHAT vaccine cannot be
associated with the early occurrence of AIDS cases.
au moyen des memes lots de vaccin CHAT ne sauraient etre
associes ci 1’apparition des premiers cas de SIDA.
Conclusions
Conclusions
The new findings presented at the Royal Society meeting
Les nouvelles constatations presentees lors de la reunion de la
Royal Society correspondent aux donnees epidemiologiques,
are consistent with previous epidemiological, biological
and virological evidence, and strongly contradict the
hypothesis on the origin of AIDS put forward.
Rumours linking the use of vaccines to negative health
events, but especially to AIDS, can seriously damage im
munization programmes, since they undermine the ac
ceptance of all immunization efforts. This negative impact
is particularly unfortunate in Africa, where thousands of
children still die every year of vaccine-preventable dis
eases, and where progress in the control and eradication of
these diseases is most urgent It is important to differentiate
between the early, experimental CHAT vaccine and the
modern oral polio vaccine (OPV) used today.
Using OPV, the global campaign to eradicate polio has
biologiques et virologiques dont on disposait deja et qui dementissent formellement 1’hypothese sur 1’origine du SIDA qui a ete
avancee.
Les rumeurs reliant 1 utilisation de vaccins a des manifestations
indesirables, mais plus particulierement au SIDA, peuvent porter
un prejudice grave aux programmes de vaccination, car elles minent la confiance dans les efforts de vaccination dans leur ensem
ble. Cet impact negatif est particulierement regrettable en Afrique
oil des milliers d’enfants meurent encore chaque annEe de mala
dies evitables par la vaccination et oil les progres de la lutte contre
ces maladies et de leur Eradication sont les plus urgents. U est im
portant de faire la difference entre le vaccin experimental CHAT du
dEbut et le vaccin antipoliomyElitique buccal moderne utilise
aujourd’hui (VPO).
achieved a 95% decrease in the number of polio cases world
La campagne mondiale d’eradication de la poliomyelite au moyen
du VPO a permis de reduire de 95% les cas de poliomyelite dans le
wide since it was launched. Polio eradication is progressing
monde depuis son lancement. Les progres sur la voie de Eradica
well in Africa. However, achieving global polio eradication
tion sont satisfaisants en Afrique. Toutefois, Eradication mondiale
ddpendra en grande partie d’une intensification de la vaccination
will largely depend on further intensifying supplementary
OPV immunization to interrupt transmission of wild polio
suppUmentaire par le VPO afin d’interrompre la transmission du
virus in key areas of western and central Africa. ■
pohovrrus sauvage dans des zones des d’Afrique centrale et occirionfnla
Mtftf EWlMlOLOGIOUl HEBDOMADAIRE. N' 49,8 DtCEMBRE 2000
KI
407
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Vaccines at Durban: A Closer Look
Beyond the calls to action on behalf ofPWAs with no medical care and poor countries strug
gling to turn the tide on AIDS, Durban offered abundant information relevant to vaccines
by Patricia Kahn
Even before die 12,700 delegates at this summer’s Kill Interna
below). She also emphasized the importance of pushing multi
tional Conference on AIDS had left for home, the meeting was
ple vaccine approaches forward in parallel and of preparing trial
already being hailed as a landmark event in the history of the
sites so they are ready when the candidates arc.
epidemic. From the impassioned calls to bring treatment to
PWAs in poor countries to the outrage over South African Pres
ident Mbeki's espousal of AIDS “dissident" ideas, the meeting
created a momentum which - if it truly lasts - will mark a turn
ing point in the fight against AIDS.
The conference was also a landmark event for vaccine devel
opment, solidifying its place as a top priority in that battle, par
ticularly in poor regions. Unlike earlier meetings of the series,
XIII INTERNATIONAL
where vaccines were largely a
side issue, this year's event
offered a profusion of vaccinerelated sessions. With the dust
now settled on the remarkable
politics of Durban, the IAVI
Report looks at some of the
DURBAN • SOUTHAFRICA • J-H JULY 2000
notable vaccine science and
news presented there.
A vaccine by 2007?
In this succinctly-titled plenary talk on vaccine development,
Margaret Liu, former head of the HIV vaccine program at the
Chiron Corp, (and now vaccine advisor to the Gates Foundation)
outlined what she sees as the field's major achievements and
most promising ways forward. Key items on her list were:
• The demonstration of protection against SIV or SHIV in pri
mate models by several different types of experimental vac
cines, providing both proof of concept and systems for study
ing correlates of protection;
•
Detection of HIV-specific immune responses in a small minor
ity of people who seem resistant to either HIV infection
(exposed but seronegative people) or disease (long-term non-
progresssors). Such cases suggest that the immune system can
contain the virus and pointed researchers towards strategies
that target cellular immunity and mucosal responses;
• Illumination of viral structure, which is providing invaluable
information for more rational vaccine design, especially of
vaccines that might elicit neutralizing antibodies;
• Advances in vaccine technology and design concepts, such as
prime-boost approaches, new gene delivery vehicles and
adjuvants, vaccines directed to mucosal responses, and opti
mization of DNA vaccines.
Liu said that the question posed in the title of her talk could
not yet be answered, although she expressed confidence that
AIDS vaccines for Africa
One major session focused on efforts to make vaccines targeted
specifically to African needs and on vaccine work within Africa.
Immunologist Malcgapuru William Makgoba, who heads
South Africa’s Medical Research Council, led with an overview
of his country’s HIV vaccine program, which has received
strong government backing dispite President Mbeki's question
ing that HIV causes AIDS. The program is coordinated by the
South African AIDS Vaccine Initiative (SAAVI), whose goal is the
development of an affordable, subtype C-based vaccine owned,
by the public sector. SAAVI’s scientific activities range from
developing candidate vaccines (4 different approaches are now
in the works) to immunological evaluation of vaccines and help
ing to prepare clinical trial sites. South Africa will also partici
pate in testing candidates developed with international partners.
The first one likely to enter clinical trials in the country is based
on the Venezuelan equine encephalitis virus (VEE) vector made
by AlphaVax, a North Carolina-based company, and funded by
IAVI. Also under consideration are DNA vaccines from the
Chiron Corporation and a vaccine from Targeted Genetics based
on adeno-associated virus (AAV).
Carolyn Williamson of the University of Cape Town described
how her lab derived subtype C sequences representative of south
ern African strains to use in the VEE vaccine. The researchers
began by collecting samples from 14 commercial sex workers
who were recent seroconverters and isolating virus from 10 of
them. After confirming that these isolates infect cells via the
CCR5 receptor, they sequenced 800 base pair regions from the
gag, pol and env genes and compared them to over 70 known
sequences from southern African subtype C strains, including
some isolates from infected but asymptomatic individuals. In
this way they arrived at 2 consensus sequences, which became
the basis for this vaccine.
With Kenya now poised to launch Africa's second AIDS vac
cine trial (see article, p.l), clinical investigator Dorothy Nbori-
Ngacha of the University of Nairobi described the ongoing
preparations. Efforts are now focused on finalizing die planning
and oversight committees, such as the data safety and monitor
ing board, clinical steering committee and community advisory
board, and getting the remaining scientific and ethical
approvals. [Since the Durban conference, work is also focusing
on patent and intellectual property issues; see www.iavi.org.}
Rounding out the session, Peter Mugyenyi, clinical director
good candidates will be in advanced trials by 2007. But getting
for Africa’s first AIDS vaccine trial, described Uganda's long
an effective vaccine on this timescale will take both a greatly
journey from the time of its early interest in AIDS vaccine
increased effort and a commitment to be guided by scientific
development to the recently-completed trial at the Joint
data and “rational empiricism" rather than by biases, which she
Clinical Research Center (JCRC) in Kampala (see below).
said can creep into issues such as the debate on subtypes (see
Wayne Koff, who heads lAVI’s R & D program, gave an update
continued on page 6
VACCINES AT DURBAN
continued from page 5
on IAVI-supported projects to develop AIDS vaccines geared to
circulating African strains (see IAVI Report, Jan-Mar. 2000, p.5).
The Nairobi Declaration: An African Strategy
At a press conference following the above session, several
African scientists, along with Jose Esparza of the WHO/UNAIDS
HIV Vaccine Initiative, presented “The Nairobi Declaration: An
increased from 51% to 62% with casual partners and from 8% to
12% with steady partners. Since such changes will lower HIV
seroincidence, Vanichseni was asked whether the trial retains
sufficient statistical power (it is designed to detect 30% vaccine
efficacy). She responded that the study is powered for a reduc
tion in seroincidence from 6% to 4% and that the cohort is still
African Appeal for an HIV Vaccine." They also unveiled the
within that range, according to the Data Safety and Monitoring
broad outline of a strategy to move the vaccine agenda forward
Board that is closely following the trial data.
within Africa and to achieve greater coordination across the
Clayton Harro of Johns Hopkins University (Baltimore)
continent. Signed by 38 African scientists, community advocates
reviewed the North America/Amsterdam trial, which is spread
and policy makers, the statement came after a process that
over more than 60 sites and is fully enrolled. Its 5414 volunteers
solicited the views of African researchers and then formulated a
are mostly men who have sex with men (MSM), along with 311
set of principles and proposals, which were adopted at a 14
high-risk women. Annual seroincidence in the cohort is approxi
June meeting in Nairobi under the auspices of WHO/UNAIDS,
mately 1.5%, and retention as of January 2000 was over 98%.
AfriCASO (an umbrella for African AIDS service organizations),
John Jermano of VaxGen presented data on the social impact
the Southern African Development Community (SADQ and the
of participation in the North America/Amstcrdam trial, based on
Society on AIDS in Africa (SAA).
information reported by volunteers as of June 2000. The most
The strategy outlines 5 areas for activity: advocacy and educa
frequent negative effects so far (reported by 7.5% of the partici
tion; coordination; promotion of promising candidate vaccines;
pants at 6 months) are disturbances in relationships with family
building capacity to conduct trials; and ensuring access. It also
or friends, usually stemming from negative comments about par
lays out specific milestones, including the development of candi
ticipation or misperceptions that the volunteer is infected. Few
date vaccines based on African subtypes by 2002; completion of
volunteers (<1%) said they had experienced discrimination in
at least 4 Phase I/H trials by 2003; and initiation of at least one
employment or insurance due to their participation. Sexual risk
Phase IU trial by 2005. South Africa’s Makgoba described the ini
behavior also decreased, with the median number of male part
tiative as a way for African scientists to “speak with one voice
ners reported by MSM during the past 6 months dropping from
[and to] be responsible for our own future." Makgoba will help
5.0 (for the period prior to entering the trial) to 4.0 (during the
coordinate the effort, which is now working to turn the strategy
first 6 months in the trial).
into a specific action plan and to raise political support and
funds for its activities.
New adjuvant boosts gpl20 immunogenicity
Jorge Flores (NTH, Bethesda) presented a potentially important
Vaccine Trials: Tracking the VaxGen trial cohorts
finding concerning the adjuvant QS21, a saponin made from the
VaxGen’s first two HIV vaccine efficacy trials are now in full
soapbark tree and already used in veterinary vaccines. Reporting
swing and have a combined enrollment of nearly 8000 volun
on a study by the NTH HIV trials network (study AVEGO36)
teers. Several speakers presented data on the experiences and
involving 60 volunteers, Flores said that 0.5 ?g of VaxGen's biva
self-reported risk behaviors of these trial cohorts, with an appar
lent gpl20 vaccine (subtypes B/E) prepared in QS21 gave the
ent downward trend in risk behavior.
Kachit Choopanya of the Bangkok Metropolitan Administration
same immune response as 300 ?g in alum, the current adjuvant.
This 600-fold reduction in the amount of antigen per dose would
gave an update on the VaxGen trial in Thailand. Participants
greatly cut the cost of the vaccine and make it far more economi
were recruited among intravenous drug users at 17 methadone
cally feasible to produce polyvalent vaccines (containing gpl20
clinics in Bangkok. [On 31 August, VaxGen announced that
subunits from multiple subtypes or strains, including break
enrollment of 2500 volunteers was complete.] The cohort is
through viruses). The trial also showed that a new formulation
about 93% male and has an annual HIV seroincidence estimated
of QS21 reduced, but did not eliminate, the problem of relative
at 6%, based on studies of a similar population over the years
ly severe local reactions. According to study chair Tom Evans of
1995-1999- Two-thirds of the volunteers will receive 7 doses of
vaccine (made of recombinant gpl20 subunit from two different
HIV subtypes) over 24 months, while the rest will be given
the University of Rochester, a new trial is in planning to test
whether reducing the amount of QS21 will reduce its reactogenicity but not its immune-enhancing effect.
placebo. Choopanya also reported that retention in the trial is
over 95% and that the vaccine is well-tolerated and immunogenic
in all participants.
Another trial investigator, Suphak Vanichseni of the Bangkok
Clinical studies on canarypox vaccines
In a late-breaker session, H. Cao of the Massachusetts General
Hospital (Charlestown) presented results from a Phase I study of
Vaccine Evaluation Group, presented interesting findings on
the ALVAC vCP205 canarypox HIV vaccine, conducted at the
trends in risk behaviors. Based on data from the 1174 volunteers
JCRC in Kampala and supported by the U.S. NIAID. The vaccine
who had reached their 6-month follow-up, she reported that the
contains the gag and pol genes from HIV-1 subtype B. Several
frequencies of nearly all risk behaviors (except recent incarcera
Phase I and
tion) had dropped - some dramatically so - since the trial began:
the proportion of volunteers injecting drugs decreased from
72% to 57%; needle sharing fell from 32 to 13% and condom use
trials in the U.S.A, and France found it to be safe
and to induce CTLs in a minority of volunteers. The Ugandan
study enrolled 40 volunteers (20 immunized 4 times over 6
months with the test vaccine, 10 with rabies vaccine and 10
continued on page 18
DURBAN VACCINES
continued from page 6
with placebo) and analyzed CTL responses against the vaccine
strain - a stark contrast to all non-IDU transmission chains that
antigens and against Gag and Pol from two non-matching sub
have been followed, including blood-borne chains such as the
types, A and D.
Florida dentist group or the Sydney blood transfusion cohort.
Cao reported that immunogenicity was similar to earlier tri
als, with 4/20 of the volunteers positive for C i ts at some point
Addressing the implications of these findings for vaccine
development, McCutchan said that comprehensive data on the
during the study. In the 4 positive individuals, CTLs were no
pool of circulating strains is crucial for designing vaccines based
longer detectable 100 days after the last vaccination. CTLs in 2
on local strains, especially in regions with multiple subtypes.
of the 4 responders recognized subtypes A and/or D antigens (at
Without it, there is a danger of basing designs on a unique
about 80% of the level seen against B). Results were confirmed
recombinant isolate rather than an important circulating strain.
with the ELISPOT assay.
But the central issue for vaccines remains just how much the
Luwy Muscy from the University of Washington (Seattle) pre
diversity of HIV sequences affects immune recognition of the
sented data showing that the ALVAC vCP2O5 vaccine can also
encoded proteins, and consequently, whether vaccines based on
induce mucosal responses. Although mucosal immunity is wide-
one strain will protect against others.
ly viewed as potentially important for protection, it has not been
monitored so far in HIV vaccine trials. Musey analyzed immune
responses in 12 participants of a Phase II study (AVEG202/
HIV NETO 14), 6 of whom had CTLs in the blood at some earlier
point in the trial. Seven of these volunteers received vaccine and
5 received placebo. HIV-specific mucosal responses (measured
by CTL in rectal tissue) were seen in 4/7 vaccinated people,
with 2 of the 7 showing both blood and mucosal CTLs; 3/7 had
CTLs only in the blood. Mucosal response was not affected by a
gp 120 boost. Results were con
Should vaccines always match local strains?
Focusing on this uncertainty, an interesting debate session fea
tured two speakers presenting opposing views on whether vac
cines tested in the developing world should always be based on
an important subtype in the host country.
Rosemary Musonda of the Tropical Diseases Research Center
(Ndola, Zambia) made the case against requiring a match. There
is ample evidence that vaccines based on one subtype can elicit
immunity against other subtypes, she said, especially in terms of
cellular immune responses. With
firmed with the ELISPOT assay.
the need for a vaccine so urgent,
HIV Diversity
unnecessary restrictions on trials
In two talks, including a plenary
should be avoided. And it is only
lecture, Francine McCutchan of
the Henry M. Jackson Foundation
(Rockville, Maryland) reviewed
the current state of knowledge
about HIV variation and the chal
If a “matched" vaccine is found to
be effective in a Phase III trial,
will countries with other subtypes
have to repeat the trial?
by testing such “mismatches' that
the true relevance of subtype to
vaccine efficacy can be clearly
determined.
Arguing the other side,
lenge that continuous, rapid evo
Carolyn Williamson of the
lution of the HIV genome poses
University of Cape Town stated
for vaccine development.
that neutralizing antisera from
McCutchan pointed out that
HIV-infected people appear to
new molecular data are changing the view of how this diversity
work better against virus of the same subtype than against
arises. While previously attributed mostly to HIV's high muta-
unmatched subtypes. Such data suggest that matching will maxi-
tion rate, it is now emerging (from analysis of the many new full-
mize the chances of success for a candidate vaccine. It may also
length genome sequences becoming available) that recombina
contribute to community acceptance of vaccine trials, since it
tion also plays a major role. Moreover, the likelihood of inter
sends a message that the test vaccines are genuinely geared to
subtype recombination is rising as subtypes continue to spread
local needs.
worldwide and more regions have multiple subtypes in circula
During the discussion, audience members raised some key
tion. (For example, non-B subtypes are increasingly seen in west
questions. If a matched vaccine proves to be effective in a Phase
ern countries, while 4 or more subtypes are common in parts of
in trial, what’s next? Will countries with other subtypes in circu
western Africa).
lation have to repeat the trial? And what if new subtypes or
Based on analysis of 145 full-length sequences, 65 of them pre
viously unreported, McCutchan described some important pat
recombinants enter the region, or vaccinated people move to
areas where different subtypes predominate? Matched trials will
terns. Many recombinants seem to be unique to one person, and
not test whether there is protection under these circumstances.
some show an unexpectedly high complexity (e.g., an AFGJK
Session moderator Peggy Johnston of the U.S. N1AID made the
recombinant). Other recombinants have entered the circulation in
crucial point that even if a vaccinee responds less strongly to an
certain regions and are as common as some local subtypes; for
unmatched HIV subtype, this weaker response might still be
instance, 56% of the circulating HIV in Cameroon is a circulating
enough to protect. Vaccinologist Don Burke of Johns Hopkins .
recombinant form (CRF) called CRF02.AG. Other examples include
University (Baltimore) responded that a similar dilemma facing
the AE strain in southeast Asia, a BC recombinant in China and an
developers of a vaccine against Japanese encephalitis virus was
AB form in Russia's IDU population. In the latter group, where
addressed by a Phase in trial with three arms: matched vaccine,
infection rates are skyrocketing, McCutchan noted the highly puz
unmatched and placebo. It is likely that HIV vaccine trials will
zling fact that there is little genetic diversification of the transmitted
ultimately require a similarly systematic approach.
Immune correlates
Clinical studies of people exposed to HIV but seronegative (ESN), which have
been done mostly in commercial sex workers, have pointed to key role for cellu
lar immunity in this apparent protection. Lawai Garba of the University of North
Carolina (Chapel Hill) presented new ESN data from a collaborative study of dis
Editor
Patricia Kahn
cordant couples in Zambia. Looking at 37 ESN individuals (all married or in
steady partnerships with infected people for at least 3 years), the researchers
found HIV-specific CTL in 9 of them. Intriguingly, the presence of CTL was cor
related with high viral load in the infected partner, suggesting that total antigen
dose may be an important aspect of stimulating CTLs.
Y.-M. Chen (Taipei) reported an observation which could imply the pres
Founding Editor
David Gold
Reviewers
Michael Cowing, Peggy Johnston, Alan
Schultz, Wayne Koff
ence of enhancing antibodies to Tat in some HIV-positive people. (For a dis
cussion of enhancing antibodies, see A4V7 Report, April-June 2000, p.5). The
researchers looked at transmission to the wives of 52 HIV-positive men drawn
from blood bank donors who became infected primarily through contact
with commercial sex workers. Among 52 men, 1 of 17 infected with subtype
Writers
Vicki Burkitt, Bob Huff, Richard Jefferys
Design Advisor
Robert Fiedler
B, 14 of 33 with subtype E and 2 of 2 with subtype C transmitted virus to
their wives. The transmitters had a higher level of anti Tat antibody than non
transmitters (65% vs 26%), as determined by ELISA tests. The odds ratio of
men infected with subtype E transmitting to their wives if they also had anti
Tat antibodies was extremely high (OR=18). The researchers are now analyz
ing whether anti Tat antibodies might selectively enhance infectivity of differ
Copy Editor
Michael Hariton
Art Design
Jean Rothstein
Type Impressions
ent HIV subtypes. All current Tat vaccines have used subtype B tat genes,
and enhancement of transmission has not been previously reported, o
OXFORD TRIALS
continued from page I
Founding Managing Editor
Denise Gray-Felder
The IAVI Report is published bimonthly by die
International AIDS Vaccine Initiative. To obtain
became the first person to be injected with the vaccine. Pending approvals
a subscription to IAVI Report, send name and
from the appropriate Kenyan authorities, it is hoped that the DNA vaccine
address, by e-mail to: iavi report@iavi.org; by
will enter human trials in Nairobi early in 2001.
fax to: 1-212-847-1112; by mad: IAVI, 110
The vaccine candidates are being moved into clinical studies by the
William Street, 27th floor, New York, NY
research teams of Andrew McMichael at Oxford University and J J. Bwayo at
10038, USA.
the University of Nairobi. Both vaccines are designed to generate HIV-specif
Copyright © 2000. All rights reserved.
ic cellular immune responses, which researchers increasingly believe can
LAVI is a scientific organization founded in 1996
provide some protection against HIV infection or disease progression.
whose mission is to ensure the development of
Koff made the announcement of the MVA vaccine approval in Bonn,
safe, effective, accessible, preventive HIV vac
Germany, noting that “two lAVI-sponsored vaccine candidates have now
cines for use throughout the world. IAVI focuses
moved from concept to clinic in less than two years, near record time for
on three key areas: accelerating scientific
these type of products.’ He added that the HIV MVA vaccine is the first of its
progress; education and advocacy and creating a
kind to be approved for human testing. ♦
more supportive environment for industrial
involvement in HIV vaccine development.
IAVI is a UNAIDS Collaborating Centre. Its sup
porters include the Rockefeller, Alfred P. Sloan,
NEW VACCINE STUDY
continued from page 4
Starr, Bill and Melinda Gates, Until There’s A
vaccine as an immune therapy, both in SIV-infected monkeys and HIV-infected
as well as the U.K., Dutch, Canadian, Irish and
individuals. Letvin himself supports the idea of such studies, but says he may be
U.S. governments, the World Bank, UNAIDS, the
unable to do so himself. Yet there is clearly interest from the outside in seeing
National AIDS Trust and Fondation Marcel
the therapeutic approach pursued: Greg Gonsalves of the New York-based
Merieux. IAVI has also received support from
Treatment Action Group has already written to Letvin to request that the vac
Crusaid, the Elton John AIDS Foundation, Levi
cine approach be moved quickly into therapeutic trials.
Strauss International, and other generous corpo
On the whole, there is no question that Harvard study will have an impact
Cure and Vincent P. Belotstky, Jr. Foundations,
rate and individual donors around the world.
on AIDS vaccine development. It also begins to show how the newer, more pre
cise methods of quantifying T-cell responses will assist researchers in evaluating
candidate HIV vaccines. These tests - known as tetramer binding and ELISPOT
assays - will hopefully enable researchers to evaluate and compare a new gener
ation of more potent vaccines, including cytokine-augmented HIV DNA vac
cines in human studies.
“The study represents a major advance toward making a vaccine that really
works," says Neal Nathanson, the former director of the U.S. NIH’s Office of
AIDS Research. And, he predicts, “it will help energize the whole field." ♦
Wavi
International AIDS
Vaccine Initiative
10
MATERIAL ON HIV/AIDS
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SALVATORSTR. 22
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June 2001
BOOK REVIEW
catholic ethicists on hiv/aids prevention
Edited by J.F. keenan, with J.D. Fuller. L.S. Cahill, and K. Kelly. .The Continuum International
Publishing Group Ltd. 2000. ISBN 0-8264-1230-0, 351 pages, S24.95.
There is little doubt that the problem of HIV/AIDS is presently the worst human scourtie.
and no part of the globe is immune. In recent times, in the developing world, there are frequent
claims by both orthodox and non-orthodox medical practitioners to having acquired masical cure
for .AIDS, but we all know that these claims are almost baseless. We all realise that at present,
major efforts should be directed at prevention, and while aiming at this, the afflicted should be
treated with compassion and not as social outcasts. The catholic church has played major roles
in prevention and cure of very many diseases in the past and are currently playing very vital roles
in the control of HIV/AIDS pandemic. However, day to day catholic teachings see some aspects
of the preventive measures eg. the use of condom, as encouraging contraception and
promiscuity; and the introduction of needle exchange programme, as encouraging drug
addiction. In this exciting book, catholic moral theologians and others, argue that these measures
do not run counter to catholic moral teachings.
The editors are to be congratulated on gathering together many acknowledged international
moral theologians to write on this topic. The first part of the book presents cases from different
pans of the world highlighting the pe|-culiarities in HIV prevention in each locality and the ability
of the catholic moral theological tradition to address HIV prevention; while the second part
addresses the fundamental moral issues that theologians recognise in HIV prevention globally.
In tire first part, five main themes were recognised among the cases presented: (1) Inadequate
power of women in the face of HIV/AIDS pandemic (2) Religious scrupulosity still inhibits
ineffective prevention work (3) The intergrity of the traditional religious practices that existed
before Christianity, still exist today and need to be respected (4) Homosexuals and lesbians have
not been accepted into the mainstream society and .AIDS control among them is therefore
difficult (5) Children are helpless and very vulnerable.
The second part discusses magisterial teachings about moral theology and medical eth’cs;
demonstrates that the central themes of the catholic social ethics tradition urgently need to be
applied to HIV/AIDS prevention; and argues that casuistry is a way that individuals and
communities negotiate their ethical beliefs when faced with moral issues.
This book made good efforts to cover different parts of the globe, however, there are
repetitions in tire moral interpretation of the different essays in the first part. On the other hand,
there are occasional contradictions in the interpretation of the catholic moral teachings by
different authors. These, the editors had noted and had advised that each essay should be seen as
the singular contribution of each author and not necessarily of th‘e editors.
This book covers very well what the editors had originally intended and in this age of
HID/AIDS pandemic, it should be a required reading by all and especially those catholics who
feel that some aspects of the publicised methods of HIV/AIDS prevention run counter to their
religious beliefs. Catholics intermarry with non-catholics, and HIV/AIDS knows no religious
barrier. This book is generally easily readable and factual. It is informative and the main message
is clear, though the theological aspects may be slightly difficult to be fully understood by lay
neople. The references cited were appropriate for the text in most instances. The binding is quite
attractive and in the developed world, it is worth the price, though in the third world where the
values of the local currencies have been bastardised, the price seems to be on the high side tor
the low income earners.
The contributors have put human faces to the topic of HTV7AEDS prevention, and the
editors have also presented this book as an invitation to engage moral theologians and their
students on the ethics and moral theology of HIV/AIDS prevention. This book is very highly
recommended.
Aloy n. Aghaji FRCS
Editor-in-Chief,
Journal of College of Medicine,
University of Nigeria Teaching Hospital,
Enugu, Nigeria.
11
MATERIAL ON HIV/AIDS
SENT BY
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SALVATORSTR. 22
D-97074 WURZBURG
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June 2001
MOTHER-TO-CHILD TRANSMISSION OF HIV
An overview of current knowledge and implications for policy
with a special focus on safe infant feeding
Joost Hoppenbrouwer
Coordinator HIV/AIDS
Netherlands Network of Sexual & Reproductive Health and AIDS
j.hoppenbrouwer@kit.nl
February 2001
Acknowledgements
Special thanks go to the following persons for their support in preparing this report:
•
Gecrt Havcrkamp, IATEC - Amsterdam, The Netherlands
•
Lida Lhotska, UNICEF HQ - New York, USA
•
Rachel Baggaley - London, UK
•
Arjan van de Wagt, UNICEF ESARO - Nairobi, Kenya
•
Elizabeth Preble, SARA Project/USAID - Washington, USA
•
Maaike Arts, UNICEF - Tegucigalpa, Honduras
•
Tim Farley, UNAIDS - Geneva, Switzerland
2
CONTENTS
Executive summary
4
0.
Introduction
5
1.
Overview of the main facts
6
1.1
1.2
Mechanisms of mother-to-child transmission
Prevention of mother-to-child transmission
6
8
2.
Experiences with implementation of MTCT prevention
19
2.1
2.2
UNICEF MTCT prevention pilot projects
Critical remarks
19
19
3.
Current IATT guidelines for MTCT prevention
22
3.1
3.2
Short-course antiretroviral prophylaxis
Support for safe infant feeding
22
22
4.
Discussion and policy implications
24
4.1
4.3
4.3.1
4.3.2
4.3.3
Preventing mother-to-child transmission of HIV:
knowledge and gaps
24
Towards implementation of prevention programmes:
Guidelines and guiding principles
25
Key programme components
26
Counselling services for HIV testing (VCT) and safe infant feeding 26
Antiretroviral prophylaxis
27
Safe infant feeding
29
5.
Conclusions
33
References
34
List of abbreviations used
37
4.2
3
EXECUTIVE SUMMARY
Vertical transmission of HIV from mother to child constitutes a considerable percentage
(10%) of overall new HIV infections worldwide. Mother-to-child transmission of HIV
(MTCT) can take place during pregnancy or delivery, or through breastfeeding.
Short-course antiretroviral (ARV) prophylaxis has proven quite effective at preventing
MTCT, while decreasing cost, especially of nevirapine, has made it increasingly affordable in
resource-poor settings. However, ARV prophylaxis is only one element of a comprehensive
package for MTCT prevention. Other key elements include comprehensive antenatal
services, voluntary counselling and testing, optimal obstetric practices and support for safe
infant feeding.
Since the positive effect of perinatal ARV prophylaxis can be undone by MTCT through
breastfeeding, safe infant feeding is a major issue for MTCT prevention. However, a
balanced breastfeeding policy docs not only focus on minimising MTCT, but carefully
weighs the multiple benefits of breastfeeding for the vast majority of infants - born both to
HIV-positive and HIV-negative mothers - against the risks of MTCT through breastfeeding.
Given the current lack of conclusive knowledge about the relative risks of exclusive
breastfeeding, mixed feeding or replacement feeding, it is difficult to provide clear-cut
guidelines for safe infant feeding. For the majority of HIV-infected women in resource-poor
settings for whom replacement feeding is not acceptable, feasible, affordable, sustainable and
safe, exclusive breastfeeding during the first months of life is recommended, followed by a
rapid shift to alternative safe infant feeding with formula or household-based options.
Existing UN guidelines on HIV and infant feeding arc still the best, while implementation of
the International Code of Marketing Breast-milk Substitutes continues to be crucial to avoid a
“spill-over” effect of non-breastfeeding recommendations to non-infected mothers.
Voluntary counselling and testing (VCT) and counselling on safe infant feeding are key
elements for successful MTCT prevention, as counselling allows women to make informed
decisions - with the support of health staff and counsellors - on MTCT prevention in their
personal situation. Therefore, increased access to high-quality counselling services is a key
priority.
More basic research on the exact mechanisms of MTCT and the relative risk of various infant
feeding options, as well as into the efficacy and feasibility of MTCT prevention interventions
in “real-life” conditions in resource-poor countries, is a key priority to be able to provide
clear and practical guidelines for MTCT prevention.
MTCT prevention should not just focus on transmission of HIV from an already infected
mother to her child, but also include prevention of unwanted pregnancies in HIV-infected
women, and primary prevention of HIV infection in men and women of reproductive age. It
has become clear that the involvement of men in all these aspects of MTCT is crucial. In this
context, preventing parent-to-child, rather than just mother-to-child transmission, should be
the key focus.
4
0.
INTRODUCTION
The HIV/AIDS pandemic has not only reached enormous proportions in Sub-Saharan Africa,
but is also spreading at a high rate in parts of Asia, Eastern and Central Europe, Latin
America and the Caribbean.
By the year 2000, almost 35 million people were living with HIV/AIDS worldwide. An
estimated 5.4 million new HIV infections took place in 1999, one-tenth of which was due to
transmission from mother to child (MTCT).
Therefore, prevention of MTCT is a key priority in overall strategies to reduce new HIV
infections and the impact of HIV/AIDS on children, parents and society as a whole.
In the past years, research has provided in-depth knowledge of the mechanisms of MTCT, as
well as ways to prevent it. However, serious knowledge gaps regarding MTCT require more
basic research as well as close monitoring and evaluation of MTCT field interventions.
This report provides an overview of current knowledge and experiences with MTCT
prevention and their policy implications. Clear guidelines arc still difficult to provide: actual
decisions on MTCT prevention need to be made by mothers, with active support from public
health staff, taking into account the local context and personal situation of people involved.
5
1.
OVERVIEW OF THE MAIN FACTS
Women of childbearing age constitute nearly half of the 33 million adults currently living
with HIV/AIDS worldwide (UNAIDS, 2000). Mother-to-child transmission (MTCT) of HIV
is the most significant source of HIV infection in children below the age of 10 years. It is
responsible for about 10% of the total number of new HIV infections, with about 1600 cases
of MTCT per day, or some 570,000 per year (2000), most in developing countries.
1.1
Mechanisms of mother-to-child transmission
Mother-to-child transmission can take place:
1. during pregnancy (in utero)
2. during labour and delivery (intrapartum)
3. after delivery (postpartum), through breastfeeding
Most infected infants acquire HIV around delivery or through breastfeeding, while in utero
infection is a less important mechanism. Without external interventions, HIV infection occurs
in some 20-45% of children bom to HIV-positive women. Not-breastfeeding reduces this rate
to 15-25%.
In utero transmission
Transmission during pregnancy (in utero) is related to a number of factors such as the
mother’s immunological status (high plasma viral load, low CD4 count) and stage of HIV
disease, type of HIV and the mother’s general health and nutritional condition. In particular
advanced HIV disease of the mother and the associated higher viral load is associated with an
increased risk of in utero transmission, which in turn, can lead to an increased rate of disease
progression in the infant.
Intrapartum transmission
HIV transmission during labour and delivery (intrapartum) is a major mechanism of vertical
transmission, accounting for some 60-85% of MTCT. The skin and mucous membranes of a
new-born child are ineffective barriers against infective organisms such as HIV. Thus, high
maternal viral load, prolonged or traumatic delivery, presence of sexually transmitted
diseases (especially in the presence of ulcers) or premature ruptured membranes increase the
risk of HIV transmission, due to longer or more intensive exposure of the child to HIV
infected secretions in the birth canal.
Transmission through breastfeeding
A third way of MTCT is through breastfeeding. The additional risk of transmission from
breast milk is estimated to be about 15%; this also depends on duration of breastfeeding. The
exact mechanisms of transmission are not yet fully understood. HIV is present in cells and in
cell-free components of breastmilk of infected mothers. MTCT through breastfeeding may
occur if the consumed virus enters the infant’s intestinal mucosa through a damaged
epithelial layer (e.g. due to food antigens and pathogens); through small defects in the
6
junctions between, epithelial cells resulting from nutritional deficiencies; or with other
pathogens (Van de Perre, 1999a). Other, yet undefined mechanisms are also possible.
Factors associated with an increased risk of MTCT through breastfeeding include (UNICEF
ct al, 1998c):
- maternal viral load, virus type and other viral characteristics;
- maternal immune status;
- breastfeeding duration;
- type of breastfeeding practised;
- presence of breast abscesses, mastitis, cracked nipples; and
- damage to the infant’s mucous membranes, such as oral lesions
Maternal viral load and virus type
Recent infection of the mother, during pregnancy or the breastfeeding period, is associated
with a higher viral load, which may increase the risk of HIV transmission through breast
milk.
In contrast with HIV-2, which is rarely transmitted from mother to child (Adjorlolo-Johnson
et al, 1994), HIV-1 is transmitted far more frequently (13-48%)(Van de Perre, 1999a).
Breastfeeding duration
In many countries, breastfeeding is most frequent during the first six months of life; after that
it declines slightly. While a majority of women will breastfeed for at least one year, a
considerable number continues up to two years; any deviant pattern is suspicious to the
community, and may be associated with AIDS.
A study in Malawi (Miotti et al, 1999) found that risk of MTCT through breastfeeding
decreases with infant age. Infants uninfected at birth were followed over 18 months: in the
first five months, incidence of new HIV infections was 0.7% per month; from 6-11 months
incidence was 0.6% per month, and 0.3% from 12-17 months.
However, the net effect of breastfeeding duration on HIV infection is difficult to assess
due to selective attrition: women who breastfeed for a longer period are relatively healthy
(lower viral load, less transmission) (Haverkamp, 2001), so the effect of duration of
breastfeeding may be underestimated.
Type of breastfeeding practised
Exclusive breastfeeding refers to breastfeeding without supplementary feeds such as water,
other liquids, or semi-solid foods. In general, exclusive breastfeeding is recommended for the
first six months of life; it reduces the risks of infant mortality from diarrhoea and respiratory
infections (Victora et al, 1987; 1989), and it also protects against other diseases, such as
neonatal sepsis, acute otitis media and necrotising enterocolitis (Piwoz, 2000).
Two studies.have suggested that mixed infant feeding (breastmilk plus other liquids or
semi-solid foods) is associated with a higher risk of MTCT than exclusive breastfeeding
(Tess, 1998). A study in Durban, South Africa (Coutsoudis et al, 1999a), showed that infants
of HIV-positive mothers who were exclusively breastfed for at least three months, had a
significantly lower HIV transmission risk by three months (14.6%) than those who also
received other fluids or foods in early infancy (“mixed-breastfeeding”; 24.1%): a 48%
reduction in transmission risk, after adjusting for confounding variables. The MTCT rate for
exclusively breastfed and never breastfed infants was similar through the first six months
(about 20%).
The rationale behind these differences is that mixed feeding may lead to gastrointestinal
infections and inflammation in the infant. Cow’s milk, allergic reactions to complementary
foods and infectious illness such as oral thrush can all result in intestinal damage, increasing
the gastrointestinal mucosa’s vulnerability to HIV-1.
7
These findings suggest that exclusive breastfeeding followed by early and abrupt weaning
may be one option for reducing MTCT through breastfeeding, while minimising the adverse
consequences of replacement feeding, particularly in Africa. Further studies are underway to
confirm this hypothesis.
Breast pathology
Poor breastfeeding techniques, especially poor attachment of the infant to the breast, may
result in fissured nipples, increasing the risk of MTCT.
Mastitis is a local inflammation of the breast, which affects up to one-third of
breastfeeding women, usually during the first two months after delivery. Mastitis has
nutritional risk factors. Studies suggest that deficiencies of vitamin E and selenium, two anti
oxidants, may increase risk of mastitis (Filteau et al, 1999).
HIV infection itself does not appear to be a risk factor for mastitis, but HIV-positive
women with mastitis have higher HIV plasma levels; lower CD4 cell counts; higher viral
loads detected in their breastmilk; and increased rates of MTCT at 6 weeks and 12 months of
age than HIV-infected women without mastitis (Semba et al, 1999a).
1.2
Prevention of mother-to-child transmission
The UN recommends the following strategies to prevent MTCT of HIV (WHO/IATT, 2001):
a. Primary prevention of HIV infection among future parents to be;
b. Prevention of unwanted pregnancies in HIV-infected women; and
c. Prevention of HIV transmission from HIV-infected women to their infants.
Primary prevention of HIV infection among future parents and prevention of
unwanted pregnancies in HIV-infected women
A comprehensive approach to MTCT prevention will not only target HIV infection in the
infant, but will also address HIV prevention in mother and father. Ultimately, primary
prevention of HIV infection in men and women of reproductive age is of course the best way
to prevent transmission of HIV from mother to child. In many countries, women get infected
with HIV by their husband: being faithfulness to their partner is often the highest risk factor
for HIV infection.
At the same time, in 25% of the cases where a person tests positive for HIV, his/her sexual
partner is still seronegative. Voluntary counselling and testing (VCT) is a major intervention
for primary HIV prevention among this high percentage of serodiscordant couples.
VCT should also be an integral part of family planning services to ensure that women and
men can make informed choices about their fertility: where one or both partners arc HIVinfected, they should be counselled in order to be able to make informed decisions about
future pregnancies. Prevention of unwanted pregnancies in HIV-positive women is an
important strategy to reduce MTCT.
In all these cases, access to family planning and counselling services is crucial. Therefore,
it is important to ensure youth-friendliness of these services, and promote active involvement
of men.
Prevention of HIV transmission from HIV-infected women to their infants
8
While the best ways to prevent HIV infection in infants remain primary prevention of HIV
infection and reduction of unwanted pregnancies among women who are infected with HIV,
many HIV-infected women become pregnant. A number of interventions can support
prevention of HIV transmission from HIV-infected women to their infants. These include
(Preble & Piwoz, 2001):
a. Comprehensive antenatal services
b. Voluntary counselling and testing
c. Optimal obstetric practices
d. (Short-course) antiretroviral prophylaxis
e. Support for safe infant feeding
f. Nutritional supplementation
a.
Comprehensive antenatal services
In this context, the IATT recommends that: “HIV-infected women should have access to
information, follow-up clinical care and support, including family planning services and
nutritional support. Family planning services are particularly important for HIV-infected
women who are not breastfeeding.”
b.
Voluntary counselling and testing (VCT)
A basic aspect of MTCT prevention is informing pregnant women and their partners about
H1V/AIDS and the possibility of MTCT. Information and education are necessary conditions
for people to be able to prevent getting infected themselves and passing it on to their
children.
Voluntary counselling and testing (VCT) has become an integral part of HIV prevention
and care programmes in many countries. Services have diversified in accordance with
developments in care and treatment and the importance of VCT for HIV prevention. VCT is
the entry point for medical, psychosocial, legal and sometimes material care and support for
all those in need, as shown by the diagram on the next page (WHO, 1999).
Multiple benefits of VCT for pregnant women
VCT allows early access to prevention and care for mothers who know their serostatus:
knowing and accepting one’s HIV status is a prerequisite to benefit from these interventions
and other advantages of VCT. Currently, most women attending antenatal care in areas of
high HIV seroprevalence do not know their serostatus and have no access to voluntary
counselling and testing. Therefore, improving access to VCT is a key priority, especially in
areas where MTCT interventions arc planned.
The increasing feasibility of ARV prophylaxis for MTCT prevention in resource-poor
settings has also increased the need for VCT. Where this ARV prophylaxis is being offered,
adherence to the complex procedures requires detailed explanations, monitoring and follow-up.
Health workers will also have to explain that the ARV intervention is not always successful. In
these cases, mothers and infants will still need continuing medical care, and social and
emotional support. Given the strong variance in local availability and access to MTCT
prevention services, personalised counselling is crucial to help women and their partners
make informed decisions on the most appropriate solutions in their personal situation.
9
VCT as an enirypoint for
HIV Prevention and Care
For pregnant women, VCT facilitates access to the following specific elements of care
(WHO, 1999):
In case of a negative HIV test result:
• Prevention education to remain negative
• Standard antenatal and delivery care
• Family planning
In case of a positive HIV test result:
• Post-test counselling and then ongoing sessions
• Prevention education
• Counselling on continuation of the pregnancy and referral to appropriate services
• Antenatal and delivery care, taking into account HIV serostatus
• Counselling for, and access to MTCT prevention interventions
• Counselling for infant feeding support
• Family planning counselling and services
.• Clinical care for HIV related illness
While MTCT prevention is the major rationale for introducing VCT services into the
antenatal setting, there arc other important benefits.
For seronegative women, VCT can play a major role in primary prevention of HIV
infection: many men and women in high prevalence areas assume they are infected, when in
fact the majority of people are not. Whatever the result of the HIV test, safer sex counselling
is crucial: for women who acquire HIV during the antenatal or breastfeeding period, the risks
of MTCT are particularly high as the viral load is high at the time of acute HfV infection.
Therefore, VCT should also involve partners of women attending antenatal care services,
especially because up to 25% of couples in which one partner is seropositive, are
serodiscordant. If both partners are counselled HIV transmission can be reduced. Some
10
women may wish to involve other family members in the VCT process as well. “Aunties”,
mother or sisters may have important supportive roles which may be particularly valuable in
ensuring the success of follow-up care including interventions for the prevention of MTCT.
(Baggaley, 1998).
Women who arc offered VCT during the antenatal period and test seropositive before they
become symptomatic, will have an opportunity to earlier access to appropriate health care,
including preventive therapies and emotional and social support. Women with symptomatic
HIV disease can be referred for appropriate treatment of HIV-related illnesses, for home
based care and community-based social support (e.g., associations of people living with
HIV/AIDS, post-test clubs and other HIV-positive pregnant women).
Women who test seropositive in early pregnancy can make informed decisions about
continuation or termination of the pregnancy (if abortion services are available and safe).
Women who choose to continue with their pregnancy, can be given better antenatal care as
well as during and after delivery, including MTCT prevention interventions; in this context,
VCT also allows women to make informed decisions about safe infant feeding.
Family planning should be discussed and provided in the postnatal period for HIV-infected
women who decide to carry through their pregnancy. This is especially important if women
choose not to breastfeed as they will lose the contraceptive effect of breastfeeding.
VCT also allows women to better plan for the future care of their children (Sangiwa et al,
1998). Women with HIV often worry about what is going to happen to their children if they
become sick or die. Counsellors should be able to refer for spiritual and legal support if
available.
Other benefits of VCT
Stigma, denial and rejection, are major barriers to HFV prevention. People are rarely open
about their positive HIV status, and the vast majority of people have not been tested
(Baggaley, 1997). If VCT were more available more people would know their HIV status
This could help decrease the stigma and fear attached to the disease and lead to a more open
approach to HIV prevention and care (De Cock ct al, 1998; Godfrey-Faussett et al, 1998).
VCT can also raise awareness and acceptance among health workers, which may improve
HIV care in health care settings; even in high HIV prevalence areas HIV remains a
stigmatised condition in many health care settings. Health care staff may be reluctant to raise
the possibility of HIV as a diagnosis and are uncomfortable about talking directly to patients
about HIV.
Referral to services as an entry into a continuum of care is one of the counsellors’ key
roles. Knowledge of related services and organisations in the local area is essential so that the
client can be directed appropriately and promptly for care and support at all stages of illness.
Minimum conditions for VCT services in antenatal settings
A number of issues need to be addressed in order to create the minimum conditions for
proper functioning of VCT services in antenatal settings (WHO, 1999):
Acceptability of VCT services requires confidentiality. Informed consent must be the basis
for the woman’s individual decision and there should be no coercion into HIV testing or
MTCT interventions. VCT needs to be organised in such a way that stigmatisation is
avoided: e.g., attendance for VCT should be indistinguishable from attendance for an
antenatal check-up.
For VCT to be accessible, distance, availability of transport and opening hours need to be
taken into account. Other aspects of accessibility include the possibility of partners, family
members or a friend attending for VCT with the pregnant woman.
For services to be affordable to all women in need, they will almost certainly have to be
provided at low cost or free of charge. In terms of affordability for the health services, cost
effectiveness needs to be demonstrated. Reducing the number of children bom with HIX'
11
infection may represent a substantial saving in treatment and care costs whether this has been
achieved through ARV treatment, provision of family planning services or termination of
pregnancy.
High-quality VCT services also require adequate numbers of qualified staff, who receive
regular update-training. Staff costs in developing countries rarely represent the major cost of
VCT services. However, additional staff is needed, especially when MTCT prevention
interventions arc offered. ANC visits currently average less than four minutes in many
developing countries. However, expanding VCT services as part of MTCT prevention
programmes requires substantial increases in staffing, especially in high prevalence areas.
Another alternative is to recruit lay or peer counsellors and volunteers to reduce pressure on
health staff. Some pre-test information can also be given in groups which can cut down the
time required for individual pre-test counselling.
VCT also requires additional space to ensure privacy: antenatal care often does not take
place in privacy. However, VCT and free discussion of risk factors, sexual relationships and
MTCT interventions will not be possible unless women requires certain privacy. Also,
providing a space where children can play supervised by other waiting mothers or health care
staff enables counselling to proceed without interruptions.
Finally regular support and supervision should be planned and provided to counsellors in
order to minimise “burnout” and avoid losing valuable and experienced staff (Kalibala,
1995).
c.
Optimal obstetric practices
Elective caesarean section as an alternative to natural vaginal birth, can contribute to
reducing transmission during delivery, as they reduce the chances of the child getting in
contact with HIV in maternal blood or vaginal secretions, especially because caesarean
sections eliminate the risk of premature rupture of the membranes.
A randomised controlled trial from 1999 shows that caesarean section performed before
labour and membrane rupture reduces MTCT of HIV-1 by 50-87% in women receiving no
ARV therapy or ZDV prophylaxis (EMDC, 1999; IPHV, 1999)
Maternal viral load is a critical determinant of transmission risk. The question is whether
the potential benefits of caesarean sections in women whose viral load is unknown, outweigh
the substantial risks involved under less-than-optimal conditions, as is often the case in
developing countries (Bulterys et al, 1996). Therefore, the role of caesarean sections in
MTCT prevention seems to be confined to HIV-positive women receiving no ARV treatment,
with known high viral loads, in more-developed countries.
Avoiding unnecessary invasive procedures: Invasive procedures, which increase the
possibility of mixing of maternal and foetal blood, should be avoided to reduce the chances
of transmission during pregnancy and delivery.
Virucidal cleansing of the birth canal
Washing the birth canal with vaginal antiseptics such as chlorhcxidine seems to contribute
slightly to a further reduction of MTCT.
A study from Malawi (Taha et al, 1997) showed no reduction in MTCT rates as a result of
washing the birth canal around delivery and the newborn with 0.25% chlorhcxidine.
However, overall maternal and neonatal mortality and morbidity were significantly reduced.
A study with higher concentrations of chlorhexidine is currently being carried out in Soweto,
South Africa (Mofenson & McIntyre, 2000).
Prevention ofplacental membrane inflammation
12
Placental membrane inflammation has been identified as a risk factor for MTCT (Wabwire et
al, 1999), and can possibly be treated by short-course antibiotic treatment.
d.
(Short-course) antiretroviral prophylaxis
Efficacy of antiretroviral prophylaxis
Several ARV treatments (zidovudine (ZDV) alone, ZDV+lamivudine (3TC) and nevirapine
(NVP)) have shown short-term efficacy for preventing MTCT in randomised controlled
clinical trials. This reflects the reduction of in utero, intrapartum and early postpartum
transmission.
The main mechanism is through decreasing viral replication in the mother and/or
prophylaxis of the infant during and after exposure to virus. Long-term efficacy (infant
infection status through 12-24 months) has been demonstrated for short-course ZDV and
NVP regimens, showing that the early reduction in HIV transmission persists despite
continued exposure to HIV during breastfeeding. Analysis of long-term efficacy of the
ZDV+3TC regimens is in progress: analysis based on 18 months’ data (mortality and HIV
status) from the PETRA study shows that almost no effect of ARV can be found anymore
due to HIV infection through breastfeeding (Havcrkamp, 2001)
In the last decade, antiretroviral regimens that are applicable to resource-poor settings and
breastfeeding populations have also shown to be effective.
Zidovudine PACTG 076 regimen
Since 1994, several clinical trials have shown the potential of administering zidovudine
(ZDV) to mothers and their new-born babies. The strongest reduction in MTCT (from 26% to
8%: a 68% reduction), was obtained by the PACTG 076 ZDV regimen: a long and complex
three-part regimen of ZDV to the mother during pregnancy and delivery, as well as
postnatally to both the mother and the new-born child. (Connor ct al, 1994)
Since then, this ZDV regimen was implemented in most industrialised countries and
overall perinatal transmission rates there dropped to about 5% of deliveries by HIV-positive
mothers; currently, MTCT hardly takes place in industrialised settings, as most HIV-infected
mothers receive potent ARV treatment.
Short-course ZDV regimens and other alternatives
However, the complex PACTG 076 regimen was of little practical value for resource-poor
settings, given its prohibitive cost, especially since this only reflects the actual costs of the
drugs per person treated, not per HIV-infection averted. However, more appropriate short
course ZDV regimens - starting later in pregnancy - also proved to be effective.
A 1998 study using a short regimen of ZDV among non-breastfeeding women in Thailand,
showed a reduction of MTCT by 50% (Shaffer et al, 1999). While slightly less effective, this
cheaper and less complex regimen provides a more feasible option for implementation in
developing countries.
Other studies in breastfeeding women in Cote d’Ivoire (Wiktor et al, 1999; Dabis et al, 1999;
DITRAME, 1999) and Burkina Faso in 1999, show that the effect - though somewhat less
than in non-breastfeeding women - of short-course treatment with ZDV is sustained for at
least six months, with reductions of MTCT by 35-40%.
Comparison of the various regimens used in these studies, shows that adding one week of
postnatal ZDV to an ante- and intrapartum regimen to mother or infant, shows no added
reduction in MTCT. However, when no antepartum prophylaxis is given, addition of
13
postpartum to intrapartum ZDV is critical: this finding is particularly important for HIV
positive mothers who present themselves in a late stage, just before delivery.
Similarly, a combination of ZDV and lamivudinc (3TC) during delivery only was ineffective
(Saba et al, 1999), but combining it with post-delivery administration in the PETRA study or
the two-dose nevirapine (NVP) HIVNET 012 study had a significant effect (47% reduction)
(Guay ct al, 1999).
In the HIVNET 012 study among breastfeeding mothers in Uganda, the two-dose
intrapartum-neonatal nevirapine regimen not only proved to be almost 50% more effective
than a short course of ZDV (47% vs. 25%), but the cost of treatment was also reduced
dramatically to about USS4.- (against about USS30.- for short-course ZDV), making MTCT
prevention a more viable option for resource-poor nations.
Several other regimens all show different outcomes, but the HIVNET 012 NVP-regimen
offers the cheapest and simplest intervention for resource-poor settings, with significant
effect in breastfeeding populations at least up to four months.
Based on the most recent research data, the latest WHO Technical Consultation
(WH0/1ATT, 2001) draws the following key conclusions regarding prophylactic use of
ARVs for MTCT prevention:
Safety of antiretroviral prophylaxis
All clinical trials on prophylactic ARV use have shown short-term safety and tolerance, while
research on long-term safety is ongoing. The regimens have not shown severe adverse effects
and did not seem to affect normal growth, neurologic development and immunologic
parameters in uninfected children with in utero or neonatal exposure to ZDV.
Furthermore, antiretroviral prophylaxis does not seem to affect HIV-related disease
progression in mothers, nor HIV-diseasc progression or mortality in children who became
infected despite receipt of prophylaxis. The only adverse effects associated with ARV
prophylaxis was mild transient anaemia in infants receiving ZDV-containing regimens, as
well as mitochondrial dysfunction in a small number of infants in France exposed in utero or
nconatally to (ZDV or ZDV+3TC) (Mofenson et al, 2000). The recent upheaval on the
possible (un)safcty of nevirapine for post-exposure prophylaxis (PEP) seems to have no
implications for its use for short-course prophylaxis for MTCT prevention
In conclusion, current data indicate that if negative side-effects are present, they are rare
and the risk of toxic effects is clearly outweighed by the benefit of reducing MTCT.
Development of drug resistance
There is currently no evidence that drug-resistant viruses are more transmissible than nonresistant viruses, nor that they are more virulent than non-resistant viruses. Prophylactic ARV
use does not seem to be associated with an increased risk of developing drug resistance.
e.
Support for safe infant feeding
Risks of breastfeeding vs. replacement feeding
The risk of HIV transmission through breastfeeding has made safe infant feeding one of the
most complex and emotional aspects of MTCT prevention, because breastfeeding is one of
the most important child survival and early childhood development interventions (Preble &
Piwoz, 2001). Breastfeeding has many health, nutrition, birth spacing, emotional, and
psychosocial benefits.
14
The protective effects of breast milk against common childhood diseases such as diarrhoea
and pneumonia are assumed to be working in HIV-positive women as well. In addition, breast
milk contains several components that may have a protective effect against HIV, such as
maternal immunoglobulins and human lactoferrin. Infants could be doubly disadvantaged by
being at risk through simultaneous exposure to HIV through breastfeeding and the risks of
contracting other childhood diseases associated with unsafe replacement feeding, i.e. due to
lack of safe drinking water (Victora, 1987, 1989).
In addition, breastfeeding is more economical and exclusive breastfeeding provides the
infant’s complete nutritional needs up to the age of 4-6 months and delays the return of
fertility, thus playing an important role in birth spacing.
Most of these benefits of breastfeeding are greatest in the first six months. Exclusive
breastfeeding during the first 4-6 months carries greater benefits than mixed feeding with
respect to morbidity and mortality from infectious diseases other than HfV. Although
breastfeeding no longer provides all nutritional requirements after six months, breastfeeding
continues to offer protection against serious infections and to provide significant nutrition to
the infant (half or more of nutritional requirements in the second six months of life, and up to
one third in the second year) (WHO/IATT, 2001).
On the other hand, breastfeeding is associated with a significant additional risk of HIV
transmission from mother to child as compared to non-breastfeeding. This risk appears to be
greatest during the first months of infant life but persists as long as breastfeeding continues.
Half of the breastfeeding-related infections may occur after six months with continued
breastfeeding into the second year of life.
Up to 20% of infants born to HIV-infected mothers may acquire HIV through
breastfeeding, depending on duration and other risk factors. Therefore, messages promoting
universal, exclusive breastfeeding for the first 4-6 months of life have become more complex.
While HIV-positive women in industrialised countries are generally advised to give
exclusive formula-feeding, its high cost makes this an unfeasible option for most developing
nations.
Breastfeeding versus formula feeding
Replacement feeding carries an increased risk of morbidity and mortality associated with
malnutrition and infectious disease other than HIV (Victora, 1987, 1989), especially in the
first six months. The risk and feasibility of replacement feeding are affected by the local
environment and the individual woman’s situation.
A recent clinical study in Nairobi, Kenya, comparing infant formula with breastfeeding,
showed that formula-feeding by cup reduced postnatal MTCT rates by 44%. 75% of MTCT
through breastfeeding occurred during the first six months of life, though transmission
continued throughout the duration of breastfeeding (Nduati et al, 2000). Mortality was quite
high in both groups (24% in breastfed and 20% in formula-fed infants), despite the fact that
women were enrolled in an urban setting with running water in their homes and access to free
formula. Although participating women had on average 8 years of education, compliance
with formula was only 70%. However, given these rather untypical enrolment criteria, it is
difficult to apply these results to the common situation in developing countries where clean
water and free formula are not available (Lhotska, 2001).
Changing infant feeding practices
Understanding attitudes and practices related to breastfeeding and perceptions and stigma
associated with not breastfeeding is critical for the development of appropriate interventions
to reduce MTCT through breastfeeding.
15
Stigma attached to changes in infant feeding practices
In many African cultures women who do not breastfeed arc often considered ‘bad mothers’.
The emergence of HIV in Africa has enhanced this stigma, as described recently in studies in
Botswana; Cote d’Ivoire; Zambia; and Zimbabwe. This stigma may increase as efforts to test
and counsel women about HIV and infant feeding (e.g., encouraging HIV-infected mothers to
breastfeed exclusively and practice early and abrupt weaning) are put in place (Preble &
Piwoz, 2001).
In order to destigmatise changes in infant feeding practices among HIV-infected mothers,
the family and community need to be educated as well, since infant feeding decisions are
rarely made by the mother alone. In addition, health workers need training to better the views
of women and their families.
Guidelines for replacement feeding
In 1998, the UN published guidelines for HfV and infant feeding that outline various feeding
options for HIV-infected women including commercial infant formula, home-prepared infant
formula, expressed and heat-treated breast milk, and early cessation of breastfeeding
(UNICEF/UNAIDS/WHO, 1998).
These guidelines clearly state that all women should have access to information about
MTCT. While guidance on optimal breastfeeding should be given to all mothers, information
on specific replacement feeding options should be provided only for women who know they
are HIV-infected and can decide which option works best for them and their families. This
targeting of replacement feeding advice is needed to ensure confidentiality and to minimise
the erosion of optimal breastfeeding practices in the general population. (Preble & Piwoz,
2001).
When governments provide breastmilk substitutes (BMS) for free or at subsidised prices,
they should ensure sufficient quantities (at least six months) to individual infants; this should
be done in a sustainable way, avoiding dependency on donors. BMS should not be promoted
to the general public or through the health care system (UNICEF, UNAIDS, and WHO,
1998).
Cessation of breastfeeding — avoiding mixed feeding
As noted above, mixed feeding during the transition period between exclusive breastfeeding
and complete cessation of breastfeeding may increase the risk of MTCT. Therefore, the
period of transition should be kept as short as possible to reduce the risk of MTCT. This in
turn, however, may have negative nutritional consequences for the infant, psychological
consequences for the infant and the mother, and expose the mother to the risk of breast
pathology, which may then increase the risk of HIV transmission (unless cessation of
breastfeeding is abrupt. Currently, the best duration for this transition is unknown and may
vary according to the age of the infant and/or the environment (WHO/IATT, 2001).
As most transmission occurs during the first months of breastfeeding, early weaning alone
would be ineffective to prevent MTCT. At the same time, complete avoidance of
breastfeeding is unfeasible in many resource-poor settings. On the other hand, if it is
confirmed that truly exclusive breastfeeding (which is uncommon in most countries) lowers
the risk of MTCT, it would mean women could offer their infants the advantages of
breastmilk while limiting the risk of MTCT after delivery.
More research is needed to confirm the findings from these two studies. In addition, ARV
treatment of mother, infant or both during breastfeeding, combined with early cessation, is a
potentially effective intervention.
Infant feeding counselling
16
Infant feeding counselling, long recognised as important for all mothers, has become even
more important with the emergence of HIV. In Africa, although nearly all women breastfeed
and the duration of breastfeeding is often greater than 24 months, breastfeeding patterns arc
rarely optimal. For example, only 31 percent of children in sub-Saharan Africa get the
benefits of exclusive breastfeeding. Also, the introduction of water and watery gruels, which
occurs early, often in the first month of life, endangers infants (Preble & Piwoz, 2001).
Overall knowledge about safer infant feeding options to prevent MTCT is quite low. While
general information on safer infant feeding is often not enough for women to make a choice,
infant feeding counselling can provide the guidance women need to make the choice that is
most feasible, acceptable and appropriate for their situation. It may help women to choose
and practise safer infant feeding options that may be uncommon in their environment, such as
exclusive breastfeeding or complete avoidance of breastfeeding. In addition, it may reduce
breast health problems that increase the risk of MTCT. However, there arc relatively few
trained people in this field (WHO/IATT, 2001).
Breast health
There is some evidence that breast conditions including mastitis, breast abscess, and nipple
fissure may increase the risk of HIV transmission through breastfeeding, but the extent of this
association is not well quantified.
Treatment of mastitis at low cost with antibiotics may reduce MTCT through
breastfeeding. It is not known whether micronutrient supplementation (vitamin E, selenium,
vitamin A or beta-carotene) reduces mastitis-related HfV transmission.
Multiple micronutrient supplements, however, appear to have many beneficial impacts for
infants from HIV-infccted women and may improve the immune status of postnatal HIVinfccted women. Trials among uninfected women are being carried out in several countries to
assess the benefits of multivitamin supplementation in the general population of pregnant
women in developing countries (UNICEF, 1999).
f.
Nutritional supplementation
Vitamin A may play a protective role in various routes of vertical transmission. Vitamin A
deficiency impairs the functioning of the immune system, which may result in an increased
maternal viral load; alternatively, vitamin A deficiency could also be a sign of advanced HfV
disease in the mother.
Vitamin A deficiency may also lead to impaired integrity of the inner surfaces of vagina
and cervix as well as increased vaginal shedding of HIV, both associated with a higher risk of
MTCT during delivery. Furthermore, vitamin A deficiency in HIV-positive women may be
associated with fissured nipples, which may facilitate HIV transmission through
breastfeeding.
Adding vitamin A to the diets of HIV-positive mothers seems to be a promising option for
reducing the risk of HIV transmission through breast milk.
The impact of vitamin A or multivitamin supplementation was assessed in three trials in
Africa (Coutsoudis, 1999b; Scmba et al, 1994; Fawzi, 1998), but results did not show
reduced MTCT. However, all studies showed significant decreases in adverse pregnancy
outcomes, and continued multivitamin supplements to the mother after delivery was
associated with higher CD4 counts in one study (Fawzi ct al, 1998).
A study in Malawi in 1994 showed a positive association between vitamin A deficiency I
mothers and HIV transmission through breast milk (Semba et al, 1994), and subsequent
infant (Semba et al, 1995) and maternal mortality (Semba, 1997).
17
A study in Kenya also found that low scrum retinol levels were associated with HIV levels
in breastmilk and in vaginal secretions, suggesting that vitamin A status could affect MTCT
during delivery and through breastfeeding (Nduati ct al, 1995).
A study in Zimbabwe is providing high-dose vitamin A supplements to mothers and/or
babies within 96 hours of deliver}'. Mothers and babies are followed prospectively to assess
infant mortality, MTCT during breastfeeding and incident HIV infection among the
postpartum women. 14,000 mother-baby pairs have recently been enrolled, which will be
followed for two years (Humphrey et al, 2000).
In conclusion, from a strictly medical point of view, the best way to prevent MTCT in HIV
positive pregnant women is the three-stage regimen of ZDV, combined with elective
caesarean section and safe replacement feeding. However, in practice, only industrialised
countries can afford and safely implement this intervention. In situations where the necessary
health care environment may not always support the intervention, such as in most developing
countries, individuals, communities and policy makers are faced with difficult dilemmas in
making the best possible choice out of medically less effective interventions.
18
2.
EXPERIENCES WITH
MTCT PREVENTION
2.1
UNICEF pilot projects
IMPLEMENTATION
OF
The earlier mentioned “Thai” 1998 study, which showed that short-course ZDV starting from
36 weeks of pregnancy reduced the MTCT rate by 50%, led to the development of a
comprehensive strategy for MTCT prevention. Under the umbrella of the UN Inter-Agency
Task Team (IATT) on MTCT, UNICEF initiated pilot projects on MTCT prevention in 17
(resource-limited) countries, which have so far yielded a lot of experience with
implementation outside strict trial conditions, particularly showing problems regarding safe
infant feeding recommendations.
The pilot projects comprise the following elements:
Voluntary counselling and testing (VCT);
ZDV from 36 weeks and during labour to mothers who arc HIV-infected;
Counselling on infant feeding options.
Since the first pilot projects started, more recent clinical trials have shown that other short
course ARV regimens using ZDV, the combination ZDV+3TC, and nevirapine (NVP) are
also effective in reducing the risk of transmission. NVP is now being used alongside ZDV in
a number of pilot studies (Haverkamp, 2001).
2.2
Critical remarks
While UNICEF’s current pilot studies provide valuable information on the actual
implementation of MTCT prevention beyond strictly controlled research settings, they still
take place under very special circumstances, limiting extrapolation of the results to the wider
context of actual field conditions. The overall impact of MTCT prevention programmes will
always be much lower than what is found in the current studies and pilot projects, because
they take place under artificially improved conditions (Haverkamp, 2001).
In the current pilot studies, it has proven extremely difficult to motivate already
overburdened staff for additional tasks and further increase their workload without extra
financial remuneration. Furthermore, the UNICEF protocol is only feasible in big reference
hospitals that receive extra support, especially for counselling: the biggest problem is lack of
trained people.
Counselling practice in the UNICEF pilot studies is far from ideal: in relatively well
functioning hospitals pre-test counselling takes place in groups. After delivery there is
usually no follow-up, as most women come for delivery only, unless their infant has a
specific health problem: this is a major source of bias. Only those women who come back for
vaccinations (20-40%) arc examined for general health status, while their infants are tested
for HIV. These HIV tests are usually only done after 15-18 months, which makes it difficult
to assess the most likely cause of any HIV infection. During the postnatal care visits, there is
a lot of attention for safe infant feeding options (Haverkamp, 2001).
19
The problem with the pilot studies is that while UNICEF supports hospitals with training,
HIV testing and antiretroviral prophylaxis, the hospitals are supposed to bear the brunt of the
extra work, while no additional human resource capacity is created.
As for HIV testing, the currently used rapid tests are very easy to implement and require
far less laboratory capacity than previous tests. While they are ideal for project
implementation (faster test results), psychologically they are a lot more difficult for the
women who get tested, because there is no time period allowing women to ‘escape’ the test
results. With the new rapid tests, women go to a clinic, get tested, and may shortly thereafter
leave with what they consider a death sentence: a positive test result (Haverkamp, 2001).
\\hilc the main goal of these pilot studies is not to collect data on efficacy of MTCT
programmes, but to assess practical problems arising during their implementation, it is
obvious that comprehensive MTCT prevention programmes require substantial external
support and resources in terms of voluntary counselling and testing, antiretroviral
medications, replacement feeding and safe infant feeding counselling.
It is clear that future MTCT prevention interventions should not stand in isolation, but be
integrated into existing health-care infrastructures and reproductive health services.
Experiences in East and Southern Africa
From 9-10 October 2000, UNICEF ESARO (East and Southern Africa Regional Office) held
a meeting on HIV and infant feeding in Nairobi, Kenya, to review experiences of MTCT
prevention projects and research studies, and develop specific recommendations.
By then, several countries had developed guidelines on HIV and infant feeding based on
the 1998 UN guidelines. In some countries, training of health workers and actual counselling
of HIV-positive mothers on the risks of MTCT through breastfeeding and alternative infant
feeding options had also started.
Besides the MTCT pilot studies, several research projects are looking at different aspects
of MTCT prevention in the region. Many of these research projects have gained more
experience with counselling HIV-positive mothers on infant feeding than the actual pilot
projects. (Wagt A de, 2000).
Experiences in various countries in East and Southern Africa have shown discrepancies
between HfV and infant feeding policies and national nutrition policies. Implementation of
policies may be poor in the absence of clear guidelines.
While official policy may discourage breastfeeding in HIV-infected women, e.g. in Uganda
and Tanzania, limitations for safe alternatives have led to the promotion of exclusive
breastfeeding for three months, followed by abrupt cessation and replacement feeding. In
many countries, however, breastfeeding may be common, but exclusive breastfeeding is not,
and provision of free formula may actually encourage mixed feeding. Furthermore, it will
often be difficult for governments to continue to provide free formula when MTCT
prevention programmes go to scale.
In addition, women often face practical, financial and cultural barriers to early cessation of
breastfeeding: expressing breast milk is hardly an option (stigma), while there arc often
cultural barriers against boiling breastmilk (mother then believed to be bewitched) and wet
nursing. On the other hand, many mothers do not believe that exclusive breastfeeding can
reduce MTCT as this contradicts their knowledge that breastfeeding can transmit the virus.
There is also a lack of knowledge about how to minimise the potentially adverse effects of
abrupt cessation of breastfeeding. Suggestions for early breastfeeding cessation and the
transition to exclusive replacement feeding include:
- Reducing the frequency of breastfeeding;
- Accustoming the infant to cup-feeding with expressed breastmilk;
- Encourage the use of a finger sucking or other means of comforting in-between feeds;
- Providing the infant with skin-to-skin contact and massage, holding and talking to the baby
for stimulation to ease child and maternal depression; and
20
- Prcventing/trcating breast engorgement and mastitis.
Certain issues still need clarification: c.g., nothing is known about how much reduction in
HIV-transmission can be reached by early cessation of breastfeeding and how this compares
to the risk of malnutrition and mortality. Key priorities to scale up MTCT prevention
programmes include the coordination of national policies and guidelines, strengthening of
counselling capacity, more clarity on safe infant feeding and reduction of stigma through
more active community involvement (Wagt A de, 2000).
21
CURRENT
IATT
PREVENTION
3.
GUIDELINES
FOR
MTCT
On behalf of the Inter-Agency Task Team on MTCT, WHO’s Department of Reproductive
Health and Research, in collaboration with the HIV/STI Initiative and the Department of
Child and Adolescent Health, convened a Technical Consultation on new data on the
prevention of MTCT and their policy implications, which took place from 11-13 October
2000 in Geneva.
The objective was to review recent scientific data and update current recommendations on
the provision of ARVs and infant feeding counselling.
The Technical Consultation focused on these two components, although it was recognised
that many other components are important for a comprehensive package for MTCT
prevention.
Conclusions and recommendations from this forum were approved on 15 January 2001 and
can be considered the best guidelines given the current state of knowledge on MTCH and
experience with pilot studies.
Short-course antiretroviral prophylaxis
3.1
Given the currently available research data on short- and long-term efficacy, safety and
potential development of drug resistance, the WHO Technical Consultation (WHO, 2001)
concludes that benefit of prophylactic ARV use for reducing MTCT greatly outweighs any
potential adverse effects.
Therefore, they conclude that any of the prophylactic ARV regimens proven effective (ZDV,
ZDV+3TC, or NVP) can be recommended for general implementation. There is currently no
justification to restrict use of any of these regimens to pilot project or research settings.
The key recommendation regarding prophylactic ARV use for reducing MTCT is that MTCT
prevention should be part of the minimum standard package of care for women who arc
known to be HIV infected and their infants. The local choice for the ARV prophylactic
regimen to include in the standard package,of care should be determined by issues of
feasibility, efficacy and cost.
Considerations regarding the composition of the standard prophylactic package include:
proportion of women attending antenatal care; time of initiation of antenatal care; frequency
of antenatal visits; type of HIV voluntary counselling and testing available; logistics and
acceptability antiretroviral prophylaxis administration; and cost of drugs.
Support for safe infant feeding
3.2
Risks of breastfeeding and replacement feeding
Given the relative benefits and risks of exclusive breastfeeding, mixed feeding and
replacement feeding with regard to likelihood of HIV infection, and morbidity and mortality
due to other infectious diseases (described above), the IATT makes the following general
recommendations, based on current - limited - knowledge:
•
When replacement feeding is acceptable, feasible, affordable, sustainable and safe,
avoidance of all breastfeeding by HIV-infected mothers is recommended. Otherwise,
exclusive breastfeeding is recommended during the first months of life.
22
•
•
To minimise HIV transmission risk, breastfeeding should be discontinued as soon as
feasible, taking into account local circumstances, the individual woman’s situation and
the risks of replacement feeding (including infections other than HIV and malnutrition).
When HIV-infected mothers choose not to breastfeed from birth or stop breastfeeding
later, they should be provided with specific guidance and support for at least the first two
years of the child’s life to ensure adequate replacement feeding. Programmes should
strive to improve conditions that will make replacement feeding safer for HIV-infected
mothers and families.
Cessation of breastfeeding
The best duration for the transition from exclusive breastfeeding to complete cessation of
breastfeeding, is not known and may vary according to the age of the infant and/or the
environment.
There are potential harmful effects of mixed feeding during this transition period, but on
the other hand shortening it may have negative nutritional, psychological and medical
consequences for the infant and mother (see above).
Therefore, WHO/IATT recommends that HIV-infected mothers who breastfeed should be
provided with specific guidance and support when they cease breastfeeding to avoid harmful
nutritional and psychological consequences and to maintain breast health.
Infant feeding counselling
Given the complex choices HIV-positive women face regarding safe infant feeding options,
counselling plays a crucial guidance role.
The IATT therefore recommends that the general public, affected communities and
families should be informed and educated on MTCT. Local assessments are needed to
identify the range of feeding options that are acceptable, feasible, affordable, sustainable and
safe in a particular context.
Most importantly, all HIV-infected mothers should receive infant feeding counselling; this
should include general information about risks and benefits of the different options, and
specific guidance in selecting the most appropriate option for their situation. Whatever they
decide, they should be supported in their choice.
Given the shortage of skilled staff, adequate numbers of people should be trained as infant
feeding counsellors, deployed, supervised and supported. This includes updated training on
new information and recommendations.
Breast health
Given the fact that breast conditions such as mastitis, breast abscess, and nipple fissure may
increase the risk of HIV transmission through breastfeeding, the IATT recommends that:
“HIV-infected women who breastfeed should be assisted to ensure that they use a good
breastfeeding technique to prevent these conditions; if they occur nevertheless, they should
be treated promptly.”
Maternal health
In one trial, the risk of dying in the first two years after delivery was greater among HIVinfected women who were breastfeeding than among those who were formula feeding. In
addition, women who do not breastfeed or stop breastfeeding early are at greater risk of
becoming pregnant.
In this context, the IATT recommends that: “HIV-infected women should have access to
information, follow-up clinical care and support, including family planning services and
nutritional support. Family planning services are particularly important for HIV-infected
women who are not breastfeeding.”
23
4.
DISCUSSION AND POLICY IMPLICATIONS
4.1 Preventing
mother-to-child
knowledge and gaps
transmission
of
HiV:
Much is known about the main mechanisms of MTCT of HIV, and about potentially effective
ways to prevent HIV transmission from mothers to their children. While primary prevention
of HIV infection of the mother (and father), as well as prevention of unwanted pregnancies of
HIV-positive mothers arc ultimately the best options, the generally low percentage of women
aware of their HIV status and overall high fertility rates in non-industrialised countries still
result in many pregnancies among HIV-positive women.
This high amount of pregnancies among HIV-infected women has led to an ever-increasing
body of knowledge on how to prevent HIV transmission to the infant, either in utero,
intrapartum or postpartum. In addition to this technical knowledge, MTCT prevention pilot
studies and other studies in several countries have also yielded an increasing experience with
MTCT prevention. However, the conditions in which the ongoing UNICEF pilot projects arc
taking place are often artificially improved and cannot automatically be extrapolated to the
generally worse conditions of ordinary health facilities, particularly in African countries. The
question therefore remains how MTCT prevention programmes will behave under actual
field conditions.
Yet, crucial information is missing to be able to provide practical guidance to HIV-positive
mothers, health staff and policymakers as to the best ways to prevent MTCT.
Specific research priorities
In the area of basic clinical research we need to know more about the type, duration,
efficacy and safety of ARV prophylactic regimens and possible development of resistance.
Similarly, we need to know more about the risks and benefits of different patterns of infant
feeding, in particular about the influence of exclusive breastfeeding, exclusive formula
feeding, mixed feeding and duration/timing of breastfeeding cessation on MTCT, overall
infant morbidity and mortality and birth spacing.
Regarding MTCT reduction during breastfeeding, more research is needed on the efficacy
of ARV treatment of mother and/or infant for the prevention of MTCT through
breastfeeding; and the best ways to minimise MTCT, nutritional and psychological risks for
infant and mother during the transition period between exclusive and no breastfeeding.
In the area of programme implementation, more research is needed on the barriers to
voluntary counselling and testing in pregnant women in different settings. A crucial area of
research is related to the effect of infant feeding recommendations on breastfeeding
behaviour of HIV-infected women, as well as that of HIV-negative women (“spill-over”
effect), and the overall impact on HIV transmission and infant mortality rates.
The important role of social stigma necessitates research on ways to enhance involvement
of partners, families and communities in supporting alternative infant feeding options.
While many other specific research priorities can be mentioned, these are the main areas,
which indicate that much basic knowledge is still lacking to be able to provide clear
guidelines on the prevention of MTCT.
24
4.2 Towards implementation of prevention
Guidelines and guiding principles
programmes:
The current guidelines on MTCT prevention prepared by the IATT -while reflecting the best
current knowledge— are still insufficient and lack clear, practical guidance for HIV-positive
women and health workers. In the end, women arc left with the responsibility of making
difficult decisions related to VCT, antiretroviral prophylaxis and especially infant feeding
options, based on inconclusive knowledge.
The problem is that the advice that is currently being given on the preferred ways to
prevent MTCT, may turn out to be equivocal after more research has been done in the areas
mentioned above: the damage may then be difficult to repair. This applies particularly to the
area of breastfeeding.
While it may be difficult to provide clear, practical guidelines, the general guiding principles
that need to guide current MTCT prevention programmes can be distinguished:
a) Human rights-based approaches
The first guiding principle for MTCT prevention should be the protection of human rights of
mother and child, including the mother’s sexual and reproductive rights.
MTCT prevention should not be driven only by the public health concern to reduce HIV
incidence among infants, but should depart from a genuine concern to protect and promote
the woman’s and child’s health, autonomy and human rights. A first prerequisite is respecting
the principle of informed choice: efforts to prevent MTCT should start with guaranteeing
access to sexual and reproductive education and other services for all women and girls, men
and boys. This is a precondition to avoid HIV infection in the first place. In the more specific
context of preventing HIV transmission from the already infected mother to her child, the
starting point should be access to voluntary counselling on issues related to HIV testing and
the various ways to prevent MTCT, especially regarding safe infant feeding options. Women
should not only be given full information and personal advice, but also be supported in their
choice.
b) Focus on overall infant survival
Reduction of MTCT rates in itself should not be the golden standard for success of
interventions: in the end, the wider impact on child survival and maternal health and rights
needs to be the main criterion for success. This is a particularly important issue given the
risks and benefits of (exclusive) breastfeeding vs. replacement feeding.
c) Comprehensive instead of vertical approaches
MTCT prevention cannot be achieved by a “magic bullet” of antiretroviral prophylaxis alone.
Many issues need to be taken into account for successful MTCT prevention. Integration of
HIV/AIDS (and MTCT) into nutritional and reproductive health policies and services (e.g.,
family planning and antenatal services and optimal obstetric practices, postnatal care and
support), voluntary counselling and testing, support for safe infant feeding and antiretrovirals
are elements of a truly comprehensive approach to MTCT prevention.
Most of all, however, MTCT prevention programmes should be sensitive to local notions
of what is socially, culturally and financially acceptable and sustainable.
Moreover, MTCT prevention should be seen as part of a wider response to HIV/AIDS,
which includes expanding access to care and support for HIV-infected mothers and their
families, including treatment of opportunistic infections and accelerating access to HIV
treatment.
d) Strengthen primary prevention
25
A comprehensive, non-vertical approach to MTCT prevention should avoid an exclusive
focus on preventing HIV transmission from the infected woman to her child. While much of
the current knowledge and research focuses on this area, the ultimate goal is to prevent
women and men from becoming HIV-infected in the first place. If comprehensive approaches
to HIV/AIDS are not in place, isolated, vertical interventions to prevent HIV transmission
from infected women to their children will always remain an admission of weakness.
e) The right to access to the fruits of scientific research
While basic and clinical science provide a growing insight into the (theoretical) possibilities
of preventing MTCT, monitoring and evaluation of MTCT prevention pilot projects show the
actual potential and limitations of applying scientific progress to “field” conditions.
However, while the practical limitations of implementing MTCT prevention should be
taken into account, they should never be used as an excuse to deny resource-constrained
countries and groups access to the fruits of scientific progress. Where resource constraints
limit MTCT prevention, they should be used to trigger action for social and political change
rather than complacency.
f) Involving partners and communities
MTCT prevention activities are usually health facility-based and mostly target pregnant
women alone: the burden of MTCT prevention and the associated risks of stigmatisation and
social rejection seems to be placed exclusively on women. However, men are vital partners in
MTCT prevention and their exclusion is a major cause of poor rates of uptake of MTCT
prevention services (Wagt A de, 2000). Since decisions on pregnancy, delivery and wider
reproductive health issues are seldom taken by women alone, more attention should be given
to involving men, families and communities in MTCT prevention and reproductive health
issues in general. Issues of HIV prevention and care should become a shared family and
community responsibility.
4.3
Key programme components
4.3.1 Counselling services for HIV testing (VCT) and safe
infant feeding
VCT and infant feeding counselling are a conditio sine qua non for effective interventions. It
is clear that voluntary counselling and testing (VCT) is a key component of any MTCT
prevention programme. VCT not only allows women (and men) to know their HIV status,
which is a prerequisite for them to make subsequent decisions on MTCT prevention and
other issues; VCT is also crucial for MTCT-related decision-making, including continuation
or termination of pregnancy, safer sex (during pregnancy) and ARV prophylaxis, safe infant
feeding and family planning, while it also allows for access to a wide variety of preventive
and care services for the mother, including antenatal care, safe delivery and postnatal care,
care and treatment for opportunistic infections and cornmunity-based support groups.
Counselling on MTCT prevention
Current ARV prophylactic regimens seem to be both effective and safe, and are increasingly
becoming affordable options for resource-poor settings. However, availability and access to
ARV prophylactic regimens may differ considerably from one place to the other.
In addition, safe infant feeding options are crucial to avoid postnatal HIV infection through
breastfeeding. This requires difficult decisions on (exclusive) breastfeeding and other infant
feeding options to be made, often based on inconclusive or contradictory information.
26
Counselling is therefore crucial for pregnant women (and their partners and families) to make
informed decisions on the MTCT prevention interventions most appropriate to their personal
situation. Experience shows that adequate counselling services can indeed help women and
men make the best decisions in support of MTCT prevention and other HIV-related issues.
However, counselling is not a cheap service, and the need to scale up MTCT prevention
programmes requires urgent attention for improving the basic requirements of high-quality
counselling, including:
more and better testing facilities
adequate numbers of counselling staff
training and support (to avoid burnout) for counsellors
adequate facilities for counselling (privacy).
In this context, links between the MTCT prevention and infant feeding teams should be
strengthened, and directly involve people trained in breastfeeding counselling.
Experience with MTCT pilot projects and other studies are increasingly showing that lack of
access to counselling services is a critical limitation to scaling up MTCT prevention
programmes. Therefore, the basic requirements mentioned need to be addressed urgently.
4.3.2 Antiretroviral prophylaxis
The advent of relatively effective antiretroviral prophylactic treatment for prevention of
MTCT has opened new opportunities, as well as new challenges.
PACTG 076, a complex regimen involving ZDV, not only proved to be the most effective,
but also the most difficult regimen to implement in resource-poor settings, given its high cost
and complexity of administration.
However, short-course antiretroviral prophylaxis has shown to be relatively effective as
well, which has made MTCT prevention a lot more feasible, as the regimens are easier to
implement and far cheaper. At present, NVP seems to be the cheapest and most cost-effective
intervention. Thus, these short-course regimens have substantially increased access to the
fruits of these scientific developments.
However - as has been made clear - MTCT prevention involves far more than ARV
prophylaxis and a couple of issues still need urgent attention in this field.
AJRVprophylaxis: one element in a comprehensive MTCTprevention package
The experiences with UNICEF’s MTCT prevention pilot studies in a number of non
industrialised countries have brought to light several issues that require attention. E.g., the
lack of access to reproductive health services and voluntary counselling and testing, as well
as problems in the field of safe infant feeding and other areas need urgent attention before
MTCT prevention programmes can be scaled up. Otherwise, there is a risk that these
programmes are reduced to interventions to make antiretroviral prophylaxis available.
Careful monitoring and evaluation of these pilot studies is necessary to identify the critical
factors for success or failure. One lesson learned from these pilot studies and other studies is
their limited applicability to more “standard” conditions in developing countries, as they
often take place under beefed-up conditions. These conditions are seldom achieved once the
programme is expanded to a wider population and the actual effectiveness is likely to be less.
Long-term efficacy and safety
Furthermore, issues of sustainability and feasibility remain important in the context of ARV
prophylaxis. While short-term efficacy and safety do not seem to present serious problems,
27
too little is known about the long-term safety and efficacy of antiretroviral prophylaxis. This
is especially relevant in the context of resource-constrained countries, where other
components of a comprehensive approach to MTCT prevention - such as safe infant feeding
and lack of access to counselling - may indeed threaten not only the initial reduction of
MTCT rates due to ARV treatment, but also the overall impact on infant mortality. In
addition, the use of new drugs or combinations thereof for MTCT prevention needs to be
evaluated.
Long-term support to mother and infant
Increased opportunities to prevent MTCT and higher HIV-free infant survival rates, also
present serious ethical questions in relation to maternal health and rights issues, as well as
future support for an increasing group of vulnerable children, many of whom will not only
lose one or both parents to AIDS, but will also have far less opportunities in life due to
constrained resources, lack of access to education, proper nutrition et cetera.
The relative success of saving infants from becoming HIV-infected, also raises the ethical
question of care and support for the mother’s health and right to access to care and support.
This includes access to highly active antiretroviral treatment, which is increasingly becoming
available in some resource-constrained countries. It also raises questions about access to
treatment of opportunistic infections, as well as psychosocial and other forms of support to
mothers parents and others involved in the care of children infected or affected by
HIV/AIDS.
Improving efficacy and cost-effectiveness of short-course ARV prophylaxis
A number of key issues can be distinguished regarding the actual use of ARV medications for
MTCT prevention. First of all, given the strong relation between MTCT and maternal viral
load (without intervention, MTCT will only occur in the approx. 30% of HIV-infected
women with high viral load), we need to find ways of better distinguishing and selecting this
30% high-risk group, in order to be able to better target MTCT prevention interventions.
Better targeting will allow programmes to become more effective and more cost-effective, as
limited resources will be used more efficiently.
One way to do this would be to determine maternal viral load immediately prior to
delivery. This would not only require far more HIV testing, but also a substantial expansion
of access to voluntary counselling services. After assessment of maternal viral load, two
distinct interventions could be offered: the 30% high-risk (high viral load) group could be
offered antiretroviral prophylaxis, while more efforts and resources would be available to
guarantee safe replacement feeding, in order to minimise the risk of MTCT through
breastfeeding in this group. The underlying assumption would be to avoid breastfeeding as
much as possible, given the fact that 30% of HIV-infected mothers will have high viral loads.
The relatively low-risk group (low viral load) would not require ARV prophylaxis and should
be advised to exclusively breastfeed, without serious risks of MTCT through breastmilk
(Haverkamp, 2001).
In essence, this approach would make replacement feeding safer for the high-risk group,
while breastfeeding would be made safer for the low-risk group. It is obvious that feasibility,
safety, efficacy and cost-effectiveness of this two-group approach would need to be assessed
first, before it could possibly be implemented full-scale.
Another idea that needs further study focuses on making exclusive breastfeeding safer. As the
results of studies on the impact of breastfeeding indicate a direct relationship between MTCT
and duration and pattern of breastfeeding (among other factors), the possibility of also
providing antiretrovirals to infant and/or mother during the period of (exclusive)
breastfeeding (the first 3-6 months at least) seems to be an interesting idea, especially given
the price reductions for various ARV drugs (Wagt A de, 2001).
28
This is a particularly interesting option as “acceptable, feasible, affordable, sustainable and
safe” replacement feeding is not always a viable option in developing countries.
A study is currently going on in which mothers receive ARV prophylactics for 4 weeks
antepartum (ZDV or ddl); after delivery, infants receive a daily dose of NVP or 3TC for a
period of 6 weeks-3 months (alternatively, mothers could be treated after delivery). While
final results are still pending, at current drug prices, the daily doses make this regimen too
expensive for resource-poor countries (Haverkamp, 2001).
4.3.3 Safe infant feeding
The bottom line in safe infant feeding is not to focus on reduced HIV transmission alone, but
on overall child survival. Breastfeeding has important benefits for overall reduction of infant
morbidity and mortality. The risk of MTCT through breastfeeding among HIV-infected
mothers is approximately 20%. Even in countries with an HIV prevalence rate of 30% among
antenatal women, the MTCT risk would only be some 6% of all breastfeeding mothers.
At the same time, the so-called “spill-over” effect to HIV-negative women - which may
occur as a by-result of advising HIV-positive women not to breastfeed - may result in
increased child morbidity and mortality due to diarrhoeal diseases and respiratory infections.
Therefore, breastfeeding needs to be protected for the >90% majority of infants who can
benefit from it, while HIV-positive mothers should be supported in making informed choices
on alternative infant feeding options and assisted in carrying them out.
Finding safer infant feeding options for HIV-infected mothers
In essence, two questions need to be answered:
1) How can we make breastfeeding safer?
2) How can we make replacement feeding safer?
To answer these two questions, it is critical to know when exactly during the breastfeeding
period most HIV transmission takes place. This knowledge can be used to decide on optimum
timing of cessation of breastfeeding and shifting to other forms of safe infant feeding.
Therefore, the issue is not exclusive breastfeeding or formula-feeding, but to find the best
overall safe infant feeding strategy, in accordance with local and personal conditions. This
will often include a period of exclusive breastfeeding during the first 6-12 months (to benefit
from breastmilk’s multiple benefits), followed by safe replacement feeding (to avoid
unnecessary risk of MTCT through breastfeeding, when the child is less dependent on
breastmilk). Furthermore, replacement feeding does not necessarily mean formula, but also
includes alternative, home-based feeding options, often based on existing local practices.
29
Making breastfeeding safer
Given the risks of formula-feeding, only HIV-positive women who can safely use formula
and afford it, should be advised not to breastfeed: in many developing countries this is a
small minority.
So far, one study in South Africa has suggested that exclusive breastfeeding is safer than
mixed feeding (Coutsoudis, 1999). The outcome of this and ongoing studies is critical for the
advice women will be given regarding breastfeeding. If it is confirmed that exclusive
breastfeeding indeed reduces HIV transmission, compared to mixed feeding, it will be a
major thrust to protect and support exclusive breastfeeding. Promotion of exclusive
breastfeeding entails good management of lactation, which encourages proper attachment of
the infant to the nipple and frequent emptying of the breasts, both of which are important for
preventing cracked nipples, engorgement and mastitis, which have been suggested to be risk
factors for transmission of HIV.
However, cultural practices and practical problems will make it difficult to achieve truly
exclusive breastfeeding. In addition, experiences in Ndola, Zambia, have shown that many
mothers do not believe that exclusive breastfeeding can reduce the transmission of HIV,
because this contradicts their knowledge that HIV can be transmitted through breastfeeding
(Wagt A de, 2000). Therefore, promotion of exclusive breastfeeding will require intensive
infant feeding counselling and true support for mothers.
Despite the many questions that still remain around the safety of breastfeeding, a number of
recommendations on infant feeding counselling can already be made:
Strengthening infant feeding counselling: a critical issue
Infant feeding counselling is critical for fully informing women about the relative benefits
and risks of breastfeeding vs. alternative infant feeding options, so that they can make an
informed choice. This does not just mean presenting the different options and leaving the
decision up to the mother: in many settings, women do not go to a health care facility to be
presented with a variety of "choices" that they must then choose for themselves. Most women
rather expect “someone more knowledgeable” (the health worker) to tell them what is the
best solution for their particular situation (Cohen, 2001).
Therefore, the health worker/counsellor should actively support mothers in making their
decision and in carrying it out: those who choose to breastfeed - no matter their HIV status should be encouraged and supported to breastfeed exclusively for about 6 months.
A woman’s decision not to breastfeed often comes with personal risks, including the stigma
or suspicion of being infected with HIV, which may carry grave social, emotional, and even
physical consequences. Therefore, individual counselling must cover not only the risks of
morbidity and mortality for the infant but also the potential consequences for the mother
(Preble & Piwoz, 2001).
To avoid possible stigma associated with infant feeding counselling, efforts to support
breastfeeding and appropriate infant feeding practices must be strengthened where M1 CT
prevention programmes are being implemented so that health workers feel comfortable
counselling all women and not only those who know their HIV-status. (Preble & Piwoz,
2001) This will also minimise confusion about HIV and breastfeeding and avoid the erosion
of breastfeeding in the general population (“spill-over”).
Safer sex should be promoted for uninfected pregnant and breastfeeding women, as recent
HIV infection is associated with very high viral load, and an increased risk of MTCT. In
30
addition, safer sex should of course always be promoted for primary prevention of HIV
infection in men and women.
Wet nursing practices should be avoided, especially the practice in some health care
institutions of “pooling” breastmilk from several women, which is then used to provide
breastmilk to infants whose mothers cannot breastfeed themselves. There is evidence that wet
nursing practices are indeed declining, as a result of counselling (Haverkamp, 2001).
Making replacement feeding safer
While exclusive breastfeeding Offers important benefits to all infants, irrespective of their
mother’s HIV status, breastfeeding by HIV-infected mothers always carries a substantial risk
of MTCT. Besides, its relative advantages over mixed feeding still need to be confirmed.
At a certain point in time, the relative benefits of exclusive breastfeeding are outweighed by
its incremental risks of MTCT. Therefore, the period of exclusive breastfeeding should be
kept as short as possible, to avoid unnecessary risk of MTCT.
However, there is no data about when is the best moment to stop breastfeeding and start
replacement feeding. Recommendations vary from a minimum of 6 weeks to 3 months, up to
12 months of exclusive breastfeeding. More research is clearly needed to provide better
insights.
What is seen in practice is that the breastfeeding period is getting shorter: 6 weeks-6
months (Haverkamp, 2001). However, it is very difficult to assess the relative mortality risk
of breastfeeding, cow’s milk or formula.
Transition to safe infant feeding alternatives
In any case, the current state of knowledge suggests that mixed feeding should be avoided at
all times, given the associated higher risk of MTCT. This implies that the transition period
from exclusive breastfeeding to other forms of infant feeding should be limited to a strict
minimum.
The key question is how feasible is it to achieve really exclusive breastfeeding for at least 6
months (see above) and realise a drastic, almost instantaneous, shift to safe replacement
feeding. In addition, it is not clear what would be the best replacement feeding.
The problem here, too, is that we don't know how mothers can make this switch rapidly: any
rapid cessation of breastfeeding is difficult: it can lead to mastitis and other breast health
problems (Lhotska, 2001). The mother would always need to express her breastmilk for a
certain period; this could then be heat-treated. A study in Pretoria, South Africa, has shown
some good results with pasteurisation under household conditions.
At a certain point, the infant would need complementary foods, such as cow’s milk (possibly
enriched with sugar), or formula. The question here is how can programmes ensure adequate
replacement feeding between 6 and 24 months.
Implementing the International BMS Code
Implementation of the International Code of Marketing of Breast-milk Substitutes (BMS) has
become even more important in the context of HIV and infant feeding. The code protects
artificially-fed infants by ensuring that the choice of replacement feeding is made on the basis
of non-commercial information and that all products are clearly labelled to ensure safe
preparation and use. The Code also addresses issues of minimum supplies of formula and
avoiding “spill-over”.
31
Countries providing free or subsidised infant formula to HIV-infected women who choose
not to breastfeed, should put monitoring mechanisms in place to avoid “spill-over” of
breastmilk substitutes: formula should be used exclusively (i.e., women who choose to use
infant formula should not breastfeed as well) and appropriately.
Another Code requirement is to ensure a minimum supply of formula for 6 months for
each infant. A pilot study in Rwanda seems to indicate that this international standard should
be extended beyond 6 months. Normally, breastmilk still covers 50% of a baby’s needs after
6 months; thus, it is increasingly clear that some form of milk is necessary after 6 months for
the replacement feeding to be of an adequate nutritional quality (Lhotska, 2001).
Some countries have developed their own national codes: these should be adhered to and
enforced in all MTCT interventions involving BMS. Countries that have not implemented the
Code at the national level should be encouraged to do so (Preble & Piwoz, 2001; Wagt A de,
2000).
Specific formula feeding issues
In order to provide formula in the context of MTCT prevention programmes in an appropriate
way, a number of questions need to be answered first:
• How to provide formula to HIV-positive mothers who choose to formula-feed in a
confidential manner to avoid stigmatisation and social rejection?
• How to ensure that individual teaching of preparation of formula feeds (commercial or
home-prepared) can be carried out in maternity settings in a manner that ensures that
mothers/caregivers can handle these practices in a safe, sustainable and acceptable way,
including cup feeding?
• How to put in place adequate arrangements for follow-up of safe use of the product
within households?
• What are the various cost implications for women/families in household resources in case
artificial feeding becomes the preferred option: women's time, fuel, water, utensils,
household organisation, birth spacing?
• What are the outcomes in infant health, nutrition and development of use of generic
formula and other replacement feeding?
Formula feeding has always been a political issue, and continues to be so in the context of
MTCT. Some people accuse the formula industry of trying to use MTCT prevention to
improve its image. In some cases, the industry still seems to try and sneak around the
International Code. In a recent article on the international press, the industry has been
successful in portraying UNICEF as a key obstacle to MTCT prevention, as it continues to
insist on strictly applying the Code in MTCT settings as well (Wall Street Journal, Dec.
2000). The negative impact of these articles in the press may make it necessary to monitor
media coverage of MTCT, including infant feeding issues, to ensure that coverage is accurate
and does not create confusion about appropriate feeding practices. (Preble & Piwoz, 2001).
Household options for safe infant feeding
Many questions still surround the issue of feasibility of exclusive breastfeeding vs. formula.
There may be other options than these two, but we don’t know the feasibility of using the
various infant feeding options that have been identified at the household level. For example,
home-prepared formula seems to be a feasible option, e.g. cow’s milk as supplement or in a
way treated (e.g. adding sugar). Another possible option is a complex of micronutrients, a
tiny package that can be used with one feed (per day). Feasibility studies on this are difficult
to conduct, in particular because the necessary human resources to do this are lacking.
32
5.
CONCLUSIONS
While a vast body of knowledge and experience exists regarding mother-to-child
transmission of HIV and its prevention, key questions still remain unanswered, especially in
the field of safe infant feeding.
While this makes it difficult to provide clear guidelines and policy recommendations for
MTCT prevention in general - and safe infant feeding in particular — the bottom line in
MTCT prevention policies should be to focus on the overall impact on infant morbidity and
mortality, not just on reducing MTCT prevention rates per se. Therefore, it is necessary to
weigh the benefits and risks of breastfeeding vs. replacement feeding, making both
breastfeeding and replacement feeding safer.
Voluntary counselling and testing (VCT) and counselling on safe infant feeding are key
elements for successful MTCT prevention, as counselling allows women to make informed
decisions - with the support of health staff and counsellors — on MTCT prevention in their
personal situation. Therefore, increased access to high-quality counselling services is a key
priority.
Since short-course antiretroviral prophylaxis seems to be safe and effective, and can be made
available at low cost, use of these ARV regimens should be promoted in the context of
MTCT prevention.
Involving men is not only crucial because of their important role in decision-making
regarding infant feeding and other elements of MTCT prevention, but also because of their
obvious role in preventing unwanted pregnancies in HIV-infected women and primary
prevention of HIV infection in sexually active men and women. 25% of couples where one
partner tests HIV-positive, turn out to be serodiscordant, making primary prevention among
couples a particularly burning issue. Safe sex is even more important during pregnancy and
breastfeeding, because recent infection is associated with high maternal viral load and
increased risk of MTCT. Given men’s crucial role in MTCT, the term parent-to-child
transmission is in fact more appropriate.
More basic research is needed, especially to identify the safest infant feeding options in
resource-poor settings, while currently ongoing pilot progammes should be scaled up to allow
more parents and children to benefit from MTCT prevention interventions. Careful
monitoring and evaluation of these interventions is needed to provide the missing information
on feasibility and efficacy of MTCT prevention in actual field conditions.
Finally, while MTCT prevention requires a comprehensive package of interventions including structural strengthening of services and facilities - the obvious difficulty to realise
this on the short term should not be used as an excuse for inaction and complacency: the
appropriateness of any combination of MTCT prevention interventions should be determined
at country level, adapting international guidelines and policies to local situations. These local
solutions deserve our support.
33
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36
List of abbreviations used
•
’
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
AIDS: acquired immuno-dcficicncy syndrome
ART: antiretroviral treatment
ARV: antiretroviral
AZT: zidovudine (ZDV)
ddl: didanosine
HAART: highly active antiretroviral treatment
HIV: human immunodeficiency virus
IATEC: International Antiretroviral Therapy Evaluation Centre
IATT: (UNFPA/UNICEF/WHO/UNAIDS) Inter-Agency Task Team (on Mother-to-Child
Transmission of HIV
IMR: infant mortality rate
MTCT: mother-to-child transmission
NVP: nevirapine
PEP: post-exposure prophylaxis
PETRA: perinatal transmission
PLWHA: person/people living with HIV/AIDS
3TC: lamivudinc
UN: United Nations
UNAIDS: United Nations Programme on HIV/AIDS
UNFPA: United Nations Population Fund
UNICEF: United Nations Children’s Fund
VCT: voluntary counselling and testing
WHO: World Health Organization
ZDV: zidovudine
37
12
MATERIAL ON HIV/AIDS
SENT BY
MEDICAL MISSION INSTITUTE
UNIT FOR HEALTH SERVICES AND HIV/AIDS
SALVATORSTR. 22
D-97074 WURZBURG
GERMANY
June 2001
Journal of Health Communication, Volume
5 (Supplement), pp. 101-111, 2000
Copyright TJ 2000 Taylor & Francis
1081-0730/00 $12.00 + .00
Foward a New Communications Framework for
HIV/AIDS
COLLINS O. AIRHIHENBUWA
Pennsylvania State University
University Park, Pennsylvania, USA
BUNMI MAKINWA
UNAIDS
Geneva, Switzerland
RAFAEL OBREGON
Univcrsidad del Norte
Colombia, South America
In response to the overwhelming burden of new cases of human immunodeficiency
virus (HIV) in Africa, Asia, Latin America, and the Caribbean, the Joint United
Nations Programme on HIV/AIDS (UNAIDS), in 1997, initiated a project to
examine the application of existing communication theories/models to HIV/
acquired immune deficiency virus (AIDS) prevention and care in these regions. In
the past 2 years, 103 leading researchers and practitioners from different parts of
the world were invited by the UNAIDS to participate in one of five consultative
workshops designed to review these theories/models and rethink their adequacy for
Africa, Asia, Latin America, and the Caribbean. A new communications framework
for HIV/AIDS was developed to move from a focus on the individual to a focus on
five domains of "contexts" that influence behaviors: government policy, socioeco
nomic status (SES), culture, gender relations, and spirituality.
Introduction
UNAIDS (1999) has reported that 90% of the new cases of HIV are in Africa, Asia,
Latin American, and the Caribbean. Given the reality of the epidemic, information,
education, and communication on HIV/AIDS is still very important to reduce the
spread of the disease and to strengthen efforts and programs in care and support.
Also, there is a need for an evaluation of current approaches to prevention and care,
especially in terms of the relevance of theories and models currently used to guide
HIV/AIDS communications in Africa, Asia, Latin America, and the Caribbean. Spe
cifically, what are the strengths and weaknesses of existing theories and models used
in HIV/AIDS communication? How well has communication been a factor in
behavior change? What are the new challenges in HIV/AIDS communications in
light of the discovering and attendant media coverage of the new combination drug
therapies and efforts to develop an HIV vaccine? What are the ethical and practical
Address correspondence to Collins O. Airhihenbuwa, Ph.D., Associate Professor of Behavioral
Health, Department of Biobehavioral Health, Pennsylvania State University, 304 East Health and
Human Development, University Park, PA 16802, USA. E-mail: aou@psu.edu
101
102
C. 0. Airhihenbuwa et al.
issues such as affordability of these new drugs by governments and individuals and
how do they affect decisions and policies on prevention? Even if these drugs were
affordable, availability and accessibility cannot be taken for granted, and indeed the
capability of skilled medical personnel and institutions to monitor compliance and
adherence to drug regimens is problematic (Makinwa, 1997). These questions
prompted UNAIDS to initiate a project designed to evaluate the adequacy of theo
ries and models used in HIV/AIDS communications, particularly in Africa, Asia,
Latin American, and the Caribbean.
This article discusses the five contextual domains—government policy, SES,
culture, gender relations, and spirituality—that were identified in five UNAIDS con
sultative workshops implemented by Pennsylvania State University. These domains
now form the cornerstone of the UNAIDS new communications framework for
HIV/AIDS. Although this framework was developed under the rubric of communi
cations, it should be noted that it is considered relevant to all aspects and strategies
(e.g., human rights) of HIV/AIDS prevention, care, and support. The development of
the plan is based on collective experiences gained from several years of HIV/AIDS
prevention, care, and support programs worldwide.
Background
Trends in HIV seroprevalence show that about 90% of all the new cases occur in
Africa, Asia, Latin America, and the Caribbean and that nearly 95% of people living
with HIV/AIDS are in the developing world (UNAIDS, 1999). UNAIDS and the
World Health Organization (WHO) estimate that 33.6 million people were living
with HIV at the end of 1999 (UNAIDS, 1999). Although sub-Saharan Africa bears
the major burden of HIV (close to 70%), it is estimated that by the year 2005, India
alone will have more HIV/AIDS cases than the entire continent of Africa (Fogarty
Workshop, 1998). The projections for China are equally alarming although current
reported cases appear to be low.
The discovery of antiretroviral drugs may have brought some hope; however,
“the vast majority of people living with HIV are in the developing world, access to
anti-retroviral drugs for most is difficult if not impossible, and consequently mortal
ity rates are unlikely to decline” (UNAIDS Progress Report, 1998, p. 8). In a 1997
World Bank Policy Report, entitled Confronting AIDS, persuasive evidence was
offered demonstrating that, particularly in countries where the disease is still
believed to be nascent, “an early, active government response encouraging safer
behavior among those most likely to contract and spread the virus has the potential
to avert untold suffering and save millions of lives” (p. xv).
Thus prevention of HIV/AIDS infections remains crucial to curb the epidemic.
Central to prevention strategies designed to transform individual and normative
behavior in a society is communications. Yet despite several years of HIV/AIDS
communication programs in developing countries infection rates continue to rise.
Therefore, an evaluation of communication theories and approaches to HIV/AIDS
prevention and care (see the article by Airhihenbuwa and Obregon in this volume)
was necessary to verify their adequacy particularly in parts of the world that bear
the burden of the pandemic.
The need for a new framework is further underscored by the increasing recogni
tion that HIV/AIDS communication programs should address the full “HIV/AIDS
continuum,” which covers not only prevention but also care and support. This con
tinuum involves planning and program implementation on a sustained, coherent,
New HIV/AIDS Communication Framework
103
and long-term basis within various phases of HIV/AIDS through prevention, care,
support, and management of the disease.
UNAIDS and the Future of Communications for HIV
Between 1997 and 1999, 103 researchers and practitioners were invited to partici
pate in two global (Geneva and Washington, DC) and three regional (Abidjan for
Africa, Bangkok for Asia, and Santo Domingo for Latin America and the
Caribbean) consultative meetings. A mixed group of practitioners and scholars in
communication and behavioral sciences represented Africa, Asia, Latin America,
and the Caribbean as well as North America and Europe. Meetings were designed
■to review past and current approaches to HIV/AIDS communications and behavior
change and propose new directions that will accommodate a global and regional
framework yet remain flexible enough for adaptation by countries and organi
zations. This effort involved synthesis of experiences from Latin America and the
Caribbean, Africa, and Asia at consultative workshops through a participatory
process, guided by inputs of experts on the methodology and outcomes. As indi
cated earlier, five domains were identified, by consensus as critical factors in the
physical and social environment that influence health behaviors related to preven
tion, care, and support. These domains are crucial to effectiveness of HIV/AIDS
communication programs since they permeate and affect decision making in the
context of HIV/AIDS. The discussions on regional issues also led to the identifica
tion of specific domains that have particular relevance to each region. For instance,
in Latin America and the Caribbean the framework should emphasize advocacy as
a crucial component, whereas in Africa community involvement was seen as funda
mental.
Context as a Focus for a New Framework
The limitation of focusing on the individual at the exclusion of the context has long
been a concern for leading research organizations. The Institute of Medicine (1994)
in the United States raised this concern in its report on the future of preventive
intervention research. Similarly, the Rockefeller Foundation sounded a call for a
paradigm shift in its report on communication for social change (1999). Increasingly,
researchers (Kelly, 1999; McKinlay & Marceau, 1999) are questioning the serious
methodological limitations in focusing on individuals to change their health behav
ior without adequate attention to social and physical environmental factors that
shape individual roles and expectations and thus their health behavior. Thus the
identification of the five contextual domains is quite consistent with the call by
institutions, scholars, and practitioners to develop a new direction for disease pre
vention.
Participants acknowledged that the individual is a crucial part of the context
and that the new framework should recognize the role of the individual even though
it is focusing on the context. To this extent, the new framework could draw on
salient elements of existing theories and models. For example, the use of opinion
leaders, a major component of diffusion of innovations, could be incorporated at the
operational level by regions, countries, and communities as deemed appropriate.
Such flexibility is a major feature of the new framework recognizing differences in
cultures and locations. A discussion of the characteristics of each domain of the
contextual framework follows.
104
C. 0. Airhihenhuwa et al.
The framework (UNAIDS Penn State. 1999) is represented as a house whose
structure varies according to regions and countries. Every house has a foundation, a
roof, and a body designed to respond to the conditions in the environment—the
context. In the new HIV/A1DS communications framework, the live domains are
represented in the foundation, the roof, and the body of the house depending on the
goals, objectives, and strategies that will be employed in a given communications
program. For example, communication programs for condom availability and use
by clients of commercial sex workers may locate -the government at the roof in terms
of policy to mandate 100% availability and use of condoms. At the same time,
gender can be located at the foundation to address the role and societal expectation
of women in sexual negotiation while carefully examining the interrelatedness of
other contextual domains—culture. SES, and religion. On the other hand, the
reported inability to translate public awareness into positive health behavior may
necessitate locating the government at the roof. This will be crucial in terms of
political will to invest in varied strategies to focus on different population subgroups
while locating culture at the foundation in terms of utilizing known aspects of learn
ing processes within the culture to move families and communities from awareness
to behavior change. In this latter example, the role of gender, SES, and religion will
be examined in determining appropriate strategy.
Finally, as one would expect in any house (Figure 1), there should be doors for
entrance and exit. In this framework, the double door will have the key issues and
processes for implementing a strategy on one panel and the key steps and processes
for evaluation on the other panel. The windows will offer opportunity for every
region and country to address their specific conditions consistent with the stage of
the epidemic in their context.
Government and Policy
Governmental policy and law play a critical role in programs aimed at controlling
the spread of HIV/AIDS (World Bank, 1997). Diop, in this volume, demonstrated
how government action in Senegal has been a major factor in keeping the epidemic
under control. Phoolcharoen (1998) reports how early government intervention at
the policy level became a key factor in the successful response of Thailand to the
HIV/AIDS epidemic. The government quickly introduced legislation that supported
nongovernmental organizations (NGOs) and community organizations’ prevention
efforts. Similarly, Maadra and Ruranga-Rubaramira (1998) have pointed out that in
Uganda “the openness of the government has created a conducive environment for
interested agencies and organizations working in HIV/AIDS activities to work
together” (p. 53). This attitude, coupled with political will on behalf of government
officials, is highlighted as an important element in the Ugandan efforts to control
the epidemic.
Government policy can either promote or hinder efforts at reaching the goals of
HIV/AIDS communications programs. Yet, according to Deane (1997) the reality is
that public debate on HIV/AIDS issues remains, in many countries, too often
poorly informed, sensationalist, and damaging to HIV/AIDS prevention. There are
ethical, legal, and financial considerations that must be taken into account when
discussing and planning communications programming to address these issues.
Some of these challenges could be met by working through regional organizations
such as Economic Community of West African States (ECOWAS), Southern African
Development Community (SADC), Association of South East Asian Nations
New HIV/ Al DS Communication Framework
FIGURE 1.
105
House to home.
(ASEAN), Organization of American States (OAS), Caribbean Community and
Common Market (CARICOM), and Central American Common Market (CACM),
which can provide important channels for addressing some regional issues relating
to HIV/AIDS. Some of the critical issues identified in this domain are as follows.
Agenda Setting
Role of government in setting the media agenda and how HIV/AIDS fits into it
should be a part of the initial information gathering and analysis.
Image Management
Issues of tourism, migration, violence, and rape of women by military men
require government support for adequate solution.
Collaboration
An important role of government is fostering interregional and intraregional
collaboration in HIV/AIDS programs such as sharing lessons learned within and
between regions and facilitating cross-border interventions.
106
C. O. Airhihenbuwa et al.
SES
Economic status is an individual, group, and governmental factor in terms of ade
quate supply and consistent use of condoms as well as affordability of combination
drug therapy in places where they arc available. The contribution by Melkote,
Muppidi, and Goswami in this volume discusses various studies and reports that
have dealt with SES and various aspects related to AIDS in the developing world.
Women with lower income and education report lower knowledge about HIV
transmission and more misconceptions about AIDS. In fact, perception of risk was
almost nonexistent among this impoverished population. Thus, socioeconomic
context is a crucial domain to be examined in communication strategies for HIV/
AIDS. Furthermore, studies have shown that the commonly used criteria for SES
(occupation, income, and education) do not reflect how the context differentiates
between two individuals who share these characteristics (King & Williams, 1995).
For example, two individuals earning the same salary may have different family
obligations. For instance, a first-generation middle-class person tends to be finan
cially responsible for more family members than a fourth-generation middle-class
person. Higher education, income, and occupation may not equally leverage a
woman’s ability to negotiate the sexual behavior of her partner. The following are
key issues related to SES that must be considered in the framework.
Issues of Affordability
Affordability is a crucial indicator of SES, especially in clinical interventions
such as combination drug therapy and technological interventions such as condoms.
Many governments and most individuals cannot afford combination drug therapy
even if it were available.
Compliance and Adherence
Even if the combination drug therapy is available, the potential difficulty with
compliance and adherence makes preventive messages even more crucial. This is
particularly salient for sustainability of behavioral outcome beyond the end of a
planned intervention.
A Social and Developmental Problem
HIV/AIDS should be considered a developmental and a social problem. As a
result the pandemic should be addressed within the context of other social and
development problems in the regions relative to allocation and distribution of
resources. Given that HIV/AIDS is a developmental problem, issues of accessibility
of health care in general must be analyzed within a given context and the result
incorporated into the planning of HIV/AIDS communications for media and inter
personal communications.
Culture
Culture refers to a collective consciousness of a people often shaped by a shared ,
history, language, and psychology. As the contribution by Airhihenbuwa and
Obregon in this volume indicates, culture is too often appropriated as a static and
unchanging set of codes and meanings. Armed with a list of negative individual
health beliefs and practices, the conclusion inevitably leads to blaming those beliefs
and calling them cultural barriers. Western cultures, to varying degrees, tend to view
New HIV/AIDS Communication Framework.
107
the self as a production of the individual, whereas many other cultures view the self
as a production of the family, community, and other environmental influences for
which we do not have, or desire, total control. The following key issues related to
culture were considered in the framework.
Language Elasticity
This refers to differences in rules and codes of languages (Airhihenbuwa, 1999).
Whereas some languages may be rigid and linear in their application, others are
elastic and robust. A linear and rigid rule in cultural production (as in classical
music) should not be applied to an elastic and robust cultural production (as in jazz
or calypso). By the same token, that a language is elastic docs not suggest that such
language lacks direction, nor does it imply that the rules are simple and easily
understood.
Relationships within the Family and Community
This should be explored particularly in the context of making decisions about adop
tion of preventive health behavior and caring for the ill. The centrality of family and
community rather than the individual in decision making must be taken into
account. That is, the focus must be on group and family more than just on the
individual. In fact, individual beliefs do not necessarily explain the cultural context
even though such beliefs may be a part of the culture. It is critical to understand
who the caregivers are and their role in a culture. For example, the use of home
based care in many cultures requires a systematic and regular information update to
improve patient management and support.
Gender
Gender has been increasingly recognized as one of the key dimensions in efforts
aimed at transforming and improving the lives of large numbers of people and
around the world. Mendoza provides a comprehensive definition of gender:
Gender is what it means to be a male or a female and how that defines a
person’s opportunities, role, responsibilities, and relationships. Gender is a
sociocultural variable and refers to the roles, behavior, and personal iden
tities that the society or culture proscribes as proper for women and men.
These attributes, opportunities, and relationships are socially constructed
and learnt through socialization processes. Gender roles vary across deter
minants such as race, culture, community, time, ethnicity, occupation, age,
level of education. While sex is biological, gender is socially defined. (1997,
p. 1)
In HIV/AIDS communication gender plays an important role in defining how
programs respond to the needs of both men and women. This means creating sup
portive environments that would allow males and females to have adequate means
of protection against the disease as well as access to care and support when infected.
For instance, numerous HIV/AIDS prevention programs have been carried out with
a gender-based approach. However, a closer look suggests some key problems that
hinder women's equal chances of benefiting from these programs. Mendoza (1997)
argues that these programs are related to gender roles in a society and include
C. O. Airhihenbuwa et al.
108
sexual norms that limit women's access to information by implying that they must
be ignorant about sexual matters. Also, women's economic dependence on men,
violence against women, and widespread acceptance of male promiscuity have
worked against women’s chances of protection against the disease. For instance, in
Zimbabwe, Kenya, South Africa, and Zaire, the increasing financial insecurity that
exists among a large number of female-headed households make transactional sex a
“rational means of making ends meet" (Social Science Medicine, 1993, p. iii; also
Gill & Mohammed, 1994).
Researchers and practitioners convened by UNAIDS agreed that in addition to
suggestions made at recent international conferences on population and women
issues, H1V/AIDS communication must take into account other dimensions. The
following arc key issues related to gender considered in the framework.
Male)Female Relationships
Attention should be paid to the roles and responsibilities of men and women, to
sociocultural factors, and to how these factors affect their relationship. There must
be recognition that in addressing gender, we are referring to not only women but
also to men. It is critical to understand gender roles and the relations of power and
negotiation within and between those roles.
Stereotyping
Communication materials should be designed to eliminate negative stereotypes
of women and, on the contrary, used to promote positive images of women. Gender
equity might be increased through reduction of negative stereotypes of men and
women, which may influence ways and modes HIV is or has been spreading in the
community.
Inclusiveness of Women in Planning
Needs assessment must have a gender analysis component. Gender issues
should be taken into consideration not only at the initial stage of planning a com
munication program but also through implementation and evaluation of those pro
grams. In communication programs for young people, be it formal or informal
education, it is important to take into account that both boys and girls are being
targeted, as opposed to targeting a mass of young people only.
Spirituality
Spirituality is a much broader and a more inclusive concept than religion even
though the two terms are often used interchangeably. According to Relv (1997)
Spirituality encompasses hope; faith; self-transcendence; a will or desire to
live; the identification of meaning, purpose and fulfillment in life; the
recognition of mortality; a relationship with a “higher power,’’ “higher
being” or “ultimate,” and the maintenance of interpersonal and intra
personal relationships. (P. 2)
Evidence from HIV/AIDS literature shows that there is a relation between spiritual
ity and HIV/AIDS (Gray, 1997). This and the increasing urgency of the epidemic
has prompted the World Council of Churches’ Executive Committee (1997) to issue
a challenge to all churches to respond to the urgent call for actions resulting from
New HIV/AIDS Communication Framework
109
the spread of HIV/AIDS worldwide. Spirituality encompasses beliefs and value
systems that range from organized religion to individual or collective values or both
whose belief represent a guiding principle on which meanings arc based. Spirituality
is grounded in the belief that there is a supernatural being/force that regulates the
interaction of living beings with their visible and nonvisible environment. The scien
tific literature has given increased attention to the link between spirituality and
positive health behavior. This link has always been known to exist among tradi
tional healers whose healing modality is in part based on the belief in the power of
supernatural forces to regulate human behavior (Airhihenbuwa, 1995). The follow
ing are key issues related to spirituality to be considered in the framework.
Leadership Initiatives
Leaders of the different religious organizations have important roles to play in
HIV/AIDS prevention and care. At the very least, they can appeal to the moral
conscience of their followers. Most importantly, they can provide a supportive
environment for persons and families of persons living with HIV/AIDS.
Tolerance
One cannot assume that religion is a hindrance and that tenets are the same in
all countries. For example, Senegal is 95% Muslim, and yet condom use appears to
be readily accepted in the country, if the current high level of distribution and con
sumption serves as an indication.
Mind and Body
Traditional healers should be involved in planning of programs where possible.
Conclusion
The long-term solution to bridging symbolic and material inequity lies in structural
reforms that change the manner in which resources are distributed in society.
However, such transformations cannot be achieved in a short span of time. In the
context of HIV/AIDS, short- and medium-term solutions are needed to alleviate the
impact of AIDS along with long-term change strategies. The contextual domains
present some challenges to be addressed since they do not lend themselves to linear
intervention strategies directed to solving a problem without focusing on the causes.
In fact, many of the relative success stories reported to date can be attributed to a
focus on one or more of the five contextual domains identified. A focus on context
not only addresses the physical and social environment, it also recognizes the
importance of bringing a project to scale rather than perpetuating pilot projects
only that focus on individual behavior. As the contributions in this volume show,
countries are reporting success in their collective efforts to address HIV/AIDS
through a focus on government policy (Diop), SES (Melkote, Muppidi & Goswami),
culture (Airhihenbuwa & Obregon; Diop), gender (Esu-Williams; Melkote et al.)
and spirituality (Diop). Peter Piot, executive director of UNAIDS, has called for
social vaccines to aggressively control HIV/AIDS. These social vaccines include
promoting continuation of mass education about HIV/AIDS prevention, 100%
condom policy, nondiscrimination against persons living with HIV/AIDS, and a
protective environment for disclosure. Achieving these important objectives will
110
C. O. Airhihenbuwa et al.
require collective efforts at different levels. The new UNAIDS framework offers an
opportunity to meet these challenges.
References
Airhihenbuwa, C. O. (1999). Of culture and multiverse: renouncing “the universal truth’' in
health. Journal of Health Education, 30(3), 267-273.
Deane, J. (1997). Surrendering the agenda: The future of HIV/A1DS communications. Paper
presented at the UNAIDS Consultation Meeting on Communications Programming,
Geneva, Switzerland. November 7-11.
Fogarty Workshop on International HIV/AIDS Prevention Research Opportunities. (1998).
University of California, San Francisco (UCSF) AIDS Research Institute. San Francisco,
CA, April 17-20.
Gill, H., & Mohammed, S. (1994). Factors affecting control of AIDS in Nigeria. International
Conference on AIDS, 10(2), 252 (abstract no. PC0371), August 7-12.
Gray, J. (1997). Spiritual perspective on social support in women with HIV infection: Pilot
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Maadra, E., & Ruranga-Rubaramira, M. (1998). Experience from Uganda, in UNAIDS: Part
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Phoolcharoen, W. (1998). Experience from Thailand, in UNAIDS: Partners in prevention:
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Switzerland: UNAIDS.
Relv, M. V. (1997). Illuminating meaning and transforming issues of spirituality in HIV
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13
MATERIAL ON HIV/AIDS
SENT BY
MEDICAL MISSION INSTITUTE
UNIT FOR HEALTH SERVICES AND HIV/AIDS
SALVATORSTR. 22
D-97074 WURZBURG
GERMANY
June 2001
Journal of Health Communication, Volume 5 (Supplement), pp. 113- 117. 2000
Copyright'C, 2000 Taylor & Francis
4U n?
10X1-0730/00 SI2.00 + .00
Lessons from the Field
From Government Policy to Community-Based
Communication Strategies in Africa: Lessons from
Senegal and Uganda
WALY DIOP
West Africa Project to Combat AIDS, CCISD
Senegal, Africa
Introduction
More than a decade after the appearance of acquired immune deficiency syndrome
(AIDS) cases in West Africa, the rate of HIV infection remains low in Senegal
(between 1% and 1.6%). Naturally, this relatively stable rate, confirmed through
regular epidemiological surveillance, appears to be an exception in a region where
the infection rates range from 3% to 10%. It is this fact that has created growing
interest among researchers and practitioners in recent years. However, the low infec
tion rate at the national level conceals some worrisome situations in some parts of
the country. As early as 1989, Fadel Kane et al. (1993) documented, in an epidemio
logical study, an HIV 1 infection rate of 10% among the spouses of emigrants in the
Matam zone. This region situated in the north of Senegal is well known for its
singularly high rate of emigration. Another study conducted in localities within the
Zinguinchor region in the south of the country had produced nearly the same
results. However, for those who have followed closely the evolution of AIDS in
Senegal, it can be maintained that there was not really an epidemic of human immu
nodeficiency virus (HIV) to date within any single group.
Several factors can explain this Senegalese “exception.” These factors can at
once be linked to the performance of one of the oldest programs addressing sexually
transmitted diseases (STDs)/AIDS in the region and also the sociocultural, religious,
and political influences. In fact, many anthropological studies have brought to light
a certain number of factors that should explain the lower exposure to HIV risk in
the Senegalese population. These factors include: the universality of marriage; rapid
remarriage of widow(er)s and divorced persons; a severe moral condemnation of all
forms of cohabitation not sanctioned by a religious act and that may involve sexual
rapport; and social networks that serve to control irresponsible sexuality (extended
family circles of step-parents, cousins, relatives, neighbors, and so on). Even though
long years of economic crisis along with a rapid urbanization have combined to
change sexual morals especially in the big cities, there still remains deep rooted
Address correspondence to Waly Diop, BP 7670, Dakar-Medina, Senegal, Africa. E-mail:
waly.diop@ccisd.bf
113
114
IV. Diop
control over an individual’s sexuality by family and society in general. Fear o is
honoring one's family and the subsequent “what will they say notion plagues t e
individual's conscience. In addition, familial and social solidarity is maintained even
during economic crisis or even its attendant unemployment.
Yet it can be affirmed without a doubt that the major factor that triggered the
fight against AIDS in Senegal was the absence of denial. Health officials recognized
the existence of the disease very early in 1986. even through only the first six cases
were recorded. The mass media became involved, followed by nonprofit organi
zations and community associations. Al! these efforts were reinforced in 1988 by the
testimonials on television of two people living with HIV. It could even be said that
Senegal initiated the fight against AIDS before the disease could gain a foothold in
the country.
Role of Government
Senegal is the only country in the region to have a legislation regulating commercial
sex, as a part of the control of STDs. A 1962 decree and a series of laws (Law 63-17
on February 5, 1963, Law 66-21 on February 1, 1966, Law 69-27 on April 23, 1969)
established the conditions for the practice of prostitution and set the framework for
the fight against STDs. Accordingly, plans for the control of STDs incorporating the
use of medical and social personnel were implemented in all of the capitals of the 10
regions of the country and at the departmental level (subdivisions of the regions)
throughout the 1970s. Such a policy, with its regular police enforcement, requires
commercial sex workers (CSWs) to make use of regular medical services, notwith
standing the fact that the social context frowns on commercial sex. This unique and
specialized plan for the treatment of STDs has allowed the health system to main
tain control of the disease by regular treatment of CSWs. The system also includes
counseling of sex workers to use condoms. All this occurred more than 10 years
before the advent of HIV. It was thus a natural transition for the national HIV/
AIDS and STDs programs to become resolutely engaged in strategies to take charge
of HIV, a form of STD.
From 1989 to 1997 HIV infection rate among CSWs varied between 6% and
36% with a downward trend supported by vigorous educational campaigns and the
promotion of condom use. An important point that must be taken into consider
ation in the analysis of the measures of combating AIDS is that in the course of the
last 10 years, Senegal has become one of the leading consumers of condoms thanks
to the national program of family planning, the “Programme national de lulte
contre le SIDA” (National AIDS Control Program [NACP]), and nonprofit organi
zations. These efforts were discreet and made without any public social marketing of
condoms. The quantity of condoms distributed through the NACP alone has
increased from 800,000 units in 1988 to more than 7 million in 1996. Statistics on
the use of condoms show an appreciable success in terms of their availability and
accessibility. The 1997 study on sexual behavior reveals that 67% of men and 45%
of women reported that they consistently used condoms in their casual sexual rela
tions. These rates are particularly higher among widow(er)s, divorced and separated
couples who (for diverse reasons, especially- economic) could have new and
occasional partners. Among CSWs of the big urban centers the rate of condom use
is more than 90%.
The government strategy has supported the activities of civil society organi
zations through dissemination of their valuable works, praising them through the
media and providing resources directly to support their programs. Many journalists
Communication Strategies in Africa
115
have been trained by not-for-profit projects such as the Family Health International
AIDS Control and Prevention (AIDSCAP) project and the Canadian project to give
them the necessary tools to develop information and sensitization programs on a
permanent basis, regardless of the health issue or problem. The NACP has involved
other sectors such as political parties, unions, and businesses, in HIV/AIDS pro
grams.
Another important factor is the political engagement of key leaders in the
country. Through dialogue with parliamentarians who each took a course concern
ing the issues surrounding AIDS, political support at national, regional, and district
levels has been strengthened. Even the head of government has spoken out and
acted in support of the fight against HIV/AIDS. Perhaps the general mobilization of
communities in Senegal against AIDS is also psychological. Although the informa
tion and educational projects and tools adapted to the sociocultural context of the
country were being used, images of deeply affected countries such as Uganda and
other Central African nations were presented early on to the population to show the
devastating effects of the epidemic.
At the beginning of the 1990s, the NACP rallied its foreign partners to consider
as a priority the allocation of resources to the social sector. The project Support a la
lutte centre le SIDA au Senegal (Support for the Fight against AIDS in Senegal),
financed by the Canadian International Development Agency (CIDA/ACDI), began
its activities in 1992 to provide technical and financial support to nonprofit organi
zations and community associations. This project was followed by AIDSCAP, the
Alliance National Centre le SIDA (National Alliance Against AIDS), UNICEF, and
other UN agencies. Indeed, several international organizations were encouraged to
support the HIV/AIDS programs of Senegal but in a planned, orderly manner.
Role of Religion
Senegal is a predominantly Islamic country, with a more than 90% Muslim popu
lation who follow doctrines set forth by the powerful and respectable religious
brotherhoods known for their orthodoxy but who are far from being religious fun
damentalists. Dialogue with religious and secular authorities on HIV/AIDS started
very early, even though some formal approaches by organizations and institutions
were initiated later to consolidate and legitimize the dialogue. Two national sym.posia on the response of Islam and the Catholic Church to the epidemic were held.
The initiatives, principally conducted by the community and nonprofit organiza
tions, already had succeeded at the end of the 1980s in securing the contribution of
local religious leaders (Imams of the neighborhood or the village). These leaders
used their sermons to draw the attention of their followers to the reality of AIDS
and the appropriate behaviors encouraged by the various religions. Jamra (an
Arabic word that means embers), a nonprofit Islamic organization, played a large
role in crisscrossing the country each year to meet with the leaders of the different
Muslim brotherhoods, sensitizing them to the issues concerning AIDS and soliciting
their intervention and support in the education of the population at large. A
number of these religious leaders participated and continue to participate in this
effort through the association of Imams. For its part, the Association des pastes de
sante price (Association of Private Catholic Health Services), which is directly
dependent on the Catholic church, has carried out sensitization and educational
programs for many years. Also in this context, few voices of opposition rise up
publicly against condoms in the fight against HIV/AIDS. Neither religious nor poli
116
W. Diop
tical authorities have spoken out against them in a sort of modus viven i. resu mg
from a long and regular dialogue between the NACP and religious ea. ers o a
faiths, leading to an understanding that no one should oppose the other s message
publicly out of respect for the diversity in public opinion.
Community and Social Action
Senegal has an unusually developed network of associations. This network was
immensely useful to start off the HIV/AIDS campaigns. For example, The
Environement et Developpeinent dans le Tiers Monde (ENDA Tiers Monde), an
international nongovernmental organization (NGO) based in Dakar, with others
created and provided support for a general mobilization throughout the entire
country. In each neighborhood and village there exists an Association Sportive et
Culturelie (ASC—Cultural and Sports Association) composed of both young people
and adults, just as in each village and neighborhood there are women s associations.
All of these groups have been active continually for the past several years on infor
mation, education, counseling, and other aspects of the fight against HIV/AIDS.
In 1992, for example, the youth associations, encouraged by their leaders and
the NACP. made AIDS the theme of their annual theater competition. ENDA put
all of its efforts into forming and providing support for an enormous network of
community volunteers, the result of collaboration between the ASCs, the women’s
groups, and the developmental associations of each region. This general mobi
lization of youth associations, women’s groups, and nonprofit organizations in the
communities is reinvigorated periodically through three annual government initia
tives. These initiatives, supported by several ministers, districts, and communities
are: youth week against AIDS, women’s week, and the World AIDS Day campaign.
Added to these initiatives and the activities of the neighborhood and village associ
ations and nonprofit organizations are the integrated programs of various govern
ment ministries such as that of the Ministry of Education, which introduced
teaching curriculum on HIV/AIDS in elementary schools.
The success of the fight against AIDS in Senegal, including the 100% blood
safety, control of STDs, and general mobilization of leaders and communities,
would still have been limited without the involvement of the private sectors who
have invested a lot in AIDS prevention, especially the education of the general
population. All social groups are encouraged to be involved in activity where the
problem of AIDS is brought up in schools, associations, religious sermons rec
reational activities, the media, in the markets, the bus stations, and the home
Lessons from Uganda
According to UNAIDS, Uganda ranks among countries hardest hit by HIV/AIDS
but it has come up with several measures and responses that have not only stemmed
the rise of the epidemic, but also are actually beginning to show reduction in its
spread among some groups in the country. The examples of the response of Ueanda
may be instructive in showing how HIV/AIDS can be brought under control The
country is fortunate to have strong political recognition of the problem that
posed by the epidemic early on. This has been demonstrated by the en^pJJtr
President Yoweri Museveni with combating HIV/AIDS soon ■ ft
n ^ement 0
office. The political involvement has prompted a number of int^
& Came ’nt°
such as establishment ot the National AIDS Comm"”™
grame with separate but complementary responsibilities. The governme t h°'
Communication Strategies in Africa
117
fosterino
^nv‘ronment for community responses to the epidemic through
.
fm
ima co estigmatization, which has enabled several role models and
t° r
1C^ d'sefose their HIV infection. Indeed, Uganda is the first
hoiUn ? 7k ere P!1O^C ^v'n8 w‘th HIV/AIDS established organizations and actively
■ ,Pe ° SpS a ected or infected to cope with the epidemic. Several often-cited
in ica ors o success in Uganda include the increased demand for voluntary testing
} peop e w o would like to know their HIV status; involvement of many youth
an community organizations in HIV/AIDS; formation of networks of organi
zations t at help with coping mechanisms for the disease; extensive collaboration
etween national institutions/agencies and international collaborators to synchro
nize programs and efforts; increased funding and resources for HIV/AIDS pro
grams, and monitoring and evaluation of the effectiveness of programs and
interventions.
Conclusion
The lessons of Senegal and Uganda are both very important. In both cases, the
absence of denial;-focus on the larger context of HIV/AIDS (beyond the biomedical
approach); coordinated and concerted programs; political commitment of the
highest level; forging alliances with social, religious, and economic sectors; and
mobilization of community organizations are all vital to fight HIV/AIDS. Now,
Senegal and Uganda provide us with proof that African countries contain inestima
ble resources to efficiently respond to the AIDS pandemic. These resources should
be carefully and intelligently identified and rationally invested.
References
Kaleeba, N. (with Ray, S. & Willmore, B.). 1991. We miss you all.
Kane, F., Michel, A., Ibra, N., Coll, A. M., Mboup, S., Gueye, A., Kanki, P. J., & Joly, J. R.
1993. Temporary expatriation is related to HIV-1 infection in rural Senegal, AIDS, 7(9),
1261-1265.
Islamic Medical Association of Uganda (IMAU) AIDS education through Imams: A spiritually
motivated community effort in Uganda. [UNAIDS Case Study], Geneva, Switzerland,
UNAIDS.
Meda, N., Ndoye, I., Wade, A., Ndiaye, S., Niang, C., Sarr, F., Diop, I., Mboup, S., & Carael,
M. 1998. Controle de I'epidemie de VIH/SIDA en Afrique: Examen de la situation au
Senegal.
Ndiaye, S.. Wade, A., Gueye, M., & Diagne, M. 1998. Enquete sur les comportements de
prevention en matiere de MST/SIDA dans la population generale a Dakar (Senegal):
Rapport d’analyse. Dakar: CNLS-ONUSIDA.
Nunez, A. 1993. Une approche micro-realisation dans la hitte contre le SIDA. Halte SIDA, 1(3),
10-12.
UNAIDS 1998. Partners in prevention: International case studies of effective health promotion
practice in HIV/AIDS. Geneva, Switzerland, pp. 49-57.
UNAIDS (1998, May). A measure of success in Uganda, the value of monitoring both HIV
prevalence and sexual behavior. [UNAIDS Case Study], Geneva, Switzerland, Author.
UNAIDS (1999, January). Key political, institutional, and program elements of successful
national HIV/AIDS programs: The cases of Uganda and Thailand. [UNAIDS Draft
Technical Note], Geneva, Switzerland.
UNAIDS WHO. 1998. Senegal epidemiological fact sheet on HIV/AIDS and sexually trans
mitted diseases. Geneva, Switzerland.
UNICEF 1998- Uganda: The survival of a new generation. Location: Author.
1999 World Views: AIDS in Uganda, Ancient healers join fight against modern disease.
14
MATERIAL ON HKV/AIDS
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SALVATORSTR. 22
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June 2001
l/^c
Unit for Health Services and HIV/Aing
Von:
Gesendet:
An:
Betreff:
break-the-silence@hdnet.org
Donnerstag, 3. Mai 2001 14’00
UNGASS-BTS
UNGASS News and Events - UN Secretary General in Abuja
The UN Secretary General
tSectLus disease""
H1V/AIDS' Tuberculosis and other
Abuja, 26 April 2001
Thank you, Mr. Salim/President Obasanjo
Excellencies,
Dear friends,
This is a conference about Africa's future.
The incidence of HIV/AIDS, tuberculosis and other infectious diseases is
higher on this continent than on any other.
Of course, this fact is connected to Africa's other problems.
Africans are vulnerable to these diseases because they are poor,
undernourished, and too often uninformed of basic precautions, or
unwilling to take them.
Many are vulnerable because they have neither safe drinking water nor
access to basic health care.
They are vulnerable, in short, because their countries are underdeveloped.
And therefore the best cure for all these diseases is economic growth and
broad-based development.
We all know that.
But we also know that, in the best of cases, development is going to take
time. And we know that disease, like war, is not only a product of
underdevelopment.
It is also one of the biggest obstacles preventing our
societies from developing as they should.
That is especially true of HIV/AIDS, which takes its biggest toll among
young adults - the age group that normally produces most, and has the main
responsibility for rearing the next generation. That is why AIDS has
become not only the primary cause of death on this continent, but our
biggest development challenge. And that is why I have made the battle
against it my personal priority.
In short, my friends, we are here to face a continent-wide emergency. We
cannot afford to treat it as just one aspect of the battle for
development, because it will not wait for us to win that battle. The cost
- whether measured in human misery today, or in loss of hope for tomorrow
- is simply too high. We have to turn and face it head on.
First let us be clear what our objectives are.
very simply, under five headings:
I believe they can be put
Number One: Prevention.
Our first objective must be to halt and reverse the spread of the virus 11 world leaders resolved to do at last year's Millennium Summit - and
aS t
”ve succeeding generations from this scourge.
Prevention can save
so to sav
lives, and in several African countries it has been shown
many millions or xive=>,
to work.
.
ot yet infected must know what they need to do to avoid
Everyone w o
r
yOung people the knowledge and power to protect
infection, we muau
j
1
themselves. We need to inform, inspire and mobilise them, throug a
awareness campaign such as the world has never seen - using radio,
television and professional marketing techniques, as well as more
conventional tools of education.
That campaign must reach girls as well as boys. At present, in
sub-Saharan Africa, adolescent girls are six times more likely to be
infected than boys. That is something which should make all of us
ri
men deeply ashamed and angry.
And once they know what they need to do, young people must have the means
to do it. That means they must have support from their families and
communities, as well as access to voluntary counselling and testing an
when appropriate - to condoms.
Number Two: We must prevent the cruellest, most unjust infections of all
those that pass from mother to child.
All mothers must be able to find out whether they are HIV-positive or not.
And those who are must have access to short-term anti-retroviral therapy,
which has been shown to halve the risk of transmission.
In some cases, the risk can also be reduced by alternatives to
breast-feeding. But these must be approached with caution, since
breast-feeding is the best protection against many other diseases.
Number Three: we must put Care and Treatment within everyone's reach.
Even a year ago few people thought that effective treatment could
brought within reach of poor people in developing countries.
Those
already infected with HIV were condemned to be treated like lepers in
earlier times - as people from whom the healthy had to be protected, but
for whom nothing could be done.
Now, however, there has been a world-wide revolt of public opinion.
People no longer accept that the sick and dying, simply because they are
poor, should be denied drugs which have transformed the lives of others
who are better off.
Earlier this month I met the leader^ of six of the world's biggest
pharmaceutical companies. They now accept the need to combine incentives
for research with access to medication for the poor. They are ready to
sell drugs to those countries at greatly reduced prices.
This crisis is so grave that developing countries must face it by
exploiting all options to the full - including the production and
importation of "generic" drugs under licence, within the terms of
international trade agreements.
Everyone who is infected should have access to medicine and medical care.
Now we know that that is possible, it is surely an ethical imperative.
it
is also essential to any successful prevention strategy - because, so Iona
as testing positive is a death sentence without hope, many people'will not
even want to know their HIV status.
In short, we cannot and should not choose between prevention and
treatment. We must do both.
Number-Four: we must deliver Scientific Breakthroughs.
We are still a long way from finding a cure for HIV/AIDS, and a Iona
from finding a vaccine against it. We must make sure that the sear h ■
given the highest priority in scientific budgets, and be readv a
1S
it produces results, to make them available where they are mnii
aS
not only to those who can afford them.
t nee<^ed —
And finally, Number Five: we must protect those made most vulnerable k
the epidemic, especially orphans.
“■‘•“eraoie by
Millions of children, because they have lost
one or both parents to AIDS
are growing up malnourished, under-educated
marginalised, and at
2
being infected themselves
Wn m *. •
must not wait for parents’to die
break this cycle of death. And we
secure their children's futuro .
°r? we intervene- We must help them
Ure while they are still fit enough to do so.
Agreeing on those five obier-H™,.
the means we need to achieve those ends?
bS dlfficult’
But what are
First of all, we need leadership
-t-■ And my friends, that must start with
you, the leaders of Africa.
(Only
you can mobilise your fellow-citizens
for this great battle.
n~y you can give it the priority in deserves in
your national budgets.
Above all, you must
th® lead in breaking the wall of silence and
embarrassmen j . u
1 . surrounds this issue in too many African
societies tkn„„ ■
em°v^n9 tke abuse, discrimination and stigma that still
attach to x. i,
rnj.ec ed.
The epidemic can be stopped, if people are not
afraid to talk about it.
r
Secondly, we need to involve local communities.
It is ultimately at that
level that the battle will be fought and won.
It is only with the fullest
support Oj their families and communities that young people will be able
to change their behaviour and protect themselves. Above all, we must
involve those already living with HIV-AIDS in the struggle against it.
They, axter all, are the ultimate experts.
Thirdly, we need a deep social revolution that will give more power to
women, and transform relations between women and men at all levels of
society.
It is only when women can speak up, and have a full say in
decisions affecting their lives, that they will be able to truly protect
themselves - and their children - against HIV.
Fourth, we need stronger healthcare systems. This should be obvious, but
both governments and development agencies often lose sight of it when
setting their budgets and priorities.
If our aim is to make care and
treatment available to all those infected, we need a far more efficient
and extensive system of public health than most African countries even
begin to provide at present.
Cheaper anti-retroviral drugs, however vital, will not by themselves
provide the answer. Without proper health care, they may even do more
harm than good - for example, if potentially life-threatening side effects
are not addressed, or if the therapy is interrupted, leading to
drug-resistant forms of HIV. And too many patients still do not have
access even to relatively cheap antibiotics and other effective drugs for
the many illnesses that prey on their weakened immune systems.
Finally, we need money.
The war on AIDS will not be won without a war
chest, of a size far beyond what is available so far.
Money is needed for education and awareness campaigns, for HIV tests, for
condoms, for drugs, for scientific research, to provide care for orphans,
and of course to improve our healthcare systems. At a minimum, we need to
be able to spend an additional seven-to-ten billion dollars a year on the
struggle against HIV/AIDS in the world as a whole, over an extended period
of time.
It sounds a lot, and it is a lot.
Somehow we have to bring about a
quantum leap in the scale of resources available. But it is not at
impossible, given the amount of wealth in the world.
In fact it is
more than one per cent of the world's annual military spending.
We
have to convince those with the power to spend - public and private
alike - that this would be money well spent.
all
little
just
donors
We need to mobilise the widest possible range of donors — who must all
agree on the same broad objectives — and we need to win their commitment
for the long haul.
Over the past few weeks and months, there have been several exciting
suggestions for a new fund or funds from a variety of people -Governments, private foundations and academics. All these initiatives
must now converge towards a common vision of what we are trying to
achieve.
3
I propose the creation of a Global Fund, dedicated to the battle against
HIV/AIDS and other infectious diseases.
This Fund must be structured in
such a way as to ensure that it responds to the needs of the affected
countries and people. And it must be able to count on the advice of the
best experts in the world - whether they are found in the United Nations
system, in civil society organisations, or among those who live with
HIV/AIDS or are directly affected by it.
I intend to pursue this idea with all concerned over the next few weeks,
and I hope that in the very near future the Fund will be up and running.
My dear friends and colleagues,
The ideas I have put to you today are the fruit of extensive consultations
within the United Nations system, with member states, with philanthropic
foundations, with private companies, and with civil society.
I believe we
can all agree on them, and that they can be the foundations of a common
strategy.
I certainly hope so, because this battle can be won only if we mobilise
and focus the efforts of a wide range of stakeholders: national leaders
like yourselves, donor governments, the United Nations system,
pharmaceutical and other companies, foundations, and voluntary groups especially those that represent people living with HIV, In other words, we
need a complete mobilisation of society at large.
Everyone has his or her part to play. Let us now lay aside all turf
battles and doctrinal disputes. The battle against HIV/AIDS is far more
important than any one institution or project. Our success will not be
measured by resolutions passed, appointments made, or even funds raised.
It will be measured in the lives of succeeding generations.
In the last year or so the world has begun to realise that HIV/AIDS is
indeed a world-scale pandemic, which has spread fastest and furthest in
Africa.
So this is a moment of hope, and potentially a turning point. Africa is
no longer being left to face this disaster alone.
Its plight has caught
the attention, and the conscience, of the whole world.
I believe the world is ready to come to our aid. But it will do so only
if we convince the world that we ourselves are making the war against AIDS
our personal priority, and have a clear strategy for waging it.
In two months' time, delegates from all over the world will gather in New
York for a Special Session of the United Nations General Assembly on
HIV/AIDS. They will draw up a global strategy for the war against this
global scourge, and I hope by then we shall have firm commitments for our
war chest.
Will that strategy respond to the needs of Africa? It depends, in large
part, on the signal that goes out to the world from this conference.
For my part, I promise you the full support of the United Nations family.
Working together, my friends, we can defeat the scourge of HIV/AIDS.
For
the sake of Africa's future, we must.
Thank you very much.
BREAK
THE
SILENCE
UN General Assembly - Special Session on HIV/AIDS
New York - 25 to 27 June, 2001
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15
MATERIAL ON HIV/AIDS
SENT BY
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UNIT FOR HEALTH SERVICES AND HIV/AIDS
SALVATORSTR. 22
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OAU/SPS/ABUJA/3
Page 1
AFRICAN SUMMIT ON HIV/AIDS,
TUBERCULOSIS AND OTHER
RELATED INFECTIOUS DISEASES
ABUJA, NIGERIA
24-27 APRIL 2001
OAU/SPS/ABUJA/3
ABUJA DECLARATION ON HIV/AIDS,
TUBERCULOSIS AND OTHER RELATED
INFECTIOUS DISEASES
OAU/SPS/ABUJA/3
Page 1
ABUJA DECLARATION ON HIV/AIDS,
TUBERCULOSIS AND OTHER RELATED INFECTIOUS
DISEASES
We, the Heads of State and Government of the Organisation of
African Unity (OAU) met in Abuja, Nigeria from 26-27 April 2001, at a
Special Summit devoted specifically to address the exceptional
challenges of HIV/AIDS, Tuberculosis and Other Related Infectious
Diseases, at the invitation of H.E. President Olusegun Obasanjo of the
Federal Republic of Nigeria and in accordance with the agreement
reached at the Thirty-Sixth Ordinary Session of our Assembly in Lome,
Togo from 10 to 12 July 2000.
2.
We gathered in Abuja to undertake a critical review and
assessment of the situation and the consequences of these diseases in
Africa, and to reflect further on new ways and means whereby we, the
leaders of our Continent, can take the lead in strengthening current
successful interventions and developing new and more appropriate
policies, practical strategies, effective implementation mechanisms and
concrete monitoring structures at national, regional and continental levels
with a view to ensuring adequate and effective control of HIV/AIDS,
Tuberculosis and Other Related Infectious Diseases in our Continent.
3.
We are deeply concerned about the rapid spread of HIV infection
in our countries and the millions of deaths caused by AIDS, Tuberculosis
and other related infectious diseases throughout the Continent, in spite of
the serious efforts being made by our countries to control these diseases.
Africa is exceptionally afflicted by the HIV/AIDS epidemic. This
generalised epidemic is affecting a wide cross-section of our people, thus
decimating the adult population, the most productive group, and leaving
in its wake millions of orphans, and disrupted family structures.
4.
We recognize the role played by poverty, poor nutritional
conditions and underdevelopment in increasing vulnerability. We are
concerned about the millions of African children who have died from
AIDS and other preventable infectious diseases. We are equally
concerned about the particular and severe impact that these diseases have
on children and youth who represent the future of our continent, the
plight of millions of children orphaned by AIDS and the impact on the
social system in our countries.
OAU/SPS/ABUJA/3
Page 2
5.
We are particularly concerned about the high incidence of mother
to child transmission, especially given the challenges of infant
breastfeeding in the context of HIV infection on the continent.
6.
We recognize that special efforts are required to ensure that
Africa’s children are protected from these pandemics and their
consequences and that the full and effective participation of young people
in prevention and control programmes is essential to their success.
7.
We recognise that biologically, women and girls are particularly
vulnerable to HIV infection.
In addition, economic and social
inequalities and traditionally accepted gender roles leave them in a
subordinate position to men.
8.
We appreciate the special needs and challenges of the HIV/AJDS
pandemic for the youth that make them vulnerable to infection and
adverse impacts of the epidemic.
9.
We recognize that the practice of injectable drug abuse with
sharing of contaminated needles in some African countries is a major
concern. The abuse of alcohol, marijuana and other mind-altering drugs,
which is on the increase among the youth further enhances their
vulnerability to HIV infection.
10.
We recognize the essential place that education, in its widest sense
has played and will continue to play in the fight against HTV/AJDS in
Africa. Education constitutes the most powerful, cost effective tool for
reaching the largest number of people with information and personal
development strategies that promote long-term behaviour change.
11.
We acknowledge that forced migrations due to war, conflicts,
natural disasters and economic factors including unilateral sanctions
imposed on some African countries, lead to an increased vulnerability
and the spread of the disease; we note that special attention should be
given to migrants, mobile populations, refugees and internally displaced
persons in national and regional policies. We also note that special
attention should be given to the problem trafficking in human beings and
its impact on HIV/AIDS.
12.
We are aware that stigma, silence, denial and discrimination
against people living with HIV/AJDS (PLWA) increase the impact of the
epidemic and constitute a major barrier to an effective response to it. We
OAU/SPS/ABUJA/3
Page 3
recognize the importance of greater involvement of People Living with
HIV/AIDS.
13. We recognise that the epidemic of H1V/A1DS, Tuberculosis and
Other Related Infectious Diseases constitute not only a major health
crisis, but also an exceptional threat to Africa's development, social
cohesion, political stability, food security as well as the greatest global
threat to the survival and life expectancy of African peoples. These
diseases, which are themselves exacerbated by poverty and conflict
situations in our Continent, also entail a devastating economic burden,
through the loss of human capital, reduced productivity and the diversion
of human and financial resources to care and treatment.
14. We recognize the need to intensify our efforts in all areas of
research such as traditional medicines and vaccine development.
15. We are fully convinced that containing and reversing the
HIV/AIDS epidemic, tuberculosis and other infectious diseases should
constitute our top priority for the first quarter of the 21st Century. We are
equally convinced that tackling these epidemics should constitute an
integral part of our continental Agenda for promoting poverty reduction,
sustainable development and ensuring durable peace and political security
and stability consistent with the Millennium African Recovery
Programme.
16. We recognise and commend the efforts by our respective national
Governments, our continental Organisation and its Regional Economic
Communities (RECs), the national and international NGOs, the civil
society, including youth, women, people with disability, religious
organisations, sport organizations, Trade Unions, Employers
organizations, Traditional Health Practitioners, Traditional Rulers, people
living with HIV/AIDS and individuals, who care for, support and
sensitise our people to the threat of HIV/AIDS and the associated
opportunistic infections including Sexually Transmitted Infections (STIs).
17. We acknowledge the support that the international Community,
including the United Nations System, its Specialised Agencies and
programmes, bilateral agencies, private sector and other communities and
stakeholders have provided in raising awareness about and combating the
scourge of HIV/AIDS, Tuberculosis and other related infectious diseases
in Africa.
OAU/SPS/ABUJA/3
Page 4
18.
We further acknowledge that, to successfully implement a
comprehensive and multisectoral approach and campaign to overcome
HIV/AIDS, tuberculosis and other related infectious diseases, there is a
need to secure adequate financial and human resources at national and
international levels.
19.
We recognize the need to establish a sustainable source of income
to fund HIV/AIDS programmes.
20. We recognise the importance of leadership at all levels in the fight
against HIV/AIDS, Tuberculosis and Other Related Infectious Diseases
in our Continent. We, therefore, acknowledge the special importance of
the “African Consensus and Plan of Action: Leadership to overcome
HIV/AIDS” adopted at the African Development Forum 2000 as the
outcome of a wide-ranging process of consultation with all stakeholders.
21. In this regard, we recall and reaffirm our commitment to all
relevant decisions, declarations and resolutions in the area of health and
development and on HIV/AIDS, particularly the “Lome Declaration on
HIV/AIDS in Africa” (July 2000) and the “Decision on the adoption of
the International Partnership against HIV/AIDS” (Algiers 1999).
WE SOLEMNLY DECLARE AS FOLLOWS:
22. We consider AIDS as a State of Emergency in the continent. To
this end, all tariff and economic barriers to access to funding of AIDSrelated activities should be lifted.
23. To place the fight against HIV/AIDS at the forefront and as the
highest priority issue in our respective national development plans. To
that end, WE ARE RESOLVED to consolidate the foundations for the
prevention and control of the scourge of HIV/AIDS, Tuberculosis aid
Other Related Infectious Diseases through a comprehensive multisectoral
strategy which involves all appropriate development sectors of our
governments as well as a broad mobilisation of our societies at all levels,
including community level organisations, civil society, NGOs, the private
sector, trade unions, the media, religious organisations, schools, youth
organisations, women organisations, people living with HIV/AIDS
organizations and individuals who care for, support and sensitise our
population to the threat of HIV/AIDS and associated opportunistic
infections and also to protect those not yet infected, particularly the
women, children and youth through appropriate and effective prevention
programmes.
OAU/SPS/ABUJA/3
Page 5
To that effect, WE COMMIT OURSELVES TO TAKE
PERSONAL RESPONSIBILITY AND PROVIDE LEADERSHIP for
the activities of the National AIDS Commissions/Councils.
WE
THEREFORE RESOLVE to lead from the front the battle against
H1V/A1DS, Tuberculosis and Other Related Infectious Diseases by
personally ensuring that such bodies were properly convened in
mobilizing our societies as a whole and providing focus for unified
national policy-making and programme implementation, ensuring
coordination of all sectors at all levels with a gender perspective and
respect for human rights, particularly to ensure equal rights for people
living with HTV/AIDS (PLWA).
24.
25. WE ALSO COMMIT OURSELVES TO ENSURE that
leadership role is exercised by everyone in his/her area of responsibility
in the fight against HIV/AIDS and other related diseases. WE
THEREFORE ENDORSE the “African Consensus and Plan of Action:
Leadership to overcome HIV/AIDS” adopted during the Second African
Development Forum on “AIDS: The Greatest Leadership Challenge”
organised by the United Nations Economic Commission for Africa
(UNECA) in collaboration with the OAU, UNAIDS and ILO (Addis
Ababa, 3-7 December 2000).
26. WE COMMIT OURSELVES to take all necessary measures to
ensure that the needed resources are made available from all sources and
that they are efficiently and effectively utilized. In addition, WE
PLEDGE to set a target of allocating at least 15% of our annual budget
to the improvement of the health sector. WE ALSO PLEDGE to make
available the necessary resources for the improvement of the
comprehensive multi-sectoral response, and that an appropriate and
adequate portion of this amount is put at the disposal of the National
Commissions/Councils for the fight against HIV/AIDS, Tuberculosis and
Other Related Infectious Diseases.
27. WE REQUEST the OAU Secretariat, in collaboration with ADB,
ECA, and all other partner institutions, especially WHO and UNAIDS, to
assist Member States in formulating a continental-wide policy for an
international assistance strategy for the mobilisation of additional
financial resources.
28. WE CALL UPON Donor countries to complement our resources
mobilization efforts to fight the scourge of HIV/AIDS, Tuberculosis and
Other Related Infectious Diseases. Bearing in mind that Africa cannot,
OAU/SPS/ABUJA/3
Page 6
from its weak resource base, provide the huge financial resources needed.
In this regard, WE URGE those countries to, among others, fulfil the yet
to be met target of 0.7% of their GNP as official Development Assistance
(ODA) to developing countries.
29. We support the creation of a Global AIDS Fund capitalized by the
donor community to the tune of US S5 — 10 billion accessible to all
affected countries to enhance operationalization of Action Plans,
including accessing Anti-retroviral programmes in favour of the
populations of Africa.
30. WE UNDERTAKE to mobilize all the human, material and
financial resources required to provide CARE and SUPPORT and
quality treatment to our populations infected with HFV/AIDS,
Tuberculosis and Other Related Infections, and to organize meetings to
evaluate the status of implementation of the objective of access to care.
31. WE RESOLVE to enact and utilize appropriate legislation and
international trade regulations to ensure the availability of drugs at
affordable prices and technologies for treatment, care and prevention of
HIV/AIDS, Tuberculosis and Other Infectious Diseases. WE ALSO
RESOLVE to take immediate action to use tax exemption and other
incentives to reduce the prices of drugs and all other inputs in health care
services for accelerated improvement of the health of our populations.
32. WE COMMIT OURSELVES to explore and further develop the
potential of traditional medicine and traditional health practitioners in the
prevention, care and management of HIV/AIDS, Tuberculosis and Other
Related Infectious Diseases.
33. WE COMMIT OURSELVES to support the development of
effective affordable, accessible HIV vaccine relevant to Africa. We,
therefore, support “The Africa; AIDS Vaccine Programme” (AAVP), its
collaborative partners. International partners and Institutions committed
to the facilitation of HIV vaccine research and testing in Africa.
34. WE COMMIT OURSELVES to documenting and sharing these
successfi.il and positive experiences with a view to sustaining and scaling
them up for wider coverage; mindful that there are still challenges that
confront us, particularly in the area of infant feeding.
35. WE COMMIT OURSELVES to scaling up the role of education
and information in the fight against HIV/AIDS in recognition of the
OAU/SPS/ABUJA/3
Page 7
essential role education, in its widest sense plays as a cost-effective tool
for reaching the largest number of people.
36. WE COMMIT OURSELVES to the strengthening and
development of special youth programmes to ensure an AIDS-free
generation.
37. WE, within the framework and spirit of our Sirte Declaration of 9
September 1999, RENEW THE MANDATE of our brothers, President
Bouteflika of Algeria, President Mbeki of South Africa and President
Obasanjo of Nigeria to continue discussion with our debt creditors, on our
behalf, with the view to securing the total cancellation of Africa’s
external debt in favour of increased investment in the social sector.
38. WE ENDORSE the Abuja Declaration on FIIV/AIDS,
Tuberculosis and Other Related Infectious Diseases; and WE PLEDGE
to promote advocacy at the national, regional and international levels; and
WE ALSO PLEDGE to ensure massive participation of Heads of State
and Government at the United Nations General Assembly Special Session
(UNGASS) on HIV/AIDS slated for 25 - 27 June 2001 so as to ensure
that the session comes up with concrete and urgent decisions for the fight
against HIV/AIDS in .Africa including the fight against poverty and
deduction of Africa’s debt.
39. WE REQUEST the OAU Secretary General, in collaboration with
ECA ADB, UNAIDS, WHO, UNICEF, UNDP, ILO, UNFPA, FAO,
UNESCO, UNIFEM, 1OM, UNDCP and other partners, to follow-up on
the implementation of the outcome of this Summit and submit a report to
the Ordinary Sessions of our Assembly.
40. WE MANDATE the Government of the Federal Republic of
Nigeria to submit a report on the outcome of this African Summit on
HIV/AIDS, Tuberculosis and Other Related Infectious Diseases to the
next Ordinary OAU Summit, which will be held in Lusaka, Zambia in
July 2001.
Abuja, Federal Republic of Nigeria
27 April 2001
16
MATERIAL ON HIV/AIDS
SENT BY
MEDICAL MISSION INSTITUTE
UNIT FOR HEALTH SERVICES AND HIV/AIDS
SALVATORSTR. 22
D-97074 WURZBURG
GERMANY
June 2001
A/55/779
United Nations
General Assembly
Distr.: General
16 February 2001
Original: English
Fifty-fifth session
Agenda item 179
Review of the problem of human immunodeficiency
virus/acquired immunodeficiency syndrome in all
its aspects
Special session of the General Assembly on HIV/AIDS
Report of the Secretary-General
Summary
In the two decades since it has been with us, the acquired immunodeficiency
syndrome (AIDS) epidemic has continued its relentless spread across continents,
hitting harder in some places than others but sparing no country. In these two
decades, it has become a truly global emergency.
That the world finally recognizes the scale of this crisis is clear in the
Millennium Declaration (General Assembly resolution 55/2) adopted by the
Millennium Summit of the United Nations, held in September 2000. In the
Declaration, the world’s leaders committed themselves to halting and beginning to
reverse the spread of the human immunodeficiency virus (HIV)/AIDS by 2015;
providing special assistance to children orphaned by HIV/AIDS; and helping Africa
build up its capacity to tackle the spread of the HIV/AIDS pandemic and other
infectious diseases. The decision by the General Assembly to convene a special
session to review and address the problem of HIV/AIDS as a matter of urgency
followed quickly after the Millennium Summit, and is seen as the first step in the
realization of the commitments expressed in the Declaration.
The present report examines the spread of the epidemic and reviews its
impacts — demographic, social, economic and from the standpoint of the security of
people and nations. It approaches the epidemic from all levels, recognizing that
although a global problem requires a global response, the mobilization of people and
communities is also essential. It is at the household and community level, supported
by civil society groupings, that open dialogue about norms, values, gender issues,
health and sexuality takes place and can have a real impact on people’s ability to
reduce their vulnerability to infection.
01-24685 (E)
200201
AJS5I779
widespread and affordable access io care and treatment; that successful responses
have their roots in communities; that empowering young people and women is
essential; that people living with HIV or AIDS are central to response; and that the
epidemic must be tackled on several fronts — by addressing risks associated with
behaviours and situations, vulnerability to the risk of infection and impact on the
lives of individuals and their communities.
The present report assesses the response to the epidemic through the triple lens
of leadership, coordination and the need for adequate resources. Leadership — at
the global as well as the country level — is the single most important factor in
reversing the epidem ic.
One of the most important leadership challenges is to ensure that the full power
and authority of the State is brought to bear on the epidemic, securing the
mobilization of all sectors and levels of government, a decentralized implementation
of interventions, solid partnerships with non-governmental actors, adequate funding
from national budgets, and appropriate r'esourcc allocations across sectors and down
to the district/municipal levels.
A second factor in the success against HIV/AIDS, both nationally and globally,
is improved coordination across all sectors of social and economic planning
between Governments, among government and non-governmental partners, and
among international and national civil society. At a time when resources and the
number of actors intervening against AIDS are increasing, the coordination of efforts
becomes even more critical in a strong response. By encouraging the collective
approaches and problem-solving that are crucial to a cross-cutting issue like AIDS,
coordination can help focus energy and resources on specific goals in order to avoid
duplication and enhance cost-effectiveness. In this way, collective approaches and
problem-solving add significant weight to what might otherwise be seen as piecemeal
solutions. A large-scale synergistic and systematic response is required.
A third critical factor is the need for adequate resources. Worldwide, financial
resources allocated to HIV/AIDS, particularly in the most affected regions, is only a
fraction given the magnitude of the epidemic. For example, a well-resourced
response for prevention and basic care programmes in Africa alone would require at
least USS 3 billion a year, not including antiretroviral therapy. Yet only a fraction of
this amount is available despite growing evidence of political will and commitment.
These challenges are described in a conference room paper that will be issued
to complement the present report.
Considerable success has been achieved in addressing the epidemic in many
parts of the world. Declining HIV infection rates in many communities and in some
cases across nations, especially among young people, have proven that prevention
strategies work. Declining death rates from AIDS in industrialized countries and
some developing countries have also demonstrated recent benefits of HIV treatment
and that care is effective.
Meeting the challenge of HIV/AIDS requires a combination of approaches:
strengthening leadership, alleviating the social and economic impacts of the
epidemic, reducing vulnerability, intensifying prevention, increasing care and
support, providing international public goods and increasing resources.
HIV/AIDS is the most formidable development challenge of our time. The
2
A/55/779
Contents
I.
Introd action
II.
Epidemic overview
III.
IV.
......................................................................................................
Socio-economic impacts of HIV/AIDS
Paragraphs
Page
1-3
4
4-21
4
22-40
6
A.
Demographic impacts
24-25
6
B.
Social impacts
26-32
7
C.
Economic impacts
33-38
8
D.
Im pact on security
39-40
9
Global, regional and national responses to AIDS
A.
Global response
B.
Regional and national responses
'.......................................................
41-86
9
41-49
9
50-86
10
V.
Key lessons learned and clements of a successful response
87-108
15
VI.
Challenges for an expanded response: the way forward
109-123
19
Annexes
4
I.
Goals set by global conferences and their follow-up processes
21
II.
United Nations system response
23
A/55/779
I. Introduction
1.
Acquired immunodeficiency syndrome (AIDS)
has become a major development crisis. It kills
millions of adults in their prime. It fractures and
impoverishes families, weakens work forces, turns
millions of children into orphans, and threatens the
social and economic fabric of communities and the
political stability of nations. The negative impact of the
human immunodeficiency virus (HIV) and AIDS on
development, particularly in southern Africa but
increasingly in such areas as the Caribbean, South and
South-East Asia, cuts across development sectors and
across society. AIDS spreads rapidly, undermining
labour
forces,
business
productivity,
exports,
investments and ultimately national economics. If the
epidemic continues at its present rate, the hardest-hit
nations stand to lose up to 25 per cent of their projected
economic growth over the next 20 years.
2.
In September 2000, the General Assembly
adopted the Millennium Declaration (resolution 55/2),
in which it called for concrete action on HIV/AIDS.
Specifically, the Millennium Declaration commits the
world’s leaders to halting and beginning to reverse the
spread of HIV/AIDS by the year 2015; providing
special assistance to children orphaned by HIV/AIDS;
and helping Africa to build up its capacity to tackle the
spread of the HIV/AIDS pandemic and other infectious
diseases. The Declaration came after a series of follow
up events to global conferences, including the World
Summit for Social Development, the Fourth World
Conference
on
Women
and
the
International
Conference on Population and Development, which all
identified priorities on HIV/AIDS (see annex I). The
year 2000 opened with a debate in the Security Council
that recognized AIDS as an issue of human security
and acknowledged its growing impact on increased
regional instability and issues of national security.
3.
In recognition of the severity of the epidemic, the
United Nations decided to convene, as a matter of
urgency, a special session to review and address the
problem of HIV/AIDS. The special session will aim to
secure a global commitment for enhanced coordination
and intensified national, regional and international
efforts to combat the epidemic. The present report
provides a brief global overview of the epidemic and
examines its critical aspects. The report also analyses
lessons learned in the fight against AIDS to date, and
highlights areas that will require urgent attention in the
years to come.
II. Epidemic overview
4.
In December 2000, the Joint United Nations
Programme on HIV/AIDS (UNAIDS) secretariat and
the World Health Organization (WHO) reported that by
the end of 2000, 36.1 million men, women and children
around the world were living with HIV or AIDS and
21.8 million had died from the disease. The same year
saw an estimated 5.3 million new infections globally
and 3 million deaths, the highest annual total of AIDS
deaths ever. The spread of HIV has brought about a
global epidemic far more extensive than was predicted
even a decade ago, with the number of people living
with HIV or AIDS worldwide 50 per cent higher than
the figure projected in 1991. Modes of transmission
continue to be unprotected sex, unscreened blood and
blood products, contaminated needles, mothcr-to-child
transmission and breastfeeding.
Africa
5.
AIDS is now found everywhere in the world but
has hit hardest in sub-Saharan Africa. Africa is home to
70 per cent of adults and 80 per cent of children living
with HIV, and to three quarters of the nearly 22 million
people worldwide who have died of AIDS since the
epidemic began. During 2000, an estimated 3.8 million
people became infected with HIV in sub-Saharan
Africa and 2.4 million people died. AIDS is now the
primary cause of death in Africa. Today, an estimated
25.3 million Africans are living with HIV or AIDS, and
in 16 countries more than one tenth of all adults
(people aged 15 to 49) are infected. A tragic aspect of
the epidemic is the growing population of orphaned
children: of the world’s 13.2 million children orphaned
by AIDS, 12.1 million arc in Africa.
6.
Within sub-Saharan Africa, Southern Africa has
more people living with HIV than any other region.
One in four women aged 20 to 29 is infected. In West
Africa, infection rates are up, and they continue to be
high in East Africa. The countries of North Africa and
the Middle East have so far been the least affected by
the epidemic. With the exception of the Sudan and
Djibouti, prevalence rates are 1 per 1000 adults or
lower. However, recent data suggests that these
countries are not immune to the epidemic. There arc
reports of increasing prevalence among pregnant
5
A/5S/T79
women in some areas, as well as among some high-risk
populations.
7.
In 2000, for the first time the number of new
infections in the region was not higher than in the
previous year. Two factors may be responsible. First,
the epidemic has existed for so long that it has already
affected many sexually active persons, shrinking the
pool of available people to whom the infection could
still spread. Second, successful prevention programmes
in a handful of countries — notably Uganda, parts of
Zambia and the United Republic of Tanzania— have
reduced national infection rates, particularly among
young people. In Senegal, the prevalence rate appears
to be stable, at the low level of 1.7 per cent of the
general population, while South Africa and Kenya’s
rates may have stabilized but at much higher rates, of
19.9 and 13 per cent, respectively.
8.
Africa faces a triple challenge of daunting
proportions: it must reduce new infections by enabling
individuals to protect themselves and others; it must
bring health care, support and solidarity to an
increasingly infected population; and it must cope with
the cumulative impact of millions of AIDS deaths on
survivors, communities and national development.
Asia and the Pacific
9.
Asia has so far escaped the high infection rates
registered in Africa. Only three countries — Cambodia,
Myanmar and Thailand — have prevalence rates
exceeding 1 per cent among 15- to 49-year olds. But
infections are rising. In South and South-East Asia
during the past year, 780,000 adults, almost two thirds
of them men, became infected. East Asia and the
Pacific registered 130,000 new infections. In Thailand,
the strong response that was built around a programme
promoting 100 per cent condom use in commercial sex
has cut prevalence in young men by over 50 per cent.
10. The HIV/A1DS epidemic is relatively recent in
Asia and its dynamics vary greatly across the
continent, both among and within countries. These
differences
hide
broadly
recognizable
patterns,
however, including a considerable spread of HIV
among
the
heterosexual
population,
a
large
concentration in drug-injecting groups, and a high
incidence of HIV among sex workers and among men
who have sex with men. While infection rates are low
in the general population in countries like China and
India— which between them account for more than
6
one third of the world’s total population — even a low
rate of infection means that huge numbers of people are
affected. China is experiencing population movement
that dwarfs any other in recorded history. Having
practically eradicated sexually transmitted infections
by the 1960s, China is now witnessing a steep rise in
these rates, which could translate into higher HIV
spread. In India, HIV surveillance has found
prevalence rates of above 2 per cent among pregnant
women in some areas, and in studies among injecting
drug users in Manipur State, rates have varied between
40 and 75 per cent.
Eastern Europe and Central Asia
11. The countries of the former USSR present some
of the most dramatic trends in the worldwide AIDS
epidemic. Previously characterized by very low
prevalence rates, the region now faces an extremely
steep increase in the number of new infections, up from
420,000 at end-1999 to at least 700,000 one year later.
In 2000 alone, more new infections were registered in
the Russian Federation than in all previous years
combined. Of the region’s 250,000 new infections,
most occurred among men, the majority of them
injecting drug users. However, recent data in the
Ukraine has- found increasing prevalence among
pregnant woraen.
12. A complicated backdrop of economic crisis, rapid
social change, increased poverty and unemployment,
growing prostitution and changes in sexual norms have
all contributed to fuelling the rapid spread of HIV
throughout the region.
13. The Central Asian Republics have until recently
been little affected by the HIV/AIDS epidemic, but
recent data from some countries suggest that the spread
of HIV has begun to spread among injecting drug
users.
Latin America and the Caribbean
14. The epidemic in Latin America is a complex
mosaic of transmission patterns, in which HIV
continues to spread through sex between men, sex
between men and women, and injecting drug use. An
estimated 150,000 adults and children became infected
during 2000, bringing the total number of infected to
1.4 million. Brazil, the most populated country in the
region, has the largest number of people living with
HIV — 540,000. At the same time, the number of
A/55/779
AIDS cases, especially the number of AIDS-related
deaths, has significantly decreased as a result of
widespread access to life-prolonging treatments. From
1 995 to 1998, mortality from AIDS in Brazil fell by 30
per cent.
15. The Caribbean has the highest rate of HIV
infection in the world after sub-Saharan Africa, and
AIDS is already the single greatest cause of death
among young men and women in this region. In Haiti,
the Caribbean’s worst-affected country, about 8 per
cent of adults in urban areas and 4 per cent in rural
areas arc infected. Across the Caribbean, the epidemic
is spreading particularly fast through heterosexual
transmission. It is driven by early sexual activity
combined with frequent partner changes and age
mixing — younger women having sex with older men.
16. In Central American countries— ravaged by
years of armed conflict, environmental destruction and
uneven
social development—
the epidemic is
concentrated
among
disadvantaged
and
mobile
populations, with increasing prevalence rates among
women.
17. A major challenge that cuts across the region
remains the need for awareness programmes aimed at
men who have sex with men and injecting drug users.
High-income countries
18. High-income countries witnessed a major decline
in AIDS-related deaths in the 1990s from AIDS
because effective treatment, mainly antiretroviral
therapy, is keeping people alive longer. However, that
good news is tempered by a stall in prevention efforts
and by new infections, which show no sign of slowing.
In 2000, despite years of awareness about AIDS,
30,000 people in Western Europe were infected and
45,000 in North America.
19. Thousands of new infections occurred through
unsafe sex between men. In recent years, fewer young
men have lost friends to AIDS and many mistakenly
consider antiretrovirals a cure, reflecting a growing
complacency among this high-risk population. At the
same time, stigma around homosexuality persists,
hampering
prevention
efforts
and
reinforcing
discriminatory attitudes.
20. Heterosexual sex is now the main mode of HIV
transmission in some European countries. In the United
States,
HIV/AIDS
is
also
affecting
minority
populations disproportionately, with disadvantaged
young African-Americans in rural areas one of the
groups at high risk of HIV infection.
21. The bulk of new infections continues to occur in
men who have sex with men and injecting drug users,
however. While prevention programmes consisting of
AIDS education, condom promotion, needle exchange
and drug treatment have proven effective, strong
political determination is now needed in order to apply
energetic prevention measures and reach out to
marginalized people and their partners.
III. Socio-economic impacts
of HIV/AIDS
22. AIDS, while continuing to be an important health
issue, has evolved into a complex social and economic
emergency. HIV primarily affects young adults, cutting
a broad path through society’s most productive layer
and destroying a generation of parents, whose death
leaves behind orphans, desocialized youth and child
headed households. AIDS has a significant impact on
the more educated and skilled segments of society
because HIV primarily infects productive young adults
rather than children or the elderly. The stigma attached
to HIV and AIDS adds to the impediments encountered
in mounting a response to AIDS, in addition to the
discrimination already faced by infected individuals.
HIV also increases social and economic vulnerability
among women.
23. In the hardest-hit regions, AIDS is now reversing
decades of development. It changes family composition
and the way communities operate, affecting food
security and destabilizing traditional support systems.
By eroding the knowledge base of society and
weakening production sectors, it destroys social
capital. By inhibiting public and private sector
development and cutting across all sectors of society, it
weakens national institutions. By eventually impairing
economic growth, the epidemic has an impact on
investment, trade and national security, leading to still
more widespread and extreme poverty. In short, AIDS
has become a major challenge for human security.
A.
Demographic impacts
24. AIDS deaths are premature deaths. In countries
where HIV spreads mainly through unsafe sex between
7
A/55/779
men and women, the majority of infected people
acquire HIV in their twenties or thirties and will die of
AIDS on average a decade later. In a number of
countries, AIDS has resulted in increased mortality
among children under five, and is now wiping out half
a century of development gains, including increases in
life expectancy al birth, particularly in southern Africa,
where life expectancy increased from 44 years in the
early 1950s to 59 in the early 1990s. Between 2005 and
2010, it is expected to fall to 45 years and even lower
in some countries.
25. The lifetime risk of dying of AIDS is far higher
than the general prevalence rate would suggest. For
example, where prevalence is 15 per cent and rates
continue to apply through their lifetime, over half of
today’s 15-year olds will die. In Botswana, which has a
prevalence rate of 36 per cent, over three quarters
would die of AIDS. In some countries, these trends are
reshaping the traditional population pyramid into a new
“population chimney”, with a narrowing base of young
people and children. The most dramatic change in the
pyramid occurs when young adults, infected early,
begin to die of AIDS. Only those adults who escape
HIV infection can expect to survive to middle and old
age. Also, recent studies among various African
populations indicate that rates of HIV infection in
young women aged 15 to 19 may be five to six times
higher than in young men.
Gender
28. The gender dynamics of the epidemic are farreaching due to women’s weaker ability to negotiate
safe sex and their generally lower social and economic
status. More women than men are caretakers of people
with AIDS, which may saddle them with the triple
burden of caring for children, the elderly and people
living with AIDS — as well as financial responsibility
for their family’s survival. Girl children or older
women may find themselves at the head of households,
and many girls from families facing poverty risk
exploitation, especially sexual exploitation, when
trying to bring in additional income. Mother-to-child
transmission is also a concern.
Education
29. Where AIDS is widespread, education— an
essential building block of development— is being
impaired. The epidemic is eroding the supply of
teachers and diluting the quality of education. AIDS
also reduces the amount of money available for school
fees, and forces an increasing number of children —
more girls than boys — to drop out of school in order
to help at home. As teachers become ill and unable to
work, some schools are closing. In parts of Southern
Africa, one fifth of teachers and secondary school
students are estimated to be HIV-positive.
Health services
B.
Social impacts
26. The premature death of large numbers of young
adults has an inevitable impact on those societies most
affected by AIDS.
Households and families
27. Households and families bear the brunt of the
misery caused by AIDS. Those who fall ill become
unable to work, forcing family members to care for
them rather than producing food or income. According
to studies of rural families in Thailand and urban
families in Cote d’Ivoire, farm output and income fell
between 52 and 67 per cent in families affected by
AIDS. Families arc also subject to discrimination if
they have members who are HIV-positive, often facing
reduced access to publicly available social and
economic benefits.
8
30. Since the beginning of the epidemic, 21.8 million
people have fallen sick and died of AIDS, placing everincreasing demands on health services in the worstaffected countries. Often, this increased demand
stretches already over-burdened public health systems.
In 1997, public ' health spending on AIDS alone
exceeded 2 per cent of gross domestic product (GDP)
in seven of 16 African countries sampled, a staggering
amount for countries whose health expenditure for all
diseases accounts for 3 to 5 per cent of GDP. Adding to
these increased demands is the crushing burden of
AIDS on health workers themselves. A study in
Zambia showed that in one hospital, deaths among
health-care workers increased by a factor of 13 over a
decade, largely because of HIV. Overburdened public
health systems may also further marginalize minority,
disabled and elderly women with HIV/AIDS. HIV
positive people also lack access to medicines and to
health care, often facing discrimination from hospital
staff or health-care systems.
A/5S/779
Orphans
31. AIDS has a dramatic impact on children,
particularly through the emergence of an entire
generation of orphans to families affected by HIV. To
date, the epidemic has left behind 13.2 million orphans,
children who before the age of 15 have lost either their
mother or both parents to AIDS. Studies have shown
that children orphaned by AIDS arc at greater risk of
malnutrition, illness, abuse and sexual exploitation
than children orphaned by other causes. The stigma and
discrimination they face can also deprive them of basic
social services and education. Today, in many African
countries 20 to 25 per cent of all households are
fostering orphans. The long-term consequences of such
shifts in socialization are incalculable.
Human D evelopment Index
32. The Human Development Index (HDI), a
generally accepted measure of development based on
economic and social indicators, is also affected by
AIDS. In Namibia, for example, the HDI is predicted to
fall 10 per cent by 2006 and in South Africa by 15 per
cent before 2010 because of AIDS.
C.
Economic impacts
Economic growth
33. Growing evidence suggests that AIDS is having a
devastating effect on economic growth and incomes.
According to the World Bank, had average national
HIV prevalence in sub-Saharan Africa not reached 8.6
per cent in 1 999, per capita income on that continent
would have grown 1.1 per cent, nearly three times the
actual growth rate of 0.4 per cent achieved during
1990-1997. In the case of a typical sub-Saharan
African country with a prevalence rate of 20 per cent,
overall GDP growth would be 2.6 per cent lower each
year. At the end of 20 years, the economy would be
two thirds smaller than it would otherwise have been.
Workers
34. AIDS reduces the number of healthy workers,
especially
experienced
workers
in
their
most
productive years. This raises dependency, diminishes
human capital, and may cut productivity growth by as
much as 50 per cent in the hardest hit countries.
Public sector
35. In the public sector, AIDS reduces government
revenues and puts severe strain on budgets as spending
on health and social welfare mount. Scarce capacity is
depleted, and the return on other public investments
falls.
G overnance
36. Governance suffers as a result of the epidemic:
HIV/AIDS has a disastrous impact on the capacity of
Governments, especially on the delivery of basic social
services. Human resources are lost, public revenues
reduced and budgets diverted towards coping with the
epidemic’s impact. Similarly, the organizational
survival of civil society institutions is under threat,
with a corresponding impact on democracy.
Private sector
37. In the private sector, firms face higher costs in
training, insurance, benefits, absenteeism, medical
costs, sick leave, funerals and pensions. At the same
time', the average experience of their labour force falls,
reducing accumulated knowledge within firms. The
most seriously affected businesses are those that are
labour-intensive, such as transport. Companies in
Africa have already felt the impact of AIDS on their
bottom line. One sugar estate in Kenya quantified the
cost of HIV infection as 8,000 days of labour lost to
illness in two years, a 50 per cent drop in processed
sugar recovered from raw cane in four years, and a
tenfold increase in health costs. The company
estimated that more than three quarters of all illness
was related to HIV infection.
Agriculture
38. AIDS also threatens the basic livelihood of
people living in developing countries, especially the
poor. In many countries, agriculture provides a living
for as much as 80 per cent of the population. As adults
in rural areas fall ill, productivity drops off
dramatically. Patterns of cropping shift from cash crops
to subsistence farming, reducing household income and
forcing the family to sell such assets as equipment or
cattle to get by. Children may be withdrawn from
school to help with work or tend to the sick, impairing
their own development. In some areas, women
dominate agricultural labour — up to 80 per cent —
9
A/55/779
and this requires
HIV/AIDS.
D.
a
gender-sensitive
response
to
Impact on security
39. The reverse in economic growth and development
gains being experienced in some countries affected by
AIDS is magnified by the fragility and complexity of
geopolitical systems. The epidemic is present in a
number of countries already facing conflict, food
scarcity and poverty, and poses real threats to social
and political stability where it is most concentrated —
in Africa. The Security Council redefined security as
an issue going well beyond the presence or absence of
armed conflict, one which affects health and social
services, family composition and social structure,
economies and food security.
40. There is now broad acknowledgement that AIDS
has become a global development crisis, potentially
affecting national security in some countries. Armed
conflict and associated population movements provide
fertile ground for the spread of AIDS, while the
epidemic itself, can be seen as a risk factor in the
breakdown of social cohesion and in social and
political instability, in addition to a threat to security
forces.
IV. Global, regional and national
responses to AIDS
A. Global response
41. Until recently, the response to AIDS lacked an
essential
element:
political
recognition
and
commitment at the highest global and national levels.
Today, AIDS is on the world’s global political agenda
and is considered an issue of utmost urgency in nearly
every country. Given the societal root causes, the
breadth of impact of HIV and the continuing stigma it
attracts, a purely medical or public health response is
insufficient. Political leadership at the highest levels is
needed to mobilize an effective multisectoral response.
Fund (UNICEF), the United Nations Development
Programme (UNDP), the United Nations Population
Fund (UNFPA), the United Nations Educational,
Scientific and Cultural Organization (UNESCO), the
World Health Organization (WHO) and the World
Bank — in a joint and co-sponsored programme, the
Joint United Nations Programme on HIV/AIDS
(UN/AIDS). A seventh, United Nations International
Drug Control Programme (UNDCP), joined in 1999.
The urgent need for concerted action on AIDS was
further emphasized
in
April 2000, when
the
Administrative Committee on Coordination called on
all United Nations agencies to engage in AIDS through
policy development and resource allocation to
HIV/AIDS activities, and developed measures designed
to improve support to United Nations staff and
dependants living with HIV or AIDS.
43. UNAIDS co-sponsors have made significant
progress in mainstreaming HIV/AIDS into their
programmes, and AIDS is now an institutional priority
in
the respective organizations
(for individual
co-sponsors’ activities, see annex II). Collectively,
UNAIDS co-sponsors and the UNAIDS secretariat
have established a joint budget and work plan and are
developing a United Nations system-wide strategic
plan
on
HIV/AIDS. Cooperation
with
non-co
sponsoring United Nations organizations and agencies,
including the Food and Agriculture Organization of the
United Nations (FAO), the International Labour
Organization (ILO), the Office of the United Nations
High Commissioner for Human Rights, the United
Nations Development Fund for Women (UNIFEM) and
the World Food Programme (WFP) is also expanding.
Development agencies
44. International development agencies have taken
significant steps to elaborate comprehensive strategies
on HIV/AIDS and to increase technical and financial
resources for the fight against the epidemic. Most
donor countries have also begun to mainstream AIDS
into
their
overseas
development
cooperation
programmes, and have developed global HIV/AIDS
strategies as an integral part of their overall
development assistance programmes.
Joint United Nations Programme on HIV/AIDS
Non-profit foundations
42. In 1996, to mobilize the main United Nations
agencies in a coordinated response and individually in
their respective areas of work, the United Nations drew
together six agencies — the United Nations Children’s
10
45. Non-profit foundations are increasingly in the
forefront of the response. For example, the Bill and
Melinda Gates Foundation has made large grants to
A/55/779
support AIDS prevention among youth and health-care
work in several African countries. The United Nations
Foundation (UNF) funds AIDS-related activities in a
Southern Africa initiative and in Ukraine, and will
expand efforts to support activities in India, South Asia
and Central America in 2001. UNF has also funded
several other projects that integrate AIDS work into
broader projects on education, health and development.
Support early on in the epidemic was provided by the
Rockefeller Foundation.
Civil society
46. Civil society has led the way on some of the most
sensitive issues, such as drug-related prevention,
human rights promotion and protection of people living
with
HIV/AIDS. NGOs
have made significant
contributions to the development of appropriate models
for community care and support. Along with several
treatment action groups, they have initiated advocacy
programmes and placed the issue of equitable and
affordable access to care, treatment and support onto
global and national agendas. Civil society groups arc
also
key
actors
in
regional
and
international
partnerships, such as the Internation al Partnership
A gainst A ID S in A frica.
Corporate sector
47. The
corporate
sector
has
an
important
contribution to make, particularly in the regions of the
world hardest hit by HIV/AIDS. Organizations
involving and representing businesses, such as the
Global Business Council on HIV/AIDS, are taking the
lead in promoting the involvement of business in crosssectoral partnerships with Governments and NGOs.
Such companies as MTV, Standard Chartered Bank,
Coca-Cola and Unilever are increasingly showing
leadership in the partnership field.
48. As well as researching and developing new HIV
drugs, multinational pharmaceutical companies have
initiated corporate responsibility programmes to help
support global responses to HIV/AIDS, including
training of health-care professionals in developing
countries
and
support
for
community-based
organizations. As part- of broader endeavours to
improve access to HIV care, support and treatment in
developing countries, five companies agreed in May
2000 to collaborate with the UNAIDS secretariat,
WHO, UNICEF, the World Bank and UNFPA by
reducing the prices of their medicines. This reflects an
increasing acceptance by the industry of tiered pricing
of commodities and treatments (namely, significantly
reduced pricing for developing countries), within a
wider review of options for improving access to and
the affordability of HIV-related commodities and
services. The manufacture and distribution of generic
drugs in line with international agreements and the
provisions that they make provide further opportunities
to widen access to care and treatment. However, much
more needs to be done. AH options for improving
access to care should be pursued at the global and
national level. Options at the country level would
include support for strategic plans for care that address
the needs of health and social systems, as well as
equity issues and the use of public subsidies for
commodities and medicines. Globally trade policy
provisions need to be used more effectively to increase
access to care. The availability of low-cost generic
drugs needs to be expanded, in accordance with
national laws and international trade agreements and
with a guarantee of their quality. The relevance of
compulsory licensing and the development of national
manufacturing capacities need further expansion.
Research and academic organizations
49. With no cure for HIV/AIDS in sight, further
research
on
effective
prevention
and
cate
technologies — such as vaccines, microbicides and
potent new treatments — remains crucial. International
initiatives, such as those on vaccines development,
including the International AIDS Vaccine Initiative and
the
African
Vaccine
Initiative,
are
becoming
increasingly essential to the response. Academic
research institutions from both the public and private
sectors also have an important role to play. In addition,
new technologies, innovative financing and delivery
systems need to be developed so that access is as
prompt and broad as possible.
B. Regional and national responses
50. While global responses to AIDS are essential,
regional and national responses arc key elements in
halting the spread of the epidemic, both in their own
right and since regional responses facilitate support to
national-level initiatives. The real success in the fight
against HIV and AIDS will be fought or won at the
national level.
11
Aissm9
United Nations theme groups on HIV/AIDS
51. The principal avenue of United Nations support
to national-level AIDS responses is provided by United
Nations theme groups on HIV/AIDS, made up of co
sponsoring and other relevant agencies, bilateral
donors, NGOs and representatives of the host country.
Working
through
the
United
Nations
resident
coordinator system, theme groups — guided by
national priorities and by Governments — support
national efforts to curb the epidemic by working
together on joint programme design and planning,
monitoring and resource mobilization, while increasing
their own HIV/AIDS activities.
Non-governmental organizations and community
based groups
52. Civil
society,
especially
non-governmental
organizations and community-based groups at the
national level, such as groups of people living with
HIV/AIDS,
have
made
critically
important
contributions to responses to HIV/AIDS. This has often
been
done
with
the
support of international
organizations,
international
networks
of groups
representing people living with HIV/AIDS, AIDSspecific NGOs and mainstream NGOs, ranging from
faith-based groups to membership organizations and
service groups, that go beyond a basic response to
HIV/AIDS and address the development issues that
fuel the epidemic.
Businesses
53. Businesses — both large and small — can
provide HIV prevention and related programmes in the
workplace, including support for employees infected or
affected by HIV. As well as participating in HIV/AIDS
programmes in the local communities where they are
based, businesses can be active in cross-sectoral
partnerships with Governments and NGOs. The
emergence
of
national
business
coalitions ■ on
HIV/AIDS helps to engage and support the response of
local com panics.
Africa
54. African leaders are courageously breaking the
silence surrounding the epidemic, publicly and
repeatedly declaring AIDS a national emergency and
establishing the institutions and mechanisms needed to
respond swiftly to the spread of HIV.
12
55. While the epidemic in Africa continues to spread,
there is well documented evidence of successes in the
response to HIV/AIDS, particularly among young
people. The epidemiological information coming from
Zambia, Uganda and the United Republic of Tanzania
is evidence of a new generation responding to the
threat of HIV/AIDS by changing their behaviour in
ways that appear to be protecting them from HIV.
Infection rates among young women in Lusaka have
been halved since 1 993 through prevention efforts,
which have also resulted in less premarital sex,
increased male sexual abstinence and less frequent
casual sex. In some parts of Uganda, the first African
country to reverse its own epidemic, infection rates
among teenage girls dropped dramatically during the
1990s, as did teen pregnancies. Successes have also
been recorded in the Mbeya region of the United
Republic of Tanzania, where prevention efforts have
reduced HIV infection rates among pregnant women
attending clinics by 25 per cent.
56. Partnerships are being established at several
levels. The International Partnership Against AIDS in
Africa (IPAA) is a coalition of United Nations
agencies, donors and the private and community
sectors, under the leadership of African countries,
which is designed to intensify the response to AIDS
across Africa. A number of partnerships are being
established at national level, including a partnership
forum in Tanzania and a local-level care and support
initiative in South Africa’s Gauteng province.
57. Strong national strategic responses are being
forged through single, powerful national AIDS plans
involving a wide range of actors — government, civil
society, people infected with and affected by HIV, the
private sector and donors. More than 30 countries in
sub-Saharan Africa have completed strategic planning
processes which have helped build consensus and
mobilize resources, at times leading to successful
round-table discussions with all interested parties and
to significant funding commitments, as was the case in
Malawi and Zambia in 2000. In many countries, highlevel councils and national AIDS commissions have
been created under the responsibility of the head of
State to provide leadership for a true multisectoral
response.
Nevertheless,
with
some
important
exceptions, there has been insufficient engagement
from social and economic sectors outside the health
sector, which remains a key challenge for national
responses.
A/S5/779
58. Africa has demonstrated to the world the
importance of local responses to HIV/AIDS, which aim
to empower com munities through local partnerships
consisting of social groups,’ service providers and
facilitators. Initiatives arc being implemented in
Burkina Faso, Ghana, the United Republic of Tanzania
and
Zimbabwe,
for
example,
with
increasing
involvement in the response of local leaders, such as
mayors or traditional leaders.
59. Beyond
Governments
and
development
institutions, civil society — made up of NGOs,
religious groups and the private sector — is
intensifying its involvement in the response against
HIV/AIDS. An increasing number of communities are
mobilizing to face the multiple challenges of
prevention and care, including denial, silence and the
predominantly negative attitudes adopted towards
people living with HIV/AIDS.
60. There is increasing evidence that businesses arc
recognizing the impact of HIV on the human, financial
and social costs of their operations and host
communities. They have responded in many different
ways, from action to protect workforces to community
outreach and philanthropy. In Zimbabwe, a workplace
based peer education programme in 20 companies
resulted in 30 per cent fewer HIV infections than in 20
companies without a similar programme. In Cote
d’Ivoire,
the
national
electrical
company
has
implemented prevention methods, improved medical
monitoring of employees and increased participation by
companies in employee health insurance schemes.
Companies have also begun to collaborate through
business coalitions on HIV/AIDS at the national level.
61. Children
are especially
vulnerable to the
epidemic, and examples abound of responses to
mobilize political will, reallocate national resources,
bolster the capacity of families and communities to
care for and support orphans, stimulate and strengthen
community-based
responses
and
ensure
that
Governments protect the most vulnerable children.
62. The vast majority of children living with HIV or
who have already died of AIDS in Africa were born to
HIV-infected mothers. The most vulnerable of
populations, these children acquired the virus in the
womb at about the time of childbirth or during
breastfeeding. Making HIV counselling and testing
services widely available so that infected women can
decide whether to take preventive drugs during
pregnancy is a measure that could save the lives of
hundreds of thousands of children. This technology,
which has been demonstrated in pilot settings, has
enormous potential to affect the epidemic. The
challenge is to apply the technology on a large scale.
The Uganda AIDS Information Centre, which has
provided voluntary counselling and testing (VCT) to
over 350,000 clients since 1990, is beginning to
introduce same-day VCT services; previously, clients
had to wait two weeks to receive their HIV test results,
and 25-30 per cent did not return to get them.
63. The provision of HIV care is a major challenge
for many African countries, where health services face
dwindling resources and are already hard pressed to
cope with a host of older diseases. The need to invest
in prevention and essential services has, in the past,
taken precedence. However, building on the strengths
of local communities, grass-roots home-based care
services have played a critical role in providing basic
care for people living with HIV/AIDS. The feasibility
of incorporating care into broader HIV public health
programmes has been increasingly accepted, and many
more African countries are developing national
strategic plans, which include a strong care component,
helped by wider discussions on options to improve the
affordability
of
HIV-related
commodities
and
treatm ents.
64. An enormous resource gap continues to exist,
however, even though resources are being mobilized by
African Governments and international donors. In
South Africa, the nation’s regular budget includes
substantial allocations for AIDS prevention and care
programmes. In Zimbabwe, the Government mobilized
additional funds for AIDS by instituting an AIDS levy
among the general population.
65. Additional — albeit insufficient — funds are also
forthcoming through debt relief, and AIDS now figures
prominently in funding activities for Africa. Through
the heavily indebted poor countries initiative, some
USS 30 billion in debt reduction had been achieved by
the end of 2000, with specific funding set aside for
AIDS representing USS 20 million in 2001. The World
Bank is reviewing its portfolio in countries to retrofit
unused funds into the fight against AIDS, and has
created a multi-country AIDS project to make more
funds available to the HIV/AIDS response. AIDS is a
priority among United Nations agencies and major
multilateral and bilateral partners in sub-Saharan
13
AJSSI779
Africa, many of whom are mainstreaming AIDS into
ail their sectoral interventions.
66. Funds arc also made available through round
table mechanisms, which bring together all interested
parties at the country level to mobilize funds for
implementation of the strategic plan. Some USS 121
million in Malawi was recently made available in this
way, with support from the United Nations system and
international donors, and an additional USS 113 million
in Zam bia.
Asia and the Pacific
67. Success is also evident in Asia, and includes
Thailand’s community-based care models and its
successful 100 per cent condom programme model,
now being tested in Cambodia; peer outreach projects
with sex workers in Calcutta, Kerala and Dhaka;
projects with injecting drug users in Nepal, India and
Malaysia; and the enactment of supportive national
AIDS legislation in the Philippines. While diversity
and Asia’s huge population exacerbate the difficulties
of
mounting
timely
and
effective
responses,
opportunities abound in a region where overall HIV
prevalence is still low but where the incidence of new
infections is rising. The opportunity cost of failing to
act vigorously and urgently could be enormous..
68. In South Asia, the problem of underdevelopment
inevitably constrains the response to HIV/AIDS. The
growing gap between rich and poor, the huge numbers
of rural poor, and the systematic underfunding of
health and other social sector spending provide a
challenging backdrop for the response to HIV/AIDS.
69. Despite Asia’s diversity, the region faces some
common
challenges. One
challenge is to
act
“upstream” to prevent or minimize new infections
rather than reacting “downstream” to the impact of
AIDS. This means vigorous prevention activity among
those most at risk — the millions of migrant workers
and the many thousands of refugees. It means
addressing large-scale sex-related activities, including
the trafficking of girls and women. It also means
tackling human development issues of particular
significance to Asia, such as gender inequalities. It also
requires dealing with taboo and ensuring widespread
information and services are available to all, especially
young people.
70. Another challenge
pervasive exclusion and
14
lies in confronting the
stigmatization that afflict
people living with HIV, especially in low-prevalence
situations, an issue highlighted at the last regional
conference on AIDS in Asia and the Pacific, held in
Kuala Lumpur in October 1999. A further challenge is
to adapt and apply lessons learned from successful or
effective pilot projects and to step up the response.
This is now being attempted among sex workers and
drug users through the Kathmandu Valley Initiative in
Nepal and in Tamil Nadu in India, where the AIDS
prevention and control project to promote safer sex
behaviours
among
vulnerable
groups
is
being
expanded.
71. Recent positive developments in facing up to
these challenges include increased political activity.
The Asian Forum of Parliamentarians on Population
and Development brought together political leaders
from 11 South-East and East Asian and Pacific
countries
last
year,
enhancing
their
personal
commitment to HIV/AIDS prevention and care
programmes. Member States of the Association of
Southeast Asian Nations (ASEAN) have included
AIDS on the agenda of their November 2001 summit in
Brunei.
72. There is also growing recognition of the need for
a broad-based response involving different sectors and
for innovative partnerships, especially between the
public and
private sectors. For example, the
involvement of Rotary and Lions Clubs and of business
coalitions in the response to AIDS in Thailand is being
reflected
in similar partnerships in India, the
Philippines and Bangladesh. Uniformed and armed
forces
are increasingly
involved
in
prevention
programmes, notably in Cambodia and India, as well as
in Viet Nam, the Lao People’s Democratic Republic
and China. Religious leaders and groups have become
more prominent in the AIDS response.
Eastern Europe and Central Asia
73. Despite an explosive spread of HIV in several
countries in the region, the epidemic is still in its early
stages and confined mainly to injecting drug users and
their partners. High levels of injecting drug use and
sexually transmitted infections, coupled with socio
economic turmoil and a rapid rise in sexually
transmitted infections after the breakdown of the
Soviet Union, could lead in a few years to larger scale
and more generalized epidemics. A unique opportunity
still exists for effective targeted interventions,
particularly among injecting drug users.
A/55/779
74. However, recent political and legal reforms in
some countries are opening more effective avenues to
HIV prevention. Ukraine and Belarus, for example,
now have multisectoral committees at the highest
political levels, and have removed legal barriers to
needle exchange programmes, substitution treatment
and other approaches to HIV prevention among
injecting drug users.
75. Further evidence of a mobilizing response comes
from national strategic plans that are in various stages
of development in 13 countries. Joint action to support
and strengthen national responses to HIV/AIDS now
focuses on three regional strategic priorities: expanded
coverage of HIV prevention, targeting injecting drug
users; prevention and control of sexually transmitted
infections; and meeting the needs of vulnerable young
people. Mechanisms have also been established to
improve coordination between regional support and
national responses.
76. A range of initiatives supports the response to
HIV/AIDS in the Russian Federation, including
projects on HIV prevention among injecting drug users,
strategic planning processes in 17 regions, and a joint
response initiative launched recently by the United
Nations theme groups on HIV/AIDS. However, there is
still an urgent need to step up advocacy, social
mobilization and effective use of existing resources,
and to dismantle barriers, such as lack of political
commitment and supportive legislative environments
and lack of financial resources. Substantial support
from the international community is imperative if the
critical transition from short-term project activities to
long-term
sustainable
and
expanded
national
programmes is to be made.
77. A number of regional initiatives also help support
the response to HIV/AIDS. The Baltic Sea initiative
marks the start of a wide process of consultation on
strategic priorities, including a Baltic Sea action plan
on HIV/AIDS. In parallel, several Governments in the
region and Western Europe have established a task
force on communicable diseases in the Baltic Sea
region to recommend joint actions. An initiative in
Central Asia is seeking to reinforce collaboration
among countries and agencies to develop a joint
strategic framework and action plan.
78. Notwithstanding a growing number of local and
national initiatives, the response remains uneven and
insufficient.- The development of effective, sustainable
national responses has been constrained by insufficient
high-level political leadership, a climate of economic
hardship, stigmas concerning sexual behaviour and
injecting drug use, and legal barriers.
Latin America and the Caribbean
79. Prevention efforts in parts of Latin America have
met with considerable success: mortality and AIDS
incidence are falling, while care is increasingly
widespread throughout the region. For example,
according to a 1999 survey in Brazil, prevention
campaigns have increased condom use during first
sexual contact from 4 pet cent 15 years ago to 48 per
cent today — and up to 70 per cent among certain
groups, such as students from more privileged socio
economic
backgrounds.
Targeting
prevention
programmes towards men who have sex with men
continues to be a major challenge, however.
80. While in some countries treatment of basic health
needs, such as opportunistic infections, is problematic,
other countries have responded to demands from
groups of patients, doctors and human rights
organizations to provide access to antiretroviral drugs.
With a rights-based approach to care, together with
local production of generic antiretrovirals in some
countries, coverage of patients is increasing in Brazil,
Argentina, Chile and Uruguay, where HIV-positive
people are living longer, healthier lives. Since the
introduction of antiretrovirals, reported AIDS deaths in
Brazil have dropped more than 25 per cent.
81. Providing AIDS drugs has also been at the centre
of rapidly emerging South-South cooperation, a
strategy anchored in the understanding that partners
sharing knowledge become more powerful and
effective. At present, 19 Latin American and Caribbean
countries arc involved in the Horizontal Technical
Cooperation Group on AIDS, a key instrument in
fighting the spread of AIDS. Brazil has also
championed technical exchange with other countries in
the region, as well as with, lusophone Africa,
integrating the benefits of South-South cooperation
into its response.
82. The Forum 2000 conference on AIDS held in Rio
de Janeiro in November 2000 demonstrated the extent
of regional cooperation and the strong role of non
governmental organizations in the response of the
•region, as well as a continuing need to expand
programmes targeting men who have sex with men.
15
A/55/779
While homosexual transmission constitutes 40 per cent
of transmission in Latin America, less than 1 per cent
of AIDS programme budgets goes to prevention for
men who have sex with men, with the exception of
Brazil, which devotes significant resources to this area.
83. In the Southern Cone of Latin America, an
important aspect of the epidemic is HIV transmission
through injecting drug use. A subregional initiative to
address this issue and to intensify the policy dialogue is
currently under way.
84. In the Caribbean, ministries of health have long
been aware of the escalating epidemic and its
implications for the region, but a series of high-level
meetings during 2000 ushered in a new level of public
awareness and visibility for AIDS. HIV/AIDS has
emerged as an urgent development priority, and a
regional strategic plan of action was developed by the
Caribbean Task Force on HIV/AIDS, chaired by the
Caribbean Community (CARICOM), which brings
together a wide range of members from national
Governments, international and regional institutions,
NGOs and donors. The newly established Pan
Caribbean
Partnership
illustrates
the
increasing
commitment of Caribbean Governments to address
HIV/AIDS, and has led to new resource commitments
by the World Bank and the European Commission.
85. In
Central
America,
vulnerable
mobile
populations are the main focus for regional action
programmes being developed with the support of the
National Institute of Public Health in Mexico, with
Proyecto Accidn SIDA de Ccntroamcrica and with the
Regional Initiative for HIV/AIDS and other projects
for the prevention and control of sexually transmitted
diseases in Latin America and the Caribbean. National
strategic AIDS plans are under implementation in all
Central American countries. Central America is also
emerging as a region where the epidemic is increasing
its pace and where greater attention needs to be placed
on directing responses to priority areas, such as the
epidemic among men who have sex with men.
High-income countries
86. In high-income countries, HIV infections arc
concentrated principally among injecting drug users
and men who have sex with men, although
transmission through heterosexual sex is on the rise.
Prevalence in the total population remains low. While
some
communities
and
countries
have
acted
16
aggressively to limit HIV infection among injecting
drug users, other countries have not. Needle exchange
and other prevention programmes have been effective
where implemented, but often the political costs of
these programmes have been considered too high for
implementation on a large scale. Among men who have
sex with men, prevention programmes are more widely
accepted and implemented, and as a result risk
behaviour and the resulting HIV infection rate has
dropped significantly since the mid-1980s. However,
there is some recent evidence that risk behaviours may
again be on the rise in some communities. There is a
strong need for continued support for increased
preventive efforts among men who have sex with men.
V. Key lessons learned and elements
of a successful response
87. Twenty years of fighting the AIDS epidemic have
resulted in a growing understanding of what constitutes
effective action. Truly effective action is underpinned
by the principles set and the lessons learned from the
current global and national-level responses.
88. Fundamental principles
response to HIV/AIDS are:
guiding
a
successful
• That gender inequalities fuelling the epidemic
must be explicitly addressed;
• That prevention methods, life-saving treatments
and the results of scientific breakthroughs in
prevention and care must be made broadly
available on an equitable and affordable basis to
all;
• That people living with and affected by
HIV/AIDS must be
actively engaged and
supported in their efforts to address the epidemic
in communities around the world;
■ That national Governments, working with civil
society, must provide the leadership and means
required to ensure that national and international
efforts respond to country and community needs.
Successful responses are linked to a respect for
human rights
89. A number of human rights concerns exist and
must be addressed in order to combat stigma and
eliminate discrimination based on HIV status. In
A/55/779
addition to discrimination against people infected with
HIV, other important issues include the right to health
care, the right to information and other social and
economic rights contained in United Nations human
rights conventions and the Universal Declaration of
Human Rights. The international guidelines on
HIV/AIDS and human rights are key to a response
based on human rights, and Governments should
continue their efforts to implement them.
Success has been demonstrated in addressing
the epidemic
90. Collective experience
with
HIV/AIDS
has
evolved to the point where it is now possible to state
with confidence that it is technically, politically and
financially
feasible
to
contain
HIV/AIDS
and
dramatically reduce its spread and impact. The first
two decades of the epidemic
have generated
unprecedented learning and mobilization throughout
the world. HIV, the virus that causes AIDS, has been
definitively established and sufficient knowledge is
available about its
modes
of transmission
to
substantially slow its spread.
91. The most important lesson learned from countries
that have successfully responded to the epidemic has
been the critical role of government and civil society
leadership in increasing the visibility of the epidemic
while decreasing the stigma associated with it. In an
increasing number of countries, partnerships between
Governments and civil society have begun to bring
together Governments, the international community
and interested activists: people living with HIV/AIDS,
NGOs, community-based organizations, religious and
academic institutions and the private sector.
populations with
program m cs.
access
to
effective
prevention
Capacity and commitment to act have increased
93. There has been tangible progress in assembling
the essential political, policy and technical experience
required to mount a global response equal to the scale
of the epidemic. Responses with strong political
support across all planning and social sectors arc
increasing. Financial resources are now being made
available at increased rates within affected countries,
from bilateral and multilateral development agencies
and the commercial and foundation sectors and through
debt-relief efforts. In addition, new communications
capabilities, such as the Internet, are enabling partners
to interact and access information at a pace unimagined
even a decade ago.
National plans involving multiple actors have
been developed
94. The basic lesson learned for any national AIDS
plan is that interventions to reduce HIV risk and
change behaviour are effective when a range of
government ministries and partners in the social,
economic and health sectors are involved in providing
an enabling environment for large-scale prevention,
care and support programmes. Single, isolated
activities do not yield sustained results. Effective
programmes require focused action and steadily
expanding coverage. The importance of involving the
target population as well as people living with
HIV/AIDS in the design and implementation of
interventions cannot be stressed enough.
Prevention works
A greater epidemic can be prevented
92. Vigorous measures taken now to reduce the rate
of HIV infections will pay substantial dividends in
years to come in countries with high or low prevalence.
Large-scale prevention programmes in virtually all
settings have clearly demonstrated that the spread of
HIV can be reduced, especially among young people.
Prevention programmes have also been successful
among hard-to-reach populations, particularly in harm
reduction among injecting drug users. In Asia,
Australia, Europe, Latin America and the Caribbean,
North America and sub-Saharan Africa, there is strong
evidence of the decline of HIV incidence in
95. Intensive information and education programmes
are essential to reduce the risk of sexual transmission
in the general population and to help promote safer
sexual behaviour, for example through abstinence,
fidelity and condom use. The social marketing of both
male and female condoms increases their accessibility,
although condoms will need to become available on a
much larger scale in many countries. Comprehensive
(and targeted) interventions should respond specifically
to the needs of young people before they become
sexually active.
96. One particularly effective intervention is the
prevention of mother-to-child transmission. A short
17
Ajssrm
one-month course of antiretroviral treatment given to
HIV-infected mothers late in pregnancy can cut the rate
of transmission to children by 20-50 per cent. Pilot
projects target limited numbers of women and their
unborn infants but have a huge potential for expansion.
Voluntary HIV counselling and testing, at present
available only to a tiny proportion of sub-Saharan
African men and women, serves as a critical entry
point for HIV care and prevention, with huge potential
for accelerating the response.
A comprehensive approach to HIV/AIDS care
and treatment is essential
97. The care and treatment of people living with
HIV/AIDS represents one of the greatest challenges in
the years to come. To meet it, a comprehensive
approach to care must be adopted. This includes more
effective support to home- and community-based care,
as well as equitable access to medical treatment,
including drugs for opportunistic infections and
antiretroviral therapy.
98. In industrialized countries, advances in the
management of opportunistic infections and the
development of antiretroviral “combination” therapy
for HIV infection itself have transformed the lives of
people with HIV/AIDS. Increasingly, HIV/AIDS is
being managed as a chronic condition, and new
treatments have helped to improve people’s health and
enables them to continue normal lives within their
communities. However, combination therapy is not a
cure for HIV/AIDS and its long-term effects are not
clear. Further research into new drugs and therapeutic
approaches remains critical.
99. While medical care in high-income countries is
significantly extending the lives of people living with
HIV, the challenge now is to improve access to care in
developing countries, where 95 per cent of the world’s
36.1 million HIV-infected people live. Some countries,
such as Brazil, have developed effective programmes
that implement a comprehensive approach Io care,
ranging from voluntary counselling and testing,
psycho-social support and good nutrition to the
strengthening of health systems to ensure access to the
prevention and treatment of opportunistic infections,
such as tuberculosis and antiretroviral therapy.
Although these programmes are not yet available to all
that need them, they provide an important model for
expansion. With international support, more developing
countries are developing strategic plans that place
18
access to care at the heart of their national responses to
HIV/AIDS.
Experience
with
home-based
and
community care is now rapidly developing as an
essential component of HIV care and treatment,
particularly in Africa.
100. As well as the need to strengthen health-care
systems, we must address the affordability of
medicines
for
opportunistic
infections
and
antiretroviral therapy, which remains one of the
greatest barriers to improving access to care. Some
progress towards reducing the price of medicines has
been made through partnership with several research
and development-based pharmaceutical companies and
through the increasing availability of generic versions
of antiretroviral drugs. Despite these efforts, much
more needs to be done if access to care and treatment is
not to remain out of reach for the majority of people
living with HIV and AIDS.
101. All the options for improving access to care at the
global, regional and national levels need to be
explored, taking into account the close relationships
between pricing, financing, trade policy and health
care systems. At the country level, strategic plans for
care need to be developed that address health and
social systems, equity issues and the use to which
public subsidies will be put. We need to find ways of
more effectively using trade policy provisions, such as
compulsory licensing or parallel importation, to
increase access to care. The availability of low-cost
generic drugs needs to be expanded, in accordance with
national laws and international trade agreements and
with guarantees of their quality. Other approaches,
including tiered pricing, improved global and regional
procurement policies and new funding mechanisms,
also need to be explored.
Successful responses have their roots
in communities
102. Effective
community-centred
efforts
have
generally been both empowering, strengthening a
community’s capacity to make decisions, and enabling,
assisting them in mobilizing the resources required to
act on those decisions. Community leaders who are
properly informed are better able to assess the reality
of HIV/AIDS within their particular community and to
analyse
the
determining
factors
of
risk
and
vulnerability affecting them. On this basis, local actors
can better address those determining factors and their
A/55/779
consequences and determine their priorities for action
accordingly.
103. Successful strategics addressing HIV/AIDS at the
community
level
require
the
development
of
partnerships to mobilize local responses and access
national resources. These partnerships, comprised of
key social groups, government service providers,
NGOs, people living with HIV/AIDS, community
based groups and religious organizations, serve to
strengthen the awareness and capacity of the various
stakeholders. HIV-positive women’s collectives in
many parts of the world have demonstrated effective
community counselling and prevention interventions.
Empowering young people is essential
104. A'n effective response involves a special focus on
the needs of young people. Sexually active adolescents
will require special family planning information
counselling and health services, as well as treatment
for sexually transmitted diseases and HIV/AIDS
prevention. Governments, at the highest political
levels, should take urgent action to provide education
and services to prevent the transmission of all forms of
sexually transmitted diseases and HIV. Governments
should enact legislation and adopt measures to ensure
non-discrimination
against
people
living
with
HIV/AIDS and vulnerable populations, including
women and young people, so that they arc not denied
the information needed to prevent further transmission
and are able to access treatment and care services
without fear of stigmatization, discrim in ation or
violence.
People living with HIV/AIDS are central to
the response
105. A renewed effort to combat stigma is needed.
Effectively addressing stigma removes what still stands
as a roadblock to concerted action, whether at the local,
community, national or global level. Combating stigma
is a human rights imperative on its own, as well as of
instrumental value in fighting denial and shame, major
obstacles in opening dialogue about HIV/AIDS. One of
the best ways of combating denial is to give AIDS a
“human face” through what is called the greater
involvement of people living with HIV/AIDS, a
principle formally launched at the Paris AIDS Summit
on 1 December 1994. People who live with or are
directly
affected
by
HIV/AIDS
bring
personal
experience to planning and carrying out a response to
the epidemic, challenging complacency and denial,
strengthening the call for urgency in the response, and
moving Governments and their leaders to action.
Epidemic must be tackled on several fronts
106. Although the complexity of the epidemic has far
exceeded all expectations, we have come to recognize
that there is a relationship between the basic dynamics
of the epidemic and that an effective response needs to
tackle three things. HIV infection is associated with
specific risks, made up of behaviours and situations
that might promote the transmission of HIV, with
vulnerability, those factors that make it more likely
that some individuals become infected rather than
others, such as migrant populations or poor women,
and with impact, the consequences of the epidemic for
individuals and communities.
107. Experience has demonstrated that it is not
possible to sustain a long-term and effective response
to the epidemic unless each of these strands — risk,
vulnerability and impact — are addressed. It is through
respecting the relationship between these three
dynamics — which are different for men and
women— that a truly effective response can be
engineered. In particular:
• Decreasing
epidemic;
the
risk
of
infection
slows
the
• Decreasing vulnerability decreases the risk of
infection and the impact of the epidemic;
• Decreasing the impact of the epidemic decreases
vulnerability to HIV/AIDS.
Effective response varies in different settings
108. Different settings require a different focus and a
different balance between these three elements.
National strategic planning processes have stimulated
central and local governments, NGOs, communities
and international partners in many countries to define
strategies that are tailored to the different contexts
within which HIV/AIDS evolves. Regional and
subregional strategies have complemented and added
value to national responses. Settings with low
prevalence but increasing incidence and those with
high prevalence of HIV both require urgent priority.
Strategy development within each setting will need to
reflect its particular opportunities and constraints.
19
A/55/779
VI. Challenges for an expanded
response: the way forward
sector, can a response emerge that is consistent with the
scale of the epidemic.
109. Action by Governments should focus on the
following seven critical challenges for the present
response:
• The challenge
coordination;
of
effective
leadership
• The challenge of alleviating the
economic impact of the epidemic;
social
and
and
• The challenge of reducing the vulnerability of
particular social groups to HIV infection;
• The challenge of achieving agreed targets for the
prevention of HIV infection;
• The challenge of ensuring that care and support is
available to people infected and affected by
HIV/AIDS;
• The challenge of developing relevant
effective international public goods;
and
• The challenge to mobilize the necessary level of
financial resources.
110. In responding to the HIV/AIDS epidemic, the
special session of the General Assembly on HIV/AIDS
provides a unique opportunity to set out a global
agenda and create consensus around a set of core
commitments. These are described in greater detail in a
conference room paper that will be issued to
complement the present report.
Leadership and coordination
111. The AIDS epidemic has been described as a crisis
of governance and a crisis of leadership. Leadership is
fundamental to an effective response. One of the key
issues facing the global community is the development
and sustenance of such dedicated leadership, which is
vital if the nature of the epidemic is to be clearly
understood throughout society and a national response
mobilized. Such an understanding is essential in order
to avoid stigma, secure the full commitment,
involvement and accountability of all sectors, and
avoid fragmentation of efforts.
112. Only through a society-wide commitment, within
a framework established by strong political leadership
that involves community-led interventions as well as
civil society and effective partnerships with the private
20
Alleviating the social and economic impact
113. The broad spread of the impact underlines the
need for a broad multisectoral response that addresses
both institutional capacity and human resources. In
many countries, the epidemic has substantially
undermined the capacity of the key social and
economic sectors in society. The negative impact of
HIV/AIDS is evident in the labour force, the education
sector, the health sector and agriculture, to name but a
few. Economic performance in all its dimensions is
affected. Each sector needs support in order to become
a stronger partner in the coordinated response to the
epidemic.
Assistance
for
poverty
alleviation,
infrastructure development, and education- and health
sector development needs to take into account the
sectoral impact of the epidemic.
Reducing vulnerability
114. Responding to the epidemic therefore requires
effective measures to support risk reduction and reduce
social and economic vulnerability. Social, economic
and political intervention strategies that systematically
promote social inclusion and greater participation, by
extending access to information and essential services
and supportive legal and social norms, can serve to
reduce vulnerability and help overcome the impact of
the epidemic.
Prevention
115. An expanded prevention effort is vital to
containing the spread of the epidemic and to restraining
the costs of responding to it.
116. A focus on prevention is essential to significantly
reduce the spread of the epidemic and the current
impact. A focus on youth is needed to reduce impact in
the future. Over 30 per cent of people currently living
with HIV/AIDS are young people aged under 25.
Targets for prevention encompass preventive methods,
such as expansion of health and sex education,
increased supply of female and male condoms and
other commodities, expanded provisions for preventing
mother-to-child transmission, measures aimed at
prevention among injecting drug users, and greater
access to voluntary counselling and testing. -
AJ55/179
Care and support
117. Preventing HIV infection is inseparable from care
and support for those affected by HIV/AIDS.
Prevention of infection and amelioration of the impact
of the epidemic go hand in hand.
118. Governments
must
commit
themselves
to
ensuring health care and support to those infected and
affected by HIV/AIDS. The challenge is to provide a
broad approach which includes adequate^ care for
individuals, households and communities affected by
HIV/AIDS; ensuring access to voluntary counselling
and testing and the continuum of affordable clinical
and home-based care and treatment; essential legal,
education and social services; psycho-social support
and counselling; and care for children orphaned by
HIV/AIDS. The capacity of health systems and social
services to deliver the required interventions must be
ensured.
respond to the epidemic; to support essential
infrastructure and training; to mitigate the social and
economic impacts; to expand successful prevention
interventions; and to implement a broad care agenda,
including access to drugs. One important way of
ensuring that national budgets are reallocated towards
HIV prevention is to make sure that HIV/AIDS
priorities are properly integrated into the mainstream of
development planning, including poverty reduction
strategies, public investment plans and annual budget
processes. Increased investment from donors, domestic
budgets and private companies and foundations will
need to be added to additional funds released through
debt relief to meet global resource needs.
122. Thus, meeting the challenges of HIV/AIDS
requires a combination of approaches: strengthening
leadership, alleviating the social and economic impacts
of the epidemic, reducing vulnerability, intensifying
prevention, increasing care and support, providing
119. Through advances in
the management of international public goods and scaling up resources.
opportunistic infections and the development of
123. HIV/AIDS is the most formidable development
effective antiretroviral therapies, the treatment of HIV
challenge of our time. The General Assembly, in
has reduced its social and economic impact. Access to
calling for a special session on HIV/AIDS, has
these treatments is uneven, however, and people in
recognized this, and at the special session will aim to
developing countries arc dying needlessly for lack of
secure a global commitment for intensified and
appropriate care. Continuing inequities in access to
coordinated action at the global and national levels.
effective care and treatment must be specifically
addressed through all possible means, including tiered
pricing, competition between suppliers, regional
procurement, licensing agreements and the effective
use of the health safeguards in trade agreements.
International public goods
120. A
focus
of
international
research
and
development should be to produce microbicides and
vaccines for HIV/AIDS. Either by using current
know ledge more effectively or focusing on key
unresolved problems, global and national players
should act in partnership to ensure that priority is given
to researching and developing new HIV medicines and
to making them accessible and affordable. Efforts
should also be made to develop and market femalecontrolled contraceptives.
Resources
121. The primary challenge for Governments is to
mobilize resources to meet the scale and devastating
impact of the HIV/AIDS epidemic. Greatly increased
resources are needed to expand the national capacity to
21
A/55/779
Annex I
Goals set by global conferences and their follow-up processes
Twenty-first special session of the General
Assembly, on the overall review and appraisal
of the Programme of Action of the International
Conference on Population and Development,
New York, 30 Junc-2 July 1999
A new benchmark indicator to measure the
reduction of HIV infection levels in young people was
agreed at the special session, as follows:
“Governments, with assistance from UNAIDS
and donors, should, by 2005, ensure that at least
90 per cent, and by 2010 at least 95 per cent, of
young men and women aged 15 to 24 have access
to the information, education and services
necessary to develop the life skills required to
reduce their vulnerability to HIV infection.
Services should include access to preventive
methods, such as female and male condoms,
voluntary testing, counselling and follow-up.
Governments should use, as a benchmark
indicator, HIV infection rates in persons 15 to 24
years of age, with the goal of ensuring that by
2005 prevalence in this age group is reduced
globally, and by 25 per cent in the most affected
countries, and that by 2010 prevalence in this age
group is reduced globally by 25 per cent.”
(General Assembly resolution S-21/2, annex,
para. 70).
International Labour Conference, Geneva,
30 May-15 June 2000
The Conference called on Governments to raise
national awareness particularly of the world of work,
with a view to eliminating stigma and discrimination
attached to HIV/AIDS, as well as to fight the culture of
denial, thereby preventing the spread of HIV/AIDS,
and to formulate and implement social and labour
policies and programmes that might mitigate the effects
of AIDS.
22
Twenty-third special session of the General
Assembly, entitled “Women 2000: gender
equality, development and peace for the twentyfirst century”, New York, 5-9 June 2000
At its twenty-third special session, the General
Assembly identified HIV/AIDS as a priority concern
from the health and gender equality perspectives.
In the further actions and initiatives to implement
the Beijing Declaration and Platform for Action
(resolution S/23-3, annex), the General Assembly
placed a strong emphasis on the gender aspects of
HIV/AIDS and STIs and other health problems. Noting
their disproportionate impact on women’s and girls’
health, it called for action at the national and
international levels to encourage, through the media
and other means, a high awareness of the harmful
effects of certain traditional or customary practices
affecting the health of women, some of which increase
their vulnerability to HIV/AIDS and other sexually
transmitted infections, and intensify efforts to eliminate
such practices (see resolution S-23/3, annex, para.
98 (d)). It also called for the intensification of
community-based strategies to protect women of all
ages from HIV and other sexually transmitted diseases
and to provide gender-sensitive care and support to
infected girls, women and their families (see resolution
S-23/3, annex, para. 103 (b) and (c)).
With respect to AIDS orphans, the General
Assembly called for action to assist boys and girls
orphaned as a result of the HIV/AIDS pandemic (see
resolution S-23/3, annex, para. 103 (c)).
Twenty-fourth special session of the General
Assembly, entitled “World Summit for Social
Development and beyond: achieving social
development for ail in a globalizing world”,
Geneva, 26-30 June 2000
Governments were urged to make greater
commitments to act on social and economic factors that
bear on vulnerability to HIV infection. In addition to
the improvement of health-care services and personnel
capacities, the provision of basic welfare and
psychosocial support to those affected by HIV/AIDS
and intensified education programmes, particularly for
A/55/779
young people, were highlighted as key elements for
national response. In the Copenhagen Declaration,
adopted by the Summit in 1995, the international
community committed itself to strengthening national
efforts to address more effectively the growing
HIV/A1DS pandemic by providing necessary education
and prevention services, working to ensure that
appropriate care and support services arc available and
accessible to those affected by H1V/A1DS, and taking
all necessary steps to eliminate every form of
discrimination against and isolation of those living
with HIV/AIDS,1 a commitment that remains valid.
Millennium Summit of the United Nations, on
the theme “The role of the United Nations in
the twenty-first century”, New York,
6-8 September 2000
In paragraph 19 of the Millennium Declaration
(resolution 55/2), the General Assembly stated the
commitment of the international community to have by
2015 halted and begun to reverse the spread of
HIV/AIDS, the scourge of malaria and other major
diseases that afflict humanity, and to provide special
assistance to children orphaned by HIV/AIDS. In
paragraph 28 of the Declaration, the Assembly resolved
to help Africa build up its capacity to tackle the spread
of the HIV/AIDS pandemic and other infectious
diseases.
Notes
‘ Sec Report of the World Summit for Social Development,
Copenhagen, 6-12 March 1995 (United Nations
publication, Sales No. E.96.IV.8), chap. I, resolution 1,
annex 1, commitment 6 (q).
23
A/55/779
Annex II
United Nations system response
1.
The purpose of the present annex is to give a brief
summary of responses on HIV/AIDS under way or
anticipated by United Nations system organizations and
agencies.
United Nations Children’s Fund
2.
UNICEF
priorities:
has
set
the
following
United Nations Development Programme
programme
(a)
To ensure that all young people know the
facts about HIV and how to prevent it. This includes
programmes for injecting-drug users, on the control of
sexually transmitted infections (STIs) and youth life
skills, and on lifestyle promotion;
(b) To support efforts to expand access to
services to prevent parent-to-child transmission of HIV,
which includes clearer guidance on the use of
antiretroviral therapy and infant feeding in the context
of
prevention
of
mothcr-to-child
transmission
(PMTCT) projects, access to voluntary counselling and
testing, and the reduction of stigma and discrimination
for women living with HIV;
(c)
To
provide
care
and
support
by
strengthening programming for orphans and vulnerable
children infected/affected by AIDS and by expanding
life skills training for young people. In this context,
UNICEF is positioning schools as the hub in every
community in the struggle against AIDS. It is working
with ministries of education to dedicate time and
attention to the introduction of life skills into the
curricula and learning of young children. It is also
negotiating with the private sector for low-cost supply
of essential HIV/AIDS-relatcd drugs;
(d) To protect young people and women from
HIV in situations of conflict and emergency;
(c)
To support UNICEF staff members affected
by HIV/AIDS, which includes a core set of services for
UNICEF staff and dependants.
UNICEF has integrated the above-mentioned priorities
in all its programming al the country level and globally.
It is in the process of stepping up its response in the
key areas of prevention of mother-to-child transmission
and care and support for children infected/affected by
HIV. It is also paying particular attention to the new
24
flashpoints for the pandemic: the Commonwealth of
Independent States/Ba 11ic countries, South Asia and the
Caribbean, besides its ongoing work in Africa and
South-East Asia.
3.
HIV/AIDS is one of UNDP’s main corporate
priorities. The role of UNDP is to help countries
address the governance challenge of the epidemic,
focusing on four areas of intervention:
(a)
Promoting
robust
and
action-oriented
advocacy for leadership at all levels, political
commitment and the mobilization of actors and
institutions well beyond the health sectors;
(b) Helping countries to develop capacity for
action and to plan, manage and implement their
response to the epidemic, including the integration of
HIV/AIDS into poverty reductions strategies, and the
reallocation of resources (including debt relief savings)
towards prevention, care and impact mitigation;
(c)
Promoting a human rights framework and
gender perspective in all aspects of the response;
(d)
Providing special assistance to the worst
affected countries to help mitigate the impact on human
development, establish governance structures and
provide essential services. As coordinator of United
Nations system activities at the country level, UNDP
also plays a pivotal role in ensuring a coherent and
mutually reinforcing response by UNAIDS co
sponsors, bilateral donors and private foundations,
through the United
Nations theme groups on
HIV/AIDS and the United Nations Development
Assistance Framework (UNDAF).
United Nations Population Fund
4.
The
UNFPA
contribution
to
combating
HIV/AIDS derives from its long experience and
expertise in negotiating and ensuring access to family
planning services globally, a precedent in enabling
UNFPA to address sensitive issues with national
counterparts, including Governments.
Since
the
International
Conference
on
Population
and
Development (1CPD), held in Cairo in 1994, by
Mssrm
ensuring access to reproductive health services and
programming for female and male condoms, working
through its extensive network of field offices and
technical experts in the country support team., UNFPA
has been at the forefront of prevention activity and
program m ing.
5.
Within the UNFPA policy framework, prevention
of STIs, including HIV, continues to be an integral
component of reproductive health. At the country level,
UNFPA works closely with United Nations partners,
international agencies and national counterparts to
provide assistance for STI and H1V/AIDS prevention.
Such support includes advocacy, education and
information for the promotion of safe sexual behaviour,
including voluntary counselling and testing; improving
access to and use of condoms; training of reproductive
health-care providers on HIV prevention in relation to
family planning, antenatal and safe delivery practices;
and research on the integration of HIV prevention into
reproductive health programmes and sociodemographic
consequences of the epidemic. Meeting the needs of
youth and adolescents forms a special focus of UNFPA
support at all programming levels — national, regional
and global. Adolescents need the knowledge and life
skills to make responsible decisions and positive
choices in life. UNFPA is contributing towards this
through support in many countries for the development
of educational curricula, by including information on
reproductive health in general and HIV/A1DS in
particular, gender issues, sexuality and family life;
improving access to information, counselling and
clinical services; promoting greater participation of
youth and advocacy efforts, both for girls and boys —
based on the key messages of ICPD and its five-year
review.
that HIV-affected groups can benefit from research
efforts and means of prevention; promote the transfer
of knowledgc/scicntific
research
for
affordable
treatment; develop a sociocultural approach to
HIV/AIDS prevention and care; and integrate new
preventive behaviours in the messages and training of
sociocultural educators and journalists.
United Nations Drug Control Programme
7.
UNDCP objectives related to HIV/AIDS are to
prevent the spread of the epidemic linked to the abuse
of drugs; undertake community outreach projects;
develop legislation; and integrate demand reduction
efforts into broader social welfare and health
promotion policies. UNDCP has supported the
development of projects in five Central Asian countries
to strengthen their capacity in policy formulation,
planning and management of HIV/AIDS and sexually
transmitted diseases (STDs) and drug abuse prevention;
a subregional project in the southern cone of Latin
America promotes common methods and standards to
conduct epidemiological surveillance. UNDCP is
participating in the regional response to the problems
created by the spread of the abuse of amphetamine-type
stimulants and HIV/AIDS in Central and Eastern
Europe, and in collaboration with other United Nations
agencies has developed country projects to assist
Governments
in
coordinating
and
managing
HIV/AIDS, STDs and drug abuse prevention and care
■activities. In East Asia, the development and
implementation of policies and programmes for a
community-based
response
to
support
demand
reduction and prevent the spread of HIV through drug
injection is also a priority.
World Health Organization
United Nations Educational, Scientific and
Cultural Organization
6.
UNESCO efforts focus on education, basic
research, social and human sciences, human rights,
public information and awareness activities. Its
priorities are to develop and improve educational
strategies to support young people in adopting attitudes
and behaviour to prevent HIV infection, particularly
among schoolgirls; undertake studies on the impact of
AIDS on education and programmes for orphans and
children living in poverty; mobilize decision makers on
educational policies; undertake primary prevention of
drug use among young people; strengthen actions so
8.
WHO is intensifying its support for Member
States’ efforts and is doing so within the context of the
wider multisectoral response to HIV, reflecting the
overarching
importance
of
good
sexual
and
reproductive health. The priorities for intensified action
now include support for countries’ efforts to prevent
and manage sexually transmitted infections; provide
voluntary counselling and testing through health
services; implement and monitor interventions to
prevent mother-to-child transmission of HIV; ensure
care and support for people living with HIV/AIDS; and
implement other cost-effective
interventions, as
relevant to specific settings. Particular attention is paid
25
M5Sm9
to the interests of populations who are at high risk or
arc especially vulnerable, including sex workers and
injecting drug users. WHO continues to recognize the
importance of meeting the particular needs of young
people, and gives special attention to relieving the
impact of HIV/AIDS on health systems (including the
particular HIV infection risks experienced by health
workers). Thus, WHO priorities include supporting and
coordinating high-quality research on HIV/AIDS,
providing
technical
support
for
programme
development,
implementation,
monitoring
and
evaluation, and surveillance of HIV infection and its
behavioural determinants. In some cases, support is
provided
through
links
with
programmes
on
reproductive
health,
essential
drugs,
disease
surveillance, the provision of health information,
vaccine development, blood safety or substance use.
9.
WHO has strengthened its normative functions
and the technical capabilities of WHO regional and
country teams. Regional and country offices arc
focusing particular attention on strengthening the
health sector responses to the epidemic, and have prime
responsibility within the United Nations system for
issues related to care and support of people living with
HIV/AIDS and for the availability of prevention and
treatment for sexually transmitted infections. WHO
regional offices are recruiting specialists to act as focal
points for specific areas of work, including voluntary
counselling and testing, prevention of mother-to-child
transmission and other essential components of
HIV/AIDS work; the coordination of HIV activities
within health systems; and surveillance (with an
emphasis on behavioural issues). Additional, qualified
staff, including national programme officers, arc to be
placed in countries. Subregional technical teams are
being established to provide direct support to countries
and facilitate the management of regional technical
networks.
10. WHO is also developing a global health-sector
strategy for responding to the epidemics of HIV/AIDS
and sexually transmitted infections as part of the
United Nations system’s strategic plan for HIV/AIDS
for 2001-2005, as requested by the World Health
Assembly in its resolution WHA53.14. The process
includes wide consultation with Governments, non
governmental organizations, WHO regional offices and
country representatives, collaborating centres and
experts. The global strategy proposes three main
tactics: reducing the risks of HIV infection; decreasing
26
people’s vulnerability to HIV infection; and lessening
the epidemic’s overall impact on people’s lives and on
development.
‘
World Bank
11. The World Bank has made HIV/AIDS a top
institutional priority, both for analysis and action. The
Bank placed HIV/AIDS at the centre of the global
development agenda during the April 2000 meetings of
world finance ministers, detailing the severe threat the
epidemic poses to development around the world. It
has expanded the economic analysis of the impact of
AIDS, and in connection with the UNAIDS secretariat
has produced detailed estimates of the costs of
mounting
comprehensive
national
HIV/AIDS
programmes. It has taken a leading role in initiatives to
help bring an HIV vaccine to market in the developing
world, and is one of the UNAIDS co-sponsors involved
in
the accelerating
access
initiative to
make
antiretroviral drugs more accessible in poor countries.
12. The Bank has also increased its support for
HIV/AIDS programmes. In September 2000, it
launched the first phase of the multi-country AIDS
programme for Africa. Prepared in collaboration with
UNAIDS, the International Partnership Against AIDS
in Africa, key bilateral donors and leading NGOs, the
programme is designed not only to increase resources
for HIV/AIDS but also to address the key impediments
to an expanded response, such as slow implementation
and inadequate support to communities. The first phase
of the programme has made S500 million in credits
available to countries in Africa to step up national
prevention, care and treatment programmes, and to
help them prepare to cope with the impact of AIDS.
Programme resources may be used to support
initiatives by government, civil society, the private
sector and communities; special mechanisms have been
designed to ensure funds flow quickly to community
level. The Bank is now preparing a similar initiative for
the Caribbean, and is also supporting major HIV/AIDS
projects in several other countries, including Brazil,
China and India.
International Labour Organization
13. The focus of the 1LO is on the development of
workplace policies and the implementation of a global
technical cooperation programme on HIV/AIDS and
the world of work. At the global level, an effort is
being made to apply ILO concepts and methods
AJ55/719
developed on labour and social issues to respond to
HIV/AIDS. An international code of practice on
H1V/A1DS and the world of work is expected to be
adopted in May 2001 to provide legal and practical
guidance on developing workplace policies, especially
towards protecting fundamental rights at work.
Programme priorities include the application of a
“social vaccine" for prevention and protection, such as
social inclusion and income and job security;
strengthening activities against the virus through
improved knowledge; documenting and disseminating
information
through
effective
labour
market
information systems; eliminating the stigmatization and
discrimination attached to HIV/AIDS by adopting and
applying
ILO
international
labour
standards;
integrating HIV/AIDS in existing social security
schemes and developing new ones. Initially, action by
the ILO has mainly focused on Africa and the
implementation of an African platform of action on
HIV/AIDS; in addition, ILO global programmes now
include country-level activities in Asia and the Pacific,
Eastern and Central Europe, and Latin America and the
Caribbean. Key activities carried out in the context of
the global programme focus on promoting awareness
and developing strategies concerning the impact of
HIV/AIDS on the world of work, and documenting and
disseminating information on national experience;
incorporating workplace policies into national action
plans against HIV/AIDS; integrating HIV/AIDS issues
into all ILO programmes at the national and enterprise
levels,
particularly
with
respect to
combating
discrimination and social exclusion; and mitigating the
adverse social and labour consequences of HIV/AIDS.
Food and Agriculture Organization of the
United Nations
14. In
response to the HIV
epidemic,
FAO
contributes its technical expertise in sustainable
agriculture and rural development, and is developing
strategies through which the agricultural sector can
address
HIV/AIDS.
With
UNAIDS,
FAO
will
undertake integrated prevention programmes that.will
help spread information, especially to young men and
women, about HIV vulnerability, risk reduction and
sustainable rural development. It is exploring ways of
assisting farming communities in rural areas with high
HIV prevalence, and of developing agriculture
programmes that modify mobility patterns to reduce
the vulnerability of migrants to HIV infection and
develop strategies that focus on prevention.
0 ffice of the U nited N at io ns H igh
Commissioner for Human Rights
15. The objective of the Office in the area of
HIV/AIDS is to contribute to an effective and
sustainable human rights-based response to the
epidemic at the national, regional and international
levels through enhancing the integration of HIV/AIDS
issues within the human rights machinery. Il advocated
the inclusion of HIV/AIDS on the agenda of the
Commission on Human Rights and its Subcommission;
has widely distributed the international guidelines on
HIV/AIDS and human rights to States, United Nations
agencies and NGOs; and has contributed to increasing
political support for HIV/AIDS initiatives through the
adoption of Commission on Human Rights resolutions
on HIV/AIDS and human rights. Programme priorities
include strengthening the respect of human rights as
part of the response to the epidemic, reducing
H IV/AlDS-related
discrimination
at
work
and
elsewhere by engaging persons infected and affected in
promotion, protection and respecting human rights
within prevention, control and care programmes. The
Office will advocate for the implementation of
HIV/AIDS-related rights of populations vulnerable to
HIV/AIDS
so that the vulnerability of these
populations to human rights violations and exposure to
HIV is reduced. Together with UNAIDS, it will
continue to organize training sessions on human rights
in the context of HIV for experts within the United
Nations human rights system and other relevant
partners, such as Governments and NGOs.
Office of the United Nations High
Commissioner for Refugees
16. UNHCR
programme
priorities
addressing
HIV/AIDS include the strengthening of the STI and
HIV/AIDS
prevention
and
care component of
reproductive health programmes in refugee settings, as
well as capacity-building of UNHCR staff and partners
in the design and implementation of HIV/AIDS
prevention and care activities. It also disseminates
information
(i.e.,
best
practice
packages
and
guidelines) and advocacy on HIV/AIDS prevention and
care needs of refugees through international, regional
and national forums. UNHCR priority geographic
regions are the Great Lakes Region and West Africa.
27
AJ55IT19
United Nations Research Institute Tor
Social Development
17. Recognizing the undeniable importance of the
HIV/AIDS epidemic affecting the world today, the
Institute prepared an issues paper on HIV/AIDS and
development at the invitation of the UNAIDS
secretariat during 2000. During this period, UNRISD
began to form a network of well-known researchers
(social scientists, activists and medical specialists) with
an interest in further work on HIV/AIDS. The
Institute’s goal in this field is to generate new
knowledge about the course and consequences of the
epidemic, as well as new ideas on how to strengthen
the capacity of particular societies to deal with
HIV/AIDS.
United Nations Volunteers
18. The main focus of UNV in the area of HIV/AIDS
is the strengthening of local initiatives for prevention
and control of thd epidemic through communityoriented, participatory involvement. UNV also strives
to alleviate the devastating socio-economic effects of
the pandemic by disseminating HIV/AIDS information
and by providing training and general health care.
Together with the UNAIDS secretariat and UNDP, it
has launched a pilot project, unique in the United
Nations system, by engaging people living with
HIV/AIDS as national United Nations volunteers to
work in their own communities. The project helps to
set up women support groups for orphans of HIV/AIDS
and their foster parents; provides technical assistance
so that local communities can produce their own
publications on HIV/AIDS; and trains co-workers to
manage HIV laboratory operations. UNV programme
priorities and targets include building government and
community capacity in relation to information,
education
and
communication
skills
for
HIV
prevention; providing loans to sex workers; and
training community caregivers for orphans in Africa
and Asia and the Pacific, its priority geographic
regions.
World Food Programme
19. WFP
is
working
towards
incorporating
HIV/AIDS concerns into all of its programmes, both
development and emergencies. WFP concentrates on
using food aid as a way to improve the food security of
HIV/AIDSaffected
families
and
orphans.
In
collaboration with its partners, WFP will also
28
incorporate information, education and communication
activities at its distribution sites through community
partners, such as relief committees.
20. At the headquarters level, WFP is developing a
strategy and guidelines to integrate HIV/AIDS into all
existing and new programmes. At the field level, WFP
will programme mitigation activities, including school
feeding with take-home rations for families with
orphans; food
rations
for tuberculosis patients
undergoing
therapy;
and
vo c a tio n a 1/ag ricu I tu ra 1
training for street children and orphans. Current pilot
interventions also include using WFP's extensive
logistics network to support HIV/AIDS education and
risk-reduction
activities
for contracted
transport
workers.
United Nations Development Fund for Women
21. The reality that the epidemic is fuelled in a major
way by gender relations and gender inequality has led
UNIFEM to expand its work on gender, human rights
and HIV/AIDS. The organization’s three priority
areas— strengthening
women’s
economic
rights,
engendering governance and leadership, and promoting
women’s rights— are all essential strategies in this
effort. In keeping with its mandate to be catalytic,
innovative and to support inter-agency mechanisms for
mainstreaming gender, the UNIFEM programme for
action on gender and HIV/AIDS will include work on
advocacy,
brokering
partnerships
and
capacity
building.
22. UNIFEM has recently completed the first phase
of a global programme, “Gender focused responses to
the challenges of the HIV/AIDS epidemic”, which was
funded in large part by UNAIDS and UNFPA. The
programme, which is currently going into phase II, was
designed to link policy, research and outreach
strategics on gender and HIV/AIDS in order to build
bridges of support, advocacy and activism at the
national and regional levels.
United Nations Industrial Development
0 rganization
23. UNIDO aims to contribute to the reversal of the
devastating impact of HIV/AIDS on rural and urban
livelihoods. Within the framework of the UNIDO
integrated programmes being implemented in several
countries, major initiatives have been taken to mobilize
the private sector/business community, including
MSSHT)
women entrepreneur groups, to support HIV/A1DSspecific activities, focusing on awareness creation,
prevention and survival. In response to the spread of
HIV/A1DS in Africa and in accordance with the
development objective of supporting the developing
countries in their efforts to accelerate socio-economic
development, UNIDO will address the issue of
H1V/A1DS at the global forum level and with
appropriate
technical
assistance
programmes,
preferably with the support of the international private
sector, especially those with interests in Africa. It is
proposed to undertake action-oriented studies on the
impact of HIV/AIDS on the private sector, including
enterprise-level surveys, with a view to defining
realistic strategics and mainstreaming HIV/AIDS
awareness and “business against AIDS” prevention
campaigns into the UNIDO network of industrial
support institutions and enterprises. In addition,
technical assistance programmes will focus on building
capacities and capabilities for the production of AIDSrelated health products, including support to plantderived pharmaceutical research and pilot programmes
in southern Africa and elsewhere.
Resident coordinator system
24. The resident coordinator system is responsible for
the UNDAF process in which the United Nations
Theme Groups play a critical role. The theme groups
on HIV/AIDS arc platforms for bringing the United
Nations together in support of the countries affected by
HIV/AIDS.
They
ate
mainly
responsible
for
coordination, advocacy and partnership building, joint
policy and strategic decision-making and integrated
planning, and in some instances have played a key role,
together with UNAIDS, in resource mobilization for
country-based United Nations initiatives. Within the
resident coordinator system, the theme groups on
HIV/AIDS have been among the earliest established to
lead and support an expanded multisectoral response to
the HIV/AIDS epidemic.
25. The theme groups on HIV/AIDS have been
expanded to facilitate dialogue and networking
between partners, thereby strengthening support to the
national response. Membership has been expanded to
include Governments, civil society groups, NGO AIDS
consortia and bilateral donors. People living with
HIV/AIDS have also become members.
-26. The theme groups on HIV/AIDS have been
actively engaged in the UNDAF process, first through
the common country assessment process and then in
UNDAF, which is based on the common country
assessment, and subsequently in the elaboration of
individual agencies’ country programmes as well as
joint programmes and projects. They have also been
linked with a number of other key instruments of
development cooperation, employed by the United
Nations system and other partners.
United Nations Secretariat
27. The Division for Economic and Social Council
Support and Coordination, in its coordinating capacity,
acts as the focal point for the United Nations
Secretariat on HIV/AIDS. The Division for Social
Policy and Development is undertaking a study on
families in the most H1V/AIDS-affected countries, and
HIV/AIDS will be a topic in one of the working groups
of the World Youth Forum, to be held from 5 to 12
August 2001 in Senegal. The Population Division
includes HIV/AIDS in official United
Nations
population estimates and projections to enable the
assessment of the epidemic. In order to contribute to
further understanding of the issue of the increasing
proportion of women living with AIDS in every region,
especially in sub-Saharan Africa and among younger
age groups, the Division for the Advancement of
Women, in collaboration with WHO and UNAIDS,
convened an Expert Group meeting on the HIV/AIDS
pandemic and its gender implications in Namibia in
November 2000. The Commission on the Status of
Women repeatedly discusses women and HIV/AIDS,
including when it reviews the critical area of concern
“Women and health”. The increasing proportion of
women
living with
HIV/AIDS was raised
in
Commission resolution 44/22 on women, the girl child
and HIV/AIDS. The Department of Peacekeeping
Operations cooperates with the Civil Military Alliance
to Combat HIV and AIDS, developing training
programmes and educational materials for military and
other
personnel
assigned
to
United
Nations
peacekeeping operations. HIV/AIDS is becoming part
of the meeting agendas of the regional commissions,
and the Economic Commission for Africa convened the
Second African Development Forum in December
2000, on the theme “AIDS: the greatest leadership
challenge”. The results of the Forum will serve as a
valuable input to the preparatory process for the special
session of the General Assembly on HIV/AIDS. The
Department of Public Information raises public
awareness on the epidemic and its effects through
29
A/55/779
radio, television and printed matter The United
Nations Medical Service ensures that United Nations
policies on HIV/AIDS for staff members and
peacekeepers are implemented. Il provides proper
health education, training and measures for personal
protection, thereby offering an effective AIDS
prevention programme.
World Intellectual Property Organization
28. WIPO addresses the issue on patents for
pharmaceutical
products
for
the
treatment
of
HIV/AIDS within the context of the Trade-Related
Intellectual Property Rights agreement. It provides
legislative advice, human resources and infrastructure
development for tailoring solutions to the needs of a
country to implement international obligations and
ensuring access to health care.
United Nations Relief and Works Agency for
Palestine Refugees in the Near East
29. UNRWA’s
current
priorities
concerning
HIV/AIDS include the education of vulnerable groups,
such as youth at school, vocational training centres and
women’s programme centres, as well as surveillance of
STDs and HIV/AIDS. This is carried out by training
health staff on counselling for epidemic prevention and
control, and the production of educational kits for
school teachers and students. UNRWA is represented in
the national AIDS committees in the host countries and
areas of Jordan, the Syrian Arab Republic, Lebanon
and Palestine.
World Tourism Organization
30. WTO is an intergovernmental organization that
serves as a global forum for tourism policy and issues.
It addresses HIV/AIDS issues in the context of its
mandate through its international campaign against
organized sex tourism, specifically against child sex.
Joint United Nations Programme on HIV/AIDS
31. The Joint United Nations Programme on
HIV/AIDS is the leading advocate for global action on
HIV/AIDS. It brings together seven United Nations
bodies in a common effort to fight the epidemic:
UNICEF, UNDP, UNFPA, UNDCP, UNESCO, WHO
and the World Bank. UNAIDS both mobilizes the
responses to the epidemic of its seven co-sponsoring
bodies and supplements these efforts with special
30
initiatives. The areas of focus of the UNAIDS
secretariat are to sustain and build political momentum;
improve support to country-level resource mobilization
and national coordination, ensuring a well-coordinated
United Nations response; accelerate access to HIV
care, noting the inseparability of prevention and care,
with attention to equity and affordability; and leverage
technical support and knowledge management.
17
MATERIAL ON HIV/AIDS
SENT BY
MEDICAL MISSION INSTITUTE
UNIT FOR HEALTH SERVICES AND HIV/AIDS
SALVATORSTR. 22
D-97074 WURZBURG
GERMANY
June 2001
-<
r * 2.
<T « ?
HEALTH POLICY AND PLANNING; 16(1): 13-20
O Oxford University Press 2001
Ten recommendations to improve use of medicines in
developing countries
KO LAING.1 HV HOGERZEIL- AND D ROSS-DEGNAN5
Boston University School of Public Health, Boston, USA, 2World Health Organization Action Programme on
Essential Drugs, Geneva, Switzerland and 3Harvard Medical School and Harvard Pilgrim Health Care, Boston, USA
Inappropriate prescribing reduces the quality of medical care and leads to a waste of resources. To address
these problems, a variety of educational and administrative approaches to improve prescribing have been
tried. This article reviews the experiences of the last decade in order to identify which interventions have
proven effective in developing countries, and suggests a range of policy options for health planners and
managers.
Considering the magnitude of resources that are wasted on inappropriately used drugs, many promising
interventions are relatively inexpensive. Simple methods are available to monitor drug use in a standardized
way and to identify inefficiencies. Intervention approaches that have proved effective in some settings are:
standard treatment guidelines; essential drugs lists; pharmacy and therapeutics committees; problem-based
basic professional training; and targeted in-service training of health workers. Some other interventions, such
as training of drug sellers, education based on group processes and public education, need further testing,
but should be supported. Several simplistic approaches have proven ineffective, such as disseminating pre
scribing information or clinical guidelines in written form only. Two issues that will require a long-term stra
tegic approach are improving prescribing in the private sector and monitoring the impacts of health sector
reform.
Sufficient evidence is now available to persuade policy-makers that it is possible to promote rational drug
use. If such effective strategies are followed, the quality of health care can be improved and drug expendi
tures reduced.
Introduction
Summary of developments of the last 15 years
This paper reviews the current state, of knowledge about the
The 1985 Nairobi conference on the rational use of drugs
effectiveness of strategies to improve the use of medicines in
marked the start of a global effort to promote rational pre
scribing.2 In 1989 an overview of the subject concluded that
developing countries, and suggests what policy-makers and
health system managers can do to accomplish this objective.
In some areas, clear evidence about effectiveness already
very few interventions to promote rational drug use had been
properly tested in developing countries.3 Since then, the
exists: in others, evidence is lacking, and advice is presented
WHO Action Programme on Essential Drugs (WHO/DAP).
on the basis of the best available knowledge.
the International Network for the Rational Use of Drugs
The World Health Organization (WHO) recommends that
(INRUD) and other organizations have collaborated in an
international research effort to fill the knowledge gap.4-5
activities to strengthen the pharmaceutical sector be organ
ized under the umbrella of a national drug policy.1 In many
studying
countries, a
research networks, training and support to researchers in
national , essential
drugs programme
is the
mechanism for implementing such a policy, usually with
Emphasis has been put on developing operational tools and
the
effect
of
different
interventions
through
developing countries.
emphasis on drug selection, procurement, distribution and
use in the public sector. This paper suggests policy options
The first concrete results of this collaboration were a set of
specifically related to encouraging more appropriate use of
simple indicators for measuring the quality of drug use at
medicines. On the basis of existing evidence it should be poss
health facilities.6 and a WHO training manual on the prin
ible to retine the components of essential drugs programmes
in this area. In addition, although government officials have
ciples of rational prescribing.7 Annual international training
greater power in the public sector, they can also take certain
ing of problem-based pharmacotherapy have been held since
courses on promoting rational use of drugs and on the teach
measures to encourage more appropriate drug use in the
1989. In 1995, the International Conference on National
private sector.
Medicinal Drug Policies in Sydney, Australia, recognized
HEALTH POLICY AND PLANNING; 16(1): 13-20
-r
© Oxford University Press 2001
r q 2.
<r «.z
Ten recommendations to improve use of medicines in
developing countries
RO LAING.1 HV HOGERZEIL2 AND D ROSS-DEGNAN’
^Boston University School of Public Health, Boston, USA, 2World Health Organization Action Programme on
Essential Drugs, Geneva, Switzerland and 3Harvard Medical School and Harvard Pilgrim Health Care, Boston, USA
Inappropriate prescribing reduces the quality of medical care and leads to a waste of resources. To address
these problems, a variety of educational and administrative approaches to improve prescribing have been
tried. This article reviews the experiences of the last decade in order to identify which interventions have
proven effective in developing countries, and suggests a range of policy options for health planners and
managers.
•
Considering the magnitude of resources that are wasted on inappropriately used drugs, many promising
interventions are relatively inexpensive. Simple methods are available to monitor drug use in a standardized
way and to identify inefficiencies. Intervention approaches that have proved effective in some settings are:
standard treatment guidelines; essential drugs lists; pharmacy and therapeutics committees; problem-based
basic professional training; and targeted in-service training of health workers. Some other interventions, such
as training of drug sellers, education based on group processes and public education, need further testing,
but should be supported. Several simplistic approaches have proven ineffective, such as disseminating pre
scribing information or clinical guidelines in written form only. Two issues that will require a long-term stra
tegic approach are improving prescribing in the private sector and monitoring the impacts of health sector
reform.
Sufficient evidence is now available to persuade policy-makers that it is possible to promote rational drug
use. If such effective strategies are followed, the quality of health care can be improved and drug expendi
tures reduced.
Introduction
Summary of developments of the last 15 years
This paper reviews the current state of knowledge about the
The 1985 Nairobi conference on the rational use of drugs
effectiveness of strategies to improve the use of medicines in
marked the start of a global effort to promote rational pre
scribing.2 In 1989 an overview of the subject concluded that
developing countries, and suggests what policy-makers and
health system managers can do to accomplish this objective.
In some areas, clear evidence about effectiveness already
very few interventions to promote rational drug use had been
properly tested in developing countries.-1 Since then, the
exists: in others, evidence is lacking, and adxice is presented
WHO Action Programme on Essential Drugs (WHO/DAP).
on the basis of the best available knowledge.
the International Network for the Rational Use of Drugs
(INRUD) and other organizations have collaborated in an
The World Health Organization (WHO) recommends that
international research effort to fill the knowledge gap.4-''
activities to strengthen the pharmaceutical sector be organ
ized under the umbrella of a national drug policy.1 In many
studying
countries, a national .essential drugs programme
research networks, training and support to researchers in
is the
mechanism for implementing such a policy, usually with
Emphasis has been put on developing operational tools and
the
effect
of
different
interventions
through
developing countries.
emphasis on drug selection, procurement, distribution and
use in the public sector. This paper suggests policy options
The first concrete results of this collaboration were a set of
specifically related to encouraging more appropriate use of
simple indicators for measuring the quality of drug use at
medicines. On the basis of existing evidence it should be poss
health facilities.1’ and a WHO training manual on the prin
ciples of rational prescribing.7 Annual international training
ible to refine the components of essential drugs programmes
m this area. In addition, although government officials have
courses on promoting rational use of drugs and on the teach
measures to encourage more appropriate drug use in the
ing of problem-based pharmacotherapy have been held since
1989. In 1995. the International Conference on National
private sector.
Medicinal Drug Policies in Sydney, Australia, recognized
greater power in the public sector, they can also take certain
RO Laing et al.
14
quality use of medicines as one of the four pillars of effective
national drug policy, and concluded that consumer move
ments play an important role in promoting rational drug use
and should be supported/ In 1997. the International Confer
ence on Improving the Use of Medicines in Chiang Mai. Thai
land. was the first global scientific conference purely devoted
to strategies for improving drug use in developing countries.
At this conference, the available scientific evidence was criti
cally reviewed in order to identify the most effective inter
vention approaches.-and to identify the current gaps in
experience in this area. Many of the conclusions of this paper
be used to make comparisons between regions or countries.
to measure the impact of interventions, and for supervision
purposes. An indicator-based assessment can be followed by
more detailed studies on individual drugs or specific diseases.
The WHO indicators record exactly whm is prescribed, dis
pensed and communicated to patients, but not why. For this
latter aspect other techniques are needed. A simple manual
of applied qualitative methods, such as focus-group discus
sions and structured interviews, is available from INRUD.-s
There are similar standard methods for investigating drug use
in communities.2'1
are based on material presented and discussed at the Chiang
Mai
conference/
In
particular,
several
comprehensive
reviews of published and unpublished reports were under
taken for this meeting.1"”1'
Countries and institutions will benefit from regular drug-use
surveys, usins simple indicators. A time-series of such surveys
is extremely useful to monitor performance towards set
targets, and can also serve as a baseline for planned interven
During the last decade many industrialized countries have
tions. The best example of a series of biennial national drug
developed policies similar to those underlying essential drugs
use surveys is from Zimbabwe.'" In Indonesia monthly
programmes in developing countries. For example, in Aus
self-monitoring with basic rational drug-use indicators in
tralia. the Pharmaceutical Benefit Scheme (which covers 85%
individual health centres and at district level has proved very
of all drug use in the country) applies very strict criteria.
effective to improve drug use.-'1
including comparative cost-effectiveness, for the reimburse
ment of drugs.14-1’ In the US, many managed care organiz
ations operate on the basis of clinical guidelines.
recommended formularies, and generic substitution.1*'” In
Recommended approaches
Several activities have proved very useful and effective in
the UK. practice formularies and budget-holding are increas
ingly common.”'211 The US also mandates drug utilization
promoting rational drug use. and should now be recom
review programmes and pharmacist counselling to improve
drug use in the publicly-funded Medicaid programme.21-22 In
lines: essential drug lists: drug and therapeutic committees:
Scotland, a collaborative network of the Ministry of Health
geted continuing education. Howexer. when these activities
and professional bodies develops national evidence-based
are being implemented, care is necessary to ensure success. In
clinical guidelines, with the primary objective of improving
the quality of care, not necessarily reducing cost.2-' These
the following section the best available advice is summarized
examples suggest that there is a global interest in programmes
ness.
mended for general use. These are: standard treatment guide
problem-based basic training in pharmacotherapy: and tar
for each of these interventions to maximize their effective
to improve use of medicines, and that many approaches are
possible.
(1)
Establish procedures for developing, disseminating,
utilizing and revising national (or hospital-specific) standard
Assessing patterns of use and defining problems
treatment guidelines
Before activities are started to promote rational drug use an
Whether they are
effort should be made to describe and quantify the problem.
(STGs). clinical policies, treatment protocols or best-practice
called
standard
treatment
guidelines
Several well-established survey methods are available for this
guidelines, structured approaches to diagnosis and therapy
purpose. Probably the simplest method is an 'ABC’ analysis
have considerable potential to promote rational drug use.’2
of drugs procured to identify high-cost examples of inefficient
drug use.24 For example, in Yemen it was found that the top
Guidelines vary in complexity from simple algorithms to
ranked drug import in terms of total cost was injectable
lincomycin.25 In one study in Indonesia injectable tetracycline
gations needed, patient advice, and cost information. The
was responsible for the second highest drug expense.26 Such
many factors, including: the complexity of the targeted prac
procurement analysis can be done at provincial, district or
tice. the credibility of the group developing the guidelines;
facility level. More refined analyses can compare the relation
involvement of end-users in the development process: the
between morbidity statistics of certain diseases and the
format of the resulting guidelines: and. most importantly, how
observed consumption of relevant drugs, or compare the con
they arc disseminated.'-’ In a number of settings where STGs
sumption of alternative treatments within a certain thera
peutic category, such as antidepressants or cephalosporin
detailed protocols that include diagnostic criteria, investi
success of guidelines in changing practice seems to depend on
ave been developed by an expert committee and simply sent
out to health workers, no impact has occurred.
antibiotics.
Improving the use of medicines through STGs requires both
Another assessment method is a prescribing and patient care
iniual work and continuous effort. It is now generally accepted
survey, using the WHO health facility drug-use indicators.627
These quantitative indicators are now widely accepted as a
"dl ,
, ln d<-‘veloping countries should'be developed for
each level of care, based on the prevalent morbidities and the
global standard for problem identification and have been
competency of available prescribers (physician, nurse, medical
used in over 30 developing countries. The indicators can also
assistant, community worker). Substantial involvement and
Improving drug use in developing countries
consultation of end-users helps to ensure the practicality of
diagnostic and treatment recommendations, and the accept
ability of guideline content and format.14 As far as possible, the
selection of treatments should be evidence-based and take into
account local economic realities.'5
W hen completed, the STGs should be introduced through an
official launch combined with an intensive training pro
gramme. Supervision and further training should reinforce
their use. In a study from Uganda by Kafuko and others, provision of STGs alone was compared with facilities receiving
cither training alone or training plus supervision.16 Statisti
cally significant improvements were obtained for reducing
i he number of drugs prescribed, injection use and increasing
generic drug use. Compliance with recommended guidelines
was
significantly
improved
for
malaria
and
diarrhoea.
15
formulary. It can also be used to identify product areas for
selective support to the national pharmaceutical industry, for
targeted quality assurance, or as a basis for insurance reim
bursement. Simply producing and distributing an EDL has
been’shown to have no effect.41’ As with clinical guidelines,
EDLs must be actively implemented.
Implementing an EDL or formulary in referral hospitals is
sometimes perceived as an unnecessary restriction on special
ists' freedom to prescribe. Some of these perceptions can be
overcome by developing supplementary STGs and EDLs for
defined specialist departments (e.g. the oncology guidelines
in Zimbabwe).4142 Flexibility can also be increased by reserv
ing a certain percentage of the hospital drug budget for non
formulary items. However, a budgetary set-aside invites
misuse and should be monitored carefully.
Improvements in consultation and dispensing times and in
adequacy of drug labelling were also observed. When the two
intervention groups were compared, improvements were
somewhat greater in the combined (training and supervision)
group, though this was not always statistically significant.
(3)
Require hospitals to establish representative Pharmacy
and Therapeutics Committees with defined responsibilities
for monitoring and promoting quality use of medicines
The beneficial effect of hospital Pharmacy and Therapeutics
To be realistic. STGs must be time-limited and open for
Committees (PTCs) in monitoring and promoting quality use
regular revision. STGs will gain greater acceptance if the
of medicines and containing costs in hospital and other insti
focus is put on improving the quality of care, rather than
tutional settings has been generally accepted in developed
simply reducing cost. National STG manuals should be con
countries.41 Unfortunately., there has been little critical evalu
sistent with treatment guidelines issued by national disease
ation of the clinical or economic impacts of this approach in
programmes, such as malaria, diarrhoea, tuberculosis and
developing countries. Despite the lack of evidence from
sexually transmitted diseases control. The first edition of the
developing countries, we nevertheless recommend that PTCs
STGs should be reviewed after 1 year, as there are usually
should be established in each referral hospital, and probably
errors, omissions or ambiguities; after that, the revision inter
in all general hospitals. This action will require both policy
val can be 2-3 years. Once they are finalized. STGs should be
direction and institutional support.
used for pre-service training and examinations; m-service
training: as a basis for supervision and audit; and for develop
Two essential tasks of a PTC are to develop and revise insti
ing a list of essential drugs.
tutional STGs (usually adapted from national guidelines).
and to maintain an institutional EDL or formulary.44-45 The
(2)
Establish procedures for developing and revising an
essential drug list (or hospital formulary) based on
treatments of choice
PTC can also perform drug utilization reviews, using drug
consumption data or simple prescription surveys, and estab
lish systems for audit of patient records, peer-review and con
tinuing education. Antibiotic utilization and infection control
In most settings an Essential Drug List (EDL) is a very
important component of an essential drugs programme.1 In
are two cross-cutting topics that can serve as a focus for PTC
activities.46 While computerized databases may not exist in
the past, an EDL was typically drawn up by selecting drugs
developing countries, hospital clinical and pharmacy records
from existing stock lists or formularies. However, it is now
can be manually reviewed for audit and feedback. Operations
generally recommended that the selection of drugs be based
research is needed in both public and private hospitals in
on a list of common conditions and complaints and the treat
developing countries to determine how PTCs can function
ments of choice for these conditions as defined in STGs.-4
most effectively.
Thus, the EDL is a natural result of the national STGs. The
drugs included in the treatment guidelines for a certain level
If PTCs do not exist in a country, the Ministry of Health
of health care will constitute the EDL for that level. Ideally.
should require that they be established, at least in large hos
the two should be developed together, as was done in
pitals. Materials to assist the committees in their initial phase
Kenva.’7 The recommended criteria for the selection of
essential drugs are published elsewhere.-'" To prevent con
may need to be developed. Publication in national journals of
flicts of interest, manufacturers should not be involved in the
approaches may help other committees to get started.
the results of establishing PTCs and of the success of specific
decision-making process of defining an EDL.
Many national EDLs now indicate the level of use for each
drug. e.g. dispensary, health centre, general hospital, or refer
ral hospital."’ Like STGs. the leveled EDL should be revised
(4)
Implement problem-based training in pharmacotherapy
in undergraduate medical and paramedical education based
on national STGs
frequently. The EDL can be used as the basis for procure
The quality of basic training in pharmacotherapy can have an
ment and distribution of drugs, and for developing a national
impact on prescribing in the long term by helping to establish
RO Laing et al.
16
good habits and inoculating students against future negative
If there is no existing focus on problem-based training in
influences on their prescribing. Rational pharmacotherapy
pharmaco-therapeutics.
teaching should be linked both to national STGs and to the
may help to build awareness of the value of the approach.
essential drugs list. National STGs should therefore be devel
These would ideally bring together local medical educators
oped in close collaboration with senior staff of medical and
with others who use this new approach from the region. Such
paramedical teaching institutions and be used in basic curric
workshops have been successfully used in Indonesia and in
ula. All pharmacology teaching should be based on generic
the Philippines. If there is no focus on public health pharmacy
names. Copies of the EDL and STG manuals should be freely
in schools of pharmacy, regional consultative meetings can
national
consultative
workshops
also be used to expose pharmacy teachers to these ideas; such
available to all students.
regional meetings were held recently in Zimbabwe and
There are proven strategies to improse the quality of phar
Lebanon.48
macotherapy teaching. Probably the most important is to
develop teaching objectives based on the knowledge, skills
and attitudes required by students in their future professional
life. These teaching objectives should be detailed, published
and used for teaching, for examinations and even for staff
appraisals. In most settings, the amount of basic science
(5)
Encourage targeted, problem-based in-service
educational programmes by professional societies,
universities and the Ministry of Health, and require regular
continuing education for licensure of health professionals
should be drastically reduced, and classroom lecturing should
In most developing countries, few’ options exist for regular in
be restricted to those subjects where the transfer of know
service
ledge is essential. Instead, problem-solving skills should be
doctors, paramedics and pharmacists have little incentive to
interdisciplinary
education
of health
professionals.
Furthermore.
learning
participate in continuing education programmes, since their
teaching
licensure rarely depends on such participation The only well-
approach: this may imply the need to replace written examin
established source of information about drugs and therapeu
ations with continuing and skill-based assessments.
tics is the pharmaceutical industry, whose primary motivation
promoted
and
encouraged.
Examinations
problem-based
should
reflect
the
is the promotion of specific products rather than improve
The WHO Guide to good prescribing is a practical manual
ment in the quality of care. It is necessary to revise regulations
for medical students on the principles of rational prescribing.
for professional licensing to require regular participation in
The manual is intended to support problem-based learning.
unbiased educational activities, as is done in many industrial
and its positive impact on prescribing skills has been demon
ized countries.
strated in a randomized controlled trial.'7 Students from the
groups receiving the training performed significantly better
One strategy to which many countries devote resources and
than controls in the seven medical schools included in the
staff time is the production of printed bulletins and pharma
trial. The students learned how to apply their skills for prob
ceutical newsletters. As an isolated activity this approach has
lems covered in the teaching as well as new problems. The
failed universally though it may play a role as part of face-to-
improvement was demonstrated to last for at least 6 months
face education.7’
after the training session in all of the medical schools. Two-
week practical training courses in this approach intended for
Many countries have experience in organizing specific train
university lecturers and clinical teachers are offered annually
ing programmes to improve the use of medicines, particularly
in the Netherlands. Japan and South Africa. The manual is
in the public sector.49 These programmes are frequently
currently being adapted for training other professions, such as
organized by the national essential drugs programme, by ver
pharmacists in Uganda and nurses in Indonesia and South
tical disease control programmes, or within the context of
Africa. A teacher's guide is under development.
donor-funded projects. There is a need to evaluate the success
of
different
approaches,
and
to
establish
coordinated.
Nowhere is an integrated approach so important (and its
ongoing quality improvement programmes as a routine Min
absence so dramatic) as in the clinical phase of the under
istry of Health function. Wherever possible, students should
graduate medical training: in these few years most future pre
be introduced to the need for continuing education during
scribing habits are acquired. Pharmacotherapy teaching in
their basic training. Evidence for the effectiveness of con
the clinical phase should be objective-based. problem-based
tinuing medical education exists in developed countries
(with a focus on common conditions), interdisciplinary (both
for
teachers
and
students)
and
constantly
referring
to
though similar results have not yet been reported from
developing countries.35-5"-''1
national or hospital STGs and EDLs.
Methods that have been tested include large group and small
Within nursing curricula, a problem may exist around the
group training.'- as well as focused on-site training. One study
issue of leaching nurses to prescribe. In large hospitals nurses
showed that both approaches may be equally effective for
carrv out the prescribing instructions of doctors. However, in
improving treatment for specific problems but the effects of
manv countries, nurses are posted to rural health facilities
the small group teaching may be more sustained and cost-
where they diagnose and prescribe as well as manage the drug
effective.52-' ' In some cases, training activities have been com
bined with improved supervision or monitoring. 4 In a study
supply of the facility. Obviously, nurses in these settings
should be trained to do this work. Training of pharmacists in
public health aspects of their profession and public health
students in drug issues may a|so be beneficial.
from Zambia, the impact of three continuing education sem
inars for staff working in urban general health centres was
evaluated.5' In this randomized study, the average number of
Improving drug use in developing countries
17
drugs prescribed decreased significantly from 2.3 to 1.9 in the
review for 6 months thereafter, which led to a dramatic and
intervention facilities. There were improvements in history
sustained increase in several measures of quality.61 The study
taking, examination, diagnosis and treatment of patients,
compared physicians who received initial training and par
including a reduction in the use of antibiotics
ticipated in a peer review process with control physicians
Our critical review of developing country training interven
diarrhoea decreased in the intervention group from 78.8 to
tions has shown that the most effective in-service education is
39.3%. while ORT use increased from 31.4 to 58.4%. Long
likely to be problem-based, repeated on multiple occasions,
focused on practical skills, and linked to the use of STGs. Tra
term follow-up demonstrated a prolonged effect, significantly
different from that shown by the control prescribers. Similar
ditional training methods have been shown to be less effec
sustained improvements occurred in the treatment of acute
tive than adult education techniques which use interactive
respiratory infections.
from the same setting. Prescription antibiotic use for acute
methods, such as discussion and feedback, as has been found
in developed countries?6 When the roles of supervisors and
trainers are combined, the impact of in-service training on
These interventions were then extended to district and state
level facilities with similar results.62 An interactive group
prescribing practice is further enhanced. These approaches
approach has also been used with community members. In
may require the training of trainers and supervisors to use
Indonesia, groups of mothers were taught how to review drug
these adult education techniques.
package inserts and make decisions about informed purchas
Since most work identified has focused on public sector pre-
drug purchases, especially reductions in the purchase of
ing of OTC drugs: this step led to a change in the patterns of
icribers. there is a need for further study of the efficacy and
duplicative products.6' As a result of the small group inter
cost-effectiveness of continuing education for private sector
vention. families reduced their monthly purchase of brand
providers. In the private sector, professional societies and
name drugs from 5.3 per month to 1.5 per month, compared
associations are likely to be the most effective mechanisms
for providing this training.57
4.3 and a control group where the change was from 5.6 to 5.2.
with a seminar group in which the reduction was from 5.7 to
The impact of these interventions stems from the powerful
Promising approaches
In some settings impressive improvements in drug use have
been achieved with innovative interventions?---'6*'-61-63 While
forces generated during group discussions. Members of the
group absorb group norms and are motivated to change their
practices more profoundly than in a passive learning environ
ment.
these approaches would not be recommended yet for wide
spread implementation, they are worth testing in other set
tings and for other types of prescribing problems. Such testing
will require collaboration between relevant departments of
universities as an important first step. If a pilot programme is
(7)
Train pharmacists and drug sellers to be active members
of the health care team and to offer useful advice to
consumers about health and drugs
successful, it is advisable to expand the scheme slowly and not
In
to jump from a single pilot project to a national programme.
resources and consumer preferences dictates that pharmacies
Whenever new interventions are tested, it is important to
and drug shops are the major source of pharmaceutical advice
look for unintended consequences that might reduce or even
and treatment to the public. However, many retail settings
negate improvements in practice.
many
countries,
the
reality
of shortages
of human
are staffed by personnel with little or no training in health
care or pharmaceuticals. In Nepal, considerable work has
(6)
Stimulate an interactive group process among health
providers or consumers to review and apply information
about appropriate use of medicines
been done to upgrade the skills of drug sellers, including their
prescribing and dispensing practices.64 Studies in Kenya and
Indonesia have shown that it is possible to improve the diar
rhoea treatment practice of pharmacy staff through a combi
Group process has long been a fundamental strategy for
nation of focused small-group training and building up their
encouraging behaviour change employed by social scien
self image as health professionals?7 In this two country study.
tists?5-"' Group development of treatment norms, in which
sales of oral rehydration salts increased by 33% in Kenya and
small numbers of prescribers meet to review a clinical
34% in Indonesia. Sales of antidiarrhoeals decreased by 17%
problem and develop strategies for practice improvement,
in Nairobi and by 29% in Indonesia. In the Philippines, tar
has also shown remarkable potential in several settings. In
geted training of local drug vendors improved the quality of
Indonesia, doctors and paramedics were brought together to
their practice, particularly for drugs which have an inherent
discuss high injection use with a group of patients. Clinical
safety risk?5 Pharmacists and drug sellers play an important
issues were discussed, but more importantly expectations and
role in drug recommendation and retail purchase, and repli
misconceptions about injections were debated. This interac
cation and extension of these studies are urgently needed.
tive group discussion resulted in sudden sustained decline in
injection use.6*' Prior to the intervention the rate of injections
per consultation was 69.5%, which was reduced in the inter
vention group to 42.3%. In comparison, in the control group
the decline was from 75.6 to 67.1%. In Mexico, groups of
(8)
Encourage active involvement by consumer
organizations in public education about drugs, and devote
government resources to support these efforts
doctors reviewed diarrhoea and ARI treatment algorithms.
At a policy level the central government has a responsibility to
developed common approaches and participated in peer
ensure the quality of drugs and also of the information that
RO Laing et al.
18
accompanies them. There may also be a need to regulate
accreditation system and continuing education programmes
advertising, and to require clear statements of risks and poten
has many benefits. Changing the way governments or insur
tial
adverse
drug
reactions.
Consumer-oriented
package
inserts can increase understanding in literate communities.
ance companies reimburse drug expenditures may also have
positive effects on drug use.
Public education activities have been included in some essen
tial drug programmes, but these activities are usually carried
out by NGOs and consumer organizations. In 1997. a global
survey by WHO concluded that there is a great need for public
education about medicines, even in developing countries with
(10)
Establish systems to monitor key pharmaceutical
indicators routinely in order to track the impact of health
sector reform and regulatory changes
limited resources.66 The survey identified many examples of
Fundamental changes are occurring in health systems and in
public education about drugs, but unfortunately many of these
the economics of health systems. These changes, which are
projects were poorly supported, documented and evaluated.
The survey concluded that gains due to these programmes are
likely to have profound effects on drug use. have been
reviewed in a number of publications.1’ Many decisions on
probably incremental, but that results are difficult to ex aluate
health system structure and financing, health reform and
with classical methodologies. This important area therefore
decentralization may have negative impacts on drug use. " For
needs much more understanding, research and support.
example, introducing patient fees in the form of a fixed charge
may lead to ox er-consumption of drugs, while introducing sep
Drug representatives and other promotional activities by
arate fees for each drug may tend to reduce access among the
pharmaceutical companies have a major influence on pre
poor, unless there are exemption mechanisms.71 Decentraliza
scribing and on drug use by the general public. WHO has pub
lished ethical criteria for drug promotion.6' but very few
tion of budgeting and control may lead to inefficient procure
countries have written or enforced regulations to make these
a breakdown in supervision systems. Within decentralized
ethical criteria effective. Their impact is therefore not yet
systems, problems may also develop in referral systems and in
clear and much more work is needed in this area.
training activities, leading to inequity between districts.'-
ment processes, which result in increased drug prices as well as
The key message for policy-makers is that policy changes that
Crucial gaps in experience
accompany health sector reform are likely to have effects on
drug use. There is a need to establish simple systems to
Develop a strategic approach to improve prescribing in
monitor key pharmaceutical indicators that might change as
the private sector through appropriate regulation and long
a result of implementing system-wide reforms. Several sets of
term collaborations with professional associations
pharmaceutical indicators have already been developed and
tested.73-74 Policy-makers and managers should select a fexv
(9)
So far most efforts at improving drug use have focused on the
public sector, particularly at the primary care level.10 The
private sector frequently provides better access to pharma
ceuticals for the general public than does the public sector,
locally appropriate indicators and collect them on a regular
basis in order to be able to respond in a timely way to nega
tive changes.
although there tends to be an urban focus.60 Yet. the private
sector has unfortunately been neglected by public policy
makers. To change practices in the private sector, it is import
Conclusions
ant that policy-makers understand the motivations of private
Experiences during the last 15 years have taught us that there
providers. Public servants frequently perceive that private
are many possible approaches for policy-makers and health
practitioners are purely interested in profit rather than in the
system managers to encourage improved use of medicines. In
quality of their practice. However, recent experiences have
this paper we have recommended ten approaches that we feel
shown this perception to be an oversimplification. Generally.
would establish a sound, broad-based programme for quality
all practitioners are interested in their status as health pro
drug use leading to better quality of care and improved cost
fessionals. and their position within the community. Pro
effectiveness. Fixe strategies can be recommended on the
fessional associations, with a majority of their membership in
basis of proven success in both developing and industrialized
the private sector, are often willing to establish programmes
countries: standard treatment guidelines; essential drug lists:
to improve the skills or knowledge of their members. Con
pharmacy and therapeutic committees: problem-based basic
training:
in-service
siderable opportunities exist for improving drug use through
professional
better licensing and inspection.60 Finally, controls on adver
Three approaches, while not widely tested yet, offer great
tising and regulations regarding unethical promotion of drugs
promise: interactive discussions among peers; drug seller
can be implemented by national governments and insti
training; and consumer education. Finally, two approaches
tutional administrators.
require longer-term policy commitment: private sector out
and
targeted
education.
reach through professional associations; and regular moni
To stimulate long-term improvements in drug use in the
toring of key pharmaceutical indicators.
private sector, a range of strategies should be considered.
Licensing of practitioners and premises is traditionally used
by governments to regulate the private sector. When possible.
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54 Loevinsohn B. Guerrero E. Gregorio S. Improving primary health
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actional group discussion: results of a controlled trial using a
behavioral intervention to reduce the use of injections in public
health facilities. Social Science and Medicine 1996; 42. 1185.
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posters/2D2_TXTF.html
Gutierrez G. Guiscafre H. Bronfman M. Walsh J. Martinez H.
Munoz O. Changing physician prescribing patterns: evaluation
of an educational strategy for acute diarrhea in Mexico City.
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alternative to improve the rational use of OTCs. Paper pre
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Available on-line at http://www.who.ch/programmes/dap/icium/
poslcrs/3B3_TXTF.html
"4 Katie KKK and members of INRU’D Nepal. Intervention test of
monitoring national drug policies. WHO/DAP. Geneva World
Health Organization. 1994.
74 Management Sciences for Heahh/Rational Pharmaceutical
training and supervision on prescribing and dispensing prac
tices. Report to the RPM Project. Kathmandu. Nepal.
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behavior of sarisari (variety) store keepers in some villages in
the Philippines. Presentation at ICIUM meeting. Available on
line al http://www.who.ch/programmcs/dap/icium/poslers/3C4
TXTF. hlml
mechanisms on rational drug use in Eastern rural Nepal Presen
tation at ICIUM. Chang Mai. 1997. Available on-line at http
w-ww.who.ch/programmes/dap/icium/posters/4e2_Text.html
’• Campos-Outcalt D. Kewa K. Thomason J. Decentralization of
health services in Western Highlands Province. Papua New
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Acknowledgements
Support for this paper was provided by the World Health Organiz
ation Action Programme on Essential Drugs. Boston University the
International Network for Rational Use of Drugs, the Danish Inter
national Development Agency, and the Applied Research on Child
Health Project.
Biographies
Richard Laing teaches international public health at Boston Uni
versity School of Public Health. He has a long-standing interest in
improving drug use in developing countries based on his prior
experience in the Zimbabwe Essential Drugs Programme (ZEDAP
and as past coordinator for the International Network for th<_
Rational Use of Drugs (INRUD).
Hans Hogerzeil is a public health physician who has worked as ;■
mission doctor in India and Ghana. He joined the Action Pro
gramme on Essential Drugs at WHO in 1985. Over the years he habecn adviser on essential drugs policies to the governments of India
Indonesia. Kenya. South Africa. Sudan and Zimbabwe and many
other developing countries. He has also led research and develop
ment activities related to pharmaceutical donations and training o
medical students. Currently he coordinates WHO’s activities in drug
policy development, access to essential drugs, and promotin'.
rational drug use.
Dennis Ross-Degnan is an assistant Professor in the Departmeni o
Ambulatory Care and Prevention of Harvard Medical School am
Harvard Pilgrim Health Care, and the coordinator for the Harems
Support Group of the International Network for the Rational Use <.
Drugs. He publishes widely on pharmaceutical policy and hehaviou:
change interventions.
Correspondence: Dr Richard Laing. Dept of International Health
Boston University School of Public Health. 715 Albany Street. 3 4W
Boston. MA 02118. USA. Email: richardl&hu.cdu
18
MATERIAL ON HIV/AIDS
SENT BY
MEDICAL MISSION INSTITUTE
UNIT FOR HEALTH SERVICES AND HIV/AIDS
SALVATORSTR. 22
D-97074 WURZBURG
GERMANY
June 2001
1 ^.1
Impact of the HIV epidemic on the spread of other
diseases: the case of tuberculosis
Enrico Girardi3, Mario C. Raviglioneb, Giorgio Antonucci3,
Peter Godfrey-Faussettc and Giuseppe Ippolito3
AIDS 2000, 14 (suppl 3):S47-S56
Keywords: HIV infection, AIDS, opportunistic infections, tuberculosis, epidemiology, prevention
Introduction
turn, may prolong or increase the infectiousness of
individuals with sexually transmitted infections.
The spread ot the AIDS epidemic resulted in the
emergence of a new population of irnmunosuppressed
However, the interaction between HIV and tubercu
individuals, larger than any previous such population.
losis has several unique features. First, tuberculous
As could be easily anticipated, this, in turn, had a sig
infection is highly prevalent; approximately one-third
nificant impact on the spread and natural history of
of the world population was estimated to be infected
other diseases, which either require or are enhanced
with Mycobacterium tuberculosis in 1997 [5]. In some
by a severe impairment of cell-mediated immunity.
settings, there is a considerable overlap between the
However, the extent and the public health implica
population infected with HIV and that infected with
tions of the interaction between HIV infection and
M. tuberculosis. For instance, in developing countries,
greatly.
or among those who have recently moved from them,
other
diseases
vary
Some
opportunistic
diseases, such as Pneumocystis cariuii pneumonia or
the prevalence of tuberculous infection among young
Mycobacterium avium-iutracellulare complex infection,
adults, who are at greatest risk of HIV infection, is
that were extremely rare before the AIDS epidemic
often greater than 50%. The regions with the highest
became quite common in the past two decades [1,2].
seroprevalence of HIV in the general community
However, these common HIV-related conditions pose
already have high prevalences of tuberculous infec
no threats to the general population. Some forms of
tion. In industrialized settings, there may also be par
cancers, such as non-Hodgkin lymphomas (NHL), also
ticular populations with common risk factors for
increased in incidence in some population groups in
infection with both HIV and tuberculosis such as
the past two decades, and this finding may be attrib
homelessness or intravenous drug use. Second, tuber
uted. at least in part, to the spread of HIV infection,
culosis is the only HIV-associated respiratory infec
which is clearly associated with an increased risk of
tion that can readily be transmitted via the respira
developing this tumour [3|. However, there is no
tory route among persons with HIV infection and,
epidemiologic relation between rhe incidence of NHL
from them, to non-HIV-infected persons. Third, the
among HIV-infected persons and the risk of NHL for
huge burden of HIV-associated tuberculosis has made
non-HIV-infected persons. A more complex relation
it more difficult for national tuberculosis programmes
ship exists between HIV infection and some other sex
in developing countries to achieve or maintain high
ually transmitted diseases [4], The sexually transmit
detection and cure rates, resulting in an increasing
ted infections, particularly those causing genital ulcers,
transmission of tuberculosis infection [6]. Finally, HIV
may increase susceptibility to HIV infection that, in
infection is one of the major factors contributing to
From the 'Centro di Riferimento AIDS — Servizio di Epidemiologia delle Malattie Infettive, IRCCS L. Spallanzani, Rome",
Italy ’’Programme on Communicable Diseases, World Health Organization, Geneva, Switzerland, and the ‘Department
of Infectious and Tropical Diseases, London School of Hygiene and Tropical Medicine, London, UK.
Sponsorship: E.G., G.A. and G.l. were financially supported by Ministero della Sanita-Progetto AIDS, and Fondi per la
Ricerca Corrente degli IRCCS.
C rrp-oondence to Dr Giuseppe Ippolito, Centro di Riferimento AIDS — Servizio di Epidemiologia delle Malattie
Infettive IRCCS L. Spallanzani, Via Portuense. 292-00149 Roma, Italy. Tel: +39 65 594 223; fax: +39 65 594 224;
e-mail: craids@tiscalinet.it
© Lippincott Williams & Wilkins
S47
S48
AIDS 2000, Vol 14 (suppl 3)
Table 1. Incidence of tuberculosis in persons infected with HIV who did not receive pres •entive therapy, by tuberculin and
other dclayed-type hypersensitivity skin test status.
Tuberculosis incidence per 100 person years
Study
period
Country
Number of
persons studied
Observational studies
United States
1985-1988
Zaire
1987-1989
United States
1988-1990
Rwanda
1988-1990
Spain
1989-1991
Spain
1989-1992
Italy
1993-1994
1988-1994
United States
215
249
93
401
290
348
2666
1037
Clinical trials*
Haiti
Uganda
Kenya
Zambia
United States
70
895
342
394'.
257
1986-1991
1993-1995
1992-1994
1994-1996
1991-1996
PPD +
PPD-,
anergic.
PPD-,
not anergic
PPD-, anergy
not assessed
7.9
-
—
—
—
0.3
—
—
2.1
9.7
5.5
10.4
16.2
4.5
4 5
10
3.4
8
9 8
6.6
—
Total
Ret.
2 1
3 1
7.7
2.4
1101
12.4
5.4
2.6
2.9
0.7
0
0.3
0.2
-
2.2
0.7
-
-
5.7
7.5
2.7
3.8
4 9
9 1
3
3 5
0.9
0 9
•Data from control groups in clinical trials of tuberculosis preventive therapy are reported
UH
1121
1131
(141
1151
1161
(171
1181
1191
1201
(211
(221
PPD, purified protein derivative.
the resurgence of tuberculosis in sub-Saharan African
a condition on the tuberculosis epidemic will also
countries affected by HIV, due to both the high risk
depend upon its prevalence in the population, and
of developing active tuberculosis in
HIV-infected
specifically among persons with latent infection and
persons and the increased risk of tuberculous infec
among those exposed to infectious cases. We will
tion from them to non-HIV-infected persons.
briefly review how HIV infection acts as an important
condition capable of modifying these parameters.
Progression rate of latent tuberculosis infection
Transmission dynamics of tuberculosis
The risk of developing active tuberculosis among
persons with latent .V/. tuberculosis infection, but who
The impact of the HIV epidemic on tuberculosis can
do not have HIV infection, has been estimated to be
be better understood if one considers the intrinsic
no greater than 10% in their entire lifetime [9], This
transmission dynamics of tuberculosis in the popula
is in sharp contrast with results of longitudinal studies
tion. According to a basic model of this transmission
on tuberculin-positive HIV-infected persons [10-17]
[7,8], at any given time point in the population, there
and with data from control groups of patients in clin
is a proportion of persons latently infected with M.
ical trials of tuberculosis preventive therapy [18-22].
tuberculosis. In any given time interval, a fraction of
Although these studies have been conducted in dif
these
ferent geographical areas and in different populations,
persons
will
progress
to
overt disease, thus
infecting susceptible persons in the population. A
their results are rather consistent, and most of these
of persons with newly
studies show incidences of tuberculosis ranging from
proportion
(5%, see later)
acquired infection
progresses rapidly
(within
1-2
5 to
10% per year of observation (Table 1). More
years) to clinical disease, thus causing additional cases
over, the risk of re-activation among HIV-infected
of infection. On the other hand, the large majority
persons appears to be correlated with the level of
of infected persons enter the pool of latently infected
immunosuppression. In a cohort study from Italy [16],
individuals in the population. The main parameters
the
governing this dynamic are: (i) the progression rate
tuberculin-positive HIV-infected persons was 2.59 per
annual
incidence
of
tuberculosis
among
to active tuberculosis among latently infected persons;
100 person-years among those with a CD4 cell count
(ii) the number of new infections originating from
above 350/pl. 6.54 among those with CD4 cell counts
an
active
case
(the
infectiousness
of tuberculosis
patients); and (iii) the proportion of persons who
between 200 and 350/pl. and 13.3 among persons
with CD4 cell counts less than 200/pl.
rapidly progress to overt disease among those newly
infected. Any condition that may modify the natural
Infectiousness of tuberculosis patients
equilibrium of these parameters will ultimately affect
The source of transmission of tuberculosis infection
the magnitude of the epidemic. The impact of such
is patients with pulmonary tuberculosis. It has been
HIV and tuberculosis Girardi et al.
Table 2 Infectiousness of HIV-infected patients with pulmonary tuberculosis (TBl compared with non-HIV-infected patients.
Contacts of HIV-negative
tuberculosis patients
Contacts of HIV-positive
tuberculosis patients
Country
Study period
n
Florida, USA
Burundi
Kenya
Zaire
Florida, USA
Zambia
Spain
Uganda
Dominican
1985-1986
1985-1936
1989-1990
1989-1990
1985-1989
1989
1990-1993
NA
1994-1995
54
48
102
521
1095
207
456
319
153
%, with TB
35
NA
61
60
30.41
52t
NA
79
61 +
NA
12.57 8
NA
NA
4
7 9*
NA
3
n
% with TB
% PPD+
Ref.
44
28
255
692
2158
141
624
NA
0
5.1
NA
NA
44
NA
[281
[291
[30|
[311
1321
[33i
|34|
[351
[361
PPD+
58
63
42
71
\ \
3
3.8
NA
6
380
551
79
76
Republic
'Significantly higher IP < 0.05i compared with contacts of HIV patients. tSignificantly lower (P < 0.05) compared with contacts of HIV patients. PPD, purified protein derivative; NA, not assessed.
clearly shown that, among them, those with a spu
tuberculosis patients. A study from Spain showed
tum smear positive for acid fast bacilli are much more
similar results [34], while two other studies found a
likely to transmit the infection [23]. A recent study
similar proportion of tuberculosis cases among house
has attempted to quantify the relative infectiousness
hold contacts of tuberculosis cases with and without
of sputum-smear-positive and sputum-smear-negative
HIV infection [30,33], A major limitation of these
patients using DNA fingerprinting analysis of myco
studies is their cross-sectional design, which made it
bacterial
difficult to ascertain if the case that is diagnosed first
isolates
from
patients
with
pulmonary
tuberculosis in San Francisco, CA, USA [24]. This
(index cases) is really the source of infection for cases
study shows that, although transmission from sputum-
diagnosed as a results of contact investigation (second
sinear-negative patients is not at all uncommon, the
ary cases). Studies assessing tuberculous infection,
probability of acquiring tuberculosis infection from
rather than secondary cases of active disease, among
a sputum-smear-negative patient is about one-fifth
contacts of tuberculosis patients found that the pro
that from a sputum-positive patient. A series of studies
portion of tuberculin-positive persons was very sim
compared the proportion of sputum-smear-positive
ilar
[28,30,31,35]
or
significantly
lower
[32,33]
non-infected
among contacts of HIV-infected patients with tuber
tuberculosis patients [25]. Almost all of these studies
culosis compared with contacts of non-HIV-infected
found a lower proportion of sputum-smear-positive
patients. Again, most of these studies were cross-
patients among those with
sectional.
patients
betsveen
HIV-infected
and
HIV infection. Severe
However,
a
recent
study
from
Santo
immunosuppression may be associated with a high
Domingo, Dominican Republic, also assessed tuber
the lung tissue of HIV-infected
culin conversion rates among household contacts of
patients with pulmonary tuberculosis [26]. However,
tuberculosis patients [36]. In this study, conversion to
HIV-infected patients may be less likely to mount a
a positive tuberculin test was significantly less com
granulomatous response to .Vf. tuberculosis, and may
mon among contacts of HIV-infected tuberculosis
therefore not produce cavitation and not excrete large
patients compared with contacts of non-HIV-infected
numbers of bacilli from the lung [25]. On the other
patients (24% versus 35%). Taken together, available
hand,
data does not provide evidence that HIV infection
bacillary
load
in
it has been suggested that the diagnosis of
tuberculosis may be more often delayed in
HIV-
mfected patients because unusual clinical teatures lead
may enhance infectiousness of individual patients with
tuberculosis.
the doctor to take longer to reach a diagnosis [27],
The resulting delay in the initiation of antitubercu
The probability for a person with active tuberculosis
lous therapy may lead to a longer period of infec
to infect susceptible individuals is also a function of
tiousness. Observational studies that analysed the in
the length of time for which this person remains in
fectiousness of HIV-infected patients compared with
fectious. This, in turn, depends on the rapidity of case
conflicting
detection and initiation of appropriate treatment. At
those
non-ihfected
[28-36|
provided
results (Table 2). In a small study from Burundi [29],
population level, a decrease in the fraction of tuber
six cases of tuberculosis were found among 48 house
culosis patients effectively treated will lead to an in
hold contacts of HIV-infected patients with pulmo
creased circulation of M. tuberculosis [37|. Available
nary tuberculosis, while no case was observed among
evidence does not suggest that tuberculosis treatment
28 among household contacts of non-HIV-infected
is significantly less effective in HIV-infected persons.
S49
S50
AIDS 2000, Vol 14 (suppl i)
Table 3. Attack rate of active tuberculosis among HIV/AIDS patients exposed to infectious tuberculosis in institutional settings.
Country
Study period
Setting
Multi-drug resistance
Attac k rate t"/
Reference
Italy
California, USA
New York, USA
Puerto Rico, USA
New York, USA
1989
1 989
1989-1990
1989
1 990
1992-1994
Hospital ward
Residential facility
Hospital ward
Hospital ward
Hospital ward
Hospital ward
No
J9
J7
|42|
14 J|
|44|
|45|
1461
Italy
although the relapse rate may he somewhat higher
No
Yes
No
Yes
')
17
22
29
Yes
|47|
of 5.4 per 100 person years was recorded among 21
among HIV-infected persons |38|. However, the in
HIV-infected tuberculin converters 117|. Estimates of
crease of the global number of tuberculosis cases
the risk among more severely
linked to the HIV epidemics may have led, at least
patients may be derived from studies on HIV-infected
in some areas, to a reduction in the overall effective
patients exposes! to tuberculosis in institutional settings
ness of tuberculosis treatment programmes. In sub-
[42—17|. in which most patients had symptomatic
immunosuppressed
Saharan African countries, a two- to fourfold rise in
HIV infection or AIDS (Table 3). An incidence as high
notification rates, largely attributable to HIV epi
as 35
demics, has been recorded in the past decade [6].This
patients exposed to infectious tuberculosis in a hospital
per
100 person-years
was
reported
among
has resulted in an increasing demand for anti-tuber
unit for HIV-infected patients [46|. Attack rates rang
culosis drugs, laboratory supply and equipment, and,-
ing from 9 to 39% have been reported among HIV-
ultimately, in a tremendously increased workload for
infected patients during institutional outbreaks of
health workers. This occurred in a context of declin
tuberculosis due to both multidrug-resistant and sus
ing economies and reduced health care expenditure.
ceptible strains, with an incubation period ranging
Eventually, the crisis faced by many national tuber
from 1 to 6 months. These figures should be regard
culosis programmes led to a general reduction in the
ed as minimum estimates of the rate of rapid pro
ability of these programmes to identify and treat
gression of a recently acquired infection, since it
tuberculosis patients. Indeed, in many sub-Saharan
cannot
African countries, less than one-half of patients with
actually infected. Nonetheless, they clearly demonstrate
sputum-smear-positive pulmonary tuberculosis are
a striking increase of this risk, especially among those
detected and. in most, the cure rate does not exceed
with a more severe immunosuppression.
70%
[39], A
similar
phenomenon
may
also
be
assumed
that
all
those
exposed
were
have
occurred in some parts of the industrialized world
In
New York
City,
tuberculosis
incidence
rates
increased by almost 40% between 1985 and 1989, and
Re-activation versus new infection
HIV infection, together with worsening social con
ditions, had a major contribution to this resurgence
Data from prospective studies consistently show that
at a time when most treatment facilities for tubercu
the incidence of tuberculosis among HIV-mfected
losis patients had been dismantled. As a result, treat
persons is higher among those who are tuberculin
ment completion rates as low as 11% were recorded
positive. The occurrence of tuberculosis in a tuber
in New York City in 1989 [40].
culin-positive person does not necessarily imply re
activation of a latent infection, and purified protein
Progression of recently acquired tuberculosis
infection
derivative (PPD) negativity cannot rule out previous
The risk of developing active tuberculosis is higher
suppression greatly increases the ‘false negativity’ rate
tuberculosis infection, since HIV-induced immuno
during the first 2 years following primary infection.
of the tuberculin skin test [48]. Nevertheless, availa
According to current estimates, based on longitudi
ble evidence strongly suggests that a person infected
nal studies of HIV-seronegative tuberculin convert
with HIV has a greater probability of developing
infection
active tuberculosis if he/she has been infected by M.
present with active disease within 2 years [23,41],
tuberculosis in the past. However, this does not imply
Scarce data are available on clinical progression of
that re-activation of a latent infection is the predom
HIV-infected persons who convert to tuberculin posi-
inant
tivitv. In a cohort study from Italy [16|. three out of
tuberculosis at population level.
ers. 5%
of those
acquiring tuberculosis
mechanism
responsible
for
HIV-associated
13 HIV-infected persons who became tuberculin
positive
and
did
not
receive
developed tuberculosis within
preventive
therapy
I year from skin test
conversion, while in the United States an incidence
This issue has been addressed during the past decade
using a new molecular tool. DNA
fingerprinting
analysis of insertion element 1S6110 of the genome
HIV and tuberculosis Girardi et al.
Table 4. Results of DNA fingerprinting studies of Mycobacterium tuberculosis strains isolated for HIV-infected and non-HIVinfected tuberculosis patients.
Clustered strains/total (%)
Country, region
Study period
HIV-positive
patients
Non-HIV-positive
patients
Total
Reference
USA, San Francisco
USA, New York
Spain, Seville
France, Paris
Netherlands
Brasil, Sao Paulo
Namibia, Windhoek
1991-1992
1989-1992
1993-1995
1995
1993-1997
1995-1997
1995-1996
75/121 (62)’ +
26/46 (56)*
40/86 (47)’
9/31 (29)
90/181 (50)
58/151 (38)’
33/73 (45)
117/352 (3.3)
1 3/58 (24)
13/41 (32)
86/241 (36)
1883/4087 (46)
35/142 (25)
90/190 (47)
191/473 (40)
39/104(35)
67/175 (38)
95/272 (35)
1971/4266 (46)
93/293(32)
123/263 (47)
1511
152)
1551
1561
157]
158]
159]
For each study, the number and the proportion of M. tuberculosis strains with a DNA fingerprinting identical to at least another
strain (clustered strains) are reported for HIV-infected tuberculosis patients, non-HIV-infected tuberculosis patients and for the
entire study population. ' Proportion ot strains included in clusters significantly (P < 0.05) higher among HIV-infected patients
compared with non HIV-intected patients. + Only patients with AIDS.
of M. tuberculosis. When this tool is applied to com
munity-based studies, patients infected with strains
The global picture: a widening gap between
the poor and the rich
that have an identical DNA fingerprint are consid
ered part of a cluster, and all patients included tn a
cluster but one (the source case) are considered to
Tuberculosis/HIV in resource-poor countries
have tuberculosis due to recent transmission of the
The World Health Organization (WHO) has recently
infection. The validity of this assumption, however,
published
may vary according to the timeframe and migration
tuberculosis [5], The global picture of tuberculosis/
within the population in which the study is performed
HIV co-infection has also been reassessed. In 1997,
new estimates of the global burden
of
and to the completeness of sampling of tuberculosis
it was estimated that 8% of new tuberculosis cases.
cases studied [49,50].The first studies conducted with
or 640 000 cases, occurred in HIV-infected persons
these methods [51,52] found a high proportion of
and, in the same year, more than 10 million people
cases due to recent transmission in two metropolitan
(approximately 2% of the world population) were
areas in the United States (between one-third and
living with double infection. Most of the burden of
one-quarter) and showed that over one-half ot tuber
tuberculosis/HIV co-infection remains concentrated
culosis cases among HIV-infected or AIDS patients
in sub-Saharan African
were in those with recently acquired infections.These
infections are highly prevalent: in this region, 32%
countries, where
the
two
findings were unexpected since, at the time, it was
of tuberculosis patients are estimated to be HIV-
commonly held that the overwhelming majority of
infected and the overall prevalence of dual infection
cases in low tuberculosis incidence countries could be
is above
attributed to re-activation of latent tuberculosis infec
indicator of the impact of HIV, as they do not reflect
10%. These figures, however, are only one
tion [53]. However, when these studies where conduct
the additional tuberculosis cases arising from the over
ed, the tuberculosis incidence rate was high, over 50
all
cases per 100 000 population both in San Francisco
associated tuberculosis cases. Although the latest global
and in New York City [54]. Subsequent studies [55—
estimates are not strictly comparable with previous
59], summarized in Table 4, reported an overall sim
ones [60], due to methodological differences, the
ilar proportion of cases due to recent infection. How.-
global number of cases attributable to HIV infection
ever, some of these studies did not find significant
could have at least doubled during the past decade
increase
in
risk
of infection
linked
to
H1V-
differences in the proportion of cases in the cluster
(Table 5). As the vast majority of the 320 000 HIV-
among HlV-intecced patients compared with other
associated tuberculosis cases in 1997, in excess to those
tuberculosis patients [56.57.59],Taken together, these
estimated for 1990. occurred in sub-Saharan Africa,
findings suggest that, during the past decade, at least
the overall tuberculosis incidence in this area in
one-third of HIV-associated tuberculosis cases could
creased by approximately 35% between
be attributed to recent infection, and that the pro
1997.
portion of cases among HIV-infected persons that are
account for only 50% of this increase. This observa
recently infected usually reflect, and sometimes mag
tion may reflect, at least in part, the likely contribu
nify, tuberculosis transmission in a given population.
tion of HIV-associated tuberculosis to increased trans-
1990 and
However, cases among HIV-infected persons
S51
S52
AIDS 2000, Vol 14 (suppl 3)
Table 5. Estimated tuberculosis incidence and number of cases in HIV-infected persons in 1990 and 1997 by region
1990
Total tuberculosis
cases
Region
South-east Asia
Western Pacific!
Africa
Eastern Mediterranean
Americas!
Eastern Europe§
Industrialized countries*!]
Total
Rate*
1997
Tuberculosis cases
in HIV-positive Total tuberculosis
persons (%)
cases
237
3 106 000
1 839 000
992 000
641 000
569 000
194 000
196 000
7 537 000
136
191
165
1 27
47
23
143
66 000 (2)
19 000 (1)
194 000 (19)
9000 (1)
20 000 (3)
1000 (0.5)
6000 (3)
315 000 (4)
2 948 000
1 924 000
1 586 000
615 000
390 000
360 000
140 000
7 962 000
Tuberculosis cases
in HIV-positive
persons (%)
Rate'
64 000 (2)
9000 (0.5)
515 000 (32)
16 000 (3)
22 000 (6)
2000 (0.5)
12 000 (8)
640 000 (8)
202 .
129
259
129
79
74
16
136
Data from (5,60|, different methods were used to produce estimates for 1990 and 1997. 'Crude incidence rate per 100 000
population. ^Includes all countries of the Western Pacific Region of the World Health Organization (WHO), except Japan,
Australia and New Zealand, -tlncludes all countries of the American Region of the WHO, except the United States and Canada
§ Includes Eastern European countries, and states of the former USSR U Includes Western European countries, lapan, Australia,
New Zealand, the United States and Canada
mission in the general population . This effect has also
1992, however, the number of reported cases started
been recently demonstrated in a study from Kenya
to decrease and, compared with 1992, a 31% decrease
[61], In that country, the annual risk of infection,
in incidence of tuberculosis has been observed in
estimated
through
tuberculin
surveys
children, increased sharply between
in
school
1986 and 1996
1998.
In this context, the decrease of HIV-associat
ed tuberculosis was even more pronounced. The pro
in districts with a 50% HIV prevalence among tu
portion of tuberculosis cases with
berculosis patients and an increase in notification rates
between 1993—1994 and 1997 decreased from 15 to
dating from the early 1990s, but not in other districts.
HIV infection
10% among persons of all ages, and from 29 to 21%
among those aged 15-44 years [67]. This downward
Other regions are suffering from the co-epidemic.
trend appears to reflect primarily the intensification
For example, in India, were 44% of the population is
of control measures, including those specifically tar
estimated to be infected with M. tuberculosis [5). HIV
geted to HIV-infected persons. In New York City, the
seroprevalence among tuberculosis cases has been
incidence of tuberculosis in HIV-infected persons
steadily increasing during the past decade [62], It has
decreased by more than 20% between 1992 and 1994,
been estimated that, in 1997, India was the country
when several new measures were adopted to improve
with the highest number of co-infected individuals,
control
accounting for almost one-fifth of the global number.
receiving directly observed therapy increased from
[68], The number of tuberculosis patients
Alarmingly, in countries of the former Soviet Union.
100 to 1300, and strict tuberculosis control measures,
tuberculosis
the past
including high-technology tools such as negative pres
decade due largely to deteriorating socio-economic
sure isolation facilities, were implemented to prevent
conditions [63]. This is also the time when the HIV
tuberculosis transmission in institutional settings.These
epidemic began to spread [64], Although the incidence
interventions may have produced a substantial de
of HIV-associated tuberculosis is still low in this area,
crease of transmission of .M. tuberculosis and, thus, of
the potential for a significant increase clearly exists.
the risk of developing tuberculosis as a
incidence
rates
increased
in
result of
recently acquired infection. In Baltimore, widespread
Tuberculosis/HIV in high-resource countries
use
In the industrialized countries, the impact of HIV-
prevent progression to active tuberculosis in those
associated
who are latently infected
tuberculosis, which may
have increased
of preventive
therapy, which
may
effectively
[69]. led to a dramatic
during the first half of the past decade, seems to have
reduction of the incidence of tuberculosis among
levelled off Or decreased in more recent years. The
HIV-infected intravenous drug users
United States has been heavily hit by the tuberculo-
Francisco, starting from 1991,. several interventions
sis/HIV epidemic. The number of tuberculosis cases
increased regularly in 1985-1990, and 28 000 cases
were intensified, including improvement of contact
investigation, expanded use of directly observed treat
of tuberculosis were reported in excess to what was
ment and of preventive therapy for HIV-infected
expected from the historical trends [651. It was esti
persons, and improvement of control measures in hos
mated that at least 30% of the excess cases could be
pitals and other institutional settings [7 I], The overall
directly attributed to the HIV epidemic |66|. Since
tuberculosis incidence rate dropped from 46.0 to 29.8
[70]. In San
HIV and tuberculosis Girardi et al.
per 100 000 population between 1991 and 1997, and
In developing countries, especially in sub-Saharan
an even larger reduction was observed among HIV-
Africa, the large majority of people living tvith HIV
mlected persons (from 491.8 to 65.6 per 100 000).
are not aware of their infection. In most instances,
Interestingly, the decrease of incidence among HIV-
the lack of any possible benefit from testing, such as
infected persons was not constant over this 7-year
non-existent options for treatment, is the reason for
period. In fact, incidence decreased by 5-15% each
choosing not to be tested. However, the number of
ear between 1991 and 1996, while an 80% decrease
'from
295.1
to
65.6
100 000
people who choose to find out their HIV status is in
HIV-infected
creasing, partly because of greater awareness of the
persons) was recorded between 1996 and 1997. This
need to plan the future and partly because of the
observation is consistent with the hypothesis that the
introduction of medical interventions such as those to
per
use of new combination antiretroviral therapies may
prevent mother-to-child transmission of HIV [79|. A
have also contributed to the decline of HIV-associ
completely nesv set of interventions addressing the
In the United States, data from a
tuberculosis/HIV problem is therefore needed that
ated tuberculosis
sentinel surveillance project show, among HIV-infected
takes into account recent changes in the epidemio
persons, a more than twofold decrease in incidence
logy of tuberculosis and that harnesses the consider
1992 to 1997 [72). Analysis of
able community capacity to support people living with
of tuberculosis from
data on the use of antiretrovirals by persons included
HIV. Such a core set would aim to: (i) reduce trans
m this project shows that the risk of tuberculosis was
mission of .W. tuberculosis by improving case-finding
reduced by 80%> in persons on highly active anti
and treatment; (ii) reduce reactivation of M. tubercu
retroviral therapy (HAART) and by 40% in persons
losis by establishing preventis'e therapy services; and
on other antiretroviral therapies, compared with those
(iii) reduce transmission of HIV by enhancing behav
who received no antiretrovirals [73J. Similar results
ioural change through counselling and testing services,
are reported in a cohort study from Italy in which
condom promotion and providing better management
patients who took dual combination therapy had an
of sexually transmitted infections.
80% reduction in risk of tuberculosis, while the risk
of tuberculosis in those on triple combination thera
The WHO has developed the concept of operational
py was reduced by 91% compared with patients who
integration of tuberculosis and HIV/AIDS control
did not receive combination therapy [74],
programme activities within the ‘ProTest' initiative.
The ultimate goal of the initiative is to reduce the
the
burden of the combined tuberculosis and HIV epi
recent decline of HIV-associated tuberculosis in the
demics. Towards this aim, voluntary counselling and
In
summary, available
evidence
suggests
that
United States, and most likely in other industrialized
testing offers an entry point into a wide range of pos
countries, has not been influenced by a single public
sible interventions. First, those who discover that they
health measure, but rather by the implementation of
are not infected with HIV have a strong motive to
several, at times expensive, tuberculosis control inter
ensure that they remain so, which can be translated
ventions and, possibly, bv novel therapeutic interven
into behavioural change by appropriate counselling.
tions on HIV disease.
Second, in those who have no symptoms but are HIV
infected, counselling amis to prevent transmission of
Novel approaches for tuberculosis control in
high HIV prevalence settings
HIV as well as to offer psycho-social support to the
individual.Tuberculosis preventive therapy is most fea
sible in this group, since exclusion of active tubercu
losis is less difficult. Third, in those who already have
What is the relevance of this experience for devel
symptoms of early HIV disease, the challenge is to
of HIV
detect active cases of tuberculosis early and treat them
infection? Directly observed treatment, short course
effectively. Not only will early case detection prevent
is the tuberculosis control strategy advocated by the
ongoing transmission of tuberculosis, it will also slow
oping
countries
with
a
high
prevalence
WHO. Based on five core elements [75). it empha
the progression of the HIV infection. This may be
sizes government commitment, diagnosis based on
achieved
bacteriological evidence among symptomatic patients,
services for people known to be HIV-seropositive
standardized short-course chemotherapy administered
using community workers and primary health care
under direct supervision, an effective drug supply sys
services. Algorithms for the integrated management
tem, and an information system allowing reporting
of respiratory symptoms need to be incorporated into
of cases and monitoring of treatment outcomes. This
training for those who support people living with
by
developing
more
active
case-finding
strategy, which has been shown to be highly effective
HIV. Social mobilization, counselling and education
in the most diverse settings [76,77|, however, seems
have to be used to encourage people to seek care early
unlikely to succeed, alone, in controlling tuberculosis
for possible tuberculosis symptoms. Case holding will
in areas where HIV is highly prevalent, although it
be improved by liaison with home-based care services.
may prevent the emergence of drug resistance [78|.
Fourth, the possibility to provide prophylaxis against
S53
S54
AIDS 2000, Vol 14 (suppl 3)
common bacterial or protozoal pathogens, such as the
pneumococci, salmonellae or isospora, during tuber
culosis
treatment
explored
(80|.
This
if
intervention,
and
beyond
cheap
confirmed
may
need
be
to
3.
co-trnnoXazole-based
to
be
effective,
may
prolong life among severely ill patients with HIV-
4.
related active tuberculosis. If this was implemented
and worked well, it would pave the way to systematic
and
careful
introduction
of
other
more
potent
5.
interventions, such as HAART. Finally, those with
advanced HIV disease, many of whom are house
6
bound, may be unable to visit their local clinic for
supervision of tuberculosis treatment and manage
7.
ment of their HIV-related illnesses. Thus, full use of
community-
and
home-based
care
organizations,
8
where they exist, should be considered to ensure that
proper tuberculosis care and control are delivered.
9
1 0.
Conclusions
The AIDS epidemic has a major impact on the epi
demiologic dynamics of tuberculosis and highlights
11
the many weaknesses of tuberculosis control both in
industrialized
and
in
developing
countries. The
experience accumulated in the past decade in indus
12
trialized countries shows that the HIV/tuberculosis
epidemic can be brought under control by interven
13.
tions that reduce the risk of progression to overt
tuberculosis infection (i.e. preventive therapy) and the
probability of becoming infected with M. tuberculosis
14
(i.e. case finding and adequate treatment, prevention
of transmission in institutional settings). Eventually, the
1 5.
widespread use of HAART for treating HIV disease
may have also contributed to the reduction of inci
16.
dence of HIV-associated tuberculosis in high-resource
countries. However, the long-term effect of HAART
on the risk of developing tuberculosis remains to be
17
determined and the impact of the use of HAART on
the tuberculosis/HIV epidemic in different popula
18.
tions should be quantified.
The tuberculosis/HIV epidemic appears to still be on
19
the rise in countries where HIV is highly prevalent
and innovative solutions are needed to achieve an
effective control in these countries. Interventions that
20.
proved effective in industrialized countries should also
be considered in resource-poor countries, but care
21.
fully designed pilot projects are needed to verify their
feasibility and effectiveness in countries with limited
22.
resources and a high prevalence of HIV infection.
23.
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persons with HIV infection Seventh Conference on Retroviruses
and Opportunistic Infections. San Francisco, CA, January-Feb
ruary 2000 [abstract 2551.
Raviglione MC, Dye C, Schmidt S, Kochi A, for the WHO
Global Surveillance and Monitoring Project Assessment of
worldwide tuberculosis control. Lancet 1997, 350.624-629.
China Tuberculosis Control Collaboration. Results of directly
observed short-course chemotherapy in 112 842 Chinese pa
77.
78.
79
80.
tients with smear-positive tuberculosis. Lancet 1996, 347:358362.
Harries AD, Nyong'Onya Mbewe L, Salamponi FML, et al
Tuberculosis programme changes and treatment outcomes in
patients with smear-positive pulmonary tuberculosis in Blantyre,
Malawi. Lancet 1996, 347 807-809
De Cock KM, Chaisson RE. Will DOTS do it? A reappraisal of
tuberculosis control in countries with high rates of HIV infec
tion. Int J Tuberc Lung Dis 1999, 3:457-465
World Health Organization/Giobal Tuberculosis Programme and
UNAIDS. Preventive therapy against tuberculosis in people
living with HIV. Policy statement. Weekly Epidemiol Rec 1999,
74 385-397
Wiktor SZ, Sassan-Morokro M, Grant AD, et al. Efficacy of
trimethoprim-sulphamethoxazole prophylaxis to decrease
morbidity and mortality in HIV-1-infected patients with tuber
culosis in Abidjan, Cote d'Ivoire: a randomised controlled
trial. Lancet 1999, 353 J 469-1475.
19
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INT J TUBSHC LUNG D|S 5(3):36O-363
S2C01 IUATLD
#/ 27.2.
Under-diagnosis of smear-positive pulmonary tuberculosis
m Nairobi, Kenya
M. P. Hawken,*4D. W. Muhindi,4J. M. Chakaya,*S. M. Bhatt,4 L. W. Ng'ang'a,*J. D. H. Porter4
1
Department
Disea6®9 Research, Kenya Medical Research Institute (KEMRI), Nairobi, Kenya;
: Department of Mpdi • US
Tro.pical diseases, London School of Hygiene and Tropical Medicine, London, UK;
Department of Medtane, University of Nairobi, Nairobi, Kenya
____________________________________________ SUMMARY
SETTING:
objective: To determine if under-reading of sputum
smears is a contributing factor in the disproportionate
increase in smear-negative tuberculosis in Nairobi,
Kenya.
METHODOLOGY: Between October 1997 and Novem
ber 1998, patients fulfilling the local programme defini
tion of smear-negative presumed pulmonary tuberculo
sis were enrolled in the study. Two further sputum
specimens were collected for examination in a research
laboratory by fluorescence microscopy.
RESULTS: Of 163 adult subjects enrolled, 55% were
seropositive for the human immunodeficiency virus type
1 (HTV-1). One hundred subjects had had two pre-study
sputum smears assessed before recruitment and pro
duced two further sputum specimens for re-examination
in the research laboratory; of these 19 (19%) were
sputum smear-positive on re-examination and a fur
ther seven (7%) became smear-positive on second
re-examination.
CONCLUSIONS: Of those patients with smear-negative
presumed pulmonary tuberculosis by the local pro
gramme definition, 26% were smear-positive when re
examined carefully with two repeat sputum smears. This
suggests that the high rates of smear-negative tuberculo
sis being seen may in part be due to under-reading. This
is probably as a result of the overwhelming burden of
tuberculosis leading to over rapid and inaccurate spu
tum examination. Retraining of existing technicians and
training of more technicians is likely to reduce under
reading and increase the yield of smear-positive tubercu
losis. This finding also stresses the need for regular qual
ity assurance.
KEY WORDS: smear-negative; tuberculosis; HIV; lowincome countries; Africa
AN INCREASE in the annual number of notifications
of all types of tuberculosis (TB) has been seen in many
low-income countries with high TB and human
immunodeficiency virus (HIV) prevalence, and is
attributed primarily to the predisposing effect of HIV
on TB.1 Associated with this increase in all types of
TB, the rate of increase in smear-negative TB has been
greater than that of smear-positive TB in several lowincome countries.2-3 For example, in Kenya,+'5 the
case notification rate for all types of TB was 52 per
100 000 population in 1987 and had risen to 171/
100 000 in 1998. The annual increase has risen dramat
ically over this period to levels of 10-20% per annum
in the last four years. In 1987 the ratio of smear
negative to smear-positive cases (exclusive of extrapulmonary cases) was 0.6, while in 1998 this ratio
had risen to 0.7.
There are several technical reasons that may give
rise to a false negative sputum examination. These
include inadequate sputum collection procedures,
inadequate storage of sputum specimens and stained
smears, failure to select suitable sputum particles for
smear preparation, inadequate preparation of smears
or staining of slides and inadequate examination of
the smear. In addition to technical laboratory-related
factors, the altered pathology in HIV-associated TB
may also be contributing to the increase of the pro
portion of smear-negative TB, for two reasons. The
mean concentration of bacilli in the sputum of HIVinfected patients is reported to be lower than in
HIV-negative patients,6 with a consequent decrease in
the sensitivity of the sputum smear examination.7'8
This decreased sensitivity of the sputum smear in
HIV-associated TB may be producing a genuine
increase in the number of smear-negative TB cases.
There is also a decreased specificity of the chest radio
graph.9 As sputum culture is not routinely performed
in Kenya, diagnosis of suspects with negative sputum
smears is based on the interpretation of the chest
radiograph. Because of the decreased specificity of the
Kenya.
m
rn
i
i
[I
:
i
4 _£
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rn
Nairobi City Council Chest Clinic, Nairobi,
Correspondence: Dr Mark Hawken, Centre for Respiratory Diseases Research, KEMRI, PO Box 43640, Nairobi, Kenya.
Fax: (+254) 11 314 066. e-mail: icrh@ikenya.com
Article submitted 4 July 2000. Final Version accepted 12 December 2000.
Under-diagnosis of smear-positive pulmonary tuberculosis
chest radiograph in HIV-associated TB, other HIVassociated pathology such as bacterial or fungal pneumonitides may be being labelled as smear-negative TB.
Finally, the sheer increase in the number of patients
requiring screening for TB brought about by HIV
may be leading to more rapid and inadequate smear
examinations, or in some cases technicians may be
limiting examination to one or two of several speci
mens from each patient.
This study was part of a larger study to examine the
validity of the programme definition of smear-negative
presumed pulmonary TB. We report here on the first
part of the study, where patients with a programme
definition of smear-negative presumed pulmonary TB
had two further sputum specimens examined by fluo
rescence microscopy in a research laboratory. Our
objective was to determine if under-reading of sputum
smears is a contributing factor in the disproportionate
increase in smear-negative TB in Nairobi, Kenya.
METHODS
361
smear-negative presumed pulmonary TB, resident in
Nairobi and gave informed consent. Reasons for non
enrolment in the study were: declined to be in the
study (147, 55.1%), declined HIV testing (6, 2.2%),
aged <18 or >50 (45, 16.9%), unable to give
informed consent (6, 2.2%), past history of TB or
current treatment for TB (33,12.4%), non-resident in
Nairobi (17, 6.4%), pregnancy (6, 2.2%), and mil
iary pattern on chest radiograph (7, 2.6%). The age
and sex ratio of those patients who declined was sim
ilar to that of those included in the study.
One hundred and sixty-three subjects (98 male and
65 female) were enrolled in the study; 55% (81/163)
were HIV-1 positive. One hundred and twenty-three
patients produced a further two specimens for exam
ination in our laboratory, 20 produced one repeat spu
tum only, and 20 failed to produce a repeat sputum.
Further analysis is on the 123 patients who produced
two further sputum specimens for re-examination.
The mean age of the subjects was 30.9 years (SD 7.5,
median 30 years, range 18-49). The male to female
ratio was 1.5:1.
Study population
Patients were recruited from the Nairobi City Council
Chest Clinic, the main government out-patient clinic
for the screening of patients with suspected TB.
Patients are referred by government health facilities,
private practitioners and non-governmental health
facilities. Patients were screened by one of two perma
nent clinical officers. The definition of smear-negative
presumed pulmonary TB as defined by the World
Health Organization (WHO) and accepted by the
Kenya National Leprosy and Tuberculosis Programme
is: cough >3 weeks, three sputum smears negative for
acid-fast bacilli (AFB), a pulmonary infiltrate on chest
radiograph and no response to broad spectrum anti
biotics after 7 days.10 Two negative smears only are
accepted in the case of severely ill patients.
Although the WHO definition requires three nega
tive sputum specimens for a diagnosis of presumed
smear-negative pulmonary TB, in practice this policy
was not adhered to by the health workers. In practice,
two or at times one negative smear was accepted by the
health workers as a means to expedite the diagnostic
process to cope with the increase in numbers of TB sus
pects. Original sputum examinations were done by light
microscope examination of Ziehl-Neelsen stained
smears at either government TB laboratories or private
laboratories in Nairobi.
From November 1997 to October 1998, 10162
suspects were screened for TB at the Nairobi City
Council Chest Clinic; 1104 patients were registered
as smear-negative presumed pulmonary TB and 2702
were registered as smear-positive TB. Of the 1104
patients registered as smear-negative presumed pul
monary TB, 430 were screened on 3 days a week by
the study team and enrolled.in the study if they met
the following criteria: age >17 years, registered as
Mycobacteriology
Sputum fluorescence microscopy was performed by
the Centre for Microbiology laboratory, Kenya Med
ical Research Institute (KEMRI), by standard meth
ods.11 Positive smears were classified as 1+ (1-9 AFB/
100 fields), 2+ (10-100 AFB/100 fields and 3+ (1-10
AFB/field in at least 50 fields).12
HIV serology
Serum was tested for HTV antibodies using a rapid
immunoassay (DETECT-HTV, Biochem ImmunoSys
tems Inc, Montreal, Canada) after pre-test counselling
and informed consent. Those testing positive were
confirmed with a second, more specific immunoassay
(Recombigen Biotech, Galway, Ireland).
Ethical permission
Ethical permission was obtained from the KEMRI/
National Ethical Research Committee, Nairobi, and
the Ethics Committee, London School of Hygiene and
Tropical Medicine.
Statistical analysis
Data were recorded on standard forms and then stored
in the data storage package Fox Pro. Data were analy
sed using the SAS statistical package (SAS Institute,
Cary, NC). Standard parametric and non-parametric
statistical methods were used as appropriate.
RESULTS
The results of repeat sputum examination in the
research laboratory are shown in the Table. Of the
123 patients assessed, 100 patients had had two pre
study sputum smears examined and 23 (19 /o) had
362
The International Journal of Tuberculosis and Lung Disease
Table
Patients with a positive repeat sputum smear
1st repeat sputum smear positive
2nd repeat sputum smear positive
Two pre-study
sputum smears
(n=100)
One pre-study
sputum smear
(n=23)
19
7
26(26%)
4
1
5 (22%)
only one sputum specimen examined. In 19 (19%) of
the 100 patients with two negative pre-study smear
results, the first repeat smear examined in the
research laboratory showed a positive result. Seven
more patients showed positive after examination of a
second sputum specimen. In total, 26% of initially
smear-negative patients proved smear-positive in
either one of two subsequent repeat examinations.
The degree of positivity was: 19 X l+,4 X 2+, and
3 X 3 + .The mean number of days was 19.1 (14.3)
and 1 S.3 (17.1) days from the first pre-study smear to
the last study smear, respectively, in those who had a
positive study smear and those who remained consis
tently negative (P = 0.8). Of the 23 patients who had
had only one sputum smear examined before recruit
ment, the first repeat smear showed positive in four
(17%) and the second repeat smear showed positive
in one (5%). Sixty-seven per cent (67%) of the pre
study smears were examined in a government labora
tory and 32% were examined by private laboratories.
There was no significant difference between the pro
portions of positive smears reported by government
or private laboratories (P = 0.47).
DISCUSSION
This study found that a significant number of cases
(26%) registered as smear-negative TB were in fact
smear-positive when re-examined carefully with two
repeat sputum smears. Based on figures from serial
smear examinations, we would have expected to
detect a further 4% of cases from a third smear.13-'5
Despite using the more sensitive technique of fluores
cence microscopy as compared to the Zeihl-Neelsen
method,15"17 we believe 19% on first re-examination
is greatly in excess of what would be expected. Ideally
we should have examined the original smears, but
this was not possible. We cannot exclude the possibil
ity of smear-negative cases becoming positive with
time. However, this explanation is unlikely as there
was no significant difference in the mean time between
the first pre-study smear and rhe last study smear in
those who showed positive and in those who did not.
Likewise, we cannot exclude the possibility of the
high false negative rate being due to delay in speci
mens reaching the laboratory or inappropriate spu
tum collection. However, it is most likely that this dif
ference reflects under-reading of the smear at the time
of sputum microscopy. This under-reading is most
likely a result of the overwhelming burden ofTB sus
pects requiring screening, leading to over rapid and
inaccurate sputum examination.
There are several reasons why ir is important to
identify the smear-positive patient and to begin treat
ment as soon as possible. First, patients with a nega
tive smear may not be diagnosed at all, as the final
diagnosis will be based on the chest radiograph and
the clinician may decide that the patient does not
have TB. Secondly, smear-positive cases misclassified
as smear-negative will go on to have an unnecessary
chest radiograph and a course of broad-spectrum
antibiotics, introducing a delay in starting treatment.
This delay is likely to lead to increased morbidity and
mortality. It also introduces an additional cost for
both the patient and the programme. In a situation
where the TB burden is likely to continue to rise and resources are already limited, programmes cannot
afford this additional expense. In addition, during the
period while start of treatment is delayed, the smear
positive patient will continue to infect more contacts.
Re-training of existing technicians and training of
more technicians is likely to reduce this under-reading
and increase the yield of smear-positive TB. Regular
quality assurance is also necessary to monitor the
quality of a programme’s diagnostic service.
In this study, 19% of suspects ofTB were registered
by medical staff as smear-negative TB after only one
sputum smear examination. Several studies'3"15 sug
gest that there is little increased yield from a third spu
tum smear but that a second smear has a sufficiently
increased yield to be worth doing. Reinforcement of
the importance of adhering to the programme defini
tion criteria is therefore a training priority.
Acknowledgements
We would like to thank the medical and nursing staff of the
Nairobi City Council Chest Clinic and the Department for Inter
national Development, UK, and KEMRI for supporting the study.
We would also like to thank the Director of KEMRI for permis
sion to publish.
References
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dence and mortality during 1990-2000. Bull World Health
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Harries A D, Maher D, Nunn P. An approach to the problems
of diagnosing and treating adult smear-negative pulmonary
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3
Africa. Bull World Health Organ 1998; 76: 651-662.
Graf P. Tuberculosis control in high-prevalence countries. In:
Davis P D O, ed. Clinical Tuberculosis. London: Chapman &
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Hall, 1994: p 337.
National Leprosy & Tuberculosis Programme Annual Report
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National Leprosy & Tuberculosis Programme Annual Report
1998. Nairobi, Kenya: Kenya Ministry of Health, 1998.
Brindle RJ, Nunn P P, Githui W, Allen B \V, Gathua S, Waiyaki P.
Quantitative bacillary response to treatment in HIV-associated
7
pulmonary tuberculosis. Am Rev Respir Dis 1993; 147:958—961.
Elliott A M, Namaambo K, Allen B W, er al. Negative sputum
Under-diagnosis of smear-positive pulmonary tuberculosis
smear results in HfV-positive patients with pulmonary tubercu
losis in Lusaka, Zambia. Tubercle Lung Dis 1993; 74: 191-194.
8
Long R, Scalcini M, Manfreda J, Jean-Baptiste M, Hershfield E.
The impact of HIV on the usefulness of sputum smears for rhe di
Sputum smears for the diagnosis of smear-positive pulmonary
tuberculosis. Lancet 1996; 347: 834-835.
14
agnosis of tuberculosis. Am J Public Health 1991; 81:1326-1328.
9
10
15
sis. London: Chapman & Hall, 1994: pp 241-264.
Treatment of Tuberculosis. Guidelines for National Pro
grammes. 2nd ed. Geneva: WHO, 1997.
11
Collins C, Grange J, Yates M. Organisation and practice in tu
berculosis bacteriology. London, UK: Butterworth, 1985.
12
Rieder H L, Chonde T M, Myking H, et al. National Tubercu
losis Reference Laboratory/National Laboratory Network.
Minimal requirements, role and operation in low-income
countries. Paris: 1UATLD. 1998.
13
Harries A D, Kamenya A, Subramanyam V R, Salanipom F M.
Rieder H L, Arnadottir Th, Tardencilla Gutierrez A A, ct al.
Evaluation of a standardized recording tool for sputum smear
microscopy for acid-fast bacilli under routine conditions in low
Harries A D. The association between HIV and tuberculosis in
the developing world. In: Davis P D O, cd. Clinical Tuberculo
363
income countries. Inr J Tuberc Lung Dis 1997; 1: 339-345.
Ipuge Y A I, Rieder H L, Enarson D A. The yield of acid-fast
bacilli from serial smears in routine microscopy laboratories in
rural Tanzania. Trans Rov Soc Trop Med Hygiene 1996; 90:
258-261.
Ba F, Rieder H L. A comparison of fluorescence microscopy with
the Ziehl-Neelsen technique in the examination of sputum for
acid-fast bacilli. Int J Tuberc Lung Dis 1999; 3: 1101-1105.
17
Githui W, Kirui F.Juma E S, Obwana D O, Mwai J, Kwamanga
16
D. A comparative study on the reliability of fluorescence mi
croscopy and Ziehl-Neelsen method in the diagnosis of pulmo
nary tuberculosis. East Aft Med J 1993; 70: 263-266.
____________________________________________ RESUME
cadre : Centre de pneumologic de la ville de Nairobi,
Kenya.
OBJECTIF: Determiner dans quelle mesure tine insuffi-
sance de lecture des frottis d’expectorations est un facteur qui contribue a 1’augmentation disproportionnee de
la tuberculose a bacilloscopie negative a Nairobi, Kenya.
METHODOLOGIE: Entre octobre 1997 et novembre
1998, on a introduit dans 1’etude les patients repondant
a la definition de presomption de tuberculose pulmonaire a bacilloscopie negative definie par le programme
local. Deux echantillons complementaires d’expectora
tion ont ete recueillis pour examen par microscopic a
fluorescence dans un laboratoirc de recherche.
RESULTATS: On a enrole 163 sujets adultes dont 55%
etaient seropositifs pour le virus de 1’immunodeficience
humaine type 1 (VLH-l).Chcz 100 sujets, 1’on disposait
de deux frottis d’expectoration examines prealablement
a leur admission dans 1’etude. Les patients ont fourni
deux echantillons complementaires d’expectoration
pour un nouvel examen au laboratoire de recherche.
Parmi ceux-ci, 19 (19%) se sont averes avoir une bacil
loscopie positive lors du premier reexamen et sept (7%)
1’eurent lors du deuxieme reexamen.
conclusions : Parmi les patients avec presomption de
tuberculose pulmonaire a bacilloscopie negative selon la
definition du programme local, 26% s’averent positifs a
1’examen direct lors d’un reexamen soigneux compor
tant deux frottis d’expectoration. Ceci suggere que les
taux eleves de tuberculose a bacilloscopie negative actuellement observes peuvent etre dus partiellement a une
deficience de la lecture. Ceci resulte probablemcnt du
fardeau accablant de la tuberculose qui entrame des exa
mens d’expectoration trop rapides et imprecis. La for
mation continue des techniciens cxistants et la formation
d’un plus grand nombre de techniciens sont susccptibles
de reduire cette insuffisancc des lectures et d’augmenter
la recolte des tuberculoses a bacilloscopie positive. Cette
observation souligne egalement la necessite d’un controle de qualite regulier.
__________________________________________R E S U M E N
MARCO DE REFERENCIA: Clinica del T6rax, Ciudad de
Nairobi, Kenia.
OBJETIVO : Determinar si la mala lectura del examen de
esputos es un factor que contribuye al aumento desproporcionado de la tuberculosis con esputo negativo en
Nairobi, Kenia.
metodologIa : Entre octubre de 1997 y noviembre de
1998 se incorporaron a cste estudio los padentes que cl
programa local definia como pacientes tuberculoses con
esputo negativo. Sc analizaron dos muestras de esputos
complementarias por microscopia fluorescente en un
laboratorio de investigacion.
RESULTADOS: Se incorporaron 163 sujetos adultos. El
55% de cllos eran VIH-1 positives. Cien sujetos habian
tenido dos analisis de esputos previos al cstudio y se
efcctuaron otros dos estudios de esputos en el laborato
rio de investigacion. De ellos, 19 (19%) tenian esputos
positives en un primer nuevo examen y siete (7%)
fueron positives en un segundo examen.
CONCLUSIONS : El 26% de los pacientes con presunta
tuberculosis pulmonar con esputo negativo, segun la
definition del programa local, resultaron con esputo
positive al ser re-examinados con dos nuevos analisis de
esputos. Esto sugiere que las tasas elevadas de tubercu
losis con esputo negativo deben ser debidas, en parte, a
una mala lectura. Esto es probablemente el resultado de
un recargo de enfermos tuberculoses que lleva a un exa
men de esputos demasiado rapido e imprecise. Es pro
bable que el mejor entrenamiento de los tecnicos exis
tences y el aporte de otros nuevos pueda reducir los
errores de la lectura y aumentar el numero de tuberculo
sis con esputo positive. Estos hallazgos tambien refuerzan la necesidad de un mejor control de calidad de los
resultados.
20
MATERIAL ON HIV/AIDS
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WHO/CDS/TB/99.269
Original: English
Distr: General
GUIDELINES FOR THE PREVENTION
OF TUBERCULOSIS
ON HEALTH CARE FAOLfflES
ON RESOURCE-LIMITED SETTONGS
Writing committee:
Reuben Granich, Nancy J. Binkin,
William R. Jarvis and Patricia M. Simone
Centers for Disease Control and Prevention
Atlanta, United States of America
Hans L. Rieder
International Union Against Tuberculosis
and Lung Disease
Paris, France
Marcos A. Espinal and Jacob Kumaresan
Communicable Diseases Programme
World Health Organization
Geneva, Switzerland
Medical Mission Institute
Health Services and HW/AI
MTOMWWbutg.Ge™™
World Health Organization
1999
GUIDELINES FOR THE PREVENTON OFTUBERCUUOSIS
IN HFAITH CARE FACILITIES
CONTENTS
Executive Summary
5
Glossary and Abbreviations
7
Introduction
11
1.
13
Pathogenesis and Transmission of TB
1.1
Review of transmission and pathogenesis of Mycobacterium
1.2 Factors affecting the risk of Mycobacterium tuberculosis infection
1.3 Risk of disease following infection.......................
13
13
15
Risk of Nosocomial Transmission of Mycobacterium tuberculosis
to Health Care Workers in Resource-limited Countries
17
tuberculosis
2.
2.1 Documentation of nosocomial risk
17
2.2 Who is at risk?
............................................. '
2.3 Conclusion...................................................................................... 1°
3.
An Introduction to Infection Control Strategies
3.1 Infection control strategies
3.2 Administrative (managerial) controls
3.3 Environmental control measures
3.4 Personal respiratory protection
4.
Administrative Control Measures
4.1 Administrative (managerial) control measures
4.2 District level
4.3 Referral level
4.4 Special areas and topics
5.
Environmental Control Measures
5.1
5.2
5.3
5.4
5.5
5.6
5.7
5.8
5.9
6.
21
21
......................... 21
............ 21
.‘...22
......... 23
23
:.......................... 23
28
32
...................................37
General comments
............................................ 37
Environmental controls
37
Ventilation patterns
37
Methods to maximize natural ventilation
38
Mechanical ventilation
.
Monitoring of ventilation and ventilation systems
41
Special areas
...............................
Ultraviolet germicidal irradition
42
HEPA filtration
..................................
43
Personal Respiratory Protection
6.1 The role of respiratory protection
6.2 The role of surgical masks and respirators
45
45
......................... 45
CONTENTS
7.
Laboratory Safety........................................................................................... 49
7.1 Laboratory safety.............................................................................. 49
7.2 AFB Smear preparation .................................................................. 49
7.3 Preparation of liquid suspensions of Mycobacterium tuberculosis......... 49
7.4 Biosafety Cabinets.......................................................................... 49
7.5 Personal respiratory devices in the laboratory.................................. 50
4
^1
GUIDELINES FOR THE PREVENTION OF TUBERCULOSIS
IN HEALTH CARE FACILITIES IN RESOURCE-LIMITED SETDNGS
EXECUTIVE SUMMARY
Presently, disease caused by Mycobacterium tuberculosis (M. tuberculosis) is the
leading cause of mortality among adults in the world. Populations in resource
limited settings account for nearly 95% of M. tuberculosis infections, with the
global burden due to infection of M. tuberculosis being approximately 1.1 billion
people. In 1998, WHO reported an estimated two million deaths due to
tuberculosis (TB).
The WHO strategy to control TB, Directly Observed Treatment, Short-Course
Chemotherapy (DOTS), can cure nearly all cases ofTB. One of the foundations of
DOTS is the administration of standard short-course chemotherapy (SCC) under
direct observation to TB patients via health care workers (HCWs). Recent studies
performed in developing countries have shown that HCWs caring for infectious
TB patients are at increased risk of M. tuberculosis infection and disease.
HCWs are essential in the fight against TB and they should be protected. Given the
integral nature of HCWs in managing active cases and in preventing further
transmission of M. tuberculosis, the World Health Organization (WHO) presents
these guidelines to provide Member States with limited resources, with
inexpensive and effective control strategies for prevention of M. tuberculosis
transmission in HCWs. These guidelines serve not only to prevent patient-toHCW transmission, but also to prevent patient-to-patient transmission.
These guidelines provide discussion and recommendations for the district and
referral level (thus accounting for the wide variety of health care facilities) based
upon three levels of infection control: administrative, environmental, and personal
respiratory protection. The first priority in infection control is the use of
administrative control measures to prevent the generation of infectious droplet
nuclei, thereby reducing the exposure of the HCWs and patients to M.
tuberculosis. Measures at the referral and district level include development of an
Infection Control Plan, HCW training, patient education, sputum collection, triage
and evaluation of suspect TB patients in outpatient settings, and reduction of
exposure in the laboratory. Additional measures such as isolation of patients with
multidrug-resistant TB (MDR-TB) and other isolation policies apply specifically
to referral level facilities.
The second priority is environmental control methods that are used to reduce the
concentration of droplet nuclei in the air in high-risk areas. Environmental control
methods range from inexpensive methods such as maximising natural ventilation
and mechanical ventilation, to more costly methods such as ultraviolet germicidal
irradiation and HEPA filtration. Environmental control methods should not be
used in absence of, or as a replacement for, administrative control measures.
The third priority is to protect HCWs, via personal respiratory protection, from
inhaling infectious droplets. Surgical masks prevent the spread of microorganisms
from the wearer but do not provide protection to the wearer. Respirators provide
protection to the wearer from inhaling infectious droplet nuclei. Respirators are
expensive and they should be reserved for high-risk referral hospital settings.
5
executive summary
Personal respiratory protection alone will not provide adequate protection for the
HCW from infection of M. tuberculosis.
HCWs are vital resources in the fight against TB. These guidelines provide costeffective interventions that can be directly implemented (or modified) within a
facility at the district or referral level in any resource-limited setting. Efforts
should be made to execute such control strategies to prevent nosocomial
transmission of M. tuberculosis. Such measures serve not only to conserve
resources in terms of direct costs due to treatment of HCWs and indirect costs in
terms of loss of HCWs specialising in the management of TB patients, but also in
reducing the burden due to tuberculosis.
6
21
MATERIAL ON HIV/AIDS
SENT BY
MEDICAL MISSION INSTITUTE
UNIT FOR HEALTH SERVICES AND HIV/AIDS
SALVATORSTR. 22
D-97074 WURZBURG
GERMANY
June 2001
Participating in God’s Salvation
Activities in the World
A Shift in the Understanding of Mission
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The criticism of the missionary practice of
the Western churches in the second half
of the 20"’ century gave the impetus for a
change in the theology of mis
sions. The Protestant churches
developed the Missio Dei ap
proach in the sixties. The different under
standings of this model precipitated the
ecumenical-evangelical controversy. The
“Lausanne Covenant” (1974) represents
the evangelical position while the docu
ment “Mission and Evangelism” repre
sents the ecumenical position. The Sec
ond Vatican Council developed the inter
pretation of missions within the Roman
Catholic Church in the apostolic epistle
“Evangelii nuntiandi” (1975) and in the
encyclical “Redemptoris Missio” (1990).
The changes in the understanding of mis
sions decisively influence the relationship
between Christianity and other religions
and impact inter-religious dialogue and
the notion of remote cultures.
Even though the New Testament lacks a
conception of missions as an organized
missionary work in a foreign country, it
nevertheless provides the essential concep
tions for such work. God sends Jesus and
gives him a mission. Jesus then gathers peo
ple whom he sends out with a mission. He
commands, “Go therefore, make disciples
of all nations” (Mt 28:19) and “You will be
my witnesses” (Acts 1,8; cf. Lk 24,48) and
"As the Father sent me, so am I sending
you" (Jn 20,21).
For Jesus, both the gathering of people
and the sending them out with a mission in
trinsically belong together. The mission of
the disciples and our mission as Christians
extend and continue the mission Jesus ful
filled for his Father. The term “missions”
describes the historically based and con
crete fulfillment of the commission Jesus
asked us to accomplish.2
The term “missions” denotes the organ
ized activities and efforts of spreading the
Christian faith and has only been used since
the 17th century. With this meaning, this
term lacks an exact equivalent in the Greek
language of the New Testament.'
Today, the term “missions” evokes un
easiness in many people, and for some
"missions" has even become an emotive
word. Very often, the term “missions” is
avoided in the names of some study groups,
journals, or institutions. The contemporary
diverse criticism of missions is, however,
principally directed neither against the mis
sionary character of Christianity nor against
Christians themselves but against the form
or paradigm of missions that has character
1 Amstutz. Kirchc 12; Pc.sell, Voraussctzungeii 12-14
2 CL: Biirkle. Missionstheologie 20
1 Introduction
74
DIFAM ■ Study Document No. 3
ized the image of missions during the past
centuries. Specifically, this criticism focuses
on the "practice of Western missions in the
past and in the present.”' Some accuse
Western missions of being a one-way street
that reflects the “white man’s arrogance”'
and “a kind of triumphalist expansion of
the Church.’” These critics identify Christian
missions with the colonialism of the past34567
and accuse such missions of being allied
with colonial expansion and oppression
and of destroying indigenous cultures, so
cial structures, and religions and of creat
ing an alienated church as well.'
Such criticism compel Christians to re
think their practice of missions and to de
velop a new understanding of Christian mis
sions.
Rethinking missions is the subject of the
present essay. Section 2 discusses the ecu
menical and the evangelical analysis of the
understanding of missions. Section 3 de
scribes missions within the Roman-Catholic
Church. Section 4 describes some conse
quences of the understanding of missions.
and section 5 summarizes the development
of the understanding of missions and de
scribes the position of DIFAEM in this dis
cussion.
2 The Understanding of Missions in the
Ecumenical-Evangelical Discussion
2.1 The Initial Situation: Different
Objectives of Missions
At the beginning of the 20"' century, the
various Protestant groups espoused differ
ent objectives of missions:
Anglo-Saxon Protestant missions sought
to establish the Kingdom of God while Ger
man Protestant missions, influenced by
Pietism, primarily aimed at the conversion
and salvation of individuals.
For a significant number of German mis
sionaries, however, the purpose of missions
was to expand the Christian church. They
referred to Gustav Warneck’s definition of
missions: “We understand Christian mission
as the efforts of Christians worldwide to es
tablish and organize the Christian church
among non-Christians.”s
Even though they espoused different mis
sionary objectives, all these various
groups nevertheless understood missions
as “foreign missions,” i.e., the efforts of
Western churches to spread Christianity
in non-Christian countries.
2.2 New Approaches in the
Understanding of Missions
3 Collet, Missionsverstiindnis 26
4 Biirkle, Missionstheologie 29
5 See: Collet, Missionsverstiindnis 27
6 Ibid. 28
7 ibid. 34
2.2.1 From ’Western Missions to
Wor kiwide Missio ns
The modern ecumenical movement,
which was initiated during the Edinburgh
Conference on World Mission in 1910
demonstrated the need to transform the un-
8
See: Hering, Missionsverstiindnis 21
DIFAM ■ Study Document No. 3
75
derstanding of Christian missions. This con
ference assumed the superiority of the
Western Christian world over the rest of the
world and marked the “climax of tri
umphant world mission.'"’
The succeeding conferences of the Inter
national Mission Council (1MR) are also
called World Mission Conferences and took
place in Jerusalem in 1928, in Tambaran
(India) in 1938, and in Whitby in 1947.
These conferences mark the transforma
tion from "western missions” to “world mis
sions." This transformation resulted from
the two world wars, which shook the self
confidence of the west, as well as from the
secularism that increasingly spread across
the Western world. This secularism erased
the distinction between "mission countries”
and "Christian countries,” a distinction that
had been so important to Christian missions
since the 17lh century This transformation
also resulted from the increasing strength of
mission churches that objected to the title
"offspring churches” and demanded more
independence from the "mother churches.”
Participants of the Whitby Conference of the
IMR no longer spoke of “mother churches”
and "offspring churches” but of “partners of
obedience.”"’
At the first plenary assembly of the World
Council of Churches in Amsterdam (1948),
the participants refused to differentiate any
longer between inner and outer missions
because the missionary activity in Christian
countries did not differ in principle from
non-Christian countries." Participants of
9 Was heiKl Mission? 14
10 Cf.: Werner, Mission 62f
11 Cffing, Kirclie 22
76
DIFAM ■ Study Document No. 3
the IMR conference in Willingen in 1952
reached a similar conclusion. This transfor
mation from western missions to world
missions refocused the conversation about
missions around the conception of missions
to the continents. The mission conference
in Mexico City in 1963 articulated this new
conception as the churches’ moving toward
the world in six continents.1’
2.2.2 Missions as Missio Dei
The missions work of the western
churches in the first half of the 20th century
had been severely criticized. The climax of
this criticism was the expulsion of all Chris
tian missionaries from China in 1949These events necessitated a radical change
in the conception of missions. The defining
question was how to justify Christian mis
sions. Participants in the world mission
conference in Willingen in 1952 addressed
the topic "The Missionary Commitment of
the Church." Discussion of this topic pre
cipitated a “copernican change in the
meaning of mission"15 and justified the Mis
sio Dei approach.
The two theologians Karl Barth and Jo
hannes Christiaan Hoekendijk laid the theo
retical foundation for the Missio Dei ap
proach.
For Barth, revelation means self-revela
tion. God is for him the only one who really
acts in the process of revelation. In relation
to missionary work, Barth’s conception of
revelation means that God is the only one
who is active. So, God's nature is at one and
the same lime both revealing and mission
ary. According to this understanding, the
12
13
Hering. Missionsversliindnis S6
Werner, Mission 66
human task is to give testimony, and God
uses humans for God’s purpose in the
process of missionary work."
Hoekendijk was the first secretary on
questions related to evangelization in the
study department of the World Council of
Churches (1949-1952). Al the conference
in Willingen, he warned against missions
strictly in terms of the church and pleaded
for the avoidance of the conception of the
church and the beginning and end of mis
sionary work." According to Hoekendijk.
the aim of all missionary work is not to fill
the world with churches but to confront the
world with the demand for God's king
dom."' The ideas advanced by Barth and
Hoekendijk formed the basic foundation for
the Missio Dei approach to missions.
According to the Missio Dei approach to
missions, God sends Son and Spirit and
thus opens Godself to the world. The legiti
mation for missions flows from the essence
of God. God is the one who sends, and each
human’s sending (sender) participates in
the divine sending. In order to cany out
God’s sending plan, God makes use of peo
ple, especially the church. So, missions is
not simply an activity of the church. Mis
sions is part of the church’s essence and
also characterizes each individual Christian.
According to the Missio Dei approach.
missions is located no longer in soteriology
(missions to save souls) or in ecclesiology
(missions to plant churches) but in the
Trinitarian understanding of God. This theo-
l-i Bosch, Mission 390. Wrogenumn, Mission S9- 10-t
15 Bockiniihl. Missionstheologie 14-16; Wei ner. Mission
63-66
16.Gmndinann, Welt 132
logical understanding of missions means
that missions is part of the essence of God
in that God is a missionary God. This under
standing of missions as part of the Missio
Dei defends Christian missions against
those who question their legitimacy.'
The Missio Dei approach demonstrates
that the church’s essence is missionary'.
Thus, missions cannot be basically ques
tioned. The church “does not take part " in
missions, it “is" missions. The term Missio
Dei was quickly accepted after the confer
ence at Willingen and became a generally ac
cepted part of discussions about missions.
Two different models explaining how God’s
sending could be effected quickly arose.
Georg F. Vicedom advocates the first
model. This model is based on the history
of salvation and holds that God sends Jesus
Christ into the world as the true missionary
and that the church continues Jesus’ mis
sion. This model sharply differentiates the
history of the world from the history of sal
vation. The history of the world is irrele
vant; the only history' that matters is salva
tion history'. /According to this model, God
sent Jesus to rescue the church from a cor
rupt world that is perishing.1*
J. Chr. Hoekenijk advocates the second
model. This model is based on the history
of promise and conceives of the Missio Dei
much more inclusively than the first model.
According to this second model, God’s will
to heal (cf. ITim 2,4) and the Christ event
has already brought healing to all creation
and to all human beings. God sent Christ
l~ Ahrens, ..Mission" 123
IS Ct.: Vicedom, Missio Dei ~0-72
DIFAM ■ Study Document No. 3
77
not only to rescue the church but the entire
world as well. This model abolishes the di
chotomy created by the first model between
the history of the world mid the history of
salvation.19*
Since the 1960s. Protestants have vigor
ously discussed these two models and be
come divided over the issue of which model
is preferable.
The evangelicals are primarily influ
enced by the history of salvation model. For
them, redemption is only possible through
the conversion to Christ, and the world out
side Christianity is unredeemable. The
gospel is the highest authority, and ortho
doxy. the vertical dimension of faith, is
stressed. Missions is first of all a propaga
tion of the gospel and does not aim to
change the structures of the world.21’
The ecumenicals in contrast are prima
rily influenced by the history of promise
model. Because of their conviction that God
has saved the whole world through Christ
and that God desires the healing of the
world within history, they stress the hori
zontal dimension of missions as the human
ization of the world. Neither the evangeli
cals nor the ecumenicals denies that the
vertical and the horizontal dimensions of
missions belong together. However, evan
gelicals admonish the ecumenicals not to
replace eternal salvation with secular wel
fare. Conversely, the ecumenicals warn the
evangelicals not to neglect social ethics by
focusing only on eternal salvation.21
19 Cf.: I riding. Weg 273: liollhaus. Mission 42; Werner,
Mission 67
20.1'rieling. Weg 276f
21 Ibidem 2"6f
78
DIFAM ■ Study Document No. 3
2.3 The WCC Studies about
‘The Missionary Structure
of the Community”
At the third plenary assembly of the World
Council of Churches in New Delhi in 1961,
the IMR was integrated into the WCC. This
organizational shift emphasized what had
become apparent through the approach of
the Missio Dei. In essence, church and
missions belong together since the church
as a whole is missionary.
Lnder the direction of Jochen Margull, a
study project addressing “The Missionary
Structure of the Community” was begun in
New Dehli in 1962 to characterize the mis
sionary character of the church. Margull
was influenced by Hoekendijk and his his
tory of promise model of missions. There
was a wide interest in this study and several
international working groups were estab
lished to facilitate its completion.
In 1965, Margull published the work
book "Mission as Structural Principle.” In
1967, the WCC then publicized the final re
pons of the West European and North
.American work groups in a publication en
titled “Church for Others and Church for
the World Struggling to Find Structures for
Missionary Communities.”
These two publications have several
points in common. First, history and the
world as a whole are under the influence of
the Missio Dei. The direction of movement
is God-—World—Church.22
22
Cf. Kirchc fiir andere 16
Second, the world is considered posi
tively. The church and the world are not
confrontational enemies, but the church is
“part of the world loved by God and to
which he reveals his love.”’'
These studies published by Margull and
the WCC represent a turning point in the
comprehension of Christian missions from
the history of salvation model to the history
of promise model.
Third, conversion in the traditional view
means to turn away from the world, but
now conversion means “to turn to the
world in hope.”'1
2.4 ’Hie Ecumenical-Evangelical
Controversy
Fourth, the aim of missions is not above
all growth of the church in quantitative
terms, but missions is understood in mes
sianic terms as the aim to preach and em
body the liberating acting of God (the
Gospel) in reconstructing the kingdom
while offering “peace and salvation.”2’ The
notions of “shalom” and “humanization” in
the sense of a liberation of true humanity
are introduced into the discussion about
the aim of missions.2'' The notion of shalom
emphasizes that salvation and welfare be
long together. Thus, isolationism and re
treat from the world is excluded from
Christian missions.2’ With this conception of
the aim of the church, these publications
justify Bonhoeffer’s programmatic state
ment that “church is only church when it is
there for the other".2K
Finally, not only pastors and professional
missionaries but also lay people are re
sponsible for Christian missions. "It is in
deed the lay man who is qualified to be the
missionary of our time.”23
29
2*28
24
23 Ibid. 1-i
24 Ibid. 14
2S lloekenilijk in: Mission als Strukturprinzip 33
20 See: Kirche fiir andere 17.89
2" Werner. Mission 97
28 Ibid. 94
29 Kirche fiir andere 28
2.4.1 "Look. 1 Have Been Creating
Everything Anew - The Plenary
Assembly of the World Council
of Churches in Uppsala in 1968
The interpretation of missions as out
lined in the WCC study of "The Missionary
Structure of the Community'” had a decisive
influence on the fourth WCC plenary assem
bly, which was held in Uppsala in 1968 un
der the banner "Look, I Have Been Creating
Everything Anew.”
At this conference, the document "Re
newal of the Mission” caused violent dis
cussions, and the conflict between ecumenicals and evangelicals became apparent
to a broader public for the first time. This
document envisions "an anthropological
change in the interpretation of missions”
due to the confession that Christ is the
"true” or the "new man.” This document
mentions shalom and humanization of soci
ety as missionary aims in accordance with
the structural study.'" Missions should open
itself to the world. The formulation "the
world determines the order of the day" has
become commonplace since Uppsala. The
world is the place where the credibility' and
significance of the Gospel is revealed.51
30
31
Werner, Mission 111
Grundmann, Welt 132
DIFAM ■ Study Document No. 3
79
rIn Uppsala, John Stott, speaker of the
evangelicals within the Church of Eng
land, represented the evangelical posi
tion. He thought that the WCC was so
anxious about physical hunger that it did
not take the spiritual hunger of humanity
into consideration.
After the conference, the missionary the
ologian Peter Beyerhaus formulated the
evangelical criticism on Uppsala in his book
“Humanization - Only Hope in the World?"
He stated, “There has been a fundamental
ecumenic-evangelical confrontation before
and after Uppsala.”52
2.4.2 Missions as Liberation:
The Missionary Conference in
Bangkok in I9“ 3
The 1960s were characterized by opti
mism in technical and scientific progress
and confidence in improving the world situa
tion by human efforts. In the 1970s, this pos
itive view of the world was subdued because
of increasing social conflicts and crises.
This background shaped the world mis
sion conference in Bangkok in 1973. The
theme of this conference was “Salvation of
the World Today.” This conference is im
portant for the understanding of missions
because an “integrative comprehension of
salvation” was developed. This integration
was mainly elaborated in a document enti
tled “Salvation and Justice.”
In this document, the integrative com
prehension of salvation is formulated as fol
lows: “We think that salvation means re-
32
Beyerhaus, lliunanisierung 46ff
E21
DIFAM ■ Study Document No. 3
newal of life-development of true humanity
in the fullness of God (Col. 2,9). It is salva
tion of the soul and of the body, of the indi
ndual and the society, of mankind and the
sighing creature’ (Rom 8,19). • • ■ We must
overcome in our thoughts the splitting be
tween soul and body, man and society and
mankind and creation. That is why we con
sider the fight for economic justice, politi
cal freedom and cultural renewal as ele
ments for a complete liberation of the
world in the name of God.”’5
Whereas humanization had been a leit
motif in previous meetings of the WCC,
salvation as well as missions was at the
center of discussion in Bangkok. The in
tegrative meaning of salvation marked
“the beginning of a social hermeneutics
of salvation” (H. J. Margull) and conse
quently led to a change in the interpreta
tion of missions. The trend was towards
missions as empowerment to liberation.54
This trend related to the Latin American
theology of liberation that was so important
in the Roman Catholic Church at that lime.
Evangelicals seriously criticized this view
of salvation elaborated in Bangkok. The most
important representative of the evangelicals
in Bangkok was Peter Beyerhaus. In reflect
ing of the conference, he stated that the un
derstanding of salvation and missions was not
informed by biblical but by syncretistic and
socio-political notions.55 The difference be
tween evangelicals and ecumenicals had be
come more obvious and seemed to be irrec33
34
35
See: Werner. Mission 200
Werner. Mission 201
Hering, Missionsversiiindnis 123
oncilable for some people. A representative
of the WCC remarked al that time, “You are
either evangelical or a friend of the WCC.”'6
2.5 Ihe Lausanne Covenant (1974)
After the conference in Bangkok, many
evangelical missionary groups kept their
distance from the WCC and its interpreta
tion of missions. The evangelical movement
gained in strength under the influence of
such powerful speakers as Billy Graham,
John Stolt and Donald McGavran.
Following several evangelical congresses,
about three thousand evangelicals from over
150 countries met in Lausanne in 1974 for a
congress about world evangelization. This
congress was initiated by Billy Graham, and
its theme was “Let the Earth Hear His Voice.”
The result of this congress is the “Lausanne
Covenant,” which became the most impor
tant document for the understanding of mis
sions in the evangelical movement.
The “Lausanne Covenant” consists of fif
teen items, but only items five and sLx are
relevant for the present essay.
Item 5 recognizes the social responsibil
ity of Christians and reads, “We ... express
penitence ... for having sometimes re
garded evangelism and social concern as
mutually exclusive. Although reconciliation
with other people is not reconciliation with
God, nor is social action evangelism, nor is
political liberation salvation, nevertheless,
we affirm that evangelism and socio-politi
cal involvement are both part of our Christ
ian duty.' For both are necessary expres
sions of our doctrines of God and num, our
36
37
See: Hering, Missionsverstiliulnis 125
Ibid. 129
love for our neighbour and our obedience
to Jesus Christ.”
Item 6 emphasizes the priority of evange
lization in its formulation, “In the Church’s
mission of sacrificial service evangelism is
primary.” This item also affirms, “World
evangelization requires the whole Church to
take the whole gospel to the whole world.”
Preference for the term “evangelism”
over the term “missions” in the Lausanne
Covenant raises the question of the relation
ship between evangelism and missions.
John Stott answered this question by stating
that the term “mission” is used in a larger
sense and includes evangelism in the sense
of propagation but that evangelism cannot
be identified with propagation.37 Earlier at
Uppsala, Stott already articulated this larger
understanding of missions when he said,
“Mission is equal to propagation plus serv
ice.” Thus, the evangelical movement confirmed that social and political commitment
is a genuine Christian task of evangelism
and recognized missions as a more com
prehensive endeavor than evangelization.
The vertical and horizontal dimensions of
missions belong together even though the
priority is given to evangelization.38
2.6 The Larger Interpretation of
Missions: The Fifth Plenary Assembly of the World Council of
Churches in Nairobi in 1975
The Lausanne Covenant brought evangel
icals and the WCC back together again so
that at the fifth plenary assembly in Nairobi,
evangelicals and ecumenicals were con
versing once again.
38
Cf.: Hering, Missionsverstiindnis 12”-130: Sautter. Heilsgeschicbte 246-250
DIFAiM ■ Study Document No. 3
81
The broader understanding of missions
or the "comprehensive understanding" was
expressed by Bishop Mortimer Arias in a
speech in Nairobi. He stated:
“True evangelism in comprehensive: all
the Gospel for all mankind and man as a
whole. The recipient of evangelism is man
in his wholeness: in his individuality and
sociality, in body and spirit, in time and
timelessness. That is the reason why we
reject -JI attempts of the present and the
past to divide man and attempts to reduce
the Gospel to a single dimension and at
tempts to divide man who is the image of
God. We reject the opinion that evange
lization means only to save souls and is an
exclusive search for a better hereafter for
each individual, because it is not sufficient
in die biblical sense. Neither do we accept
that the Gospel is simply reduced to a pro
gramme of sendee and social develop
ment or to a simple tool of socio-political
concepts (Mt 9,35-38; Lk 4,18-19; Acts
16,31; ITim 4,6-10; 2Tim l,10).”59
John Stott as a representative of the evan
gelicals completely accepted Bishop Arias’
statement.
2.7 Mission from the Perspective of
the Periphery: The Missionary
Conference in Melbourne in 1980
die dialogue between them had fallen
silent."'
In this global context, the contribution of
missions to the creation and maintenance
of dominant power constellations became
increasingly apparent."
These developments of the world scene
had important consequences for the confer
ence in Melbourne, which transformed the
motto of the 1960s “Church for Others"
into an ecclesiological programme. This
conference concluded:
“The Church of Jesus Christ must be a
church of the poor (and not simply a
church for the poor).”42
Missions should happen from the “per
spective of the periphery” - the powerful
mission on die top should be changed to
the mission practice from the bottom/5
In Christological terms, the understand
ing of missions changes in Melbourne from
a theologia gloriae that stresses the image
of an elevated and triumphant Christ to a
dieologia crucis oriented toward the earthlylife and death of Jesus and stressing the
identification of both God and Jesus with
the poor, with those who suffer, and with
those who are condemned and helpless and
powerless."
The missionary' conference in Melbourne
in 1980 adopted the theme "Your Kingdom
In its understanding of missions, the
Come." This conference had to consider
conference in Melbourne naturally referred
several developments on the world scene.
The disparity between industrial nations
and third world nations had increased and39 40 \\ erner. Mission 12S-130
39 See: Hering. Missionsversiaiidnis 5
82
DU'AM • Study Document No. 3
41 Ibid. 129
42 Ibid. 130
4.3 Ibid. 225
44 Ibid. J 311
frequently to the Latin American liberation
theology.
2.8 Mission and Evangelism An Ecumenical Affirmation (1982)
In 1976, one year after the plenary as
sembly of the WCC in Nairobi, the central
committee of the WCC instructed the Com
mission for World Mission and Evangeliza
tion (CWME) to draft a declaration about
missions and evangelism. All member
churches of the WCC were asked to explain
the essence of their missionary work. On the
basis of these statements, the CWME drafted
an ecumenical declaration and presented it
in 1981 to the central committee, which
passed it in 1982. This first official declara
tion of the WCC with regard to the interpre
tation of missions reflects the contributions
of the churches as well as the results of the
assemblies in Nairobi and Melbourne.
of missions is conversion (paragraphs JO13) as well as “the multiplication of local
congregations in every human community”
(paragraph 25). ME stresses “mission in
six continents,” the statement of the mis
sionary conference in- Mexico City', and ex
plains, “Everywhere the churches are in
missionary situations” (paragraph 37).
ME bridges the gap between ecumenicals
and evangelicals. The long period of po
larization had come to an end.
In the 1990s, some member churches of
the WCC expressed their wish to develop
ment a new declaration about missions and
evangelization that would not replace ME but
continue it/3 An initial consultation for a new
declaration of missions gathered in San Sal
vador in 199676 Before the plenary' -assembly
of the WCC occurred in 1998 in Harare, a
The document “Mission and Evangelism” draft for a complementary declaration was
(ME) was broadly accepted by the ecu completed but not presented to till the mem
menical movement. Currently, this docu ber churches and councillors of the WCC be
ment is the most important statement about fore the assembly. This procedure and the
the understanding of missions within the criticism of the draft declaration by some
ecumenical movement.
members were the reasons why this declara
tion did not find acceptance. Hence, ME con
This document refers to Jn 20,21 and Acts tinues to form the basis for the understand
1,8 and justifies the missionary character of ing of missions in the WCC
the church in the sense of the Missio Dei ap
proach by confessing, “The church has as 2.9 The Trinitarian Approach to the
one constitutive mark its being apostolic, its
Missio Dei: Canberra 1991
being sent into the world” (paragraphs 7-8).
Before, and after the WCC plenary assem
For that reason, the proclamation of the bly in Canberra in 1991, the interpretation
Gospel includes solidarity with the poor.
of Missio Dei was discussed again with re
gard to the inter-religious dialogue (see
ME expressively emphasizes both the 4.2). The theme of the Canberra Meeting
vertical and the horizontal dimensions of
the Gospel by declaring, "The spiritual
4S Linn, Vollversnnunlung 187
Gospel and the material Gospel were in Je 4(1 Zu einer llolTnung berufen 60
sus one Gospel” (paragraph 33). The aim 4- Linn, Vollversanunlung 186-189
DIFANI • Study Document No. 3
83.
was "A New Interpretation of the Prerequi
sites of the Missio Dei with Regard to the
Trinitarian Theology.”
In this meeting, the model of the history
of promise was extended beyond the Christological mid ecclesiological understanding of
Missio Dei to a pneumatological understand
ing. Arising from Trinitarian theology, the un
derlying question was formulated before
Canberra as follows: “The question is
whether the Father is the only source of the
spirit or together with his Son. If the latter is
the case, then the flowing of the Spirit is lim
ited to Christian channels and more particu
larly to the church. The rest of humankind
can only experience the Spirit through the
intervention of the church. If the former is
the case, then the starting point from which
the spirit blows freely through the oikoumene is more vast and comprises the
neighbours of the other faiths as well.”48
In the pneumatological understanding of
missions, the missions of the church conse
quently cannot be “God’s only mission.” Mis
sions then is only part of the worldwide mis
sion of the Lord’s Spirit who has the freedom
to influence other religions in movements
and communities outside the church.4950
Great expectations flowed from the WCC
plenary assembly at Canberra. Some people
hoped that concentrating on the theme
“Come, Holy Spirit — Renewing All Creation”
would bring the complete Trinitarian perspec
tive of church and missions into vogue and
open a new chapter of ecumenical history?"
48 Werner. Mission 425
49 Ibid. 426
50 Ibid. 445
84
DIFAM ■ Study Document No. 3
These expectations were not realized,
however, and full realization of the Trinitar
ian theology in the Missio Dei approach is
part of the future work of missions theol
ogy.
2.10 The Declaration of the Lutheran
World Federation: God's Mission
as Common Task - A Contri
bution of the LWF to the Under
standing of Missions (1988)
The LWF's declaration will not be pre
sented in its entirety. Instead, relevant state
ments are excerpted that focus on some sig
nificant aspects of missions theology.
In the first chapter entitled “Theological
Statements to Mission from a Lutheran
Point-of-View,” the Missio Dei is the starting
point. "God is a God of mission. The send
ing of his Son and the Holy Spirit into the
world was the highest expression of the'
Godly missionary effect” (1.1). The decla
ration refers expressly to the Trinity. “The
mission of God is considered in this docu
ment with relation to the term Trinity. ...
The radius of the Godly mission cannot be
understood by man” (1.2). “The mission of
the Church is deduced from God’s own mis
sion. God's own mission is larger than the
mission of the Church” (1.3).
The primary' aim of mission is conver
sion “to convert ail peoples to disciples”
(1.3). In 4.1.6, mission is described holisti
cally, “All the ecclesiastical propagation
must express the wholeness of mission by
unifying word and deed. ... The word with
out deeds corresponding to it falsifies the
word itself. On the other hand, when the
deed is not accompanied by the word, there
is the danger to lapse into pure humanity.
Other parts of the declaration emphasize
the importance of social action. “An inte
gral part of mission ... is to work for free
dom and justice” (1.3). Missions must face
challenges caused by poverty, and the
churches must be “present there where the
poor are” for reasons of credibility”
(3-4.5). Chrislologically, missions is ori
ented towards Jesus Christ, who became
human and died on the cross. Missions has
to propagate the crucified Christ, and there
fore "triumphalism is in contradiction to
Cod s own mission” (4.1.10).
There is significant agreement in the un
derstanding of missions in the Lutheran
World Federation and in the document
Mission and Evangelism of the WCC. An
important difference, however, is that the
Missio Dei approach is interpreted in ME
chrislologically but in the LWF declara
tion theologically with special emphasis
on Trinitarian theology.51
3 The Understanding of Missions in
the Roman Catholic Church
Section 3 of this essay presents the devel
opment of the understanding of missions in
the Roman Catholic Church by discussing
educational missions texts beginning with
the Second Vatican Council from 1962 to
1965 and later.
J. Schmidlin founded the Munster school
and emphasized the soteriological center of
missions. For him, missions means evange
lization with the aim of saving souls and of
converting people.
In contrast, P. Charles of the l.euwen
School placed ecclesiology at the center of
missions. For him, the aim of missions is the
plantatio ecclesiae, which means that the
Church is “implanted” among non-Christians
by establishing the institutions of the Church.
3.2 flic Missions Theology of the
Second Vatican Council
The Second Vatican Council specifically
addressed the missionary activity of the
Church in a decree called "Ad gentes.”
Other decrees, however, also contain im
portant statements about the understanding
of missions, especially the dogmatic consti
tution "Luman gentium.” In these docu
ments, the ecclesiology of the Church forms
the basis for the understanding of missions.
The church is no longer exclusively con
sidered as a hierarchical institution but
as a sacramental reality. “The Church, in
Christ, is in the nature of sacrament - a
sign and instrument, that is, of commun
ion with God and of unity among all
men” (LG 1).
At the beginning of the 20th century, two
different tendencies were present in the Ro
man Catholic understanding of missions.
The sacramentality of the Church is in
terpreted in two ways. On the one hand,
Church is a sign for the relationship to god
and the unity of humankind. On the other
hand, Church is an instrument that has a re
sponsibility toward the world.52
SI Ct.: Uolthaus, Mission -i2f
52 Rahner, Konzilskompendiuni 106
3.1 Tendencies in Missions Theology
before the Second Vatican Council
DIFAM ■ Study Document No. 3
85
The missionary character of the Church
is a constitutive component of the church as
a sacramental reality. The missionaiy char
acter of the Church is explicitly exposed in
the mission decree of the Second Vatican
Council. “The pilgrim Church is missionary
by her very nature, since it is from the mis
sion of the Son and the mission of the Holy
Spirit that she draws her origin, in accor
dance with the decree of God the Father"
(AG 2). The basis of the Church’s mission
aiy character is Trinitarian. Before the
Council, the Church was the sender, but af
ter it the Church is the one sent from God
into the world.53
55 The parallels to the Missio
54
Dei approach are apparent.
Since the Council describes the Church
as “God’s people” (LG 9-17), every bap
tized person participates in the mission of
the Church. Each Christian is a missionary'
and has to fulfill her or his task of being
sent (cf. LG 17; AG 35.36).54
Important for the Council’s understanding
of missions are also the elevation of the
churches in each country and the teaching of
the bishops’ collegiality. The Church consists
of different national churches (cf. LG 23),
and the bishops are authorized to be the
leaders of their national churches. The West
ern or “mother Church” is no longer the
head of the “offspring churches.” On the con
trary' the churches form a brotherly commu
nity. Karl Rahner says, “The Second Vatican
Council and its first trial to find itself may be
considered as the first official self-achieve
ment of the Church as world church.”55
53 Glazik, Mission 157
54 L'fling, Kirche, 32; cf. also J.G 17; AG 35f
55 Lffing, Kirche 2(>f
86
DIFAM ■ Study Document No. 3
This understanding breaks open ecclesi
astical centralism but leaves unclear how
the primacy of the Papacy can be combined
with this plurality of the Church.5”
According to the Council, the task of
missions are "Preaching the Gospel and
planting the Church among peoples or
groups who do not yet believe in Christ"
(AG 6). By stating the aim of missions this
way, the Council tries to synthesize the two
tendencies in missions theologv
before this
O.'
decisive Council occurred.
The targets of missions are “peoples and
communities," and thus missionaiy activity
is described geographically, sociologically,
and anthropologically. 5' This view corre
sponds to the comprehension of “mission
in six continents”, espoused by the mission
aiy conference in Mexico City in 1963-
Rahner speaks in this context of a “planetarian diaspora” and means that there are
no longer so-called “Christian countries.”5S
A further new' understanding of missions
marks the conciliar confession to God’s gen
eral salvation that encompasses the non
Christian world. “The Savior wills all men to
be saved (cf. 1 Tim 22,4). Those who,
through no fault of their own, do not know'
the Gospel of Christ or his Church, but who
nevertheless seek God with a sincere heart,
and, moved by grace, tiy in their actions to
do his will as they know' it through the dic
tates of their conscience - those loo may
achieve eternal salvation” (LG 16; cf. AG 7).
God’s influence is also outside the church,
56 Cf. Collet. Missionverstiindnis 116f
57 i ffing, Kirche 33f
5X Collet, Missionsverstiindnis 63 (note 27)
and God offers salvation to all humans. This
understanding is very similar to the salvation
history model of the Missio Dei approach.
3.3 The Development of the Roman
Catholic Understanding of Mission
after the Second Vatican Council
3.3.1 The Apostolic Letter
’Esangelii nuntiandi” ( I9”5)
The understanding of missions is contin
ued in Pope Paul Vi’s apostolic letter “Evangelii nuntiandi” (EN).
According to EN, “evangelizing” is “the
essential mission of the Church” (EN 14).
The Church evangelizes in the succession of
Jesus, who was sent by the Lord (EN 6,7).
Here missions is not grounded in Trinitar
ian theology as at the Council (/\G 2) but in
the historical Jesus.
EN defines “evangelizing” as “bringing the
Good News into all the strata of humanity,
and through its influence transforming
humanity from within and making it new”
(EN 18). Thus, EN defines “evangelizing”
in terms “of proclaiming Christ to those
who do not know him” (EN 17).
The aim of evangelization is qualitatively
an inner change and quantitatively "preach
ing the gospel in ever wider geographical
areas or to greater numbers of people” (EN
19). At several places (EN 8,9,34) EN men
tions the propagation of God's kingdom
with regard to the continents and clearly
stresses liberation theology. The targets for
evangelization are not only non-Christians
but also “baptized people, who no not prac
tice" (EN 21). So EN envisions a global situ
ation of missions.
Significantly, EN addresses the relationship
between propagation and social action. This
question can be seen in connection with the
development of the ecumenical movement.
EN refers to social action by using terms such
as “development” and “liberation.” EN 31
reads, “Between evangelization and human
advancement—development and libera
tion—there are in fact profound links.” Both
aspects should be taken into account. On the
one hand, the mission of the Church may not
be limited by an anthropocentric refusal to
consider the religious dimension of the hu
man being, his or her “openness to the ab
solute, even the divine Absolute” (EN 33) or
by replacing the “proclamation of the king
dom by the proclamation of forms of human
liberation” (EN 34). In this context, EN
speaks of the “primacy of the spiritual voca
tion” (EN 34). On the other hand, mission
should not be reduced “in a religious way”
since “it must envisage the whole man, in all
his aspects” (EN 33). "The Church is ... not
willing to restrict her mission only to the reli
gious field and dissociate herself from man’s
temporal problems" (EN 34).
So, EN develops a broader understand
ing of missions and searches for a balance
between the vertical and the horizontal di
mensions of missions.
3.3.2 The Encyclical Letter
"Redemptoris Missio" (1990)
Twenty-five years after the end of the Sec
ond Vatican Council and fifteen years after
the publication of “Evangelii nuntiandi,”
Pope John Paul II published the encyclical
letter “Redemptoris missio" (RM). Its
theme is the continued validity of missions.
59
Cf. to liN: Collet, Missionsverstiiiulnis 124-132; Muller,
Missionstheologie 3~f
DIFAM ■ Study Document No. 3
87
Admitting that “missionary activity specifi
cally directed 'to the nations' (ad gentes) ap
pears to be waning,” the encyclical letter em
phasizes the “urgency of missionary evange
lization" (RM 2). Missionary activity should
“push forward to new frontiers” (RM 30).
RM describes the following tendencies in the
Roman Catholic understanding of missions.
RM generally has a positive view of mis
sions and recognizes the shift from western
missions to world missions. Nevertheless, it
reintroduces some old inequities with state
ments such as the following: “To say that
the whole Church is missionary does not
exclude the existence of a specific mission
ad gentes, just as saying that all Catholics
must be missionaries not only does not ex
clude, but actually requires that there be
persons who have a specific vocation to be
'life-long missionaries ad gentes'” (RM 34).
This statement alludes to the old geographic
view of missions and assigns a position of
prominence to the Western Church that was
avoided in the Second Vatican Council.6"
According to RM, the goal of missions is
both to convert the lost and “to found
Christian communities and develop chur
ches to their full maturity” (RM 48). Faith
in Christ is understood as “directed to
Man's Freedom” (RM 6), but it is empha
sized that “there is one mediator between
God and men, the man Jesus Christ” (RM
5) and “that the Church is the only way of
salvation and that she alone possesses the
fullness of the means of salvation” (RM
55). Such statements make the inter-reli
gious dialogue difficult.60
61
60 Cf.: Collet. ..Rcdeinpioris Missio" J 6.3: Waldenfels.
Ekklesiologie IS If
61 Cf. Evers. Dialog
88
DIFAM ■ Study Document No. 3
RM also comments on the relationship
between evangelization and social obliga
tions. it attaches special importance to the
danger of reducing salvation and missions to
the social dimension alone. “There are ideas
about salvation and mission which can be
called ’anthropocentric’ in the reductive
sense of the word, inasmuch as they are fo
cussed on man's earthly needs. In this view;
the kingdom tends to become something
completely human and secularized; what
counts are programs and struggles for a liberation which is socio-economic, political
and even cultural, but within a horizon that is
closed to the transcendent. ... The kingdom
of God. however, 'is not of this w'orld ... is
not from the world.” (Jn 18,36; RM 17).
By rejecting the limitation of salvation to the
horizontal dimension, RM distances itself
from the Latin American liberation theology.
At the same time, RM stresses that “action
on behalf of integral development and liber
ation from all forms of oppression is most
urgently needed” (RM 58). Thus, it refuses
to limit salvation to the vertical dimension.62
RM narrows somewhat the understanding
of missions as a worldwide mission and re
treats from the broad understanding of mis
sions that envisions eveiy land and people
in need of missionary activity.63
3.4 Karl Rahner’s Theory of the “An
onymous Christ” and Its Effect on
the Understanding of Missions
Karl Rahner's theory of the anonymous
Christ is of great importance for the under
standing of missions in the Roman Catholic
Church. His theoiy has two presuppositions.
62
63
Cf. Collet, ..Redemptoris Missio" 171-174
Ibid. I74f
First, Rahner favors an anthropology that
sees human beings as a unity of spirit and
matter. He supposes that a human in his or
her spirituality has always been related to
God, the absolute being. Rahner states,
“Man is spirit, that means he lives his life in
a permanent stretching to the absolute, in
an openness for God.” “He is man simply
because of the fact that he has always been
on the way to God, whether he knows it ex
plicitly or not, whether he wants it or not,
because he is always the unending openness
of the finiteness for God.”'" The human ori
entation to God is always there regardless if
a human realizes it or not. Humans always
have to do with God when they meet their
own fellow humans and in their encounter
with their surroundings in general.
Second, Rahner stresses the general sal
vation will of God as a second presupposi
tion for his theory (cf. ITim 2,4). God de
sires healing for all people and offers it to
everyone.
The theory of the anonymous Christ
holds that a person who has never been
confronted with the Christian verbal revela
tion is able to believe. Such a person is not
a Christian in an explicit and confessing
manner but in an implicit anonymous way.
According to Rahner, persons are believers
when they affirm themselves, when they fol
low their conscience, when they practice
faith, hope and love.'”
is confronted with the Christian message.
Being an anonymous and confessing Christ
ian cannot be considered as two equivalent
forms of being a Christian. Being an anony
mous Christian leads to becoming a con
fessing Christian. According to Rahner’s
theory, non-Christian religions can be legiti
mate ways of salvation for humans.
Several critics of Rahner’s theory stress
that it undermines the missionary efforts of
the Church. Why should a person become
an explicit Christian when that person can
find God’s blessing as an anonymous Christian?66 These criticisms assume that Rahner
considers Christianity as well as non-Christ
ian religions as equivalent ways of salvation.
He does not, however, and holds that Chris
tian missions has an important task since it
aims at the transformation of an implicit
Christian into an explicit Christian. Rahner
thinks his theoiy provides a basis for mis
sions. Missions can only be effective when
there is a sensibility for the Christian mes
sage, and this sensibility is an inner orienta
tion to God. Thus, Rahner’s theoiy of the
anonymous Christ is important for under
standing Christian missions.67
4 Materialization
4.1 The Relationship between Christia
nity and the Non-Christian Religions
It is important to know that an anony
mous Christian is exhorted to become ex
plicitly and consciously a Christian when he
Everyone who attempts to understand
missions encounters the question of how to
define the relationship between Christianity
and other religions. Three different models
explaining the possible relationships have
6-1 Rahner, llbrer 86
65 Cf.: Bernhardt. Absolutheilsansprnch I "h-18"; Jager,
Ueilsmiiglichkeit 161-217: Sievernich. Akttr.ditat 196
66 Cf. Bernhardt, Absolutheitsanspruch 195
6" Sievernich, Aktualitat 196; cf.: Rahner, Schrilien VI485488
DIFAM ■ Study Document No. 3
89
way, a new unity and community is created.
not only within the culture in question but
also in the church as a whole."'1"
Evangelization or missions always hap
pens - and this is what Crollius' definition
clarifies - within cultural ideology and is a
mutual event. Leonardo Boff says, “The
Gospel shows itself in the guise of a particu
lar culture.'”1' The Christian faith finds its
expression in the culture of a people with
out opening itself to the cultural forms of
thinking and living; enculturation occurs in
the "tension of proximity and distance of
the Gospel to the cultures.'”12
These different understandings of encul
turation are important for the Roman
Catholic as well as the Protestant theology' of
missions at the beginning of the third millenium. The starting point for the apostolic
letter “Evangelii nuntiandi" and the encycli
cal "Redemptoris Missio" is enculturation.
For example, RM 54 reads,
“Through enculturation the Church
makes the Gospel incarnate in different
cultures and at the same time introduces
peoples, together with their cultures, into
her own comtnunity. She transmits to
them her own values, at the same time
taking the good elements that already ex
ist in them and renewing them from
within.”
repeatedly?' This theme was the main topic
on the agenda of the 11 th World Mission
Conference in Salvador da Bahia in 1996.
The theme of this conference was “Destined
for One Hope - The Gospel in Different Cul
tures." The message sounding from this
conference was “We sincerely hope that this
last mission conference in this century' has
made plain that the Gospel must remain it
self if it wants to bear fruit and al the same
time it must be part of a culture or rooted
in it."™
5 Summary
In his book "Transforming Mission.
Paradigm Shifts in Theology of Mission”,
David Bosch presents the shift in the under
standing of missions in the history of theol
ogy. He speaks of a "post-modern para
digm” of the theology of missions. The
present essay has addressed this paradig
matic change that has occurred and contin
ues to occur in the understanding of mis
sions both in the Protestant and Roman
Catholic churches. This section of this essay
summarizes the points investigated and
clarifies the areas of conflict in which dis
cussions of missions take place?’
1. Christian missions is no longer under
With regard to ecumenical missionary'
theology, the relationship between the
Gospel and culture have been talked about
stood ecclesiocentrically as an activity starting
from the churches to save souls and found
churches. Missions is anchored in the doc
trine of trinity and is a characteristic of God,
who is a sending God. God sends the Son and
the Holy Spirit, and missions is founded in
the Missio Dei. All human mission is part of
80 Lffi ng, Kirche 235
8.1 Keliprax 14
82 Ibid.
83 Ct.: Werner. Mission 265-381
84 Zu einer lloffnung berufen 115
85 (if.: Bosch, Mission 349-351; Gensichen, Akzente 11.3;
Werner, Mission 44-47
92
DIPAM ■ Study Document No. 3
the Missio Dei, and every Christian has a mis
sionary task. The Missio Dei approach was
and is understood in various ways.
T\vo models may be distinguished:
° The history of salvation model af
firms that God sends Jesus and the sending
of Jesus continues in the sending of the
church. The histories of the world and of
salvation are two different and separate
things. Salvation is given to the unredeemed
world through the church.
° The history of promise model inter
prets the Missio Dei approach in a broader
sense. It affirms that God has saved the
whole world through Christ and that God’s
mission exceeds the borders of the visible
church. This model lays the foundation for a
Christian’s being directed towards the world.
An extension of this model to Trinitarian the
ology leads to a pneumatological under
standing of missions. God’s Spirit starts di
rectly from the Father and not only through
the mediation of the Son. That is why God’s
Spirit also has an effect not only inside the
church but also outside the church as well.
The extent of the influence of God’s spirit and
as such of God’s mission is larger than the
extent of the Christian church.
A tension between the two understand
ings of the Missio Dei caused the ecumeni
cal-evangelical controversy with regard
to the understanding of missions. This con
troversy is fueled by the tension between
the vertical and horizontal dimensions
of missions that distinguishes between
word and deed, between the preaching of
the Gospel and Christian social service, be
tween testimony and service, between ortho
doxy and orthopraxy, and between church
and world. Both the vertical and horizontal
dimensions are essential for an integrative,
holistic understanding of missions, but the
controversy over and the discussions about
these two dimensions has by no means
come to an end.
Klaus Schaefer relates evangelization and
church social service when he says: “When
we distinguish between evangelization and
church social service, these two dimensions
of the mission of the church in the world may
not be considered separately. Missionary
preaching is - to quote David J. Bosch - the
’heart’ of mission, but evangelization and
church social service are related to one an
other and will continue to be related. They
compliment one another; they correct one
another; they are a credible testimony of the
church being part of God’s mission by means
of this unsolvable interplay; and which is di
rected to the salvation of the whole creation.
... The most important tiling about this un
solvable interplay is that the credibility of the
church’s acting is at stake.”86
2. In the seventies, solidarity with the
poor became very important. In the eight
ies, the poor are no longer considered as
recipients or objects of missions but the
true bearers of missions as subjects. This
change corresponds to the shift in the para
digm of missions from the perspective
of missions in the center to missions
in the periphery.
3. Recognizing the tension between mis
sions and culture, Christians have finally ac
cepted the cultural identity of non-Westem
peoples and churches. Missions is no
longer a “cultural mission” but an encul-
86
Schiifer, Mission 271
DIFAM ■ Study Document No. 3
93
turation of the Gospel. This development
results in a “cultural polycentral structure
of the world church."
ones own identity becomes comprehensi
ble in the listening and speaking with the
other. The aim of dialogue is finding the
truth by a reciprocal process of learning.
4. The issue of the relationship be
tween Christianity and other religions
is controversial. Three basic models illus
trate this controversy:
• The model of exclusivism illustrates
that "among all religions only Christianity
possesses the perception of God or His rev
elation in the sense of salvation.”
• The model of inclusivism holds that
"among till religions Christianity does not
possess the only perception of God or His
revelation in the sense of healing. But the
difference is that Christianity possesses it in
a form superior to all other religions.”
• The model of pluralism communicates
that "among till religions, Christianity does
not exclusively possess the perception of God
and His revelation in the sense of salvation.
The understanding of God and His revelation
are. even in their relatively highest form, pan
of other religions besides Christianity.”
5. Three models help explain the various
possibilities of the relationship between
missions and the dialogue of Christianity
with other religions:
• The model of polarity recognizes no
relationship between Christian missions
and dialogue with other religions.
• The model of subordination presents
dialogue merely as an instrument to attain
the conversion of those of other faiths.
• The model of complementarity' pres
ents dialogue with other religions as an im
portant aspect of missions. According to
this model, missions and dialogue influence
and correct one another. In the dialogue,
DIFAM ■ Study Document No. 3
6 Conclusion
This essay has briefly described the shift
in the understanding of missions in the 20,h
century. It has attempted to explore the var
ious and complex issues involved in under
standing missions. In responding to these
issues, Christians should realize they are
part of the Missio Dei, of God’s own mis
sion.
Christian missions means participating in
God’s salvation activities in the world.
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DIFAM • Study Document No. 3
97
MATERIAL ON HIV/AIDS
SENT BY
MEDICAL MISSION INSTITUTE
UNIT FOR HEALTH SERVICES AND HIV/AIDS
SALVATORSTR. 22
D-97074 WURZBURG
GERMANY
June 2001
Pcrgamon
PH: 50277-9536(98)00075-6
Soc. Sci. Med. Vol. 47, No. 3. pp. 381-394, 1998
(q 1998 Elsevier Science Ltd. All rights reserved
q27W Great, Britain
WHAT DOES QUALITY MEAN TO LAY PEOPLE?
COMMUNITY PERCEPTIONS OF PRIMARY HEALTH
CARE SERVICES IN GUINEA
SLIM HADDAD,1* PIERRE FOURNIER,' NIMA MACHOUF1 and
FASSINET YATARA2
'Universite de Montreal, Groupe de Recherche Interdisciplinaire en Sante, Pavilion Marguerite
d’Youville, C.P. 6128, Succursale A, Montreal, Que., Canada H3C 3J7 and 'UNICEF, Conakry Local
Office, Conakry, Republic of Guinea
Abstract—The success of strategies to revitalize primary health care services such as those advocated by
the Bamako Initiative requires a response adapted to the expectations of the population, especially in
terms of quality. The goal of this study, conducted in two rural communities in Guinea, was to identify,
characterize, and classify the criteria that the public uses to judge the quality of primary health care
(PHC) services. This study included 180 participants in 21 focus group discussions. Forty-four main cri
teria were identified. These criteria vary depending on the respondents’ sex and age, and their ability to
access primary health care services. Some of the criteria correspond to those used by health care provi
ders, while others do not. The general public places considerable emphasis on outcomes, but little
emphasis on preventive services. The users appear very sensitive to aspects of the interpersonal relations
they have with professionals and the technical quality of the care provided. A taxonomy of perceived
quality is developed, which includes the following five categories: (1) technical competence of the health
care personnel; (2) interpersonal relations between the patients and care providers; (3) availability and
adequacy of resources and services; (4) accessibility and (5) effectiveness of care. It is a major challenge
to refocus on quality in the development of health care services. This will require considerable changes
for which training may be an effective, but certainly not a sufficient means. Promoting professionalism
and changing the relations between public authorities and the general public are the only means of
improving the quality of health care services as well as user perception. © 1998 Elsevier Science Ltd.
All rights reserved
Key words—quality of health services, community perceptions, primary health care services, focus
group discussions, developing countries, Bamako Initiative
INTRODUCTION
slowed progress in the field (in particular in the
area of family planning).
Nevertheless, interest in .the quality of health care
services in developing countries appears to be on
the rise. There has been an increase in the number
of actions aimed at maintaining acceptable stan
dards of quality (Thomason and Edwards, 1991)
and of studies concerning the assurance and evalu
ation of quality. This trend undoubtedly translates
the concerns raised by the implementation of strat
egies to improve the continuity and effectiveness of
PHC services. It is also the consequence of the
repeated observation of strong links between the
quality of services and use of these services. In fact,
perceived quality is one of the principal determining
factors of utilization (Mwabu, 1986; Sauerborn et
al., 1989; Hotchkiss, 1993; Gilson et al., 1994;
Haddad and Fournier, 1995), and non-utilization of
services — a major issue in several developing
countries — is often traced to a perceived lack of
quality (Abu-Zaid and Dann, 1985; Mwabu, 1986;
Until recently, little attention had been paid to the
quality of primary health care services (PHC) in
developing countries (Sauerborn et al., 1989;
Forsberg et al., 1992; Haddad and Fournier, 1995).
This lack of interest can be explained by the pri
ority that has long been placed on improving avail
ability of services in contexts where there have been
enormous needs that have rarely been met. It can
also be explained by the attitude of authorities re
sponsible for health care who have felt that evaluat
ing and ensuring quality were luxuries reserved for
developed countries (Thomason and Edwards,
1991) since PHC services, which do not rely heavily
on advanced technologies, had less need for quality
standards (Roemer and Montoya-Aguilar, 1989).
Some (Bruce, 1990) also suggest that “confusion
surrounding the meanings of the term quality" have
•Author for correspondence.
381
382
Slim Haddad et al.
Berman et al., 1987; Vogel, 1988; Waddington and
Enyimayew, 1989).
Most often, evaluation studies deal with quality
according to one of the following two perspectives:
the “technocratic” perspective of health care pro
fessionals, or less frequently, that of the commu
nities (Wouters, 1991). In both cases, the notion of
quality carries a favorable connotation, conforming
to the common meaning of the term and evoking
a set of virtuous or worthy attributes. Studies
based on the technocratic perspective are relatively
frequent and convey the representations of health
care professionals*. Most often, and in a more or
less explicit fashion, they rely on a normative defi
nition of quality: services are judged to be of good
quality as soon as they reach defined standards
(Roemer and Montoya-Aguilar, 1989; Thomason
and Edwards, 1991; Forsberg et al., 1992). In the
second perspective, the recipients of PHC services
play a central role in the definition and assessment
of quality. For example, Jain et al. (1992) con
siders that “A program of high quality is one that
is client oriented and aims to help individuals
achieve their...intentions or goals”. Donabedian
(1980) believes that user satisfaction “can be
regarded as the patient’s judgement on the quality
and the goodness of care”, while other authors
consider that quality requires an appropriate re
sponse to consumers’ expectations (Van Campen et
al., 1995).
The evaluation of the quality perceived by the
public is justified in the desire to meet users' expec
tations, thereby contributing to “the process of
democratization of health care services”. (Calnan,
1988b). It also draws legitimacy in practical con
siderations since the viability of the health resources
appears to be closely linked to the perceptions that
communities have of the quality of the services they
offer.
There have been relatively few works published
with the specific objective of identifying the criteria
that communities apply to judge primary health
care services in developing countries. In a rapid
appraisal of urban consumer preferences about
health services in Fiji, criteria related to the art of
care emerged as the foremost issue, followed by
availability of drugs and personnel, physical en
vironment, technical quality, accessibility and in
patient food (Attah and Plange, 1993). In Zaire, a
study on the qualities that should be found among
health workers showed that women valued interper
sonal qualities (respect, patience, courtesy, atten•For example, (Pust and Burell, 1986; WHO, 1989;
Engelkes, 1990; Gamer et al., 1990; Lewis et al., 1991;
Nicholas et al., 1991; Peters and Becker, 1991;
Thomason and Edwards, 1991; Bryce et al., 1992;
Kaufman et al., 1992; Askew et al., 1993; Kipp et al.,
1994; Satia et al., 1994; World Health Organization,
1990).
tiveness, friendliness and straightforwardness)
technical qualities and to a lesser extent, integrity
(Haddad and Fournier, 1995). When they were
asked about the two best qualities a nurse should
have, the majority mentioned a relational com
ponent first and a technical component second
Thus, women's judgement on the quality of care
may be largely based on their perception of the
health providers’ conduct. Studies conducted in var
ious settings and with various population groups
support this observation (Calnan, 1988a; Bruce,
1990; Lohr et al., 1991; Vera, 1993).
Additional information on women’s views of the
quality of PHC services are reported in a recent
Tanzanian study in which 250 women were invited
to discuss their previous experiences with public,
private and traditional providers (Atkinson and
Ngenda, 1996). From the comments on public ser
vices, the authors deduced a classification of per
ceived quality involving six dimensions: (1) conduct
of health staff; (2) technical care, including out
come; (3) convenience of the health facility; (4) or
ganization of the health care; (5) drugs
(prescription, availability) and (6) structural aspects,
including staffing.
These studies provide interesting information on
the criteria that communities may use to judge the
quality of PHC services. However, additional stu
dies that are specifically designed to address this
question would add to our knowledge of these per
ceptions. Since communities are not homogenous in
their definition of quality and most of the previous
studies in developing countries focus on specific,
somewhat non-representative groups, these studies
do not necessarily provide an exhaustive view of the
perceptions which can prevail in a community. As
research conducted in the West suggests, perceived
quality may vary among members of different
socio-economic groups (Calnan, 1988a; Roberge et
al., 1996) and may be influenced by the social, or
ganizational and technological context in which the
health services are delivered (Lohr and Thier, 1988;
Palmer, 1991; Ellis and Whittington, 1993). We also
lack a detailed taxonomy of perceived quality which
could act as a framework for the construction of
tools to measure this component of care in confor
mity with the dominant representations of the
users.
This study has been designed to address these
needs. Its objective is to take a broad and systema
tic approach to identifying the perceptions of qual
ity of PHC services in an African rural context and
to develop a reference framework for perceived
quality. As part of an operational research program
in Guinea, this is the first in a series of surveys
which have been developed to better document lay
people’s perceptions of the quality of PHC services
and the determinants of their utilization.
Community perceptions of primary health care
383
Table 1. Number of FG according to composition and location (prcscncc/absence of PHC services in the village)
Women
Men
PHC available
PHC not available
PHC available
PHC not available
2
1
3
2
4
6
3
3
6
1
5
6
Younger adults
Older adults
Sub-total
Total by sex
Grand total
9
BACKGROUND
There has been a recent large-scale reorganization
of the PHC system in Guinea. The PEV/SSP/ME*
program, inspired by the Bamako Initiative and
supported by UNICEF, allowed for improvement
of close to 300 health care centers (Levy-Bruhl et
al., 1994; Unicef, 1994). The majority of these cen
ters have been renovated and their staff was trained.
They are administered by management committees,
they offer curative and preventive services, and they
are funded through a cost recovery system ensuring
availability of essential drugs.
The study was conducted in two sub-prefectures
in Lower Guinea located approximately one and a
half hours from the capital, Conakry. Their county
seats, Wonkifong and Maferinyah, are about twenty
kilometers from one another. The majority of the
population is Susu; the habitat is rural or semiurban and agriculture provides most of the local
resources (cassava and some cash crops such as
pineapple). A rural health center is located in each
county seat. In some villages, health posts assume
some of the caseload for these centers.
METHODS
The approach chosen is suited to the exploratory
and resolutely empirical aspect of this study. It was
carried out without prior modelization or taxonomy
of the notion of quality and in so far as possible, it
tried not to let the preconceptions of the team
members color the respondents’ viewpoints.
The method uses focus group discussions
(FGDs), an approach based on open discussion on
pre-identified themes, with a variable number of
participants gathered around a moderator. Unlike
some techniques, that of FGDs places more empha
sis on the interaction between the participants and
the emergence of good group dynamics than on the
exchanges between the participants and the group
moderators (Morgan, 1988; Simard, 1989). This is
the preferred method when the approach is explora
tory, whether the goal is to document opinions or
points of view, and the researchers want to avoid a
situation where the content of the messages
‘Programme elargi de vaccination / Soins de sante primaire / Medicaments Essentiels — Expanded program
of Immunization / Primary health care/ Essential
drugs.
12
21
expressed is influenced by their own preconceptions
(Morgan, 1988).
The constitution of the groups, their execution,
as well as the gathering and handling of the infor
mation were carefully prepared taking into account
the specific nature of the local cultural features and
the themes dealt with (especially their particularly
abstract character). Special attention was paid to
the development of a technique which calls for the
moderators to participate in a discreet, non-direc
tive manner and to maintain as neutral an attitude
as possible. They were recruited from outside of the
health care system, on the basis of their experience.
Most of them were sociologists and they were
highly involved in preparing the study. A one-week
seminar, followed by three experimental FGDs,
gave them the opportunity to refine the method and
put the finishing touches on their training.
The focus group discussions were conducted in
villages selected at random from lists of administra
tive districts and sectors in each of the two sub-pre
fectures involved. The moderators were paired, and
each pair led one or two FGDs in each village. The
groups were composed to ensure good group
dynamics and production of optimal information:
homogeneity of the groups in terms of age and sex
and exclusion of leaders and those holding any
form of authority. The debates lasted an average of
48 min (30-76’). They were recorded, taking into
account that the local climate and situation dictated
a certain degree of discretion (possible natural reti
cence and the imminence of elections). Twenty-one
focus group discussions, including eight composed
of women, were conducted in eleven villages
(Table 1). In eight of the FGDs, the participants
were “young adults”, while “older adults” partici
pated in thirteen others. Nine FGDs were con
ducted in areas with a health resource (health
center or post).
The moderators produced and translated the
transcripts of the FGDs the day they were held.
The national trainers supervised the manual tran
scriptions, with the goal being to reproduce the par
ticipants’ words as accurately as possible (an
average of one working day per transcript). They
were then entered into a computer, using the
Microsoft Word software package (Microsoft,
1991). The data processing used both manual and
computer procedures adapted to the qualitative
character of the information, with the goal of pre-
Community perceptions of primary heal'
387
Table 2. Number of groups in which the particul?
beyond the scope of the
C od was mentioned in 4
p
a service which is not
ities, as is common
ioint of view of pro•
ctions is a criterion
’■’ups, whereas the
to decrease the
^.'^xtended to the
° " '"'entioned that
£ between the
o Ip of the
. x^'nto three
’
^d local
com■^ooint
-c^'USt
Item
Components related to structure
1 availability of drugs
2 accessibility of the facility
3 availability of “good" drugs
4 presence of “good” doctors
5 conditions of buildings and rooms
6 presence of “doctors”
7 availability of hospital beds
8 delivery of services not conditional upon prior payment
9 cleanliness of rooms
10 availability of diagnostic equipment (devices)
11 availability and quality of running water
12 drugs and services free
13 availability, state of washrooms
14 availability of roads, bridges and electricity
15 availability of in-patient food, quality of meals
Components related to process: technical aspects
16 overall patient care
17 caring for and treating patients well
18 good clinical examination
19 dispensing drugs
20 dispensing “goods drugs"
21 personnel doing their jobs well
22 making a good diagnosis
23 appropriate prescription
24 use of diagnostic equipment
25 appropriate referral
26 follow-up, continuity, monitoring patient during his stay
27 prescription of drugs
28 administration of injections
29 questioning of patient
30 drugs dispensed rapidly
31 recognizing one’s limits
32 giving advice (how to take the drugs)
33 appropriate care (treatment: bandages, injections)
Components related to process: behavioral and interpersonal aspects
34 overall reception
t
35 compassion, support
36 access to doctor on arrival
37 interest, attention paid
38 kindness, politeness, respect
39 waiting time
t
40 devotion, willingness to serve, being at the patient’s disposal
41 information concerning the nature of the illness
42 doctor and staff human, not haughty
Components related to outcomes
43 recovery, cure
44 rapid recovery, rapid cure
Availability
of drugs
(attribute
mentioned in
19
FGDs) or good drugs (14 FGDs)
By all appearances, drugs are considered a key el
ement in the care process: “a patient can never be
cured without drugs” and “if drugs are not on
hand, death will come". Regardless of the health
resource used, the availability of drugs is of prime
importance: “when drugs are available, I can rest
easy”, “when you’re sick, all you want is some
medication, no matter where it comes from — here,
there, the hospital, or the healer”. The “good
doctor” is “the one who has drugs” and “if we
have drugs, we are cured, and we are satisfied with
the doctor and his care”. There cannot be a good
“hospital” unless drugs are available there: “you
don’t go to the hospital just because its a hospital,
you go for the drugs”. Availability of drugs often
takes precedence over the other attributes of qual
ity: “I don’t care whether the hospital looks nice,
7
7
6
5
5
4
1
1
2
18
13
15
14
13
12
1]
10
8
7
6
5
5
5
4
2
2
2
7
5
6
5
7
5
3
3
3
1
2
1
3
0
0
0
1
1
18
12
12
12
10
7
5
4
3
19
7
4
2
1
1
<t>
7
5
6
4
8
4
7
4
6
o
2
-6
1
2
5
4
3
3
15
2
3
2
3
14
0
5
2
3'3
2
3
12
2
0
2
2
0
112
0
0
2
0
2
7.
5
5
4
3
3
3
0
0
11
7
7
8
7
4
2
4
3
8
3
5
5
3
2
0
0
1
10
9
7
7
7
5
5
4
2
8
6
4
5
4
1
1
1
2
10
6
8
7
6
6
4
3
1
7
1
12
6
6
4
13
3
8
3
11
4
8
9
9
6
7
8
7
5
6
4
4
2
5
has a fresh coat of paint or not...what I care about
is the drugs, no matter where I see my doctor”. To
give us a better understanding of the importance of
having drugs in the “hospital” a participant drew a
comparison with our visit: “When you came to see
us, we gave you a present: you got a place to stay,
you were hungry, so we gave you something to eat
and then you were happy. After the meal, you were
cured (of your hunger). At the hospital, its the
same thing”.
It is not enough for drugs to be available. It is
also important for the health resource to have the
“right drug”, i.e. the one which will enable the
patient to recover. This additional condition
appears in 14 of the 21 groups and translates the
concern that communities have about access to ade
quate drugs. “If I go to the hospital and I can’t
have the drug that can cure me, I don’t like that
hospital”. “Can you imagine a good doctor without
384
Slim Haddad et al.
serving the entire content of the transcripts. This
involved five steps: (1) locating key exchanges, (2)
computer file transfer, (3) coding of expressions, (4)
validation and (5) production of matrices recording
the results and analysis.
The locating involved several sub-steps: first, the
researchers carefully read the transcripts and
excluded exchanges that resulted from a suggestive
intervention from the group leaders
*.
The locating
involved marking the exchanges likely to convey the
meanings conferred on quality services!. The text of
the 664 exchanges identified in this way was then
transferred to the data base in a qualitative data
processing software designed by the team using the
FileMakerPro software package (Claris, 1990). The
coding of expressions consisted in: (1) compiling the
list of criteria of quality mentioned in the 21 FGDs;
(2) assigning a distinct code to each of these criteria
and (3) identifying and entering the “criteria-codes”
associated with the 664 transcripts. Forty-four cri
teria were identified, referring to aspects as varied
as the reception extended to the patient, the avail
ability of drugs, health outcomes, etc. The vali
dation process focused on the three preceding steps.
The purpose of the validation was to test the ade
quacy of the key exchange location and the criteriacodes by submitting the transcripts from two FGDs
to two independent experts^. This led to adjust
ments in the formulation of the criteria identified.
The matrices of the results allowed the research
ers to evaluate the informative content of each of
the groups and to compare the information pro
duced according to the characteristics of the groups.
The analysis focused on the content and the recur
rence of the different criteria identified; the degree
of recurrence of a key message can be considered as
the expression of the importance attached to it
(Simard, 1989).
RESULTS
To facilitate the analysis, the 44 criteria of quality
identified were first divided into 3 categories, using
*For example, the answer to a question like “Should the
doctor be competent?" was not used if the notion of a
doctor’s competence was raised by the group leader
rather than by a participant.
tThe locating was based on a conservative approach
and only those exchanges in which the participants
defined what they understood by good service, a good
doctor or a good drug were used, as well as those in
which they expressed specific expectations in terms of
quality.
tOne was chosen for his knowledge of the field of
quality of health care services; the other, for his knowl
edge of the local scene, and the Susu language and cul
ture.
§In the local context, the word "hospital” refers to a
health care facility and more specifically to a health
center. In the same manner, all health, care pro
fessionals arc called "doctor”.
Donabedian’s classification — structure, process
outcome — which has the dual advantage of
being widely accepted and easily understood
(Donabedian, 1980). Fifteen criteria refer to struc
tural components, with those relating to availability
of resources in health facilities being mentioned far
more frequently than any others. There were almost
twice as many process criteria. Of these 27 attri
butes, two have an overall character, in that they
deal with the general process of care: the fact of
taking good care of the patients, of taking an inter
est in them and their problems (a criteria mentioned
in 18 FGDs) and the fact of caring for them, offer
ing them good care, good treatment (a criteria men
tioned in 13 FGDs). Among the remaining items,
16 refer to what are generally termed the technical
components of care (Donabedian, 1980). They deal
mainly with the diagnostic and therapeutic compe
tence of the professionals as well as with the dispen
sing of drugs. Nine items deal with the conduct of
health care providers and interpersonal relations
between patients and professionals. Lastly, two cri
teria have to do with health outcomes, and one of
these, “recovery or cure”, was mentioned in almost
all of the groups. The full list of these 44 criteria, as
well as their occurrence in each type of group, is
found in Table 2. Seventeen are mentioned in more
than half of the groups, with eight being mentioned
in more than two thirds.
Recovery (attribute mentioned in 19 FGDs)
Recovery is one of the most important criteria
used to judge quality of services: “I just want to be
cured” is an expression commonly heard. A “hospital”§ is judged first for its effectiveness: “people will
be talking about it for a long time — they’ll say
that its thanks to the hospital that such and such a
person didn’t die; the hospital is really working...its
because of similar actions that people have confi
dence in the hospital”, “if you go to the hospital
and you are not cured, you will not be happy”. It
seems that expected effectiveness is the main deter
mining factor for resorting to treatment: “I go to
the practitioner who can cure me so that 1 can get
well again”, or “wherever they can cure me is the
best hospital for me”.
Similarly, the quality of the drugs and the phys
icians is determined by their effectiveness: “A good
drug is one that, once it gets into your body, helps
you get well again”. The good doctor is “the one
who solves your health problem”. “If the patient
gets well again, the person will be happy and the
doctors who cared for him will be happy also
because they were able to help a sick person get
well”. “If a doctor succeeds in saving a patient
from death...he can be proud of himself because he
gave that person his life back again...the doctor
who is successful in treating you will be highly
regarded among his peers”.
Community perceptions of primary health care
385
Table 2. Number of groups in which the particular criteria is mentioned
Item
Components related to structure
J availability of drugs
2 accessibility of the facility
3 availability of “good” drugs
4 presence of “good” doctors
5 conditions of buildings and rooms
6 presence of “doctors"
7 availability of hospital beds
8 delivery of services not conditional upon prior payment
9 cleanliness of rooms
10 availability of diagnostic equipment (devices)
11 availability and quality of running water
12 drugs and services free
13 availability, state of washrooms
14 availability of roads, bridges and electricity
15 availability of in-patient food, quality of meals
Components related to process: technical aspects
16 overall patient care
17 caring for and treating patients well
18 good clinical examination
19 dispensing drugs
20 dispensing “goods drugs”
21 personnel doing their jobs well
22 making a good diagnosis
23 appropriate prescription
24 use of diagnostic equipment
25 appropriate referral
26 follow-up, continuity, monitoring patient during his stay
27 prescription of drugs
28 administration of injections
29 questioning of patient
30 drugs dispensed rapidly
31 recognizing one’s limits
32 giving advice (how to take the drugs)
33 appropriate care (treatment: bandages, injections)
Components related to process: behavioral and interpersonal aspects
34 overall reception
35 compassion, support
36 access to doctor on arrival
37 interest, attention paid
38 kindness, politeness, respect
39 waiting time
40 devotion, willingness to serve, being at the patient’s disposal
41 information concerning the nature of the illness
42 doctor and staff human, not haughty
Components related to outcomes
43 recovery, cure
44 rapid recovery, rapid cure
Availability
of drugs
(attribute
mentioned in
19
FGDs) or good drugs (14 FGDs)
By all appearances, drugs are considered a key el
ement in the care process: “a patient can never be
cured without drugs” and “if drugs are not on
hand, death will come”. Regardless of the health
resource used, the availability of drugs is of prime
importance: “when drugs are available, I can rest
easy”, “when you’re sick, all you want is some
medication, no matter where it comes from — here,
there, the hospital, or the healer”. The “good
doctor” is “the one who has drugs” and “if we
have drugs, we are cured, and we are satisfied with
the doctor and his care”. There cannot be a good
“hospital” unless drugs are available there: “you
don’t go to the hospital just because its a hospital,
you go for the drugs”. Availability of drugs often
takes precedence over the other attributes of qual
ity. I don’t care whether the hospital looks nice.
With
PHC
n = 9
Without
PHC
n - 12
8
4
3
4
2
•3
3
3
3
I
1
2
1
11
11
8
8
9
6
7
5
5
4
4
5
4
3
3
11
9
8
9
7
8
7
6
- 6
5
3
3
4
3 ~
1
2
I
2
8
6
5
4
4
5
5
6
1
4
1
2
0
3
2
2
2
0
10
7
10
10
9
7
6
4
7
3
5
3
5
2
2
0
0
2
0
0
1
10
9
7
7
7
5
5
4
2
8
6
4
5
4
1
1
1
2
10
6
8
7
6
6
4
3
I
6
4
13
3
8
3
11
4
Women
n » 9
Men
n = 12
Young
n = 8
Older
n - 13
7
4
7
5
5
5
3
2
4
3
3
3
1
1
2
12
II
7
7
7
5
6
6
4
4
4
3
4
4
2
7
5
5
5
2
3
2
1
3
2
1
2
1
1
1
12
12
9
7
10
7
7
7
5
5
6
4
4
4
3
18
13
15
14
13
12
11
10
8
7
6
5
5
5
4
2
2
2
7
5
6
5
7
5
3
3
3
1
2
1
3
0
0
0
1
1
11
8
9
9
6
7
8
7
5
6
4
4
2
5
4
2
1
1
7
4
7
5
6
4
4
4
2
2
3
2
1
2
3
0
1
0
18
12
12
12
10
7 •
5
4
3
7.
5
5
4
3
3
3
0
0
11
7
7
8
7
4
2
4
3
8
3
5
5
3
19
7
7
1
12
6
All
n -= 21
19
17
14
12
12
10
9
8
8
7
7
6
5
5
6
7
6
6
has a fresh coat of paint or not...what I care about
is the drugs, no matter where I see my doctor”. To
give us a better understanding of the importance of
having drugs in the “hospital” a participant drew a
comparison with our visit: “When you came to see
us, we gave you a present: you got a place to stay,
you were hungry, so we gave you something to eat
and then you were happy. After the meal, you were
cured (of your hunger). At the hospital, its the
same thing”.
It is not enough for drugs to be available. It is
also important for the health resource to have the
“right drug”, i.e. the one which will enable the
patient to recover. This additional condition
appears in 14 of the 21 groups and translates the
concern that communities have about access to ade
quate drugs. “If I go to the hospital and I can t
have the drug that can cure me, I don’t like that
hospital”. “Can you imagine a good doctor without
386
Slim Haddad el al.
good drugs?” A good “hospital” is “where you find
both good doctors and good drugs”.
Reception
of patients
(attribute mentioned in
18
FGDs)
To a large extent, health care personnel are
judged on the manner in which they receive their
patients. “The most important thing is the way in
which a patient is received and looked after”. “The
‘good doctor’ is someone who receives you very
well, he looks at you carefully, greets you, he is
very happy with you...he takes an interest in the
patient, doesn’t neglect him to take care of his rela
tive instead”. A good doctor “doesn’t mean edu
cation alone since that cannot change the way a
person acts. There are men who are well educated
and behave very badly”. Sometimes proper recep
tion of patients is as important as having drugs
available: “drugs and proper reception of patients
are equal;...if you see that you are getting good
drugs, it is because he (the doctor) examined you
well and because you found a good person”.
Here too, the participants often drew parallels
with everyday life to illustrate their points:
“When someone comes to your door, first you
have to say hello to them”. But the need to
extend a proper reception is not simply a matter
of observing social niceties. A proper reception is
first a source of hope because “once you fall ill,
you lose all sense and the patient...will be at ease
and will have hope that he will get well again”.
It inspires courage and the manner in which the
doctor receives the patient is a source of comfort:
“if you go and the doctor receives you well and
looks after you, that may be enough”. The recep
tion enables the patient to accept a difficult situ
ation and it helps him to overcome the thought
that the treatment may fail: “if you receive a
patient well and you succeed in treating and cur
ing him, he will be very grateful to you”. If the
opposite happens, the patient will say: “he did
everything to cure me, but didn’t succeed, but he
was very kind”. At this point, the patient will
have no regrets, “his condition is in God’s
hands". The reception extended also compensates
for other shortcomings since “even if drugs are
not available, at least you have a good impression
of the person" and “even if I die it will not be
your fault”. A proper reception also takes on
therapeutic powers. It can “decrease the pain of
your illness” and start the recovery process: “just
by the way the doctor greets you, he can relieve
you..” since “it is not money that cures a patient,
but rather the good care of the doctor”. Lastly, a
proper reception is justified because it has the
ability to increase the clientele knowing that once
“I come to you and you receive me very well and
you give good treatment, I will find lots of
patients for you, telling them that its the best
hospital”.
Overall care (attribute mentioned in 18 FGDs)
These are expressions in which the participants
raise the matter of “taking care of the patient”
“looking after him”, or “dealing with his pro
blem”. This notion of looking after the patient
usually encompasses the steps of the care process
which, within the framework of the local rep
resentations, contributes greatly to recovery: the
reception extended, the examination of the
patients, the diagnosis, and then dispensing the
appropriate drug. Thus, for example, “looking
after the patient” involves the following sequence:
“the patient comes in worried, you approach him,
prescribe the good drugs for his illness, and you
give him the drugs”. Thus, it is less a matter of a
criterion concerning a specific attribute of quality
of services, and more an aggregate enabling the
patient to make an overall judgement on the care
process. Here too, it is one of the pillars that
patients use as the basis of their judgement of the
quality of health resources; the good doctor is
typically “the one who can look after his patients
very well” since “the patient wants someone to
take care of him well by helping him to make a
full recovery”.
Accessibility of the
“hospital”
(mentioned in
17
FGDs)
The question of accessibility to health care cen
ters was systematically raised in the five villages
that do not have one. However, the same was true
in the other villages, suggesting that proximity to
health resources would always be an important cri
terion for judging them. It should also be noted
that the desire expressed in the outlying villages to
have bridges and roads actually speaks of the desire
to improve accessibility to existing health centers
“to stop going to others to get care” and because
“its no picnic to carry a sick person on your back
for 23 km”.
Good clinical examination (attribute mentioned in 15
FGDs)
In a context in which performing a clinical
examination is not always effective, the commu
nities expect their care providers to conduct a
thorough visit with their patients. A good doctor
must “take a close look at the patients”, “observe
them carefully”. Of course, this examination
enables the doctor to make a good diagnosis and
to set in motion the follow-up in a favorable
manner “the doctor looks at my sickness so that
myself and my child do not die”. In addition, it
is reassuring: “when you go to the hospital and
the doctor walks past you and does not even
touch you much, the patient ends up feeling
afraid; but if he looks at you and tries to do
something for you, then you re happy •
Community perceptions of primary health care
Dispensing drugs (attribute mentioned in 14 FGDs)
It is not enough for a “doctor” or a “hospital”
to have a drug available. This “doctor” must also
dispense the drug to his patients. There was no
direct explanation for this distinction between avail
ability and dispensing of drugs in the exchanges
during the FGDs. Nevertheless, it is probably re
lated to the experiences of some participants for
whom the drugs available in the health centers had
not been distributed in a systematic or perfectly
transparent manner. Here again, the participants
emphasized that it has to be the right drugs —
those that cure (the distinction between the two
items “dispensing of drug” and “dispensing of the
good drug” is one of the characteristics of the pro
cess that recurred most frequently. “The person
who treats me must not only .give me a product,
but a product that can cure me. The good doctor
gives good drugs”, he is the one “who administers
the good injections...gives you the good drugs and
you are cured”.
Other attributes
The 44 items cover the main components that
enable users to characterize health care or services.
Though they focus on the care, not one refers
directly to preventive services such as vaccination,
prenatal consults, family planning, or health edu
cation. Some deserve special attention. Thus, the
possibility to defer payment for care was mentioned
in 9 FGDs, even though these payment arrange
ments contravene the rules in force in the health
centers. The availability of infrastructures such as
roads, bridges or electricity in the villages was men
tioned in 5 FGDs, although these are components
100%
100%
387
that by and large are beyond the scope of the
health sector per se. Food was mentioned in 4
FGDs even though this is a service which is not
offered in the health facilities, as is common
throughout Africa. From the point of view of pro
cesses, the administration of injections is a criterion
of quality mentioned in five groups, whereas the
PEV/SSP/ME program is trying to decrease the
practice. Aside from the reception extended to the
patient, there were many qualifiers mentioned that
have to do with interpersonal relations between the
patients and caregivers. With the help of the
national trainers, they were broken down into three
categories according to Susu semantics and local
cultural representations: kindness, respect, and com
passion. It should also be noted that from the point
of view of outcome, good health care services must
lead to cure, and if possible, a rapid cure.
Criteria of quality and composition of groups
In this section, we compared the criteria
expressed in the different groups according to sex,
age, and the participants’ access to health services.
The small number of groups and the resulting lack
of statistical strength made it impossible to use
inference tests and to generalize the possible differ
ences observed to a general population. The criteria
expressed in this sample of groups were not distrib
uted uniformly (see Table 2). Fewer criteria of qual
ity emerge from groups made up of young adults,
women and those who had means to access health
care services. Of the 44 attributes, on average 16.4
were raised in the groups of women and 21.3 in the
groups of men (for a general average of 18.0 items
per FGD). These values were 16.9 for the groups of
young adults, 20.7 for those of older adults, 17.0
100%
100%
100% -r
90% ■■
80%
70%
60% ■■
50%
40% ■■
30%
20% ■
10%
0% ■ Good clinical examination
Availability of Drugs
!
□ Women
n=9
□ Men
n=L2
S Young
n=8
■ Older
o=13
□ With PHC
n=9
■ Without PHC
n=I2
Fig. I. Major criteria valued in each of the groups: Proportion of groups in which the particular criteria
is mentioned.
388
Slim Haddad et al.
Fig. 2. Criteria valued more by women than men: Proportion of groups in which the particular criteria
is mentioned.
for those group discussions that took place in vil
lages that have health resources and 20.9 in those
carried out in -areas that do not have health
resources.
The less productive nature of these groups was
confirmed for the different categories of criteria. On
average, there were 20% more criteria in the groups
of men and the difference was even more marked
for the criteria dealing with technical aspects of the
processes or health outcomes. As for age, the most
significant differences deal with the criteria related
to the structure and interpersonal aspects ( + 53%
and +23% for older adults). The criteria of struc
ture were also more frequently mentioned in the vil
lages in which accessibility was lower ( + 40%).
Some criteria still appear to be important, inde
pendent of the age of the participants, their sex, or
accessibility of services. In particular these include
the patient’s recovery, the availability of drugs, the
reception extended, and the practice of a clinical
examination (see Fig. 1).
On the other hand, there are more contrasts
between some of the distributions. The women men
tioned the availability of “good drugs”, dispensing
of “good drugs”, cleanliness of the rooms, “admin
istering injections” and in-patient food more fre
quently than the men did (see Fig. 2). Accessibility,
“dispensing drugs”, the attention given to patients,
good diagnosis, kindness, appropriate prescription
and referral, the possibility of resorting to a
*This list of items was purposely limited to the criteria
that appeared over 50% of the time among men and
that were mentioned in at least one third of the 21
FGDs.
fEvaluated
according
preceding note.
to
the
same
method
as
in
the
deferred payment plan, and rapid cure
*
were
among the criteria most frequently mentioned by
men (see Fig. 3). The older adults clearly placed
greater importance! on the accessibility, the physi
cal conditions and state of the rooms and beds for
consultation and hospitalization, the possibility of
resorting to a deferred payment plan, and the com
passion of the staff members (see Fig. 4). They
seemed less concerned than the younger adults with
speed of recovery as well as a good clinical exam
and “dispensing good drugs” (see Fig. 5). Lastly,
and logically, the inhabitants with the most limited
access to health services were also those who most
frequently mentioned the need to ensure good avail
ability of physical (hospitals, rooms, beds) and
human (doctors) resources that would in turn guar
antee good technical quality (examination, dispen
sing of drugs, use of diagnostic equipment) and
reduction in waiting times.
DISCUSSION
The study suggests that when communities are
called upon to judge the quality of health services,
they tend to mobilize a variety of criteria, covering
the different aspects of quality. Most of these cri
teria had been raised within the first five FGDs and
one could have reasonably concluded that, in the
local context, the essence of the scope of significa
tions concerning quality of health services had been
covered.
It is possible to establish a hierarchy between the
different criteria of quality based on how frequently
they are mentioned. Eight criteria appear to be
greatly valued. Most of them relate to the structure
(availability of drugs and accessibility of the hea t
Community perceptions of primary health care
389
payment
Fig. 3. Criteria valued more by men than women: Proportion of groups in which the particular criteria
is mentioned.
facility) or the process of care (reception of patients,
overall care, good clinical examination, dispensing
drugs and/or good drugs) and are regularly
reported in the literature. The eighth criteria, recov
ery of health, is the most frequently encountered,
suggesting that quality of health services is first and
foremost to be judged in terms of outcomes. This
result is quite interesting given that outcomes are
surprisingly rarely mentioned as a distinctive attri
bute of perceived quality (Atkinson and Ngenda,
1996, include them in the dimension of technical
competence and they do not appear in the Attah
and Plange, 1993, taxonomy).
The accent placed on the capacity of the services
to produce a cure should be placed alongside the
fact that the expectations expressed were basically
of a curative nature. Unlike what has been observed
elsewhere (Gilson el al., 1994), the study partici
pants never spontaneously mentioned preventive
services or their complementarity with health care
activities, even though these services are highly inte
grated in the local context. The criteria expressed
also do not address the notion of acceptability of
the services that has been suggested by some stu
dies, especially in the area of family planning
(Bruce, 1990; Kim et al., 1992; Askew el al., 1993).
payment
Fig. 4. Criteria valued more by older than younger adults: Proportion of groups in which the particular
criteria is mentioned.
390
Slim Haddad et al.
Fig. 5. Criteria valued more by younger than older adults: Proportion of groups in which the particular
criteria is mentioned.
It is possible that the moderators did not succeed in
leading the participants to express their opinions on
this subject. It is also conceivable that in a context
in which different medical traditions have coexisted
for several decades, the question of acceptability of
modern medicine is actually no longer asked. The
many exchanges in which the participants stated
that they did not care about the type of caregiver,
provided that his care was effective, lend credence
to this hypothesis. Moreover, the issue of family
planning is quite different. It is easy to understand
the importance of acceptability in this area, since
the professionals and services proposed could easily
offend the users’ profound convictions (fertility,
sexuality).
As we have said, the differences observed between
types of participants must be interpreted with cau
tion. Criteria of structure, process and outcome
were mentioned in virtually all of the FGDs and
the order of importance of the 44 criteria mentioned
was relatively stable overall. However, the men
seem to base their judgement of quality on more
diversified criteria than women. Taking the local
context into account, the women are relatively dis
creet when it comes to expressing themselves in
public and we cannot ignore the possibility that in
spite of a meticulous preparation, the investigators
were not able to succeed in drawing them out of
their natural shell. Their strong preoccupation with
regard to drugs could be explained by the strong
worry they have on “making the trip for nothing”
and their concern with cleanliness could be
explained by their own familial responsibilities. As
far as cure is concerned, they appear more patient
than the men, perhaps as they are about other
aspects of daily life. The men, who traditionally
control the household budget and pay for health
care, are naturally more concerned with the terms
and conditions of payment. Lastly, the greater im
portance expressed by the men with regard to rela
tional aspects is somewhat surprising and could .be
the consequence of the women holding back, as
mentioned above.
The focus group discussions of older adults lasted
an average of 15 min longer than those of the
young adults and more criteria of quality were
expressed during these groups. By virtue of their
social status and their experience, the elders clearly
felt more at ease when expressing themselves in
front of people from outside of their village. Their
greater sensitivity concerning the availability of
health facilities, equipment and rooms could be
explained by the fact that, for the most part, they
knew a time when these resources did not exist.
Lesser financial resources could explain their will
ingness to take advantage of payment plans. Lastly,
it is easy to understand that the inhabitants of vil
lages that do not have any health facilities and
must therefore make considerable efforts to obtain
care would be those who place the greatest value on
structural components such as accessibility and the
presence of drugs, doctors and a facility equipped
with hospital beds, (see Table 2).
The results concerning the criteria used to judge
quality are supported by previous observations on
the determinants of health services utilization in
developing countries. Close associations have been
described between utilization and people’s percep
tions regarding overall quality (Ellis et al., 1990), a
facility's reputation (Pepperall et al., 1995) and
accessibility (Stock, 1983; Tsongo et al., 1993),
availability of drugs (Unger et al., 1990;
Waddington and Enyimayew, 1990; Litvack and
Bodart, 1993; Gilson et al., 1994), payment pro-
Community perceptions of primary health care
391
Table 3. Classification of lay people’s perceptions of the quality of primary health care services
Aspects
Sub-aspects
Criteria
Technical competence
Diagnostic Process
Questioning the patient; Good clinical examination; Use of
diagnostic equipment; Good diagnosis
Appropriate prescription; Appropriate referrals; Recognizing ones
limits
Dispensing drugs and/or good drugs; Drugs dispensed rapidly,
Administration of injections; Giving advice; Good follow-up during
patient stay; Appropriate care
Reception; Support; Doctor and staff human; Respect, Kindness and
patient regarded as equal
Access to doctors upon arrival; Devotion — Willingness to serve;
Information on the nature of the illness
Honesty of personnel
Presence of doctors and/or good doctors
Decision Process
Treatment Process
Attitudes, conduct
Interpersonal Competence
Interest taken in patient
Availability and adequacy of
resources and services
Integrity
Human resources
Drugs and treatments
Equipment
Rooms, Buildings
Accessibility
Effectiveness
Geographic accessibility
Financial accessibility
Organizational accessibility
Effectiveness of care
cedures (Haddad and Fournier, 1995) and waiting
time (Kloos et al., 1987; Tsongo et al., 1993;
Pepperall et al., 1995; Atkinson and Ngenda, 1996).
Utilization has also been related to health workers’
qualifications (Abosede, 1984; Berman, 1984;
Sauerbom et al., 1989), technical competence
(Egunjobi, 1983; Tsongo et al., 1993; Gilson et al.,
1994; Haddad and Fournier, 1995), honesty (Bruce,
1990; Gilson et al., 1994; Haddad and Fournier,
1995) and conduct (Bichman et al., 1991; Gilson et
al., 1994; Haddad and Fournier, 1995; Pepperall et
al., 1995).
Some of the criteria were congruent with those
that the health professionals consider, implicitly or
explicitly, when they are called upon to judge the
quality of PHC services. This was the case for most
of the criteria concerning the structure and technical
quality of the care. There are, however, others that
differ. Contrary to the public, the professionals base
their judgements most often on indicators of struc
ture, or even of process, but rarely on measurement
of outcome (Wouters, 1991). They also focus
mainly on the technical aspects (Bruce, 1990;
Gilson et al., 1994; Rees Lewis, 1994) and neither
the quality of the reception nor the conduct of the
staff are usually among the questionnaires they de
sign and use to measure quality.
Some of the attributes clearly illustrate the gaps
that can exist in the representations of the health
care authorities and the communities in terms of
quality of services. The possibility of obtaining
credit plan, for instance, is one of the important cri
teria used by the public to judge the quality of ser
vices. These payment schemes are actually
prohibited, since those in charge of the government
program feel that they are a sign of poor manage
ment and inadequate quality. The availability of
injections is another example. As in other countries
Availability of drugs and/or good drugs
Availability of diagnostic equipment (devices)
Condition; Cleanliness; Availability of hospital beds, running water,
washrooms, in-patient food
Distance to facility
Drugs and services free; Delivery of services not conditional upon
prior payment
Waiting time; Access to doctor upon arrival
Recovery; Rapid cure
(Reeler, 1990), the Guinean population seems
highly attracted by the idea of receiving injections
and their availability is often seen as a measure of
quality. Now, because of the risks brought about
by their abusive use, injectable products have been
reduced to a minimum on the list of essential drugs
and health staffs are strongly urged to use injectable
products sparingly.
It would be useful to present the criteria
expressed in a way which allows for distinctions to
be drawn between the main dimensions covered by
the notion of “perceived quality”. We attempted to
reorder the criteria and include them into a vali
dated — or at least, widely accepted — framework
of perceived quality. Unfortunately, this appears to
have been an unrealistic expectation. This may be
explained in part because such a framework does
not exist as previous conceptual (Brooks and
Williams, 1975; Vuori, 1982; Bruce, 1990; Palmer,
1991; Donabedian, 1992) or empirical (Calnan,
1988a; Lohr et al., 1991; Attah and'Plange, 1993;
Wilde et al., 1993; Thomas et al., 1995; Atkinson
and Ngenda, 1996) research has led to quite distinct
classifications, and in part because the criteria ident
ified in our study encompass most of the com
ponents reported in the majority of the field studies
we encountered. We then developed our own classi
fication using a mixed approach (conceptual and
empirical). It includes five dimensions (see Table 3).
Two of them refer to the personnel, two to the
health facilities and one to health care outcomes.
Each dimension is divided into sub-categories invol
ving a variable number of criteria. Three of the
forty-four criteria were not included in the classifi
cation. The criterion “presence, availability of
roads, bridges and electricity in the village” was not
deemed relevant in a classification dealing with the
quality of health services. The items “overall patient
392
Slim Haddad et al.
care” and “caring for and treating patients well”
were judged to be too general and' their content is
covered in several sub-categories. One criterion —
integrity — was added since: (1) private discussions
outside of the focus group discussions (with respon
dents and key informants) suggested that it would
be relevant to consider it as a criteria of perceived
quality; (2) previous research studies have suggested
that this aspect may have a strong influence on
people’s perception of quality (Bruce, 1990) and
■on their utilization of public health services (Gilson
et al., 1994; Haddad and Fournier, 1995).
Rather than focusing on the components of care,
like others (Brooks and Williams, 1975; Vuori,
1982; Bruce, 1990; Donabedian, 1992; Ellis and
Whittington, 1993; Atkinson and Ngenda, 1996),
this taxonomy focuses on rhe components of quality
(Haddad et al., 1997). It seems, however, to be
more detailed and deals more specifically with PHC
services than those we have consulted. Although the
authors feel this classification is realistic, it is
neither comprehensive nor universal and it is poss
ible that the dominant representations of quality
and the expectations of the public will be different
in another context. Further research would be desir
able to test whether it can be generalized.
CONCLUSION
The success of strategies to revitalize PHC ser
vices such as those advocated by the Bamako
Initiative rests largely on their ability to meet the
expectations of populations, especially in terms of
quality. The evaluation of the quality perceived by
the communities thus constitutes an important
complement to the evaluations carried out accord
ing to the health authorities own approaches.
Nevertheless, this requires a good knowledge of the
meanings that the notion of quality has for the pub
lic as well as the main criteria that users apply
when they judge the quality of services.
The diversity of the criteria that communities use
to judge quality illustrates the wealth of their rep
resentations and the complexity of the notion of
quality. To a large extent, communities construct
their judgement in relation to the ability of the ser
vices provided to improve their health. This is one
more argument for the development of method
ologies for quality evaluation that are based on out
come indicators.
This research provides valuable indications about
the changes that should be made to promote the
quality of primary health care services. It illustrates
the fact that users are just as sensitive to aspects of
the interpersonal relations they have with the pro
fessionals as they are to the technical quality of the
care provided. They recognize the importance of a
good diagnosis, adequate treatments, as well as the
need to receive sufficient information on the health
problem and the treatments to follow. The judge
ment people make on consultations that last just a
few minutes, as is often the case, that are botched
and do not even include a physical examination,
can hardly be flattering.
The role of interpersonal relations is very import-.
ant. As in other studies, the conduct of the health
care professionals stands out as a central element of
the judgement that users make about health ser
vices. Health services must take note that their
users want a proper reception and treatment, but
their main concern is to be considered globally, as a
person with a health problem rather than as a case.
Health care workers have to carry the burden of a
dual legacy: that of their bio-medical background
which, contrary to the traditional treatments that
are more anchored in their cultures, tends to focus
more on the disease than on the person and that of
many professionals who often abuse the authority
that has been conferred upon them in the patient
caregiver relationship.
Training may allow for the development or
improvement of certain technical or even interperso
nal skills. However, this alone will not be sufficient
and deeper changes in values will have to be
encouraged. Relations between health care pro
fessionals and the public are unfortunately often the
reflection of those that exist between public powers
and the population. Only an effective democratiza
tion and good governance will be able to modify
the situation significantly.
Acknowledgements—The authors extend sincere thanks to
their many collaborators from the following partner insti
tutions: the Guinean Ministry of Public Health and Social
Affairs, the local UNICEF office, the Maferinyah Rural
Health Center for Research and Training, Wonkifong
Health Project (CECI), Cooperation Francaise. They
would also like to thank Christiane Saucier, Raynald
Pineault, and Binta Diallo for their contributions to this
study and the analysis of the findings and Helene
Kaufman for translation of the original manuscript. This
study was made possible by a research grant from the
Canadian Public Health Association, as part of Phase II
of the Canadian International Immunization Program
(Canadian International Development Agency).
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23
MATERIAL ON HIV/AIDS
SENT BY
MEDICAL MISSION INSTITUTE
UNIT FOR HEALTH SERVICES AND HIV/AIDS
SALVATORSTR. 22
D-97074 WURZBURG
GERMANY
June 2001
I: the blood i- not atter all needed bv the patient, the blood gous blood, as Nigerians are unwilling to donate voluntar
bank Hands to gain, provid ingot course that the blood is ily, except when their relatives are involved or where there
lolly screened before being given to another patient.
is financial benefit attached.1’
Berede et al"' recommend that, for hospitals with
It is cheaper than pre-deposit autologous blood trans
fusion.
limited blood bank facilities and frequent cancellation of
The major disadvantage of Al’H is over-dilution. This surgeries, the use of APH is the best option. Liaw et al17
can be avoided by close monitoring and the useof diuretics. found no morbidity, such as transfusion reaction,
Contraindications to the procedure exist. These infection or reoperation for bleeding, associated with
include a haematocrit ol less than 30".., sickle cell disease, haemodilulion. Chandanayingyongetal"1 concluded that
severe cardiovascular diseases, bleed ing disorders, ba cter- haemodilution with gelatin solution is suitable and pos
aeinia, diabetes mellitus. hypertension, liver diseases etc. sibly practical in obtaining sufficient blood for elective
Haemodilution can be an important component of a surgical patients and is without undesirable side-effects.
Despite the wealth of evidence supporting the use of
comprehensive autologous transfusion programme. Such
a programme comprises combinations ol Al’H itself, autologous blood transfusion, there is a poor response
intra-operative blood’ salvage, post-operative blood rate amongst eligible autologous donors. The answer lies
in better education- of pa tien ts, physicians and blood bank
salvage, and a pre-deposit autologous programme."
Bruce" found that transfusion requirements for 138 personnel - on the merits of autologous therapy, particu
aortic reconstructive procedures were minimised through larly haemodilution.
the combined use of haemodilution, autotransfusion and
good surgical technique. He also pointed out that Experience on the Jos Plateau, Nigeria
A case-control study was conducted at Jos University
autotransfusion was cost-effective.
George, rheumatologist,"'performs preoperative phle Teaching Hospital over a 2-year period (October 1996botomy ot 2-3 units of blood prior to performance of September 1998).'" Sample size was 100, and there were
reconstructive procedures such as total hip replacement also lOOcontrols. Sample and control patients were matched
or knee arthroplasty He practices haemodilution rou for age, sex, and preoperative PCV of at least 30%.
In the sample group, prostatectomy and thyroidectomy
tinely as a policy. Nevertheless, a major reason for
underutilisation of autologous service is the failure of emerged as the two major procedures most often requiring
surgeons to recommend it to eligible patients. Pearl11 blood transfusion. Ninety-two per cent of patients had one
recommends that autologous blood should be utilised pint of blood withdrawn and haemodilution was done
whenever possible, as it does notcausealloimmunisation. successfully. No untoward effects were noted,
Patients in the control group had at least two pints of
Onwukeme'2 noted that autologous blood might be more
seful in tropical Africa because of the high incidence of blood transfusion each, with significant reactions to blood
■rum hepatitis, HIV infection, and the scarcity of volun- transfusion. We therefore conclude that APH can be
irv donors. In another study,1’he found that haemodilu- safely practised in our environment.
cion accompanying blood donation of one pint of blood did
Furthermore, in this work it was .found that 40% of
not affect the values of platelets and leucocytes. This, patients needed no blood transfusionatallafterhaemodihe explained, was due to the fact that the circulating lution, thus saving on blood bank stocks. In the control
granulocyte pool is so large that removal of one pint has no group only 4% of patients had no blood transfusion at all,
significantchangeon the leucocytes; thesa me holds true for indicating homologous blood transfusion consumes and
.
the platelets. However, wastes blood. Haemodilution is therefore to be preferred.
Preopeiotive hoeniodiulion can th(? same investi
found thn(
p|atelet
count did not increase
above the upper limit
=MS11
value normal in Afri
cans following surgical
trauma.1’
Africans, especially
Nigerians, stand to gain
when they participatein
autologous blood trans
fusion programmes,
particularly haemodilu
tion. The blood transfu
sion service in Nigeria
is bedevilled by chronic
shortage of homolo
save blood stocks © Pholodisc
6 Africa Health
Conclusion and recommendation
It is clear that acute pieoperative haemodilution can be
done routinely in surgical practice in our environment. No
side-effects were noted in our own experience with 100
patients. It is cheap, safe, and is to be preferred to other
forms of blood transfusion in elective surgical procedures.
Contraindications to the procedure areemergencies, malig
nancies, or severe sepsis. Patients and their relations,
physicians, and blood bank personnel are urged to promote
preoperative haemodilution. It is hoped-given theemphasis on cost containment and concern about blood safety
coupled with emerging technologies - that wider applica
tion of haemodilution will be seen in the next decade?
Please contact the Editor of Africa Health for the
references to this article.
May 2000
Blood transfusion: the case for preoperative
haemodilution in adults
Professor C H lhezue, Head of Department of Surgery and Dr Aminu Likita, Senior Registrar
in General Surgery, Jos University Teaching Hospital, Jos, Nigeria
Homologous blood transfusion carries a number of haz
ards, some of which may be immediate-allergy, haemo
lytic reactions, circulatory overload etc. Delayed hazards
are the transmission of diseases such as HIV infection,
cytomegalovirus infection, syphilis, serum viral hepati
tis, immunosuppression etc.1’’ The occurrence of these
problems has led to a search for alternatives to homolo
gous transfusion. Such alternatives include: directed blood
transfusion? use of blood substitute (e.g. perfluorocarbon,
modified haemoglobin), and the use of autologous blood.
Autologous blood transfusion (autotransfusion) means
collection and subsequent reinfusion of a patient's own
blood.1 It averts some of the complications associated
with homologous transfusion. The five different types of
autologous transfusion2 are:
• pre-deposit autologous transfusion
• acute preoperative haemodilution
• intra-operative blood salvage
• post-operative blood salvage
• frozen storage of autologous blood.
These methods are not mutually exclusive and often
can be used beneficially together for tlie patient.
Acute preoperative haemodilution
This article focuses on acute preoperative haemodilution
(APH) - a form of autologous blood transfusion where
the patient's blood is removed 48 hours or less before
surgery Cell-free solution (crystalloids or colloids) is
simultaneously infused to main tain normovolaemia. Sur
gery is performed with the patient's blood haemodiluted.
When haemostasis is secured at the completion of
surgery, or sooner if necessary, the patient's blood is
reinfused. It is a simple procedure and quite cheap.
APH in practice
The decision on which patients are suitable is usually
taken by the surgeon. The procedure must be fully
explained to the patient. Venesection is done in the blood
bank or in the theatre at induction of anaesthesia. The
blood is collected, under sterile conditions, into a blood
bag containing the anticoagulant citrate phosphate
dextrose (CPD). Blood is collected from one venous line
and blood volume is replaced simultaneously with
colloids (e.g. dextran in a ratio 1:1) or crystalloids (e.g.
isotonic saline in a ratio 1:3) via a second venous line. The
number of units withdrawn is usually one or two but
some have withdrawn as much as four? As much as
2000 ml of blood can be obtained and transfused.7
Maw 2000
The blood packs are clearly labelled and stored in a
refrigerator.
Transfusion is done intra-operatively when losses ex
ceed 300 ml and, preferably, when haemostasis has been
achieved, or in the immediate post-operative period:'
The case for APH
APH provides fresh red blood cells, platelets, coagulation
factors etc. and so reduces the haematocrit, leading to
optimal capillary perfusion. It has been demonstrated that
APH lowers blood viscosity', and that maximum oxygen
delivery to tissues actually occurs at a haematocrit of 30%.
Tills leads to increase incardiacoutputand tissue perfusion
and, hence, overcompensates for the effects of reduction in
red cell concentration and tlie blood's oxygen-carrying
capacity. Generally, red cell losses are less at haematocrit
30%, and anaemic patients bleed less?
These findings have led to wide application of APH in
the United States in cardiovascular, vascular, orthopae
dic and abdominal surgery. APH is the most widely
established method of autologous blood transfusion. It is
also the standard practice in many surgical units of the
Western-world.2 The feasibility and safety of the proce
dure has been demonstrated since the 1970s? It requires
no specialised instrumentation and can be carried out in
a general hospital that has manpower and facilities for
blood transfusion on a routine basis. It has proved useful
in all branches of surgery including paediatric surgery.'
TheNigerianNational Blood TransfusionService recom
mended, in 1991, tlie following patient selection criteria:'
• haematocrit must be at least 30%
• surgery is such that blood loss is likely to be greater
than 15 ml/kg
• children over 2 years of age can benefit if the blood loss
will be more than 10 ml/kg
• patients over 65 years-of-age require individual evaluation.
The advantages of APH are many but may be summa
rised as follows.
• Decreased requirement for homologous blood. Several
studies have shown a decrease of 15-25% in the use of
homologous blood?
• The fresh blood from APH, being blood less than 24
hours old, is rich in platelets and coagulation factors.
This could lead to improvement in post-operative
haemostasis, although such an effect has not yet been
demonstrated in practice.
• There are less biochemical changes with fresh blood as
compared with banked blood?
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