THE INTERNATIONAL PARTNERSHIP AGAINST AIDS IN AFRICA
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THE INTERNATIONAL PARTNERSHIP
AGAINST AIDS IN AFRICA
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Efforts to roll back the AIDS epidemic in .Africa simply have not kept
pace with the epidemic itself. A bigger, broader effort is needed if the
response is to catch up. For many the answer lies in the International
Partnership Against AIDS in .Africa. The Partnership is a coalition that works
under the leadership of .African countries to save and improve many lives.
It is made up of .African governments, the United Nations, donors, and the
private and community sectors.
In international development, never before has such a
multisectoral group joined forces to fight a single disease. By providing
national leadership, .African governments are spearheading broad-based
national responses. United Nations organizations are coordinating the
global response and providing programme and financial support to
country-level efforts. Donor governments are also supporting action at ail
levels, providing input into substantive development of the Partnership in
addition to financial assistance. The private sector is providing expertise and
resources to help turn the epidemic around in the business community
and beyond. And. finally, the community sector is working to ensure
ownership of the Partnership within local civil society and to strengthen
regional and country networks.
The Partnership’s mission is as ambitious as it is simple: over the
next decade, it will help reduce the number of new HIV infections in Africa,
promote care for those who suffer from the virus, and mobilize society to
halt the advance of AIDS.
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AIDS IN AFRICA:
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AIDS is the number one killer in Africa - it kills ten times
more people than war.
Over the last twr decades real progress has been made in many
African countries in health care, education, life expectancy, economic
growth and human security’. Now, in the hardest hit countries, many of
these advances are being reversed because of AIDS. Not just a health
problem, AIDS in .Africa has become a full-blown development
catastrophe.
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Few expected the AIDS epidemic to be even more devastating
than the estimates predicted. In 1991, it was estimated that by the end
of the decade, 9 million people would be infected and 5 million would
die in sub-Saharan Africa because of AIDS. By the end of the decade,
figures were nearly triple those predicted: some 24 million infected, and
13.7 million dead. In 1999 alone, there were around 4 million new
infections in sub-Saharan Africa. The speed, spread and scope of the
epidemic is unprecedented in modern times.
AIDS has become part of everyday life in Africa. It turns young
sons and daughters into orphans, kills parents in the prime of life, and
saddles grandparents with the dual burden of bringing up babies and
trying to make ends meet without help from their own - now deceased
- children. By threatening a generation of youthful, productive people,
the disease is mortgaging the continent's future.
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INTENSIFYING NATIONAL EFFORTS
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To move the fight against the epidemic forward, .African
governments are intensifying their efforts and contributions. But with
limited resources, they cannot be expected to turn the tide on their
own. The Partnership, through its international outreach and visibility,
provides swift and focused assistance - in other words, more resources,
more expertise, and more alternatives. Through advocacy and
mobilization involving all sectors of society at the highest level, it
encourages governments, business and multilateral agencies to
increase their resources to fight AIDS, either by reorienting or
improving the way they use existing funds, or by seeking new funds if
needed. The Partnership provides that extra push, the spark needed to
assist countries in moving their programmes forward.
The Partnership’s key role is at country level. It supports
strategic plans to fight AIDS, and builds upon what already exists and
works. By replicating proven successes, the Partnership helps channel
isolated actions into coherent, cohesive plans. This capitalizes on
individual efforts and avoids duplication, dramatically enhancing thiie
impact of any one action by using it as a foundation for others.
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WORKING AT COUNTRY LEVEL
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Specific goals promoted by the Partnership include:
giving young people aged 15-24 the information and skills they
need to prevent infection;
providing HIV-positive pregnant women with access to HIX’
testing and counselling, and to drugs that can increase their
chances of having healthy babies;
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including people living with HIV/AIDS actively in all aspects of
social, economic and political life;
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furnishing AIDS orphans with the means to grow up and lead
meaningful lives:
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providing Hl\ -positive people with access to care in accordance
with locally established standards;
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ensuring that national and international firms operating in
.Africa are fully involved in the fight against the epidemic;
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encouraging decentralization of HIV7AIDS programmes and
participation of communities;
promoting an end to stigma and discrimination by social and
legal means.
To turn these goals into reality requires not only resources but
fundamental changes and intensified efforts within countries. The
Partnership seeks to strengthen national responses to AIDS and
supports political leaders in continuing to speak out. Most important,
society at large must become involved and this is wtiere the Partnership
can make a difference.
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BREAKING THE SILENCE
The silence and shame surrounding AIDS is slowly changing.
Across the continent, .African leaders are speaking out publicly about
•AIDS, giving it a name. Nations are establishing special task forces or
technical committees on .AIDS at the highest levels of government.
Leaders who until recently denied the epidemic’s very existence have
made dramatic turn-arounds and declared war on it. News of deaths
from .AIDS touches everyone, including political leaders, some of whom
have publicly acknowledged the disease's impact on their own relatives.
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.AIDS has now been recognized at the highest international
political level. It has been discussed at the UN Security Council, the first
time that body has ever taken up a health or social issue. It is also at
the heart of discussions in major global development conferences.
including the World Education
Forum1 in Dakar and recent meetings of
----------the Organization of .African Unity.
These combined public acknowledgements have placed AIDS at
the centre of the development agenda. Not only is the epidemic the
fastest-growing human security issue in .Africa, but it also affects even
facet of social life.
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AFRICA'S ACHIEVEMENTS
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At the outset, the Partnership established a joint framework for
action, which outlines its priorities and how the partners will work
'together. Emphasis has shifted to the country level, where AIDS
prevention and care is being fast-tracked in a dozen nations. Here are
some examples of accelerated action:
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Burkina Faso and Cote d’Ivoire have established a national
solidarity’ fund for HIV/.XIDS with a plan for action.
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Tne Uganda AIDS Commission has announced a five-year
national strategy on AIDS.
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In Ethiopia, five-year national AIDS strategic framework
and regional plans have been elaborated, and a funding
mechanism will be developed soon.
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For the first time in ihana. AIDS had its own heading in the
new budget of early 2000. Also, the country's ministry of
education has set up a task force to tackle the epidemic in
all education sectors.
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In Sierra Leone, the National. AIDS'Control Programme is
resuming its role and will receive new international resources.
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South .Mrica has launched a new initiative, the South African
Business Council on HIV/AIDS. to act as a clearing-house for
programmes on AIDS in the workplace.
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Delegates from .Xngola, Mozambique and Namibia have met
with counterparts in Brazil and will collaborate in several
areas.
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A round-table discussion in Malawi with key partners has
yielded unprecedented success in mobilizing new resources.
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Tanzania has integrated MDS into its major development
strategies, including the Enhanced Heavily Indebted Poor
Countries (HIPC) initiative and the Social Development Fund.
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On the ground, African communities have repeatedly
demonstrated they can respond effectively to the epidemic. The
international community must support them, and society as a whole,
should get involved in fighting AIDS.
Here are some examples:
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In Malawi and Zambia, a pilot project places HIV-positive
people in jobs where their presence helps bring AIDS out into
the open.
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In Kenya, local sports associations promote healthy living
and safe sex.
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In Cameroon, Senegal, Uganda and Zambia, religious
institutions incorporate information about AIDS prevention
into their spiritual teachings.
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THE INTERNATIONAL PARTNERSHIP AGAINST AIDS IN AFRICA
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In South Africa and Zimbabwe, community' groups provide
affordable and equitable home-based care to HIV-positive
people.
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Across West Africa, a special initiative on migration in
17 countries helps sex workers and their clients become
less vulnerable to HIV.
The response to AIDS in .Africa has moved to a new level, and
commitment to maintaining that momentum has strengthened. For two
decades, the world has fought .AIDS and these years have yielded a body
of knowledge we can now build upon. We know what works and what
does not. The Partnership, by bringing different social sectors together
and working collectively for the benefit of Africa, will make sure that
lack of resources and fragmentation of efforts no longer stand in the
way of advances.
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Copies mav be obtained from the UNAIDS Information Centre or accessetl directly
on our Web site (see below).
UNAIDS/00.11E (English original) May 2000
© Joint United Nations Programme on HIV/AIDS (UNAIDS) 2000. All rights
reserved. This document, which is not a formal publication of UNAIDS, mav
be treely reviewed, quoted, reproduced or translated, in part or in full, pro
vided that the source is acknowledged. The document may not be sold or
used in conjunction with commercial purposes without prior approval from
UNAIDS 'contact: UNAIDS Information Centre).
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.
.
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UNAIDS, 20 Avenue Appia, 1211 Geneva 27, Switzerland
unaids@unaids.org
www.unaids.org
telephone: +41.22 791 4651 telefax: +41 22 791 4187
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Enhancing the
Greater Involvement of People
Living with or affected
by HIV/AIDS (GIPA)
in sub-Saharan Africa
A UN response:
how far have we gone?
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Table of Contents
Historical context
4
Why the initiative ?
7
The UNV pilot project to support people living with HIV and AIDS
7
Phase 1 - Selecting pilot countries
10
Phase 2 - Launching the project in the two selected countries
11
Phase 3 - Designing a monitoring and evaluation framework
12
Phase 4 - Selecting candidates for NUNV posts and identifying
future training needs .......................................................................
12
Phase 5 - Capacity building
13
Phase 6 - Translation of the monitoring and evaluation framework
into an operational tool for day-to-day management......................
15
UN support to GIPA in South Africa
17
Enhancing the Greater Involvement of People Living with oi affected by HIV/AIDS (GIPA) in sub-Saharan Africa.
A UN response: how far have we gone?
Historical context
By June 2000, the number of people living with HIV worldwide had
grown to 34.3 million, according to the Joint United Nations Programme on HIV/
AIDS (UNAIDS) and the World Health Organization (WHO). Of this total, over
two-thirds resided in sub-Saharan Africa—a region with only a tenth of the world's
population. Nearly 14 million adults and children have already died of AIDS
since the beginning of the epidemic in the late 1970s. Moreover, during 1998, it
is estimated that 11 individuals around the world became infected every minute.
The worldwide response of individuals and communities to the epidemic
has been encouraging. With courage and compassion, they have mobilized
resources to care for and support those affec ted and to assist others in remaining
uninfected. Particularly striking has been the' role' of people living with HIV and
AIDS (PWHA) who, within a short period of lime, have given a human face to the
grim statistics. (Sec' Box 1 for definitions of terms used in the' pilot projects.)
Although only a small percentage’ of persons living with or affected by
HIV/AIDS have come out in the open, dec laring their serostatus or the fact that
they have been personally affected, those who have done so have been powerful
catalysts in the subcontinent. The musician Philly Lutaaya is a good example of
an individual who has made an impact and his message of behavioural change
and hope reverberates across the continent in his song, Alone and Frightened. At
the regional level, the voice of PWHA has been heard during the International
Conferences on AIDS and STD in Africa (ICASA), held in 1995 in Kampala, and
in 1997 in Abidjan. PWHA can provide important insights into how to address
problems, how to strive' for positive living and how people c an be empowered
through the trauma and tragedy of the' epidemie .
However, in many sub-Saharan Atri< an ( ountries, an environment
c harac leri/ed by high levels ol deni.il, fear, and sligm<ili/<ilion has undermined
the involvement of those living with or affected by 11IV and AIDS. Even whc'n the
political, legal and social environments are conducive, the participation of those
living with or alfected by HIV and AIDS is seldom reflected in the formulation of
national policies and programmes. Although the reasons for this vary from country
to country, a certain pattern emerges. First, there is an absence of appropriate
mechanisms to ensure that the. experiences, perceptions and capacities of those
living with or affected by HIV and AIDS are expressed, valued, understood and
taken into consideration in the development of policies and programmes. Second,
even when an appropriate forum is provided, individuals living with or affected
by HIV and AIDS often lack the skills required to engage institutions and
governments in policy dialogue. Third, many individuals living with or affected
by hl IV and AIDS are not in gainful employment, and arc' therefore' too
economically weak to engage' in any serious discourse. Fourth, even when they
arc' employc'd, the' kinds ot institutions they work lor are unlikely to generate and
initiate' polic y c hange's.
Ihese issues were reflected in one ol the major outcomes of the Paris
AIDS Summit for Pleads ot State, held on I Dec ember 1994, where' governments
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UNAIDS
from over 50 countries called for increased support for PWHA. Participants
resolved that the principle of greater involvement of people living with HIV and
AIDS (GIPA) was critical to an appropriate, ethical and effective national response
to the epidemic. They agreed to: "Support a greater involvement of people living
with HIV/AIDS through an initiative to strengthen the capacity and coordination
ot networks ot people living with HIV/AIDS and community-based organizations."
Box 1: Definitions and concepts as derived from the pilot projects
Individuals living with and affected by HIV/AIDS
The experience of implementing pilot projects in two
countries—Zambia and Malawi—suggests that restricting
participation to those who are seropositive eliminates critical
parties who have experienced HIV and are committed t<!)
making a difference. For example, the experience of the many
HIV-negative parents who have provided care to their HIV
positive children could facilitate an understanding of how
households cope. The experience of the increasing number
of discordant couples presents a unique opportunity for people
to see that HIV affects ordinary people and, therefore, to
encourage the acceptance of the problem within communities.
During the recruitment process in Zambia and Malawi, it was
also noted that there are many people outside the current
networks of people living with HIV/AIDS who are prepared to
use their experience without revealing their serostatus. Based
on the understanding derived from such examples, an
'individual living with and affected by HIV/AIDS' can be defined
as any person who is either HIV-t- or has direct personal
experience with HIV/AIDS and is committed to sharing their
experience with others, to ensure an- appropriate national
response. An appropriate national response is one that
includes policies, strategies and interventions that respect the
rights and dignity of persons living with or affected by HIV/AIDS.
Giving HIV a 'human face7
In the mid-1980s, as developing countries engaged in •
aggressive economic austerity measures, UNICEF raised
concern that these economic measures were hurting people
in several ways. In their recommendations to the World Bank
and International Monetary Fund, they spoke of structural
adjustment with a human face. In this context, the human
face was meant to reflect the fact that, at the end of the day,
these policies must improve rather than hinder the welfare of
the people. This led to the emergence within the international
5
Enhancing the Greater Involvement of People Living with or affected by HIV/AIDS (GIPA) in sub-Saharan Africa.
A UN response: how far have we gone?
community of various projects intended to ameliorate the
effects of the austere programmes. In the context of HIV, the
issue of 'human face' goes beyond welfare to include the
experience of those affected—their joys, sorrows, sense of
identity and their need to be accepied as part of the community.
Giving HIV a human face therefore includes the individuals
affected showing the rest of the world that, beyond the grim
statistics, are humans—mothers, sons, daughters, nieces,
nephews, grandmothers and grandfathers who aspire to living
a full life.
Although the GIPA mandate has been generally accepied by a 11 ( ounlries,
there are still very few successful initiatives under way. Part of the reason for this
has been the absence of demonstrated mechanisms for implementing the GIPA
mandate. In an effort to address this gap, a collaboration was established among
United Nations Volunteers Programme (UNV), United Nations Development
Programme (UNDP), The Network of African people living with HIV/AIDS (NAP+)
and the Joint United Nations Programme on HIV/AIDS (UNAIDS) to pilot a GIPA
initiative in selected African countries.
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UNAiL
Why the initiative?
The initiative was deemed necessary for the following reasons: first, to
provide the required social setting for dialogue on issues related to HIV/AIDS
with those who are affected; second, to allow for the expansion of the national
response by involving individuals whose representation has, until now, not been
fully recognized (such as parents who are HIV-negative but have nursed an adult
child who is HIV-positive, or families wherein one of the partners is HIV-negative);
third, to give a human face and voice to the current statistics of HIV/AIDS; fourth,
to facilitate the acceptance of the presence of HIV/AIDS in the community; and
fifth, to improve the economic status of those living with and affected by HIV/
AIDS.
Using a participatory approach to design the project, a consultative
process was initiated early in 1995 and preparatory studies were carried out to
examine the impact of employing HIV-infected individuals in the insurance sector.
The final outcome of this process was a project document entitled, "UNV project
to support people living with HIV and AIDS". The project was approved in
September 1996 with funding from the Special Voluntary Fund (SVF) and UNDP.
Two countries—Malawi and Zambia—were selected to implement a two-year
pilot project whose main purpose was to test the use of the national United
Nations Volunteer (NUNV) modality as a possible mechanism for enhancing the
greater involvement of individuals living with or affected by HIV and AIDS in the
national response. The project was launched during the second quarter of 1997
and it is being implemented with technical and financial support from UNAIDS
and the UNDP Regional Project on HIV and Development for sub-Saharan Africa,
which is based in Pretoria, South-Africa.
The UNV pilot project to support people living with
HIV and AIDS
Objectives
The long-term objectives of the project are to deepen understanding of
the nature of the HIV epidemic and to strengthen the national capacity to respond
effectively, through the involvement of people affected by the epidemic. Specific
key objectives include:
•
•
ensuring that the knowledge and expertise of people infected
and affected by the epidemic contribute to decision-making
at all levels and in all relevant institutions, and that their needs
and insights are reflected in policy and programme
development;
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strengthening the capacity of networks and organizations of
those living with HIV.and AIDS for strategic planning and
programme management;
7
Enhancing the Greater Involvement of People Living with or affected by HIV/AIDS (GIPA) in sub-Saharan Africa.
A UN response: how far have we gone?
encouraging recognition of the potential role of volunteers
and volunteerism in the national response to the HIV epidemic.
Strategic approaches
To achieve these objectives, the project is adopting the following key
strategic approaches:
a) Placement of NUN Vs in carefully selected local institutions—both
public and private—that are involved in HIV and AIDS prevention, care and
support activities (see Box 2 for examples).
Box 2: Examples of NUNV placement in Malawi
Heatherwich CHISENDERA
Three times a week, Heterwich shares his experience of living
with HIV/AIDS with patients and their escorts at the outpatient
waiting room of the 1000-bed Lilongwe Central hospital. He
is one of the volunteers placed at the hospital as a counsellor.
His primary role is to add value to the HIV/AIDS efforts,
activities and programmes of this hospital by giving a human
face and a voice to HIV/AIDS for the staff, inpatients,
outpatients and caregivers. He normally concludes the sharing
of his testimony by saying, "If you have any questions you
need to ask, or some issues you want to discuss with me,
please come to the counselling room any time." Since his
placement, there has been a steady increase in the number
of people seeking help and support. The number of clients
counselled and tested increased from 36 per month in March
1998, to 87 per month in October 1998. Because of the
increasing number of people seeking support, the hospital
has now designated every Tuesday as HIV/AIDS clinic day.
Chrissie MILEMBE (RIP)
The impact of Chrissie's testimony can be seen in the reaction
of her audience. People were quite attentive as she talked
about her life, how she felt and the way people reacted when
they learned of her HIV status. "People used to tell me that I
am a walking corpse, but let me ask you, zHow would you
feel if somebody told you that?7"
Chrissie, a National United Nations Volunteer, had been
placed at the Lilongwe AIDS Counselling and Education Centre
as a counsellor. She assisted in HIV/AIDS awareness outreach
activities and provision of suppoil to IIIV positive clients. She
also coordinated the activities of people living with HIV/AIDS
in the centre. It was not unusual to find the room completely
8
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silent following Chrissie's testimony. This silence lasted a few
minutes and then there would be countless questions and
consequent discussion. Chrissie would say, "You see, AIDS
affects you and me, and it's you and me who should do
something about it."
b) Capacity-building for NUNVs through training to increase their
knowledge and skills base in areas such as policy analysis and development,
project development, and project/business management.
c) Capacity-building lor representatives of the national network and of
organizations or support groups of PWFIA through training to increase their
knowledge and skills base in areas such as policy analysis and development,
project development, and project/business management.
d)
Establishment of a micro-grants facility to promote and support
community-based initiatives that will arise from the work of the NUNVs, and to
develop and strengthen organizations of PWHA and their networks (see Box 3 for
an example).
Box 3: Facilitating the establishment of income-generating activities
in Zambia
1
Martin CHISULO
As a NUNV placed with the Copperbelt Health Education
Project (CHER), Martin has facilitated the establishment of
support groups and is helping those that were already in
existence but were not progressing well. He is a member of
one of the groups. Through him, this group acquired a building
that has been renovated with support from the Catholic
Church, and a plot of land where members are growing
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vegetables for their own consumption and for income
generation.
Implementation, monitoring and evaluation processes
To ensure long-term sustainability, emphasis is being placed on ownership
by host institutions, the Network of African People Living with HIV and AIDS
(NAP+) and government. A key feature of the project is the elaborate process of
consultation at every major step of its design, implementation and monitoring.
To reflect the consultative process at an institutional level, a governance structure
at global and country level has been put in place. These mechanisms are required
to ensure the participation of all key stakeholders in the development,
implementation and monitoring of the project. The processes defined below
highlight how the consultation has taken place on the ground.
9
Enhancing the Greater Involvement of People Living with or affected by HIV/AIDS (GIPA) in sub-Saharan Africa.
A UN response: how far have we gone?
Phase 1 - Selecting pilot countries
It was considered important to test the feasibility of using the UNV
mechanism to promote GIPA in countries with a mature epidemic and relatively
mature response. A preliminary review of documents and discussions resulted in
a shortlist of four countries, agreed upon during a joint UNAIDS/UNDP/UNV
meeting, which took place in Geneva, 24-25 October 1996. Thereafter, an
assessment mission supported by UNAIDS was carried out in the four short-listed
countries (26 October-30 November 1996). A combination of key informant
interviews and group discussions with potential stakeholders was the modus
operandi for the assessment mission. Although there was variation between
countries, in general the following potential stakeholders were consulted: national
support groups and networks of PWHA; National AIDS Control Programmes;
AIDS service organizations; nongovernmental organizations (NGOs); UN Theme
Groups on HIV and AIDS; and donors. Each of these groups was given the
opportunity to participate in the initiative. Two English-speaking countries were
selected, based on pre-set criteria. Using the pre-set criteria, the meeting held in
Geneva, 5-6 December 1998, agreed that the piloting would be carried out in
Malawi and Zambia. With the country selection process completed, two Country
Project Coordinators (CPC) were recruited and placed in Lilongwe and Lusaka
(see Box 4 for the job description).
Box 4: Job description for Country Project Coordinators
To manage the day-to-day operation of the project in the
country of assignment.
To assist in the negotiations, selection and placement of
the NUNVs in insfitutions/organizations.
•
To support training of the national UNVs (NUNVs)—both
formal and on the job—and provision of other forms of
support for skills development.
•
To work closely with and coordinate all necessary activities
among the responsible national bodies/mechanisms,
UNDP, UNV, nongovernmental organzations (NGOs),
community-based organizations (CBOs), and NAP-1-.
To ensure the access of NUNVs to appropriate peer
support, counselling and supportive services.
To provide appropriate guidance and support to the UNVs.
To assist in developing policies and strategies relating to
disclosure, confidentiality, and public profile of the NUNVs.
10
UNAID.
•
To appraise the performance of the NUNVs and provide
feedback and of the NUNVs and performance appraisal
of the NAP 4-.
•
To administer the small grants component of the project.
•
To carry out on-going assessment and refinement of the
pilot project and drawing-up/sharing of lessons.
•
To work closely with all parties involved in the project
formulation, implementation, monitoring and evaluation.
Phase 2 - Launching the project in the two selected countries
In the spirit ot consultation, the launching of the pilot initiatives in the
two countries involved planning workshops (sec1 Box 5 for the aims and objectives
ol the' workshops).
Box 5: Aims and objectives of the consultative and planning workshops
The workshops were intended to provide an appropriate
launch for the project by bringing together a large number of
stakeholders in each country, thereby making the process as
inclusive as possible. The specific objectives of the workshops
were as follows:
(a)
to reach consensus and common understanding on the
aims and principles of the pilot project;
(b)
to identify mechanisms for project implementation,
including selection and recruitment criteria of the national
UNVs, their placements within institutions such as CBOs,
NGOs, and ministries, training needs and methodologies,
and support and supervision;
(c)
fo discuss aspects of project monitoring and evaluation;
(d)
to agree on an action plan for the way forward.
a
The Malawi workshop was held in Lilongwe, 27-29 May 1997, and the
Zambia one in Lusaka, 2-4 June 1997. Participants included representatives from
support groups and national networks of PWHA, AIDS service organizations,
NGOs, NGO umbrella organizations, government ministries and cosponsors of
UNAIDS, as well as resource persons from such organizations as the Faces Project
from South Africa, the Philly Lutaaya Initiative from Uganda and NAP+. The
11
Enhancing the Greater Involvement of People Living with or affected by HIV/AIDS (GIPA) in sub-Saharan Africa.
A UN response: how far have we gone?
results of both workshops were similar. A consensus was reac bed on the purpose
and basic principles of the pilot project and on the selection criteria for NUNVs.
Mechanisms were identified for implementation, including placement within host
institutions and supervision methods. Training needs were also identified, along
with potential resources for training in and outside the country. Finally, participants
at each workshop came up with a three-month action plan to be carried out by
the UNV Project Manager, with the assistance of a Project Advisory Group (PAG).
Phase 3 - Designing a monitoring and evaluation framework
The uniqueness of the design of this pilot initiative was the participatory
development of a monitoring and evaluation framework. A technical mission
visited both countries and worked with the project s main stakeholders to develop
three major elements of the initiative: i) a monitoring and evaluation framework;
ii) a process that will enable those involved to identify and meet the training and
support needs of the Project; and iii) a decision-making process for the use and
monitoring of the project's micro-grants facility.
Using the process facilitation approach as outlined in the UNDP manual,
the facilitators worked with key players to achieve the following outcomes:
i)
a Monitoring and Evaluation Framework for each country;
ii)
Guidelines for the Management and Operations of the Micro
Grants Facility;
iii)
a document on Training and Support Strategies, including checklists
for follow-up activities.
Phase 4 - Selecting candidates for NUNV posts and identifying
future training needs
To facilitate the selection of NUNVS, a joint UNAIDS/UNDP mission
was carried out in Malawi, 25—31 January 1998, and in Zambia, 31 January—8
February 1998. This mission was a follow-up to a meeting of the International
Technical Advisory Group (ITAG) held in Abidjan, Cote d'Ivoire, 11 December
1997. The terms of reference for the mission are detailed in Box 6. The selection
process used a workshop modality to provide 'safe spaces' for potential NUNVs
and host institutions to reflect upon their expected roles and responsibilities within
the project, to belter facilitate their informed decisions about their participation
in the project and to define an objective framework for selection of the first group
of volunteers to be recruited by the project. Specific objectives of the workshops
were for the participants to: i) share their understanding of the project mission
and proposed strategy, as well as their roles and responsibilities; ii) express their
vision, hopes and tears regarding their roles and the c one ept of volunteerism; iii)
clarify myths and misinformation about the project; iv) discuss and reflect upon
the implications of being open about their serostatus (on self, family and
community); and v) understand tlie minimum c riteria for selec tion of the' first
group of volunteers and define areas where the other candidates could contribute
to the project.
12
UNa
Box 6: profile and duties of the NUNVs
Although their job titles vary, their primary function at these
institutions is to give HIV/AIDS a human face and voice by
sharing their experience of Living with HlV/AIDS, providing peer
education or counselling and where possible by initiating
discussion/support groups for PLWA. It is expected that the
activities of the NUNVs would encourage the development/
enhancement of HIV/AIDS activities, programmes and policies.
The volunteers' activities have been categorised into tour areas:
Sharing of experience with various staff and
management within the host institution;
ii)
Individual discussions/counselling within the host
institutions. These are the one-to-one sessions which
Volunteers have at the work place with staff;
iii)
Out-reach activities: This refers to Sharing experiences
qand performing HIV/AIDS awareness activities outside
the host institutions e.g residential quarters, churches
and at community events.
iv)
Other activities. These activities are not related
to sharing experience but are carried out by the NUNVs
as in the case of Volunteers with additional
responsibilities.
In both countries, the main outcomes were: i) a greater understanding
of the project's vision, mission, and proposed strategies, of the roles and
responsibilities of each partner, of the concept of 'coming out in the open', and
of the selection criteria for NUNVs; ii) a strengthened commitment to the objectives
of the project; and iii) the completion of the selection process for NUNVS and
host institutions. (See Box 7 for an example of the experience of a host institution
with the placement of an NUNV)
Phase 5 - Capacity building
The fifth phase of the project's implementation involved training for the
NUNVs, their counterparts in host institutions and representatives of various
support groups and networks of PWHA. Following the Self-reflection and Selection
Workshops, the following training needs were identified: a) HIV and development
(broaderuunderstanding of the epidemic); b) public speaking and media
approaches; c) communication skills (including interpersonal skills and team work);
d) peer counselling skills; e) writing skills (including reports, project proposals,
record keeping); f) micro-project financing (including formulation, monitoring
and evaluation); and g) setting up and sustaining support groups.
13
Enhancing the Greater Involvement of People Living with or affected by HIV/AIDS (GIPA) in sub-Saharan Africa.
A UN response: how far have we gone?
Box 7: Experience of a host institution with the placement of an NUNV
The Copperbelt Health Education Project (CHEP)
CHEP is an NGO that is involved in the provision of
Information, Education and Communication (IEC). Its target
audience is the general public and, in particular, the vulnerable
groups within society. It provides training to improve services,
create a supportive environment, improve counselling services
for PWHA and promote appropriate low-risk sexual behaviour.
1
Before its involvement with the GIPA pilot project, CHEP had
both positive and negative experiences while working with
PWHA, and the decision to have a PWHA working as an NUNV
was informed by these experiences. The first thing CHEP
management did was to appoint the new NUNV as
Coordinator of PALS programmes, in order to give him greater
responsibility and to broaden its own perception of the
involvement of PWHA in HIV/AIDS activities.
!
CHEP was responsible for providing orientation for the NUNV
in its ten districts to help him familiarize himself with the
province and to understand the problems facing those living
with HIV/AIDS. CHEP has helped the NUNV to form five
support groups, which have regular meetings, and to
participate in Radio Ichengelo—a community station and
television. CHEP has also funded three workshops in which
the NUNV has been a resource person. Finally, as an
organization, CHEP has taken its own initiative to give four
support groups an amount of K250,000 (Zambian kwacha)
to boost income-generating activities.
■■
!
In spite of this, CHEP continues to face some challenges in
promoting the greater involvement of PWHA in the fight
against HIV/AIDS. These are: (a) the failure to provide
adequate medical assistance for support group members; and
(b) the increasing number of deaths among support group
members, which has a negative effect on other members and
on the project (e.g. greater contributions expected from the
project in terms of funeral arrangements).
I
14
■‘■''’Vf .'i
UNAIL.
In response to this, successtul HIV and Development Workshops and a
j^'l!s!tTp1P3U1i8 .Workshop have been hqldd^amb^, .in, April and October 1998;
Malawi, in September 1998). The Skills Training Workshop included sessions on
the basic tacts about HIV and AIDS, peer counselling, basic nursing care,
nutritional care, advocacy for ethics and human rights, communication skills,
group formation, report writing and record keeping, project proposal writing and
stress management.
Phase 6 - Translation of the monitoring and evaluation framework
into an operational tool for day-to-day management
The framework for monitoring and evaluation which was developed
requires further operationalization. Terms of reference have since been developed,
especially for the special studies, and both countries are at the stage of
implementing the evaluation framework.
Lessons learnt
In order to inculcate a systematic process of learning at global and country
level, a joint UNAIDS/UNDP/UNV meeting was held in Bonn, 6-7 April 1998, to
go over the experiences gained during the 18 months of the pilot initiative design
and implementation.
On the selection of countries
The following were the key lessons that emerged in Phase 1 of the
implementation of the pilot initiative in Zambia and Malawi:
(a)
Consensus-building around key concepts and operational
modalities is critical to the success of the initiative.
(b)
It is necessary to establish a shared understanding of HIV and
development. The assumption that stakeholders have a working knowledge of
the broader developmental dimension of HIV is not valid. During the consultative
and planning workshops, some of the stakeholders were not even convinced of
the seriousness of the HIV epidemic in their countries. In future, consultative and
planning workshops should aim to give all the project's stakeholders the opportunity
to reach a shared understanding of the HIV epidemic and its consequences. This
would facilitate discussions on selection criteria for the recruitment of NUNVs,
and on the roles and responsibilities of host institutions and NUNVs. The use of
tools such as the HIV and development workshop before the consultative and
planning process would address this problem.
(c)
The facilitators should challenge selection criteria proposed during
these workshops which may prevent potentially good candidates from being
recruited as NUNVs on the basis of, for example, their literacy level or their
ability to communicate in the official language (e.g. English). In one country,
such criteria have prevented good candidates (especially women) from being
selected.
15
Enhancing lhe Greater Involvement of People Living with or affected by HIV/AIDS (GIPA) in sub-Saharan Africa.
A UN response: how far have we gone?
On developing a monitoring and evaluation framework
The monitoring and evaluation frameworks for both countries were
derived directly from the project document and are therefore a good reflection of
the project's goals and objectives. As indicated above, they were developed with
the participation of many stakeholders, but before the selection and placement of
the NUNVs. However, the job descriptions of the NUNVs seldom reflect the
monitoring and evaluation framework. Moreover, in one country, none of the
job descriptions outlined the major function of the volunteer as that of "giving a
human face and voice to the HIV and AIDS epidemic."
In addition, the effective use of the monitoring and evaluation framework
has been hampered by the fact that in neither country was a baseline assessment
conducted at- the start of the project. Finally, the framework for each country
does not include simple monitoring targets, indicators and tools, which now
need to be developed.
On the selection of candidates
The Self-reflection and Selection Workshop, whose main objective was
to give an opportunity to candidates to reflect on what it means to talk publicly
about their HIV status and their personal experience, was quite stressful for
participants. Nonetheless, it was felt that this process was necessary, since future
NUNVs would be required to be fully 'open' about their own HIV status, or
about how they and their family have been affected by HIV and AIDS.
There had also been an assumption that there would be a strong feeling
of Togetherness' among the members of a particular support group. It was expected
that the group would take pride in, and support, the rec ruitment of one or two of
its members and that the' NUNVs would be regarded as ambassadors of the group
in whatever role they were placed. However, this did not prove to be the case
and the problem of competition arose several times.
Methods should be found to minimize the stress induced by the exercise.
Possible methods include shortening the selection process, and emphasizing the
fact that the recruitment of ten (or more) NUNVs is only one aspect of the strategy/
, activities implemented by the project in the country. For those not selected during
the first round, the project will provide the following opportunities: i) access to a
micro-grants facility (for capacity building, income.generating or networking
activities initiated by their support group); ii) participation in 'generic' training
workshops; and iii) the possibility of being recruited during the second (or third)
year.
On the micro-grants facility
The micro-grants facility was established in order to help achieve the
projects objectives. In accordance with the^e objectives, funding made available
under the micro-grants fac ility c an be a( (('ssc'd loi the purpose of: «i) promoting
and supporting community-based initiatives that have arisen from the work of the
16
UNAIDS
NUNVs; or b) developing and strengthening PWHA organizations and their
networks. Eligible activities may fall into any of the following categories:
community group and workplace disc ussions; capa( ity-building a( tivities for the
volunteers' own support groups; networking; legal assistance; training lor members
of community-based groups and PWHA organizations (e.g. public speaking,
communication skills, skills training, counselling, psychosocial support, homeand community-based care, programme development, monitoring and evaluation,
proposal and report writing); income-generating activities (including for survivors);
psychosocial support (e.g. counselling, care for support group members and their
families).
Although funds were put in place at the beginning of the project, more
than 18 months passed before a few proposals submitted by PWHA support groups
and NUNVs were finally screened and approved in Zambia. This experience has
demonstrated the need for technical input from the project's management team
and advisory group. It is felt that skills training on project and proposal writing
should have taken place at an earlier stage in the implementation of the project.
On training
The IIIV and development workshop proved to be a very powerful tool
for bridging the knowledge and attitudinal gaps identified among the various
stakeholders of the projects. As already mentioned, however, this workshop should
have been conducted much earlier in the consultative process in order to provide
an in-depth understanding of the epidemic as a foundation for all subsequent
stages of the process. There is also a need to modify some of the content and
exercises used in the workshop to improve their tone and make them more user-
friendly.
The skills training programme that was organized as a one-week
workshop has now been developed into a draft curriculum. This draft will be
further refined in the expansion of the project to French-speaking Africa. A week
of discussions was held between two of the experts who had conducted the
training in both pilot countries. These discussions were aimed at assembling the
different components into one draft. It was decided that the curriculum should be
packaged in two portions: the workshop portion and the 'on the job' support and
supervision of the development of specific skills (e.g. peer counselling,
communication and public speaking, report writing, and support group formation).
Most of these skills require practice and close supervision if they are to be mastered.
On the concept behind the pilot project
The overall aim of placing volunteers with host institutions is to give a
human face and voice to HIV and AIDS. This human face and voice can be
demonstrated within the workplace, and through the services offered by the host
institution to its target group(s). Importantly, the volunteer must not merely be
seen as just an additional employee, but as one who adds value by virtue of his
experience of living with or being affected by HIV/AIDS.
17
Enhancing the Greater Involvement of People Living with or affected by HIV/AIDS (GIPA) in sub-Saharan Africa.
A UN response: how far have we gone?
However, 18 months after launching the project, it seems that some
host institutions, despite all the consultation processes put in place, still consider
the volunteers as just an additional pair of hands. Moreover, it has been reported
in some instances that some volunteers regard it as a violation of their human
rights for the project to expect them to share their personal testimonies in the
course of their work.
This is a delicate issue since it is true that no one has the right to require
another person to disclose their serostatus if they do not wish to do so. However
the requirement to 'be open' was explicitly included in the selection criteria and
a very elaborate process was instituted to ensure that those who were selected as
volunteers understoocJ that they would need to use their experience as PWHA in
doing their work. This creates an awkward situation, resulting in frustration and
I
resentment among those who were not selected among the first round of volunteers
and may consider themselves better qualified because of their openness about
their HIV status.
The networks of PWHA, both at national and regional level, who are
full partners of this pilot initiative, are in the best position to legitimately resolve
this dilemma. In the future, appropriate mechanisms should be put in place to
give their representatives more influence in the selection process.
ON support to GIPA in South Africa
Context
South Africa has one of the fastest-growing epidemics in the world.
Over three million people are currently infected with HIV, yet the epidemic remains
almost silent and faceless. The levels of discrimination and social stigma are
unacceptably high and people continue to live under a conspiracy of silence.
The National AIDS Review of 1997 recommended that greater involvement of
PWHA was crucial for effective 11IV prevention and management. On the basis
of this, the National AIDS Plan identifies GIPA as one of the key components for
managing the epidemic in South Africa. The need for capacity building to enable
PWHA to fulfil this role efficiently has been identified and training programmes,
such as those included in GIPA, are crucial in addressing this.
Project development
Rapid Assessment
lii January 1997, th<* UNAIDS lnl(‘i-( ountry Team, together with UNV
South Africa, convened a meeting with partners from the Department of Health
and the National Association of People Living with IIIV/AIDS (NAPWA) to explore
the scope of developing a National UNV project similar to the pilot projects in
Zambia and Malawi. Following this meeting, it was agreed that, in order to get a
18
UNAIL-.
I
better and deeper understanding of the issues around GIPA and to avoid replicating
existing efforts, a rapid assessment should be undertaken. Two independent
consultahts (one a PWIIA) partic ipated in the National AIDS Review in July 1 997.
They also visited and interviewed representatives from a range of public and
private sector organizations to assess the need for such a project and inform the
design and modality of the project management. As a strategy for expanding the
response, the consultants were required to actively explore the role and interest
of private sector organizations to participate in such a project.
The rapid assessment confirmed that while some progress has been made
in the involvement of PWHA, the epidemic remains largely invisible in South
Africa. The environment is not conducive to people disclosing their HIV status
because of the fear of rejection. NGOs that do work with PWHA find that their
contributions are not sustained because of a high 'burn-out' factor. Workplace
HIV/AIDS programmes have not always been effective because people do not
see the epidemic as real if they have never seen an infected person.
Planning/consultative meeting
Following the three-month rapid assessment, the UN hosted a one-day
planning/consultative meeting. The purpose of the meeting was to flesh out issues
pertaining to roles and responsibilities of the project partners, criteria for
recruitment and selection of GIPA Field Workers (GFWs), and operational and
management issues. The meeting was attended by representatives from government
(Department of Health), NGOs (AIDS Consortium, NAPWA, Wolanani, NACOSA),
partner organizations (Lifeline, South African National Defence Force (SANDF),
Religious AIDS Project) and UNAIDS (WHO, UNDP, United Nations Population
Fund, UNV).
Project purpose
Following the planning/consultative meeting, a project document was
drafted for funding and approval. The purpose of the project was then defined as
being that of: (I) mobilizing the private sector to put in place effective, nondiscriminatory HIV/AIDS workplace programmes and policies; and (2)
strengthening existing national programmes that involve PWHA.
To fulfil this purpose, the project is placing people living openly and
positively with HIV/AIDS in partner organizations to assist with work-based HIV/
AIDS policies and programmes.
Project management
Implementation arrangements
A National Project Manager was recruited in March 1998 and a Steering
Committee and Advisory Board were established.
19
Enhancing the Greater Involvement of People Living with or
affected by HIV/AIDS (GIPA) in sub-Saharan Africa.
A UN response: how far have we gone?
Recruitment and selection of GFWs
One of the essential criteria for the GFWs agreed to by the Advisory
Board was the need and importance of all candidates to be HIV-positive and
willing to be open about their status. Other requirements included having good
organizational, verbal and non-verbal communication skills, willingness to be
trained, minimum educational qualification of Standard 10 and ability to work as
a member of a team. The advertisement for the recruitment of the GFWs was
placed in two national newspapers and circulated widely to partners. Following
the receipt of approximately 100 application forms, 20 candidates were invited
to an intensive two-day Selection Workshop.
The workshop was structured to determine whether the individuals
fulfilled the stated requirements, as well as to promote self-growth and personal
development. A highly participatory and experiential methodology was selected
instead of straight interviews, since a workshop provides more time for assessing
applicants' strengths and weaknesses. It also provides a better insight into how
applicants handle themselves in different situations. The various activities were
selected with the aim of being informative, educational and personally
empowering.
At the end of the weekend, a total of 12 candidates were selected as
GFWs. In addition to the selection process for GFWs, the workshop was attended
by guest participants from Mozambique and Swaziland who used the opportunity
to become sensitized to the GIPA principle and to get motivated to kick-start
similar processes in their own countries.
Achievements
Placement of GFWs in partner organizations
Since the selection workshop, GFWs have been placed in partner
organizations. These include our government partner the Ministry of Health, private
organizations (Eskom Electricity Commission, Super Group Pty Ltd, Imperial
Transport Holdings, Sowelan Newspaper, Lonrho Platinum Mines and Transnet),
and NGOs (Lifeline and A.M.E. Church) (see Box 8 for an example of GFW
placement in a partner organization).
Box 8: Example of placement of a GFW in a partner organization
Martin VOFLOO (Eskom South Africa)
Liz THEBE, Manager, AIDS Programme, Eskom, said:
"I have been working with Martin since October 1998. We
have held presentations and given talks to more than 700
Eskom employees.
20
UNAi
What I have experienced with him is that he does not blame
anybody for being HIV-positive except himself, and that is why
most people are listening to him and they invite him to come
back again. Most of the people have reported seriously
considering taking responsibility for their behaviour and health
after listening to him. He has an ability to read his audience
and is a powerful and straight-to-the-point speaker.
To have Martin as a white person living openly with HIV has
made a big impact on many of the people in our company.
Most of the whites were thinking of it as a 'black' thing. Some
of the whites were surprised to see him, and now they support
our AIDS programmes.
Some of the construction camps, where they did not believd
that AIDS existed, have changed because of Martin. Most of
the blacks were asking, "Why don't you bring a white person
who is HIV-positive?" Our training programme has gained
credibility and we seem to be reaching more HIV-negative
people with prevention messages, as well as HIV-positive ones
with messages of hope and health. Thanks to the GIPA Project
for bringing Martin to Eskom; it has boosted our AIDS
programme and made a tremendous impact so far."
-■
Training and development
In order for the GFWs to perform their duties effectively and
professionally, a comprehensive training and development programme has been
formulated. The goal is to ensure that, with support and encouragement, each
GFW can develop his or her own potential, on a personal and professional level.
The GFWs have so far received the following training: basic computer skills;
personal empowerment and guidelines to living positively with IIIV, modelled
on the field of psycho-neuroimmunology; communication and presentation skills;
HIV and development; and HIV/AIDS policy and programme development. Further
training in counselling and advanced computer skills is planned to follow soon.
GFWs also participate in various HIV/AIDS projects aimed at raising
visibility and championing the cause of current issues affecting PWHA in South
Africa. They have been involved in the UNDP Human Development Report for
South Africa, the Ster Kinekor movie project, Stepping Stones Gender and HIV/
AIDS training, UNV workshops, and activities with the South African Broadcasting
Cooperation (SABC). GFWs have also assisted with regional workshops organized
by UNAIDS to help kick-start GIPA activities in the region.
21
Enhancing Ihe Greater Involvement of People Living with or a fleeted by HIV/AIDS (GIPA) in sub-Saharan Africa.
A UN response: how far have we gone?
Media exposure
Many of the GFWs have been interviewed by local and international
print and electronic media. Examples of situations where GFWs have spoken
publicly about their HIV status include: World AIDS Day press conference with
Dr Peter Riot; South African Business Council dinner attended by the then Deputy
President, Thabo Mbeki; SABC prime-time slots including the news; and interviews
with various newspapers including the New York Times, Los Angeles Times, and
The Sunday Independent. Participation in radio programmes has been extensive,
with most national radios having had interviews with GFWs.
Future challenges
The main challenge is to sustain the project by continuing to provide
on-going training as well as support for the GFWs in order for them to fulfil their
expected roles. This depends largely on availability of resources.
The South African Business Council is currently being established and it
is hoped that the links with the GIPA project will go from strength to strength. The
training and development programme for 1999 inc luded: on-going skills building;
development of a support system for the GFWs; electronic connectivity; an
advocacy programme; developing participatory monitoring tools; and extending
international opportunities to the GFWs (e.g. the International Conference on
AIDS and STD in Africa, ICASA, and the Global Network of People Living with
HIV/AIDS and International Community of Women Living with HIV/AIDS (GNP+/
ICW+) Conference in Poland.
Lessons learnt
Selection of partner organizations
The rapid assessment process was important as it determined the direction
of the project. One of the difficult aspects of the process was the selection of
partner organizations. In hindsight, more time should have been devoted to
screening the suitability of the organizations identified and interviewed. At least
four-out-of-six original organizations have been considered unprepared or
unsuitable to host a GFW. The intention of expanding the response was not fully
realized and the choice of organizations was very limited in scope. These setbacks
have delayed the implementation and the placement process of the GFWs. More
effort had to be spent finding new partner organizations—a process that is both
very slow and labour-intensive.
Selection of GFWs
A much more intensive reference check is probably necessary to ensure
that the selected GFWs have acceptable records with the communities in which
they have to serve. This might have to be backed up with preparing the community
22
UNA
for the GFW and for talking about HIV/AIDS openly. This should help prevent the
sort of unnecessary hostilities experienced in the past.
Motivation of the GFWs
Il is important to find strategies that can sustain the interest of the GFWs
and provide a certain financial security at the same time. On-going training and
support are crucial for the GFWs to continue operating at the energy levels required.
Following a visit of the UNAIDS Executive Director to UNV Headquarters
in Bonn in September 1997, and a discussion that took place in New York, in July
1998, with the Director of the UNDP Regional Bureau for Africa, agreement was
reached on a number of follow-up actions on future collaborative activities. One of
the follow-up actions was the possible expansion of the pilot project to other countries
in Africa and to other regions. During the Joint UNAIDS/UNDP/UNV Meeting that
took place in Bonn, in April 1998, participants agreed to expand the project,
particularly to French-speaking African countries, using a similar approach and
building on the lessons learnt.
As a result, a new project was designed to further develop appropriate
approaches and mechanisms for enhancing the involvement of individuals living
with or affected by HIV and AIDS in the response to the HIV epidemic. The
proposal outlines an approach based on two separate but related strategies. The
first strategy aims at ensuring, through an appropriate volunteer modality, the
meaningful representation of individuals living with or affected by HIV and AIDS
in key organizations and institutions engaged in the response to the HIV epidemic
I
I
at community, district and national levels. The other strategy aims to strengthen
the capacity of organizations and networks to participate at all levels in the
formulation and implementation of policies and programmes that will create a
supportive ethical, legal and social environment for an expanded response to the
epidemic.
The NUNV modality, as currently being developed and implemented in
Malawi and Zambia, provides an appropriate delivery mechanism for GIPA.
Through this expansion, the NUNV modality and any other appropriate volunteer
modalities will be further tested—this time in countries that are characterized by
a lower HIV prevalence and poorly functioning national organizations and
networks of PWHA. These various volunteer modalities will be considered in
terms of the following questions: a) As currently developed, can they provide the
appropriate space for individuals living with or affected by HIV and AIDS to
influence policy and programming in host institutions, and at national level? b)
Are these different volunteer modalities an appropriate delivery mechanism for
economically empowering individuals living with or affected by HIV and AIDS,
and for strengthening their organizations and networks? c) Is the NUNV modality,
or any other volunteer modality, a feasible delivery mechanism for promoting
GIPA?
23
Enhancing the Greater Involvement of People Living with or affected by HIV/AIDS (GIPA) in sub-Saharan Africa.
A UN response: how far have we gone?
.■
4
Activities to initiate the expansion in two French-speaking countries
were started in February-March 1999. UNAIDS and the UNDP HIV and
Development Regional Project will be involved in the implementation of this
expansion, to an even greater extent than for the pilot phase in Malawi and
Zambia.
The formal 'project' approach of placing individuals living with or
affected by HIV and AIDS is only one approach to GIPA. The projects currently
implemented in Malawi, South Africa and Zambia should provide an opportunity
to review different approaches for enhancing GIPA. To that end, a round table
discussion was held during the Xlth ICASA in Zambia, in September 1999, with
the following theme: "Promoting GIPA in sub-Saharan Africa: what does it mean?
What are the alternatives? Lessons learnt from Malawi, South Africa and Zambia".
This round table was to create space for the sharing of experiences and
lessons learnt from the different approaches to enhancing GIPA, particularly in
sub-Saharan Africa. It was also intended to provide a venue for examining the
following prioritization issues: a) Given the current trends of the HIV epidemic,
should GIPA be considered a key element in the national response to HIV in
sub-Saharan Africa? b) Which mechanism is the most appropriate for promoting
GIPA, given the different political, economic, cultural and social contexts?
I
UNAIDS has made the GIPA principles a part of its policy because it
has now been demonstrated that GIPA is a key strategy in the response at all
levels. A technical consultation on GIPA has taken place and key areas for
action have been determined.
f
Sou I cos: Pr ojecf document RAF/96A/01, UNV, Sept. 96; Monitoring & Evaluation Mission
Report, UNDP, Oct. 97; Self-reflection and Selection Workshops Trip Report, UNAIDS/
UNDP/UNV, Feb. 98; Trip Report on Joint UNAIDS/UNDP/ UNV Meeting, Apr. 98; UNV
SVF and SIDA Project Proposals, UND8 Jun. 98 and Aug. 98; Malawi-Zambia Travel
Report, UNAIDS, Sept. 98.
F’
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24
4
Putting knowledge to work :
Technical Resource Networks for
Effective Responses to HIV/AIDS
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Acknowledgements
This document was written by Olusoji Adeyi, with contributions from David Bridger, Paul Deany,
Richard Delate, Robert Hecht and Sara Kim. Comments on draft versions were received from
Krittayawan Boonto, Laura Borden, Clement Chan Kam, Philippe Gasquet, Bunmi Makinwa,
Meskerem Grunitzy-Bekele, As Sy and Werasit Sittitrai.
UNAIDS/00.47E (English original, December 2000)
ISBN 92-9173-020-3
© Joint United Nations Programme on HIV/AIDS
(UNAIDS) 2000.
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the legal status of any country, territory, city or area or
publication of UNAIDS, may be freely reviewed, quot
of its authorities, or concerning the delimitation of its
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frontiers and boundaries.
ed the source is acknowledged. The document may not
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The mention of specific companies or of certain manufac
es without prior written approval from UNAIDS (contact:
turers' products does not imply that they are endorsed or
UNAIDS Information Centre).
recommended by UNAIDS in preference to others of a
similar nature that are not mentioned. Errors and omis
The views expressed in documents by named authors are
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Telephone: (Ml 22) 791 46 51 - Fax: (+41 22) 791 41 87
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December 2000
Table of contents
Table Of Contents
Acronyms and Abbreviations
3
Summary
4
1. introduction
What is this document about?
1.1.
To whom is it addressed?
1.2.
5
5
1.3.
How is it organized?
5
6
2. Basic Concepts
Definitions
2.1.
Types of Technical Resource Networks
2.2.
Rationale for networking
2.3.
7
7
7
3. What Do HIV/AIDS Networks Do?
10
3.1.
Key functions
10
3.2.
TRNs and knowledge management:
the practice in 'best practice'
4. Developing and Managing Networks
Formation, funding and management
4.1.
Challenges
4.2.
4.3.
5.
An Agenda for Action
References
2
Information technology and TRNs
8
12
14
14
15
16
20
22
' INAIDS
Acronyms and Abbreviations
AF-AIDS
Regional electronic forum on AIDS in Sub-Saharan Africa (English)
CIDA
Canadian International Development Agency
CPAs
Country Programme Advisers (of UNAIDS)
EU
European Union
GLAMS
Latin American Network on Women and AIDS
HIPC
Heavily Indebted Poor Countries
IAEN
International AIDS Economics Network
ICASO
International Council of AIDS Service Organizations
ICTs
UNAIDS' Intercountry Teams
ICT/ESA
UNAIDS Intercountry Team for Eastern and Southern Africa
NGO
Non-governmental Organisation
MTCT
Mother-to-Child Transmission
PLWHAs
Persons Living with HIV/AIDS
RAIN
Regional AIDS Training Network
REDPES
Latin American Network on AIDS and Strategic Planning
SAfAIDS
Southern Africa AIDS Information Dissemination Service
SAFCO
Regional electronic forum on AIDS in Sub-Saharan Africa (French)
SEA-AIDS
Regional electronic forum on AIDS in Southeast Asia and the Pacific
SEAL
AIDS and Economics in Latin America Network
SIDALAC
Regional HIV/AIDS Initiative for Latin America and the Caribbean
STI
Sexually Transmitted Infection
TRN
Technical Resource Network
UN
United Nations
UNAIDS
Joint United Nations Programme on HIV/AIDS
WHO
World Health Organization
3
Summary
Summary
i his document provides guidance to practitioners who seek to improve their
networking skills for effectiveness in HIV/AIDS programmes and to groups of practitioners who
are trying to establish an AIDS technical network in some specific geographical or thematic
area of specialization. The complexity and scale of the HIV/AIDS epidemic have spawned a
number of programmes aimed at influencing the course of the epidemic. There are wide vari
ations in the scope, technical quality and effectiveness of these programmes. Although rela
tively successful efforts have been documented in various forms (including collections of 'best
practices') the adaptation of these success stories has been slow and patchy. Technical Resource
Networks (TRNs) constitute a means of accelerating, in a professional and systematic fashion,
the spread of effective responses to HIV/AIDS. They are groups of individuals, communities,
institutions or governments that work together towards a shared objective in the fight against
AIDS.
Networks assist in building local technical capacity, expanding national and
regional advocacy, sharing of information, building peer support and facilitating collective
action. By improving knowledge, providing support, developing capacity and sharing
approaches proven elsewhere, these networks can both strengthen HIV prevention efforts on
the ground and influence policy development at the regional and national levels. UNAIDS sup
ports these efforts though funding and technical collaboration to improve institutional capacity
in cooperating countries and subregions.
In the near term, UNAIDS will continue to support networking using the follow
ing mutually reinforcing strategies: development of resource materials, expansion of the knowl
edge base, initiation of new networks on priority themes, as well as improved communications
for networking.
4
UNAIDS
1. Introduction
1.1. What is this document about?
T
I his document examines the importance of Technical Resource Networks (TRNs)
in the response to HIV/AIDS and defines an agenda for the rapid development of these net
works. As the epidemic of HIV/AIDS has grown, so have programmes and projects to combat
it. It is striking that there are pockets of excellence in research and programme effectiveness,
but that these pockets are outnumbered by less effective efforts that have much to learn from
the successful responses. Among the low- and middle-income countries, programmes in
Thailand, Senegal and Uganda are often cited as examples of large-scale and successful
efforts to curb the spread of HIV. In other places, programmes of limited scale have recorded
impressive successes, e.g. peer education, condom promotion and treatment of sexually trans
mitted infections (STIs) among sex workers in Nairobi. For the most part, however, individuals
and groups too often work on common problems in isolation from one another. There is a need
to make better use of the knowledge of what works against HIV/AIDS, to increase this knowl
edge base and to share it more effectively and efficiently. In this context TRNs are becoming
increasingly common mechanisms for strengthening and catalyzing national responses to
HIV/AIDS.
This document presents an illustrative framework for understanding how networks
and networking add value to HIV/AIDS activities. It is the lead volume in a planned series of
publications on networks and networking. Subsequent publications will focus on case studies
of specific networks and on tools for networking.
Box 1. Key questions to be addressed in this paper
•
What are Technical Resource Networks (TRNs)?
•
What can TRNs help to achieve?
•
How are TRNs initiated and maintained?
•
How does UNAIDS support TRNs?
•
What are the future roles of TRNs in the response to HIV/AIDS?
$
1.2. To whom is it addressed?
This document is a guide to effective networking for individuals and institutions
working on programmes to reverse the course of the HIV/AIDS epidemic. It is addressed to
programme managers, network facilitators and others interested in expanding the response to
HIV/AIDS, including UNAIDS Cosponsors, non-governmental organizations, bilateral organi
zations and multilateral agencies.
5
1. Introduction
1.3. How is it organized ?
Following this introduction, the basic concepts are covered in Chapter 2. These
include definitions and a typology of TRNs. Chapter 3 is on the strategic basis for networking.
This is followed in Chapter 4 by practical notes on developing and managing networks. In con
clusion, Chapter 5 presents an agenda for the rapid development of effective networks against
HIV/AIDS.
t
6
' INAIDS
2. Basic Concepts
2.1. Definitions
Technical Resource Networks are groups of individuals coming from commu
nities, private institutions and governments that work together towards a shared objective:
to help achieve specified goals and to improve the performance of programmes supported
by network members. Networks can operate at global, regional or national levels. The term
'network' has increasingly been used to describe a range of coalitions and organizations,
which work together in the field of HIV/AIDS. These networks can range from specialized
'think tanks' on different aspects of the epidemic to regional support networks, linking
together people and programmes with shared challenges.
Box 2. Characteristics of Technical Resource Networks
•
Common goals and interests
•
Members (individuals, projects, programmes, research institutions)
•
Regular communications
•
Focus on a specific issue and/or region
•
Coordinating mechanism (secretariat, managing committee)
•
Common workplan and operational budget
Networking involves making contacts and encouraging reciprocal information
exchange, meetings and voluntary collaboration. Networking should encourage and facilitate
the autonomy of colleagues rather than reinforcing dependency associations (Starkey, 1997).
2.2. Types of Technical Resource Networks
TRNs exist in various forms and for a number of purposes. For example, a net
work can cover a particular theme and particular geographic region, such as the newly formed
AIDS Strategic Planning Network in Western and Central Africa. Networks may be classified
according to geographic scope, thematic focus or membership criteria.
Geographic scope. Networks may be at the global, regional, national or sub
national level. In 1999, the UNAIDS Secretariat reviewed a convenience sample of 52 net
works being supported by UNAIDS (UNAIDS, 1999). The results showed that 23 networks
(44.2%) were at the global level; 25 networks (48.1%) at the regional level; 3 networks (5.8%)
at the sub-regional level; and 1 network (1.9%) at the country level.
Thematic networks: These typically address a single subject or group of subjects.
They may be among the core disciplines that underpin responses to HIV/AIDS - for example,
the International AIDS Economics Network and the Reference Group on Estimates and
7
2. Basic Concepts
Modelling of HIV/AIDS. Others include networks of persons working on the prevention of
Mother-to-Child Transmission of HIV and networks on access to pharmaceuticals. Some TRNs
focus on developing practical skills and/or building competencies in specific disciplines.
Examples include the Africa-based Regional AIDS Training Network and the Asian Harm
Reduction Network. Some networks were established primarily to exchange the latest research
methods and findings in HIV/AIDS. These networks include the Reference Group on Estimates
and Modelling of HIV/AIDS, Monitoring the AIDS Pandemic Network, and HIV Virus Isolation
and Characterization Network. Six of the networks sampled by UNAIDS represent inter
agency working groups with varying frequencies of meetings and intensity of activities.
*
Membership. Some networks are closed while others are open. Closed networks
tend to focus on technical subjects of interest to a small number of specialists. An example of
a closed network is the Reference Group on Estimates and Modelling of HIV/AIDS. Open net
works tend to be less specialized. An example of an open network is SAFCO, an independent
public forum on the response to HIV/AIDS in French-speaking Western and Central Africa.
Individuals
wishing
to
join
SAFCO
may
do
so
by
accessing
the
website
"http://www.hivnet.ch/fdp/".
2.3. Rationale for networking
Due to the complexity of the HIV/AIDS epidemic and the differing capacities of coun
tries and institutions to respond to itz there are wide variations in the scope, effectiveness and effi
ciency of responses to HIV/AIDS. Drawing on experiences from around the world, effective
approaches, policies, strategies and technologies are identified as 'best practice' by the UNAIDS
Secretariat and Cosponsors. The process of best practice goes beyond documentation: practices
and lessons learned are promoted and disseminated through the UNAIDS Best Practice Collection,
pilot projects, country-level programmes, technical assistance, exchange forums and technical
resource networks. TRNs help to improve availability of, and accessibility to, technical know-how.
This is needed to help countries and local groups in their response to the HIV epidemic.
Box 3. The rationale for networking
®
The overriding rationale for networking is to improve the outcomes of programmes in
response to HIV/AIDS, measured in terms of quantifiable reductions in the incidence of
HIV, adequate care for persons living with HIV/AIDS and the mitigation of impacts on
individuals, households and countries.
•
By developing capacity, improving knowledge, providing technical support and sharing
approaches and best practices, the networks have both enhanced HIV prevention efforts
on the ground and influenced policy development at the regional and national levels.
The acceleration of national-level efforts to expand the response to the HIV/AIDS
epidemic has resulted in a substantially increased demand for technical resources - both infor
mation and expertise - in a widening array of programme areas. At the same time, effective
8
!
UNAIDS
programme approaches are often specific to cultural, resource and political environments.
Individual agencies have made, and continue to make, substantial contributions in specific
areas of HIV prevention and care. But it is also increasingly evident that single institutions,
whether government departments, UN agencies, non-governmental organizations (NGOs), or
groups of people living with HIV/AIDS, do not have the capacity to deal with the multiple
determinants of HIV on their own. The need to act simultaneously and synergistically in a num
ber of areas such as targeted interventions, health services, communications, legal reform, edu
cation, rural development and the status of women, requires that a range of technical issues
must be addressed at the same time. This has further increased the need within countries for
access to current technical information and expertise.
Box 4. What influences performance in HIV/AIDS control?
The major Factors influencing the level of performance include the following:
•
The policy environment, including demonstrated political commitment by government
and the commitment of the civil society
•
Capacity - technical, managerial and political - to analyse problems and to develop
effective strategies for tackling them
•
Clarity of objectives in specific and measurable terms
•
Information (and knowledge) base
•
Use of scientific evidence of what works in the response to HIV/AIDS
•
Quality, relevance and timeliness of inputs
•
Financial and human resources
•
Technology as a tool for exchange of information and knowledge
•
Compatibility between interventions and institutions with responsibility for implementing them
Networks can help to strengthen the response to HIV/AIDS by improving the quality of
technical support in each of these areas.
9
3. What Do HIV/AIDS Networks Do?
3. What Do HIV/AIDS Networks Do?
3.1. Key functions
etworks assist in building local technical capacity, national and regional advo
t
cacy, sharing of information, peer support and facilitating collective action. They create influen
tial coalitions among programmes, giving them the critical mass needed to respond to HIV/AIDS
at the global, regional and national levels. At the regional level, they help to address crossborder issues that may drive or be the result of the HIV/AIDS epidemic and at the local level, net
works can be highly effective for sharing skills, information, resources and peer support.
77
Box 5. Networks and networking contribute to:
Capacity building
• Acting as a resource on different aspects of response to HIV/AIDS
•
Strengthening the ability of local communities and programmes to respond to
HIV/AIDS, thus reducing reliance on outside assistance
•
Sharing global and regional expertise with partners at the country level
Solidarity and advocacy
® Reducing isolation of members and providing support;
•
Strengthening responses in important but poorly addressed areas of HIV/AIDS;
Information sharing
® Promoting the exchange of ideas, insights, experience and skills
• ' Exchanging and documenting best practices from global, regional and national experience
Funding
® Mobilizing and utilizing financial resources for maximum impact
Most importantly, networks can actually foster the development of new pro
grammes and policies. Thus, they can help to reduce a region's reliance on direct external
assistance. This, in turn, builds capacity and enhances the network's functioning. A single
network may not perform all the functions outlined in Box 5 however, several TRNs based at
the Institute Nacional de Salud Publica in Cuernavaca, Mexico perform most of these key func
tions (Box 6).
10
I
UNAIDS
Box 6. The Institute National de Salud Publico, Cuernavaca, Mexico.
This UNAIDS Collaborating Centre has a wide range of activities in AIDS education and
research. In addition, it serves as the headquarters for the following networks:
•
Latin American Network on Women and AIDS (GLAMS). This network promotes
research and prevention of HIV infection among women in Latin America through an
information exchange network and advocacy. Its activities include development and dis
tribution of a quarterly newsletter; maintenance of a website and an electronic discus
sion forum; and publications on AIDS and women in Latin America. It receives financial
support from the MacArthur Foundation.
•
AIDS and Economics in Latin America (SEAL). This network facilitates communication
among researchers working on AIDS and economics in Latin America. It improves
access to information on research related to the economic determinants and conse
quences of AIDS in Latin America. Its activities include maintenance of a website and an
electronic discussion forum; technical publications; maintenance of a virtual library of
grey literature on AIDS and economics in Latin America; and development of methods
for National AIDS Accounts. It collaborates with and/or receives financial support from
SIDALAC, UNAIDS and IAEN.
•
Latin American Network on AIDS and Strategic Planning (REDPES). This network aims
to: (a) facilitate communication among researchers and policy-makers working on AIDS
and strategic planning in Latin America and (b) improve access to information and
strengthen capacity for strategic planning on AIDS. Its activities include provision of
technical assistance on strategic planning and AIDS; exchange of experiences with other
regional networks; maintenance of a website and an electronic discussion forum. It col
laborates with and is funded by UNAIDS. REDPES takes the view that strategic plans
should be considered as guiding documents that are open to adjustment. Such plans
have either been completed or are in draft forms in several countries in the region. In
six countries, (Chile, Peru, Colombia, Guatemala, Honduras and Mexico) REDPES has
supported the development of "integrated plans" for United Nations agencies in the
Thematic Groups that support the national strategic plans.
»■
. '
'
JI
3. What Do HIV/AIDS Networks Do?
In the 1999 review of TRNs cited earlier, UNAIDS Secretariat staff members were
asked to identify the overall objectives of the networks with which they collaborated. More than
one objective was marked where appropriate. Figure 1 presents the percentage of networks
with the following objectives: (a) exchange of information, experience, or scientific findings; (b)
advocacy; (c) support to strategy development; (d) capacity building through workshops or
meetings; (e) resource mobilization; and (f) other.
Figure 1: Objectives of the networks
(Percentage of Total of Networks, n=52)
70
60
50
co 40
c
o
u 30
CD
cl
I
20
10
0
Exchange of
information
Advocacy
Support to
Strategy
Development
Capacity
Building
Resource
Mobilisation
Other
Source: UNAIDS, 1999
The exchange of information, experience, and scientific findings was the pre
dominant objective of the networks (65.4% or 34 networks) followed by advocacy (48.1% or
25 networks), support to strategy development (38.5% or 20 networks) and capacity building
(26.9% or 14 networks). Other objectives (19.2% or 10 networks) included conducting
situation analyses and needs assessments, promotion of collaboration/cooperation, and/or
identifying research needs.
3.2. TRNs and knowledge management: the practice in 'best practice'
Knowledge management is the systematic dissemination, sharing and adaptation
of information and experiences. Knowledge management systems are developed to improve
an organisation's effectiveness and efficiency. Much of the initial work on knowledge man
agement was done in the for-profit sector, where efficiency is a major concern; Systems that
help to eliminate such waste are attractive to the corporate sector. They are equally attractive
to development organizations, particularly for the transfer of internal knowledge and the dis
semination of 'best practice'. For development agencies, programme managers and analysts
working on HIV/AIDS, the crucial issue is how to use effectively the growing collection of 'best
12
' ’MAIDS
practice7 materials. TRNs facilitate this through the dissemination and adaptation of such best
practices.
Knowledge management systems seem to work best when the people who gen
erate the knowledge are also those who store it, explain it to others and coach them as they
try to apply the knowledge. It has been well documented, however, that typical approaches to
knowledge management actually widen the gap between knowing and doing (Box 7).
Box 7.
•
How con typical knowledge management
practices make knowing-doing gaps worse?
Knowledge management efforts mostly emphasize technology and the transfer of
codified information.
•
’
Knowledge management tends to treat knowledge as a tangible thing, as a stock or a
quantity, and therefore separates the knowledge from its intended use.
•
Formal systems cannot easily store or transfer knowledge that is not easily described or
codified but is nonetheless essential for doing the work called tacit knowledge.
K•
The people responsible for transferring and implementing knowledge management
llA
frequently do not understand the actual work being documented.
•
Knowledge management tends to focus on specific practices, while ignoring the
importance of philosophy.
Source: Pfeffer J, Sutton R. The knowing-doing gap: how smart companies turn knowledge into action. Harvard
Business School Press. Cambridge, MA. p22. 2000
The important consideration here is that effective knowledge management
involves sharing know how in addition to sharing knowledge. How might TRNs serve as a
mechanism for effective management of knowledge? First, we note that in the absence of rele
vant information and knowledge, organizations (including governments) are less likely to make
sound choices. Second, we turn to the social learning theory, which states that individuals learn
from others whom they observe, and then imitate by following a similar (but not necessarily
identical) behaviour. Such social modelling frequently occurs through diffusion networks. By
linking innovators with others who are tackling similar issues, TRNs can perform a catalytic role
in the diffusion of innovations for HIV/AIDS control - so-called diffusion networks (Rogers,
1999). Diffusion scholars have long recognized that an individual's decision about an innova
tion may not be an instantaneous act. Rogers (1995) presents a model of the innovation
decision process that is shown below in Box 8. At the same time, similar ideas may develop in
different places in response to related problems. TRNs bring together workers in diverse
settings, enabling them to share ideas and tools for better performance in the fight against
HIV/AIDS.
13
4. Developing and Managing Networks
4. Developing and Managing Networks
4.1. Formation, funding and management
etworks are formed in response to perceived needs. Forming a network usu
ally requires immense commitment and effort from a small group of individuals or agencies.
Sustaining a network can be equally challenging as the network's founders struggle to gener
ate the funding, membership, activities and structure to ensure that the network survives and
grows. In light of these challenges, the International Council of AIDS Service Organizations
(ICASO; www.icaso.org) identified eight key steps to building a network (ICASO, 1997), to
which items 9 and 10 have been added in this document (Box 8).
Box 8. Ten step? in building and sustaining a network
1 . Prepare a statement of purpose. A statement of purpose is a precise and agreedupon statement of the reason for a network's existence, the values which underline the
network and what the members want to achieve.
2. Define goals and objectives. A goal is a broad statement that describes the changes
that members want to achieve through their actions. Objectives are specific, measurable
statements of the desired changes that a network intends to accomplish by a given time.
3. Create an action plan. An action plan i:is a set of steps that are developed to achieve a
specific objective. At a minimum an action plan should (a) identify the activities needed
to accomplish an objective, (b) identify resources, (c) designate responsibilities to persons
in the network, (d) set a timetable for actions and (e) implement, monitor and evaluate.
4. Establish ground rules. Early
/ on in the process of networking it is important to address
the issue of how members of the network are to interact with one another. ICASO has
identified 13 examples of ground rules, of which the following are examples: (a) come
t
to meetings prepared to listen, ponder, debate and question, (b) use your role in the
network to build group strength, to facilitate decision making in which everyone can
feel comfortable and (c) stay informed about issues related to the work of the network,
building your knowledge and understanding of all sides of the issue.
5. Define a decision-making process. Decisions can be made in many different ways.
Three typical forms of decision making in networks are command, consultative and
consensus.
6. Prepare a communications plan. This addresses the timely transmission and receipt of
information. For formal communications within the network, members may choose
combinations of the following: meetings, newsletters, faxes, phone calls, e-mail or
web-based discussion. Informal communications among members are less structured,
need to be encouraged and never thwarted.
7. Choose an organization structure. The key principle is that the structure should help
the network to achieve its goals. In practice, it may require the creation of units,
including committees or working groups, a coordination unit or secretariat, office staff
and a decision-making body.
UNAIDS
8. Secure resources. There are three major forms of resources required for networking:
money, people and in-kind contributions.
9. Define responsibilities. These include responsibilities for making and executing deci
sions, convening meetings, initiating communications and mobilizing resources.
10. Develop monitoring and evaluation plan. A monitoring and evaluation plan is
needed to assess progress toward set objectives and to enable corrective action where
necessary.
Source: International Council of AIDS Service Organizations. HIV/AIDS Networking Guide. 1997, ICASO.
Ottawa, pp. 9-17.
4.2. Challenges
Networks face multiple challenges. They include time constraints, limited financial
resources, limited technical capacity at the local level, divergent views among funding institu
tions and technical barriers to the delivery of network services. How well these are resolved will
affect the success of the network. Several networks have gone through the formative stages and
achieved some of their objectives. They include the Africa-based Regional AIDS Training
Network (Box 9) and the Asian Harm Reduction Network (Box 10).
Box 9. The Regional AIDS Training Network (RATN), Nairobi, Kenya.
The Regional AIDS Training Network (RATN) is innovative and adds value to country-level
work. RATN includes 13 partner institutions and 9 affiliate institutions in Eastern and
Southern Africa, working with WHO, EU, as well as academic and research institutions in
Belgium, Canada, Kenya and South Africa.
As part of its benefits to African countries, RATN supports curriculum development,
identifies and supports regional training venues, and facilitates communications among
institutions, trainers and trainees. As of mid-1999, RATN had served 470 course partici
pants from 17 African countries. Courses include AIDS counselling, management of STI,
community care, communications, adult education, policy and planning, research method
ology and laboratory management. RATN is gender-sensitive in the content of the course
and in the mix of course participants. Former course participants now have a variety of
responsibilities for community care and counseling in countries including Kenya, Malawi,
Zambia and Zimbabwe.
Expected long-term impacts include: (a) strengthened capacities of regional institutions to
function as innovative centres for research and training in STI/HIV; (b) improved skills of
STI/AIDS workers in the region; (c) effective exchanges of strategies and information
among countries in the region; and (d) improved care, and a decline in the incidence of
STI/HIV.
15
4. developing and Managing Networks
Box 10. The Asian Harm Reduction Network (AHRN)
AHRN is a regional organisation that targets HIV and injecting drug use (IDU). This tech
nical resource network has become an important mechanism for promoting the harm reduc
tion approach in Asia and strengthening HIV prevention among injecting drug users (IDUs).
Among other benefits to countries in the region, the network has proved to be a valuable
resource and mechanism for developing and conducting national and multi-country train
ing activities on HIV prevention and harm reduction. These activities have occurred through
out Asia and have targeted policy makers, health workers, law enforcement officials, drug
treatment workers, government and non-government staff and others interested in harm
reduction. Training is a useful approach through which AHRN has built capacity at the
country level for responses to HIV and IDU.
Some of the lessons in developing and managing AHRN are outlined below.
Having a funded secretariat, staffed by a full-time coordinator (the executive director),
was critical to developing the network, servicing its membership and securing funding
for subsequent years.
®
Sustaining the network required enormous time, effort and patience from AHRN staff
and management.
®
Developing AHRN's activities, establishing its secretariat and securing funding
required considerable professional expertise.
®
Having a broad funding base was important.
•
Cross-cultural adaptation of harm reduction strategies was critical to their acceptance.
®
Support from local organizations and individuals has been critical to the network's
recognition and success.
4.3. Information technology and TRNs
E-mail discussion forums provide opportunities for people to share ideas and
information on various topics. Some of these forums are open, such as AF-AIDS and SEA
AIDS, which can be joined by any individual or organization working in the area of HIV/AIDS
or interested in the topic (to join, sign up through www.hivnet.ch/fdp/). These forums aim to
encourage organizations and individuals to share experiences on HIV/AIDS, learn from the
experiences of others or debate issues of a topical nature.
The e-groups set up by the UNAIDS Intercountry Team tor Eastern and Southern
Africa (ICT/ESA) aim to facilitate the flow of information and to help TRNs share best prac
tices, research and issues emerging from countries (Box 1 1). 'E-groups' is a web-based
application (www.egroups.com) provided free of charge to the user. There are essentially two
services related to the e-groups: a group e mail address and distribution to the group; and a
website with various functions that facilitate networking and information sharing among the
group.
16
UNAIDS
These functions include:
•
The Document Vault. Documents of interest can be uploaded and stored in the vault.
•
Links to World Wide Web Pages of interest.
•
A chat section, which can be used for online meetings, etc.
•
A database feature where the contact details of all the members can be stored.
•
A calendar feature for arranging meetings.
Box 11. TRNs ond the Web: Focus on Eastern and Southern Africa
The UNAIDS Intercountry Team for Eastern and Southern Africa is facilitating the use of
information technology by technical resource networks. These networks are:
• The UNAIDS E-group This serves as a platform for sharing information among the I(lTz
the Country Programme Advisers, Junior Professional Officers, Theme Group
Chairpersons and the Cosponsors of UNAIDS. This network is used to update members
on regional news and to share information on ICT activities at the national level that may
benefit others.
•
The Religious E-group This was developed to support a core group of religious organ
izations to discuss community mobilization in the context of HIV/AIDS control. The
e-group will be taken over by the Norwegian Church AID, which is also exploring the
possibility of providing financial assistance to members to cover their connectivity costs.
On-going discussions address broadening the core members by inviting other religious
bodies to become involved in HIV/AIDS-related issues.
•
The Debt-for-AIDS E-group. The e-groups purpose is to share relevant information and
perspectives with key stakeholders working on Debt-for-AIDS activities. Many countries
with high HIV prevalence are also heavily indebted to external institutions and govern
ments. Debt service obligations reduce public funds that might otherwise be available
for AIDS control programmes. Debt-for-AIDS seeks to alleviate poverty and support
development by putting the AIDS control agenda in the key development instruments of
these countries, including their Poverty Reduction Strategy Papers, debt relief agree
ments and Medium-Term Expenditure Frameworks. For countries eligible for debt relief
under the Heavily Indebted Poor Countries (HIPC) initiative, Debt-for-AIDS urges that
funds from debt relief be tied in part to AIDS control programmes, through short-term
actions and medium-term goals. Stakeholders include government representatives, civil
society, UN agencies and creditors. This e-group had a membership of 300 persons as
of mid-2000.
•
HIV/AIDS Media E-group. This e-group is jointly moderated by UNAIDS and SAfAIDS
and aims to provide journalists in the region with updated information on HIV/AIDS.
17
4. Developing and Managing Networks
Box 12. TRNs and the Web: Focus on the Asia-Pacific Region.
The UNAIDS Asia-Pacific Intercountry Team (APICT) facilitates five electronic networks in
support of technical resource networks. These networks are:
®
The UNAIDS APICT E-group (APICT-net): A platform for sharing information among the
UN family members in the Asia Pacific Region, specifically Country Programme
Advisers, Junior Professional Officers, UNAIDS Theme Group Chairpersons and the
UNAIDS Cosponsors. This network is used to update members on news (AIDSFlash) and
events from the region, to share information on activities of APICT and the UNAIDS co-
sponso- . AIDSFlash is a biweekly news service summarizing the HIV/AIDS press from
ove 20 regional sources. The electronic newsletter is sent to all networks supported by
APICT and other interested nelworks/individuals.
®
The ASEAN Task Force on AIDS E-Group (ATFOAnet). This e-group is jointly moderated
by UNAIDS and the AIDS Division of Thailand's Ministry of Public Health. The group
provides members of the ASEAN Taskforce on AIDS with a neutral space to discuss
issues, identify possible solutions and share experiences and information.
®
The Asian AIDS Information Network E-group (MIN): This e-group brings together
organizations that are sources of HIV/AIDS information to: share relevant information,
experiences and resources between collaborating organizations; clearly define respec
tive roles of individual resource centres, and to convey descriptions of services and
materials available Io clients in the region; reduce duplication efforts in the provision or
HIV information and materials; and facilitate the referral of clients to appropriate
sources of good-quality information and materials. UNAIDS is currently negotiating with
a resource centre based within the region to take over responsibility for the network.
®
The TB-HIV/AIDS E-Group: This e-group was established to facilitate the sharing of
information, ideas, suggestions and concerns about the growing threat of TB-HIV/AIDS
and to explore ways of applying social mobilization to expand the response to this
.
®
'deadly duet'.
SEA-AIDS. Established in 1996, this network pioneered electronic communication in the
HIV/AIDS field in Southeast Asia. The email discussion forum brings together around
2400 people and organizations working in and with Asian Nations in response to the
epidemic. The forum enables people to discuss current HIV/AIDS issues, share experi
ences about what does and does not work in responding to the epidemic, as well as
sharing news and forthcoming events.
18
UNAIDS
Several lessons have been learnt thus far:
•
Where there is a real perceived need to exchange information (i.e. small group
of
technical experts working on a common area of concern), the e-group system works.
•
In some instances, the lack of communication may also be the result of the members
themselves not being altogether sure how to use the technology.
•
It is time-consuming to set up and maintain the database, links, document vault, etc. The
e-group needs to be regularly updated to ensure that the member listing remains current.
This is not necessarily the case in small technical e-groups. On the other hand, once this is
in place it will be easier to maintain the e-group and keep it going.
•
Although there are no cash costs apart from electricity and telephone access, a moderately
skilled user is needed to moderate an e-group.
•
Being web-based (except for the e-mail function) could present problems in those countries:
with inadequate telecommunications infrastructure. This is the case in many countries in
Southern Africa and therefore accessing the webpage on e-groups, with all the functions
and options available, could prove problematic.
•
Some people just do not have the time to read through and respond to all the e-mails.
Moderated e-mail forums may need to package messages into summaries, in order to
present the information concisely and to reduce the time required to read them.
There are similarities among these lessons and those identified by others (Kumaranayake and
Watts, 2000).
The Internet, like any information communication technology, is not essential to good informa
tion management. A TRN that has defined what information it needs and how information
communication technology can be used to meet those needs will be far in advance of one
which, in the absence of a thoughtful assessment of its objectives and needs, makes extensive
use of computers, e-mail and the Internet. For a more detailed discussion of this, see Powell
(1999).
19
References
References
International Council of AIDS Service Organizations. HIV/AIDS Networking Guide. 1997,
ICASO. Ottawa, Canada.
Kumaranayake L, Watts C. Moderating discussions on the web: opportunities, challenges and
lessons learned. Health Policy and Planning; 15(1): 116-118. 2000.
Powell M. Information Management for Development Organizations. 1999, Oxfam. Oxford, UK.
Pfeffer J, Sutton R. The knowing-doing gap: how smart companies turn knowledge into action.
Harvard Business School Press. Cambridge, MA, United States. P 261.2000.
Rogers E. Diffusion of Innovations. Second Edition, 1995. The Free Press. New York, United
States.
Starkey P. Networking for development. International Forum for Rural Transport and
Development, London, UK. ISBN 1 85339 430 0. 1997.
UNAIDS. Inventory of UNAIDS Networking Activities, Implications for Future Workplan.
Unpublished report prepared for the UNAIDS Secretariat by Sara Kim. August, 1999.
22
The Joint United Nations Prog ramme on HIV/AIDS (UNAIDS) is the leading advocate for global
action on HIV/AIDS. It brings together seven UN agencies in a common effort to fight the epidemic: the
United Nations Children's Fund (UNICEF), the United Nations Development Programme (UNDP), the United
Nations
Population
Fund
(UNFPA),
the
United
Nations
International
Drug
Control
Programme (UNDCP), the United Nations Educational, Scientific and Cultural Organization
(UNESCO), the World Health Organization (WHO) and the World Bank.
UNAIDS both mobilizes the responses to the epidemic of its seven cosponsoring organizations and
supplements these efforts with special initiatives. Its purpose is to lead and assist an expansion of
the international response to HIV on all fronts: medical, public health, social, economic, cultural,
political and human rights. UNAIDS works with a broad range of partners - governmental and NGO,
business, scientific and lay - to share knowledge, skills and best practice across boundaries.
Produced with environment-friendly materials
Networks assist in building local technical capacity, expanding national and
regional advocacy, sharing of information, building peer support and
facilitating collective action. Effective networks can strengthen HIV prevention
efforts on the ground and influence policy development at regional and
national levels. This new title provides practical guidance to those who seek
to improve their networking skills. It will also be essential reading for groups
of practitioners wishing to establish AIDS technical networks in specific
geographical or thematic areas.
Joint United Nations Programme on HIV/AIDS
aI
! Oil
_
UNICEF • UNDP • UNFPA • UNDCP
UNESCO • WHO • WORLD BANK
$10.00
Joint United Nations Programme on HIV/AIDS (UNAIDS)
20 avenue Appia. 1211 Geneva 27, Switzerland
Tel. (+41 22) 791 46 51 - Fax (+41 22) 791 41 87
e-mail: unaids@unaids.org - Internet: http://www.unaids.org
r-
!R
R
R
R
R
■
11
R
H
R
R
R
AIDS: Palliative Care
UNAIDS
UMCEF • UH[)P • UNFTA • UNDCP
1,'HfSCO • WHO • WORID BANK
UNAIDS
Technical update
pi
October 2000
UNAIDS Best Practice Collection^
HJNAIDS Best Practi
At a Gsance
••
The Joint United Nations
Programme on HIV/AIDS (UNAIDS)
publishes materials on subjects of
relevance to HIV infection and
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 al! pain-physical, psychological, spiritual and social and
Palliative care has relieved the intense, broad suffering of people liv
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 typically
includes a short publication for
ing with HIV/AIDS but the latter brings a number of challenges to its
journalists and community leaders
philosophy and practice including:
(Point of View); a technical summary
of the issues, challenges and
enabling and supporting caregivers to work through their own
emotions and grief.
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, ok .) on the
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
subject. These documents are
updated as necessary.
with HIV/AIDS;
Complex family issues, such as 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;
Technical Updates and Points of
View are published in English,
French, Russian and Spanish. Single
copies of Best Practice materials are
available free from UNAIDS
Information Centres. To find the
closest one, visit the UNAIDS
website (http://www.unaids.org),
contact UNAIDS by e-mail
(unaids(g)unaids.org), or telephone
(+41 22 791 4651), or write to the
UNAIDS Information Centre,
20 Avenue Appia, 121 1 Geneva 27,
Switzerland.
Psychological support for psychological problems;
Spiritual support and help with preparation for death;
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
1. Palliative Care
2. Medical/Nursing Staff
3. Voluntary Workers
UNAIDS, Geneva
■■■■■■■■ | October 2000
II. Series
WC 503
UNAIDS Technlcal UpdatWAlrC' ...
Care
life.
■
Background
*
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 life
threatening 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.
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: Pdlllai
Care ; UNAIDS Technical Update
broad suffering of people living
with HIV/AIDS. However, HIV/
AIDS has challenged the ideas of
palliative care because of its
specific dimensions:
i.
The complex disease
process.
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
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.
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.
$3
:W'
IS
..
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 to support
their 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.
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
(31 4 people) 1
Symptom
Prevalence
Pain
52%
Tiredness
50%
Anxiety
Sleep disturbance
40%
Mouth sore
33%
Sadness
Weight loss
32%
37%
31%
Nausea
28%
Fever
Cough
Depression
27%
27%
24%
Diarrhoea
24%
Skin problem
24%
Pruritus
Respiratory problem
22%
Vomiting
20%
23%
' 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
treated. Early and accurate
I October 2000
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 to 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
UNAIDS Teel
"CT?”leXanr'l
id
1!
■
E
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.
Pain relief should begin with a
straightforward explanation of
the causes of pain. Many pains
are best treated with a
combination of drug and nondrug measures.
used instead of analgesics.
A relatively inexpensive yet
effective method of pain relief
exists for the majority of people
with pain. The keys to this
method are:
*
"By mouth". If possible an
algesia should be given by mouth.
“
"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.
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
treated.
Very anxious or depressed
patients may need an
appropriate psychotropic drug in
addition to analgesia, otherwise
the pain may remain intractable.
Psychotropic drugs, however, are
not analgesics and should not be
AlDS: PalliativfeCcre<UNAIDS Technical Update
2. Diarrhoea and constipation
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
The analgesia ladder
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
unusually severe.
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
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
uncontrolled pain can create
anger from the patient and the
family, and anger and/or feelings
of inadequacy among carers.
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.
Step 2
Codeine or
dihydrocodeine
Step 3
Morphine
With or without
co-analgesia;
With or without
non-steroidal
anti-inflammatory
drugs.
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
Other strong
opioid analgesics
include synthetic
pethidine
and fentanyl
If they do not
relieve the pain,
move to step 2
If they do not
relieve the pain,
move to step 3
If pain .still
uncontrollable, refer
to a specialist.
Adapted from Cancer pain relief, second edition, WHO, 1996 and Douleurs sans frontieres,
1998
“
''By the ladder". The sequen
tial use of analgesic drugs is
shown in the figure:
«
"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
..
n
n
Background
insufficiency. A review of the diet
and ah attempt to temporarily
eliminate milk products or fat
may be helpful. A stool with the
consistency of thick soup may be
caused by,the mechanical
obstruction by a hard stool or a
tumour, and might be treated
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
softeners and laxatives.
3. Nausea, vomiting, anorexia
and weigh? ioss
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.
Summary of treatment for oral and oesophageal infections
Gingivitis
oral hygiene
metronidazole 400 mg twice daily for 5 days,
betadine mouth wash
Oral candidiasis
topical or systemic antifungals
(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)
Oesophageal
candidiasis
or severe oral
candidiasis
systemic antifungals (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
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
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 4-8 hours
or glycopyrrplate 0.1-0.4 mg
intramuscularly every 4-6 hours
will be useful in reducing the
quantity of secretions when the
person is top weak to cough.
Oxygen may prolong death rather
than improve quality of life, and
rpny
be appropriate.
I
October 2000
UNAIO^ Technical UpclS^ftlDSF
La
u
Bl
■
Background
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.
hours if necessary. Ensuring
adequate fluid intake is
important and sponging the
person with a wet towel can also
bring some relief.
7. Skin problems
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 by
40-50% of people with advanced
HIV disease. There are often
many reasons for fatigue, but it
may be associated with:
Ig
anaemia
direct HIV effects on the
central nervous and
neuromuscular systems
*
malnutrition and "wasting"
syndrome
«
secondary infections and
tumours
adverse effects from drug
therapy
chronic pain
■
insomnia
■
depression.
Vhere 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.
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
I
Fungal infections
tinea corporis, folliculitis,
candidiasis
Topical antifungals if mild, systemic
antifungals in severe cases
Viral 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 warts/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
clean dressing.
•!
I
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.
7
AIDS: Palliativig*Ciire : UNAIDS Technical Update
■
Abscesses should be drained, cleaned
and dressed before antibiotic treatment
6. 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
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
il
s
pj
0
0
i~ir‘
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 and 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. It 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 (2550 mg 6-8 hourly). Low doses
should be used initially because
of the increased risk of
extrapyramidal 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
major problem, especially as
some people may have 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.
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 bo
particularly important in these
circumstances.
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 and 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 sig ns of
relapse.
People living with HIV/AIDS may
consider suicide. This may result
October 2000
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-tenn 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 Updote ; AIDSrPaHiotiveCare
H
Backgrounds
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
groups can provide great comfort
and relief; many patients are
helped by talking to other people
who are terminally ill.
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 able to reassure
patients that pain relief will be
carried out up to the point of
death. Another great worry is
what will 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"’ is
common.
Practical issues to be discussed
before death
a
custody of children
Ifii
family support
Support for families and
carers
For family members, partners
and friends, looking after
someone with HIV infection can
be very daunting. In 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.
1. 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:
■
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.
making a will
ai
funeral costs
Hl
future school fees.
Emotional issues to be discussed
before death
■
resolve old quarrels
■
tell patient and family
members or friends that they
are loved
■
■
share hopes for the future,
especially for children who
are left behind
say goodbye to carers and
providers.
■
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
as how to dress ulcers. This will
' "Property grabbing" occurs in some countries in sub-Saharan Africa. Il is the practice of relatives of the deceased to seize his/her property
at death. This often results in women and orphans being left destitute following a death.
9
AIDS; Palliotive Cere : UNAIDS Technical Update
October 2000
Fl
STkground
__ .___ _____________
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 take
time to explain what is
happening when cognitive and
behavioural problems develop,
and to support carers 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.
»
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
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.
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.
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
The risk of HIV infection to
carers and household contacts
is extremely low.
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.
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).
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 fo discuss and
reflect on the changes brought
about by loss, to mourn
appropriately and to look to the
future. Partners and 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.
Carers should be aware of and
understand the following:
■
»
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,
H3
•■ "--"'RiBBSEgSS
UNAIDS Technical Update : AIDS: Palliative Care
,i
W’
■
I
■'W
^Challenges
can provide good support for
carers as well as patients. Health
workers can share the burden of
care, as well as providing
treatment, advice and support.
They also encourage acceptance
of HIV/AIDS 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.
Many patients first seek help and
support from traditional or
complementary medical
practitioners. These practitioners
may offer symptomatic treatment
vith 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
Perceptions and recognition of
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.
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,
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
are intermittently ill and v/ith
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 are 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
11
AIDS; Pctifolhc^Cdre: UNAIDS TechnjCQ» UpdaK
October 2000
i
n
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-
a
HIV-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 or
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
legislation. Some PLHA groups
argue for these drugs to be made
more widely available.
I October 2000
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.
UNAIDS Technical Update : <
IveCare
i
Ei
bo
Responses
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 basic
medical 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
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 living". 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.
It 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 1 998.
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.
13
AIDJ
! UNAIDS Teefaikql Update
October 2000
H
The emphasis is on rehabilitation
and the promotion of
independence wherever possible.
It has a patient-focused team
with support from:
B
Medical and nursing staff
Physiotherapists
S
■
Occupational therapist
Nutritionist
Counsellors
B
Spiritual care
E8
On-site laboratory services
H
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. It is now
estimated that 200 000
Cambodians are HIV-positive, of
whom 30 000 have progressed to
AIDS, with an impact that is also
growing on military and police
forces. Working with Doctors
without Borders, the programme
has developed a capacity to
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
hospitals. The current project was
based on the premise that a
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.
Sahara Michael's Care Home,
professionals and non
professionals. The professional
team consists of a consulting
physician and nurses. The care
staff includes 1 7 men and
women who perform a variety of
tasks ranging from autock: 'ing,
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.
India
Sahara Michael's Care Home, a
nongovernmental organization in
India, is pioneering a continuum
of care that addresses aspects of
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
with HIV/AIDS is now being
utilized by HIV/AIDS communities
throughout India.
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
•^7
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
MB*’**:-;-.-
UNAIDS Technical Update : AIDS: Palll
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Responses
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also have an important advocacy
role and are active in fighting
discrimination and promoting the
rights of widows and dependents.
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 also 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.
15
‘ Care : UNAIDS Technkol Update
October 2000
■aas^u^hi .....
R
R
F!
I
1'-<■
S
H
Blinkhoff P, Bukanga E,
Syamalevwe B, Williams G.
(1999) Under the Mupundu Tree.
Volunteers in home care for
people with HIV/AIDS and TB in
Zambia's copperbelt. Strategies
for Hope series No. 14.
ActionAid.
Oleske J, Czarniecki L (1999)
Continuum of palliative care:
Lessons from caring 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 1 1 (suppl. B):
S135-S141.
Doyle Dz Hanks G, MacDonald
N. (eds.) (1998) Oxford textbook
of palliative medicine. Second
edition. Oxford University Press.
Ferris FD, Flannery JS, McNeal HB,
Morisette MR, Cameron R, Bally
GA (eds.) (1995) A comprehensive
guide for the care of persons with
HIV disease. Module 4: Palliative
care. Mount Sinai Hospital/Casey
House Hospice.
Sims R, Moss V (1995) Palliative
care for people living with AIDS.
Second edition. Arnold, London,
United Kingdom.
Welch J, and Newbury J. (1990)
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 (1996). Cancer pain relief.
Second edition. ISBN 92 4
154482 1.
WHO (1998). Cancer pain relief
and palliative care in childien.
ISBN 92 4 154512 7.
WHO (1998). Symptom relief in
terminal illness. ISBN 92 4
1545070.
WHO (1999). Drugs used in HIVreluted infections. WHO model
prescribing information. WHO/
DMP/DSI/99.2.
® Join! United Nations Progiumnie 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 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 do not imply that they are endorsed or recommended by UNAIDS in preference to others of a similar nature that ore not mentioned.
Errors and omissions excepted, the names of proprietary products are distinguished by initial capital letters.
| October 2000
$!
UNAIDS Technical Update;:WI
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AIDS and men who
have sex with men
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UNAIDS
UNAIDS
Technical update
;•
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May 2000
UNAIDS Best Practice Collection
4^
At a G!ance
Sex between men exists in most societies. It frequently involves
anal sex. Unprotected penetrative anal sex carries a high risk of
HIV transmission, especially for the receptive partner.
HiV prevention programmes for men who have sex with
men (MSM) are hindered by the following:
denial that sexual behaviour between men takes place
stigmatization or criminalization of men who engage in sex with
other men
inadequate or unreliable epidemiological information on HIV
transmission through male-to-male sex
the difficulty of reaching many of the MSM
inadequate or inappropriate health facilities, including sexually
transmitted disease (STD) clinics, and lack of awareness or
sensitivity among STD clinic staff about the existence of anal,
rectal and oral STDs
lack of interest among donor agencies in supporting and
sustaining prevention programmes among men who engage in
same-sex behaviour, and a lack of programmes addressing male
sex workers in particular
lack of attention in national AIDS programmes to the issue of
MSM.
Effective responses to these problems include a combination
of the following:
commitments by national AIDS programmes and donor agencies
to include the issue of MSM in their programmes and funding
priorities
outreach programmes by volunteers or professional social or
health workers
The 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 typically
includes a short publication for
journalists and community leaders
(Point of View); a technical summary
of the 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, etc.) 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
available free from UNAIDS
Information Centres. To find the
closest one, visit the UNAIDS
website (http://www.unaids.org),
contact UNAIDS by email
(unaids@unaids.org) or telephone
(4-41 22 791 4651), or write to the
UNAIDS Information Centre,
20 Avenue Appia, 121 1 Geneva 27,
Switzerland.
peer education among MSM
the promotion of high-quality condoms and water-based
lubricants^ and ensuring their continuing availability
safer sex campaigns and skills training, including in the use of
condoms, and the promotion of lower-risk sexual practices as
alternatives to penetrative sex
AIDS and men who have sex with
men. UNAIDS Technical update.
English original, August 1997,
first revision May 2000.
strengthening organizations of self-identified gay men, enabling
them to promote HIV prevention and care programmes
I. UNAIDS
promoting mass media campaigns, while ensuring that these are
culturally appropriate
education among health staff, including within STD clinics, to
overcome ignorance and prejudices about MSM
efforts to organize health facilities to make them accessible and
affordable
II. Series
1. Acquired immunodeficiency
syndrome - transmission
2. Homosexuality, mule
3. Acquired immunodeficiency
syndrome - prevention and control
UNAIDS, Geneva
WC 503.71
breaking down social and cultural barriers against the discussion
of male-to-male sex
reviewing — with the aim of abolishing — laws that criminalize
certain sexual acts between consenting adults in private
enacting anti-discrimination and protective laws to reduce human
rights violations against MSM.
fcM
May 2000
UNAIDS Technical Update; AIDS and men who ha
ithmen
■
■
■
Sex between men occurs in most societies. For cultural reasons, it is often stigmatized by society.
The public visibility of male-to-male sex, therefore, varies considerably from one country to
another. Sex between men frequently involves anal intercourse, which carries a very high risk of
HIV transmission for the receptive partner, and a significant risk, though a lesser one, for the
insertive partner. HIV prevention programmes addressing men who have sex with men (MSM) are
therefore vitally important. However, they are often seriously neglected - because of the relative
invisibility of MSM, stigmatization of male-to-male sex, or ignorance or lack of information.
Identity and behaviour
Sexual identity is different from
sexual behaviour. Many men who
have sex with other men do not
regard themselves as
homosexual. In a number of
societies, the way such men view
their own sexual identity is
determined by whether they are
the insertive or the receptive
partner in anal sex. In these
societies, many men who have
sex with other men self-identify
as completely heterosexual, on
the grounds that they take an
exclusively insertive role in such
activities.
Worldwide, a large percentage of
MSM are married or have sex
with women as well. This bisexual
behaviour is reported to be
common in some societies, such
as in Latin America (see Schifter J,
et al, "Bisexual communities and
cultures in Costa Rica", and
Parker RG, "Bisexuality and HIV/
AIDS in Brazil", both in Key
Materials: Aggieton P (ed), 1996)
and in North Africa (see Schmitt
A, "Different approaches to male
male sexuality/eroticism from
Morocco to Uzbekistan" in Key
Materials: Schmitt and Sofer
(eds), 1992).
A self-awareness among MSM
has developed, and now exists to
a considerable extent in
industrialized countries - though
even in these countries there are
many men who have sex with
other men who do not identify
themselves as homosexual or
"gay". In some parts of the
developing world the number of
self-identified gay men has also
grown - often through local
initiatives - particularly in some
Asian and Latin American
countries. Along with this self
identification, gay meeting places
have sprung up - organized
social groups or campaigning
groups, and gay bars, discos,
gyms and saunas.
Even in places where most MSM
are obliged to stay out of public
view, some will choose to be
visible. These include transvestite
men and transsexuals. Because
they are often the only visible
ones, they frequently become
stereotyped as typical of all MSM.
In fact, such "transgendered"
people usually represent only a
very small percentage of all MSM.
Sexual preference
Most same-sex behaviour is
conducted out of natural
preference. There are also,
however, instances of institutions
where men are obliged to spend
long periods in all-male company,
such as in the military, prisons,
and male-only educational
establishments, and in which
male-to-male sex can be
common. While such institutional
male homosexual behaviour
represents only a small part of all
male-to-male sex, it can
nonetheless be important from
the point of view of the AIDS
epidemic. Male prisons, for
example, have been shown to
make a significant contribution to
some countries' epidemics - both
through drug injecting and maleto-male sex (see UNAIDS
| AIDS end meit who have sex with men: UNAtDS Technical Update
Technical Update, Prisons and
AIDS).
Maie-to-male sex, anal
intercourse and HIV
Penetrative anal sex frequently
occurs in sex between men. If
HIV is present in the irisertive
partner, and if condoms are not
used, then anal sex carries an
especially high risk of HIV
transmission for the receptive
partner. The risk to a receptive
partner in unprotected anal sex is
several times higher than the
next most risky category, that of a
woman having unprotected
vaginal intercourse with an HIVinfected man. The reason for this
is that the lining of the rectum is
thin and can easily tear - and
even only small lesions in the
lining are sufficient to allow the
virus easy access. Even without
lesions, it has been postulated
that there might be a lower
natural immunity in the cells of
the rectal lining to resist HIV than
there is, for instance, in the lining
of the vagina. There is also a risk •
of HIV infection from unprotected
anal intercourse, though a lesser
one, for the insertive partner.
(See Detels, R, "The contributions
of cohort studies to under
standing the natural history of
HIV infection", in Nicolosi A (ed),
HIV epidemiology: models and
methods, Raven Press, New York,
1994, p.239.)
The presence of other untreated
sexually transmitted diseases
(STDs) - such as syphilis,
gonorrhoea and chlamydia - can
further greatly increase the risk
May 2000
.....
Fl
■
■
IBackground
of HIV transmission, when HIV is
present. STDs located in the anus
and rectum can often be
asymptomatic.
Oral (oro-penile) sex is also
common among MSM. While HIV
could be transmitted through
such sex if not protected by a
condom, the risk is generally
considered low. (See Samuel,
MC, et al. ''Factors associated
with human immunodeficiency
virus seroconversion in
homosexual men in three San
Francisco cohort studies, 19841989". Journal of Acquired
Immune Deficiency Syndromes
1993 6(3):303-l2.)
The ASDS epidemic and men
who have sex with men
At least 5-10% of all HIV cases
worldwide are due to sexual
transmission between men,
though this figure varies locally
very considerably. In North
America, Australia, New Zealand
and most of Western Europe,
UNAIDS believes the figures are
closer to 70%.
In most developed countries and
some developing ones (such as
Indonesia, the Philippines and
Mexico), the first detected cases
of HIV and AIDS occurred in men
who had sex with men. Later,
although the absolute number of
cases of male-to-male
transmission in several of these
■
ra
h
countries often continued to rise,
the proportion of such cases
decreased while the proportion
of cases among heterosexual
men and women increased
correspondingly. This can hide
the scale of the problem for MSM.
Commercial sex between men
In most countries, a certain
proportion of sex between men is
in some way commercial, though
this can cover a wide range of
possibilities. Much sex work is
highly informal, with the
expectation perhaps of a small
"present" for services rendered.
Some of it is full-time and
professional, though
proportionally much less so than
among female sex workers. Many
male sex workers have a wife or
regular female partner and
would not self-identify as
homosexual. Frequently, the
clients of male sex workers are
married men or behaviourally
bisexual.
Male sex workers can often find
themselves in a weak bargaining
position in their power to insist
on condom use. However, reports
from some countries, including
the Philippines, suggest that the
female sex workers there face
more difficult conditions, and
that the male sex workers have
at least some degree of
bargaining power. While
economic pressure is still an
S £2 22 May 2000
important reason for male sex
workers not using condoms, they
are usually more able than
female sex workers to resist
physical coercion, and can often
be more selective in choosing
clients.
Major social and political
upheavals and emergency
situations — especially those
displacing people and creating
refugees — can in certain
circumstances act as a catalyst to
push significant numbers of
young men (as well as women)
into prostitution.
Adolescent males
Adolescent men frequently have
sex with other males of their age
group. They also sometimes have
sex with older men — in some
cases with men considerably
older. This younger-older type of
male-to-male relationship is
common in certain cultures,
where it is frequently within the
family (with an uncle, for
example). A 'younger-older'
male relationship may be more
or less consensual, or it may be a
violent and abusive one. In either
case the younger man is likely to
be relatively vulnerable, because
of a lack of knowledge about HIV
and a lack of negotiating skills —
and also because the older
partner, simply because he has
probably had many more sexual
encounters, is more likely to be
infected than a partner of the
same age.
UNAIDS Technical Update; AIDS end men who have^ex v4th men
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The Challenges
E
Denial
these factors makes them difficult
to reach for prevention work.
Policy-makers and programme
managers sometimes deny that
male-to-male sex occurs in their
part of the world. Denial is an
enormous obstacle to efforts at
AIDS prevention and care among
MSM.
Male sex workers can be
particularly difficult to access,
especially where the work is
clandestine and where the
workers are not organized into
establishments.
Alternatively, the facilities may
exist, but the men may find
access to them difficult - for
reasons of negative attitudes on
the part of health staff towards
same-sex behaviour, lack of
discretion or anonymity for
clients, inconvenient location or
opening hours, or cost.
Inadequate epidemiological
data
Difficulties of sustaining
"safer sex" practices
Stigmatization and
criminalization
Lack of, or unreliable
pidemiological data are an
obstacle io HIV prevention work.
In some places, risk exposure
categories are not properly set
up to take account of male-tomale sex.
Despite the initial successes in
many prevention campaigns, in
some places — particularly in
industrialized countries — MSM
have been found in recent years
to practise safer sex (including
condom use) less regularly than
before. Among the reasons for
this are: information fatigue; a
lack of innovative outreach work;
decreased funding for prevention
efforts; and uncertainty among
HIV-infected men who are
receiving antiretroviral treatment
about the continued risks — to
themselves or their partners — of
unsafe or unprotected sex.
Societies can be hostile to men
who engage in same-sex
behaviour, stigmatizing it and
treating it as sinful or as criminal
- in some places with severe
penalties. Men will then often not
choose, or have the opportunity,
to be honest about the fact that
they have had sex with other
men. Fearing to be questioned
about their sexual behaviour,
they will be reluctant to report
symptoms of STDs, including HIV.
Because of this, all efforts at
education on HIV and safer sex,
the provision of condoms, and
appropriate STD and other
medical care, are made
extremely difficult.
Lack of knowledge or awareness
In countries where HIV education
emphasizes only heterosexual
transmission, men may be
ignorant of the risks of male-to
male sex, or consider that the
risks don't apply to them - and
may therefore be less likely to
protect themselves.
Lack of appropriate
programmes
\any countries lack AIDS
programmes for MSM. At the
same time, existing programmes
may be inappropriate.
Educational material that is
suitable for people in a self
identified gay bar may be too
explicit - and thus
counterproductive - for those
men who do not self-identify.
Difficulty of reaching many of
the men who have sex with
men
Many MSM engage in casual,
fleeting and anonymous sexual
encounters. They may also not
think of themselves as having sex
with men. The combination of
Inadequate, inaccessible or
inappropriate health facilities
MSM seeking attention on sexual
or medical matters, or tests for
HIV or other STDs, may find such
facilities to be lacking.
Hostility on the part of society
also hinders effective HIV
prevention efforts aimed at
adolescents and young men who
have sex with other men.
OCCUR
The Japanese organization OCCUR is a good example of a self
identified gay group working to strengthen community-type
responses on AIDS among gay men. Since 1986 OCCUR has
aimed to create networks among homosexual men and women
in Japan, to disseminate accurate knowledge about
homosexuality to the general community, and to eliminate social
discrimination and prejudice. At the same time it operates safer
sox campaigns on a yearly basis and publishes a newsletter for
people with HIV and AIDS. In December 1 994, one of its leading
members, a young man living with HIV, was appointed to join
the official Japanese delegation to the Paris AIDS Summit.
I
7
5
AIDS and men who have sex with men: UNAIDS Technical Update
May 2000
R
r
Condom and lubricant
provision
One of the most important and
effective responses to the
problem of HIV transmission in
sex between men through anal
sex is to make high-quality male
condoms, together with water
based lubricants, available,
accessible and affordable to men
who are likely to have sex with
other men. This can be done
effectively through the peer
education and outreach
programmes described below. In
places where there is a gay
"scene", condoms and lubricants
can be promoted in gay venues.
This is particularly important
where sex takes place on the
premises: several gay
bathhouses, including in Hong
Kong, Bangkok and Paris, make
condoms and lubricants available
free to clients.
Instructions on the correct use of
condoms should be supplied as
part of the packaging of condoms
and lubricants, or in the context
of skills training.
Peer education and outreach
programmes
Peer education uses current
members of the affected
community. In outreach work, a
mixture of trained professionals
and volunteers go out to find the
MSM, wherever they congregate.
The face-to-face methods used in
these approaches afford privacy
and confidentiality, and enable
the person to ask questions. They
also enable the educator to train
the person. Both approaches which have been widely used by
nongovernmental AIDS service
organizations, and others - can
be effective for a large range of
casual encounters between men.
Both peer education and
outreach programmes promote
"safer sex" among MSM.
Strategies for "safer sex" include
switching from anal sex to other
forms of sex with much lower
risks for HIV/STD transmission,
such as oral sex, intercrural sex
(between the thighs - without
penetration) and mutual
masturbation. An important
activity of outreach programmes
is providing easy access to highquality condoms and water
based lubricants, and promoting
safer sex, knowledge of condom
use and negotiating skills.
Examples of successful projects
include ALCS in Morocco (see
Key Materials: Imane, 1995);
CAN in Madras, India (see
Kashyap N, "Educating Alis and
men having sex with men: the
Chennai experience", in AIDS
Welch newsletter, July 1997
2(2):2-3, WHO/SEARO, New
Delhi); the Lentera project for
transvestites in Yogyakarta,
Indonesia; Lambda in Chile; the
Mpowerment project in Oregon,
USA; and Iwag Davao's "Center
for Gay Men" on Mindanao
island in the Philippines.
It is important that adolescents
and young men are educated by
their peers on HIV risks and
prevention methods. Frequently
lacking access to information on
sex between men, they are often
ignorant of the risks and more
vulnerable than others, and will
tend to listen to their friends.
Media campaigns
Mass media campaigns on the
risks of unprotected sex between
men and promoting the use of
condoms and water-based
lubricants are possible in some
settings. In Australia and
Switzerland, for instance, media
campaigns together with
Moy 2000
outreach programmes directed at
gay men have been shown to
have had an impact in changing
behaviour. Airing the subject of
male-to-male sex in public can
also help reduce stigmatization.
Campaigns using "small media"
such as pamphlets and booklets,
which can be distributed
discreetly, have been useful in
many settings.
Gay community projects
Another approach is to
strengthen groups representing
self-identified gay men. This
applies not only to North
America, Europe, Australia and
New Zealand, but also to a
growing number of large urban
areas in other parts of the world,
including Sdo Paulo, Mexico City,
Bangkok, Hong Kong, Seoul,
Taipei, Jakarta, Manila, Kuala
Lumpur, Tel Aviv and Cape Town.
In Australia, the United States
and other Western coun'.ies, HIV
infection rates among MSM have
dropped mainly through the
efforts of gay men's
organizations themselves. The
experience in several developing
countries suggests that AIDS has
encouraged self-identified gay
men to move into community
organizing, sometimes with
minimal external support.
Parallel with this approach is the
possibility of organizing gay bar
owners in HIV prevention
activities. This happened in
Bangkok, where a gay bar
owners' association has actively
undertaken AIDS education and
condom promotion.
Educating the heaith services
The public health services are
one of few (if any) official points
of contact where many men who
UNAIDS Technical Update: AIDS ond men v
i^men
•'
The Responses
________ ______
have sexual encounters with men
are likely to receive information,
counselling, check-ups and
treatment. It is important that
there should be strong
educational programmes among
health workers to promote nondiscriminatory attitudes towards
male-to-male sex, and to have
the appropriate counselling,
preventive and medical
approaches adopted. STD clinic
staff should be sensitized to the
existence of anally and rectally
located STDs. Anonymity is
important in encouraging MSM to
use these services.
A greater effort by national
AIDS programmes and donor
agencies
National AIDS programmes
should address and incorporate
the particular requirements of
MSM into the design of their
STD/HIV prevention and AIDS
care programmes. While some of
them do so at present, many still
do not. Donor agencies should
be given more information on
the situation of MSM. They
should also make a higher
priority of funding the
implementation and evaluation
of projects with male-to-male sex
as one of the main components.
■
■
When HIV programmes aimed at
MSM are operating, it is vital that
they should be maintained. There
have been cases, including in
developed countries, where
programmes had their funds
reduced, or even stopped, after
the project was declared to have
been "successful", or when it was
thought that the risk to men
engaging in same-sex behaviour
had declined.
Greater understanding and
an end to denial
All the previous suggested
responses have a very much
greater probability of success if
society adopts a nondiscriminatory approach to men
having sex with other men ending the stigmatization and
marginalization that exist in
many places. More determined
efforts must be made to change
public perceptions and get rid of
denial and prejudices on the
subject of MSM. Serious
consideration should be given to
introducing anti-discrimination
and protective laws to reduce
human rights violations against
MSM, including in the context of
HIV/AIDS.
Governments should review, with
the aim of repealing laws that
criminalize specific sexual acts
between consenting adults in
private. (According to page 14 of
the Second International
Consultation on HIV/AIDS and
Human Rights held in Geneva
ini 996, "Criminal law prohibiting
sexual acts (including adultery,
sodomy, fornication and
commercial sexual encounters)
between consenting adults
in private should be reviewed,
with the aim of repeal. In any
event, they should not be
allowed to impede provision of
HIV/AIDS prevention and care
services". See HIV/AIDS and
Human Rights: International
Guidelines, available on the
UNAIDS website at http://
www.unaids.org/publications/
documents/human/index.html).
Such action will greatly help the
provision of HIV/AIDS prevention
and care services and reduce the
vulnerability of MSM to HIV
infection and to the impact of
AIDS.
More research towards
understanding same-sex
behaviour, its prevalence and
relation to HIV risk, should also
be carried out.
Mass media campaign and NGO projects: the example of Brazil
In the first years of the epidemic in Brazil, from 1983 to 1987, most HIV prevention efforts were
aimed at MSM. These included large-scale government-inspired mass media campaigns, and peer
education and outreach programmes operated by nongovernmental AIDS service organizations. In
Sdo Paulo state - considered representative of Brazil for this purpose - the number of new AIDS
cases where infection was through male-to-male sex rose steadily each year, to a maximum of
1464 in 1992. Since that year, the number of new AIDS cases has fallen each year, with 953
reported in 1995. Given the time lag between seroconversion and onset of AIDS, it is possible that
HIV incidence had started to fall by 1986 or earlier. This suggests that the combination of early
mass media campaigns and NGO work, both aimed specifically at MSM, was effective in Brazil.
AIDS and men who have sex with men: UNAIDS Technical Update
May 2000
I
';-;r
Selected Key Materials
Aggieton P (ed). Bisexualities and AIDS.
London: Taylor and Francis, 1996.
Includes chapters on MSM and
bisexual behaviour in wide range of
countries including Brazil, China,
Costa Rica and Mexico.
Aggieton P (ed). Men selling sex.
London: Taylor and Francis, 1999.
Describes male sex work around the
world, with many references to HIV/
AIDS. Chapters on Brazil, Costa Rica,
Dominican Republic, Mexico and
Peru; Bangladesh, Philippines, Sri
Lanka and Thailand; Morocco;
Canada, England, France,
Netherlands, USA and Wales.
Altman D. Power and community.
London: Taylor & Francis, 1994.
Analyses practical dilemmas faced by
community-based organizations of
MSM worldwide, highlighting tensions
between AIDS activism and service
provision, and between volunteer
participation and management
control.
Imane L. Prevention de proximite
aupres des prostitues masculins au
Maroc: le cas de Casablanca et de
Marrakech. Report on the programme
of the Association Marocaine de Lutte
contre le SIDA (ALCS), 1993-1995.
Casablanca, 1995.
Report highlights first project in ArabMuslim world for outreach to male sex
workers on HIV/AIDS prevention.
Includes aspects of attitudes and
behaviour, condom distribution, STD
treatment, counselling and
anonymous testing.
Khan S. Sex, secrecy and
shamefulness: developing a sexual
health response to the
needs of males who have sex
with males in Dhaka, Bangladesh.
London: The Naz Foundation, 1997.
Report based on situation analysis of
MSM behaviours in Dhaka,
Bangladesh, incorporating findings
from training workshops.
Murray SO, Roscoe W (eds). Boy wives
and female husbands: studies of
African homosexualities.
London: St. Martin's Press, 1998.
Collection of essays examining a
range of homosexualities throughout
Africa, with several historical studies.
Includes chapters on Cameroon and
Angola in early 20th century; east
African coast and Zanzibar; brothels
in Dakar, Senegal; Lesotho; and
sexual politics in southern Africa.
Parker R. Beneath the equator: cultures
of desire, male homosexuality and
emerging gay communities in Brazil.
New York and London: Routledge,
1999.
Examines how changing urban
culture in Brazil over past century has
influenced development of gay and
other sexual identities. Desci ibes
increasingly diverse gay subcultures
and emerging communities. Sections
on AIDS activism, and on migration of
male sex workers in Brazil.
Schmitt A, Sofer J (eds). Sexuality and
eroticism among males in Moslem
societies. New York: Harrington Park
Press, 1992. Range of articles
examining how MSM in Islamic
societies regard their behaviour and
their feelings to other men. Covers
North Africa, Middle East, Central
Asia and South Asia.
Seabrook J. Love in a different climate:
men who have sex with men in India.
London: Verso, 1999.
Book based on research and
interviews among MSM in New Delhi.
Explores sexual histories, lifestyles,
attitudes and knowledge of HIV/AIDS.
Sullivan G, Leong LW-T (eds). Gays
ond lesbians in Asia and the Pacific:
social and human services.
New York and London: Haworth
Press, 1995.
General description of homosexual
cultures in Asia and Pacific. Includes
three articles specifically on AIDS
services and strategies: in Singapore,
the Philippines and Australia.
Tan M. Recent HIV/AIDS trends
among men who have sex with men.
Chapter in Shiokawa Y, Kitamura T
(eds). Global challenge of AIDS: ten
years of HIV/AIDS research.
Tokyo: Kodansha, and Basle: Karger,
1995, pp. 27-34.
Chapter presents an overview of
epidemiological, social and
behavioural trends among MSM with
regard to HIV/AIDS in various parts of
world.
Werasit S, Brown T, Chuanchom S.
Levels of HIV risk behaviour and AIDS
knowledge in Thai men having sex
with men. In AIDS Care, 1993,
5(3):261 -271. Study of MSM in
Northeast Thailand. Focuses on
sexual acts, partnerships, lack of
condom use, and defects in AIDS
knowledge. Makes recommendations
for interventions.
© Joint United Nations Programme on HIV/AIDS 2000. All rights reserved. This publication may be freely reviewed, quoted, reproduced or
translated, in part or in full, provided the source is acknowledged If 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 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 do 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 Technical Update: AIDS ond mor
7215
/
Sexual behavioural change
for HIV:
Where have theories taken us?
__ _
lolm llnn.ii M-nnw,
>IIV,'AinS
UNAIDS
aiXittS
CHAPTER IP
KEY APPROACHES
TO BEHAVIOURAL
CHANGE FOR HIV
'
(A) APPROACHES AIMED AT
INDIVIDUAL LEVEL BEHAV
IOURAL CHANGE
Information, education and commu
nication
Early in the AIDS epidemic, results of popula
tion survey research alerted public health offi
cials of the diversity of sexual behaviours and
of the need to act quickly. The first interven
tions as well as the first applications of theo
ries were propelled by the urgency to do any
thing to slow the alarming crisis at hand.
Through popular public health channels,
information was disseminated to populations
at risk.
Today, many of the interventions for the pre
vention of HIV transmission, rather than using
one of the behavioural theories in its entirety,
have developed programmes based on one
or many constructs often depending on the
socio-cultural, political, or economic situation
and on the stage of the epidemic. Drawing on
various models and modifying them to suit
the population and context has been critical
to implementation of prevention projetcs,
especially in international settings, as nearly
all theories were developed In the West.
These transtheoretical approaches ate guided
by critical constructs such as risk perception,
social norms and sexual communication to
form the basis of interventions worldwide.
Mass ynd small group education
As information was initially, for many, thought
to be the key to behavioural change, HIV pre
vention programmes began with a focus on
increasing awareness about the modes of
transmission and prevention (Cohen, 1992).
Mass education for HIV prevention can take
many forms but is often seen as a key com
ponent of a comprehensive AIDS prevention
programme (Holtgrave, 1997). Mass media,
for example, are directed to the general pub
lic and aim at teaching people essential facts,
promoting healthy behaviour, quieting anxi
ety about casual transmission and preventing
discrimination.
An analysis of the messages adopted by the
information and education programmes of
national AIDS control programmes of 38 dif
ferent countries found that over 90% focused
on correcting misperceptions about AIDS.
About 80% provided information about per
sonal risk assessment (Cohen, 1992). In many
countries, mass education provided the first
step to national AIDS control programmes.
Many mass education efforts successfully
This section looks principally at the most com
raised AIDS awareness by informing individu
mon approaches used to influence HIV risk
reduction. Although these approaches are not
consistently or directly derived from behav
ioural change theories or models, they draw
on the multiple constructs mentioned above.
The section is split between individual and
als of the risks of HIV infection, and in some
community-level interventions, where the
approach is described and then specific
examples of its use are reviewed. See Table 2
for a summary of models and theories tested
by research or reviews.
cases education-based programmes were suf
ficient to change high risk behaviours,
increase condom sales, and reduce new HIV
infections (Kalichman, 1997). The channels
that national AIDS control programmes have
used for mass education include targeted
media, printed media and electronic media
(Cohen, 1992).
A review of 49 studies covering 18 countries
to identify empirical outcomes or evaluate
impact of HIV-related mass-media campaigns
In 1996 concluded that most campaigns aim
ing at "individual-level goals of knowledge,
attitude or behavioural changes were gener
ally successful at achieving these goals"
(Holtgrave, 1997). However, behavioural end
points of the projects reviewed were not men
tioned. In addition, as the author himself
.
pointed out, a substantial number of the pro
ject reports reviewed lacked methodological
details; they were reported in conference
abstracts. It is therefore difficult to conclude
on the relative meaning of the term "success
ful", particularly in relation to behavioural out
comes.
Small-group AIDS education is taking place
all over the world, advancing general knowl
edge of HIV in numerous communities. Smallgroup AIDS prevention programmes can be
seen as having 3 main components:
•
•
•
content
context
strategies (Kalichman, 1998).
Content includes goals, objectives, and activ
ities. The main content areas in most smallgroup intervention activities include: basic
education about AIDS, sensitization to ones
personal risks for HIV, instruction In individual
actions that can reduce one's risk and explor
ing new ways to communication with sex part
ners. Entire interventions or research ques
tions are built on any one of these content
areas.
The second component in small group HIV
prevention is the context. The different
aspects of the intervention should be
designed to fit the cultural, gender and devel
opmental issues of participants. For example,
one investigator felt concerns of stigma and
sexual identity were paramount to African
American gay men and dedicated an entire
session of this small-group intervention to
concentrate on those issues (Kalichman
1998).
The third component, strategy, is the process
itself, where emphasis is placed on how the
interventions are implemented between par
ticipants and group leader. Key elements to
consider include how to foster trust, build
group cohesiveness, encourage motivation
and mutual support among participants and
between participants and the facilitator
(Kalichman, 1998).
Although evaluations of small-group interven
tions have focused on content and facilitation
skills, all three components have been found
to be critical to the success of this approach.
The literature reports strong evidence for the
beneficial effects of small-group HIV preven-
x.,
. ......................
tion from randomized controlled trials of the
ory-based skills-building programmes (see
chapter III for impact of theory based inter
ventions). Several independent reviews of the
literature as a whole found that small group
HIV risk-reduction interventions result in
meaningful changes in HIV risk behaviour
(Kalichman, 1998).
One Innovative approach targeting hard-to-,
reach populations In the USA with Information
and counselling was a multiple session inter
vention designed to be delivered over the
telephone. One reason for this method was to
reach populations that do not want to meet a
health care provider face-to-face. In an evalu
ation of the study, the researcher found sig
nificant effects of their telephone-based
counselling Including a decrease in unprotected intercourse from 47% to 26% of the
men who . completed . the prpgramme
(Roffman,1997),.-l
Another study In Uganda looking at. gender
differences and. perception of risk noted that
participation In small-group AIDS education
vide a socially sanctioned opportunity for;
peer group interaction for .women (Bunnell,
1996).
I
Especially in the USA, small-group AIDS pre
vention efforts have evolved since the begin
ning of the epidemic from providing basic
information in community groups and sensi
tizing people to personal risk sensitization.
Subsequently, interventions began instructing
people on condom use skills, eroticizing safer
sex, and building safer sex communication
skills. Through interventions encompassing
these elements, many people have reduced
' high-risk sexual behaviour, but not everyone
is sensitive to small group behavioural inter
ventions. For example, small-group projects
targeting heterosexual men for HIV preven
tion have not shown significant intervention
effects. Longer-term behavioural changes
require ongoing support and modifications in
the larger social environment within which
these behaviours take place.
I
Peer education
In these various situations, peer educators
Peer education is one approach to small-
group HIV prevention usually aimed at indi
vidual behaviour. The peer health educator
approach recruits leaders in communities at
risk to be implementers of the education pro
gramme to their peers (Sepulvede, 1992).
Selection of peer educators is a key to the
success of a programme and often involves:
•
•
acceptance by other members of the
group
being an opinion leader,
thus well
respected in the group
willingness to be trained
committed to the goals of the programme
Many interventions combine peer education
with other approaches
• •
-- -- —such
——■i as the use of
social networks, condom social marketing
(Roy, 1998) and outreach (Seema, 1998 &
Boontan, 1998) as these approaches can be
complementary. Outreach work using peers
has resulted in increased participation of tar
geted community members
increased
diversity
of
(Broadhead, 1998).
as well as
participants
The benefits of working with peers rather than
with ’experts' from outside the social network
are many depending upon the group at risk.
Wmgood noted that peer educators may be a
more credible source of information for
women, may communicate in a more under
standable language, and may serve as posi
tive role models (Wingood, 1996). Other
studies have suggested that when the group
at risk is very different culturally from the
majority, peers know the cultural risks and
most appropriate and realistic risk-reduction
strategies from experience.
The peer educator approach has been used in
as diverse populations as: dock workers in
Nigena (Ogundare 1998), Arabian prisoners
in Italy (Vacondlo, 1998), street youth in
Thailand (Boontan, 1998), in-school youth in
Armenia (Ter-Hoyakimyan. 1998) secondary
school students in Argentina (Bianco, 1998),
taxi drivers in Cameroon (Moughutou, 1998)
low- and middle-class genera! population in
Zambia (Kathuria, 1998), factory workers in
Zimbabwe (Katzenstein, 1998), sex workers in
USA IR
hh' 1"8' Roy 1998)' dru9 nsers in
USA (Broadhead, 1998) and traditional heal
ers m South Africa (Green, 1994), among
many, many others.
performed differing tasks ranging from devel
opment and distribution of IEC materials
including video clips and pamphlets, as well
as condom discussion and distribution to con
versations with peers on diverse topics such
as empowerment, health and human rights,
and basic AIDS information.
Surprisingly, all of the above studies, even
though many were not randomly controlled,
indicated positive results. But here again,
many of these reports were conference
abstracts lacking methodological details.
Nevertheless, they show the astonishing
diversity of populations and contexts with
which peer education is being practised
throughout the world.
In one study that randomized 40 factories in
Zimbabwe into counselling and testing with
or without peer education, results reported a
34% lower HIV incidence in peer education
than in control group (Katzenstein, 1998), In
Zambia, authors noted dramatic declines in
syphilis seropositivity in 3 test vs. 3 control
sites (by 77%, 47% and 58%) after a 3-year
peer education programme that reached
417,000 meiin and 385,000 women (Kathuria,
1998),
Two studies analysed cost-effectiveness of
peer education interventions among IDUs In
the USA and factory workers in Zimbabwe. In
■ Zimbabwe costs compared favorably to other
^L?reVenti°n Programmes (Katzenstein,
1998), and the US researchers found that the
peer-driven intervention cost one thirtieth as
much as the traditional (external) intervention
(Broadhead, 1998),
As any other approach however, peer educa
tion has its limits. For example, in Brazil, par
ticipants of a target group became health
agents and lost their solidarity and support
within the group, which is a key element to
successful peer education (Leite, 1998)
Another example comes from a convenience
sample analysis of several peer education
programmes across the USA that found a
structural tendency for peer education pro
grammes to employ low-income people and
treat peer educators as the most marginal
sector Of the organizations staff (Maskovsky,
.... ^|l
Testing and counselling
In increasing numbers people in industrialized
countries are receiving their HIV test results as
therapeutic options become available to
more people. Research has shown many rea
sons developing nations should make volun
tary testing and counselling (VTC) accessible
to their populations (UNAIDS, 1998). Early
detection of the virus enables referral for clin
ical care and psychosocial support. Ethically
people have a right to know their serostatus
in order to protect themselves and others.
And knowing their own serostatus and the
options can motivate people to change high
er risk behaviours (De Zoysa. 1995). In addi
tion, De Zoysa notes that HIV testing and
counselling may have an important social
impact through people knowing their serosta
tus sharing it with others and laying the
groundwork for changes in social norms
about HIV and AIDS. A positive HIV result has
also encouraged some people to give per
sonal testimonies in community fora, a conse
quence that can have a powerful effect on
individual attitudes, behaviours and social
norms. In cultural contexts where fertility is
highly valued, testing and counselling pro
vides an important behavioural-change alter
native to consistent condom use.
The theoretical foundation on which interven
tions providing testing and counselling are
built principally invofves the stages of change
model (De Zoysa, 1995). HIV testing and
ing drug users, women) risk reduction was not
significantly associated with counselling and
testing (Higgins, 1991).
An updated review of 35 studies conducted
by Wolitski et al. In 1997 found similar results
to those of Higgins et al for some population
groups. The clearest evidence for positive
behavioural effects of HIV VTC has been het
erosexual sero-discordant couples where HIV
counselling and testing was a significant moti
vating factor to risk reduction. Studies of
MSM have also indicated significant risk
reduction but it was not clearly related to their
testing for HIV. Yet a UNAIDS report notes
that among a sample of HIV-infected homo
sexual men in Norway the number of sex part
ners decreased from an average of 4.3 a year
before to 1.6 after counselling and testing
(UNAIDS, 1998). In HIV serodiscordant cou
ples a consistent reduction in sexual risk prac
tices followed HIV testing and counselling.
Similarly, in most injecting drug users studies,
counselling and testing proved to be benefi
cial in reducing dangerous sexual practices
(Wolitski, 1997). Across populations, individu
als who learn they are HIV positive have been
found to be more likely to change behaviour
than those who learn they are HIV negative.
More recently a randomized controlled trial in
3 developing countries (Kenya, Tanzania and
Trinidad and Tobago) showed that couples
receiving counselling and testing reduced
' unprotected intercourse among their spous
counselling may promote progression across
the continuum of the stages of change. For
example, in rural southwestern Uganda, a
setting with high HIV prevalence, the majority
of respondents in a research study reported
that they had already made behavioural
changes because of AIDS, but making further
changes to protect themselves was contin
that VTC produced significant changes in
gent on knowing their HIV serostatus
(Bunnell, 1996). It has thus been suggested
uating HIV post-test prevention counselling
es, especially among serodiscordant and
seropositive concordant couples (Coates,
1998a). However, results specifically found
reducing high-risk sexual practices with non
primary partners (Coates, 1998).
In the USA, a randomized controlled trial eval
was conducted in 5 STD clinics comparing 3
arms: (1) HIV education including 2 sessions
with brief HIV/STD messages, (2) HIV preven
cacy and personal skills, and through reinforc
tion counselling, 2 sessions aimed at increas
ing social norms or responsibility (De Zoysa,
ing risk perception, (3) enhanced counselling,
4 sessions based on theoretical constructs of
behavioural change; self efficacy and per
In 1991, in an extensive review of 50 testing
ceived norms, over a 12-month period. They
and counselling studies in Africa, Australia,
found marked changes in condom use with
Europe and North America, Higgins et al
both main and other partners across arms of
found substantial risk reduction only among
the study (Kamb, 1996). After 12 months,
heterosexual couples with one infected part
there were 19% fewer new STD cases in the
ner. In other groups (homosexual men, injectI brief counselling group, and 22% fewer in the
that counselling promotes risk reduction
through increasing perception of risk, self-effi
i6M
»Ji..
enhanced counselling group, compared with
the group that had received only educational
messages (Kamb, 1998). These findings sup
port other studies showing benefits of client
centered counselling combined with HIV test
results.
Other, non-randomized studies in Rwanda,
Uganda, Kenya and Zaire reported VTC to be
a motivating factor especially for couples to
change behaviour (Allen, 1992; Campbell,
1997; Choi, 1994; Alwano-Edyegu, 1996).
The AIDS Support Organization (TASO) pro
vides counselling and support services to a
variety of clients with AIDS in urban and rural
Uganda. In an overall evaluation of TASO, it
was noted that 90% of all clients had revealed
their HIV status to somebody following TASO
services. In contrast, a study in the Gambia
showed no effect of individual post-test coun
selling on condom use among prostitutes
who already had high rates of condom use
before the intervention (Pickering, 1993).
Wolitski sums up by noting that "there is no
r>
question that HIV VTC can and does motivate
behavioural change in some individuals", but
also that VTC alone does not always lead to
changes and does not have the same effect in
all populations and in different situations
(Wolitski, 1997). As with most other approach
es, the stage of the epidemic and surround
ing contextual factors will contribute to the
outcome of the intervention. In addition, the
quality of the counselling provided is a key
variable in predicting the impact of the inter
vention.
Conclusion
After years of experience with HIV prevention
and the variety of interventions aimed at indi
vidual behavioural change tested in diverse
situations, certain characteristics of successful
programmes point to key elements of
approaches to behavioural change pro
grammes. These elements include: increasing
participants ability to communicate effective
ly about sex; helping participants increase
their condom use skills; personalizing risk,
achieving participants perception of risk
avoidance as an accepted social norm, pro
viding reinforcement and support for sustain
ing risk reduction. For individual level inter
ventions to be successful, context specific
information and skills are critical.
(B) COMMUNITY-LEVEL
INTERVENTIONS
Community-level approaches grew out of the
realization that, despite the considerable risk
reduction through individual-level behaviour
al change approaches, different approaches
were needed as well. Social epidemiology,
pointing to differences in prevalence among
different social categories within a given risk
category in a community suggested interven
ing along these lines (Friedman, 1997). The
programmes in this section encompass the
most widely publicized approaches to com
munity level HIV prevention including: inter
ventions based on social influence and social
networks, outreach programmes, school
based programmes, condom promotion and
social marketing, community organizing and
empowerment and policy level interventions.
Each of these types of interventions either try
to reduce individual vulnerability to or trans
missibility of HIV, change community norms,
limit dispersal of high seroprevalence net
works or change community organizational
structures making them less dangerous
(Friedman, 1997). Changing community cul
tures or community norms provides motiva
tion and reinforcement for individual HIV risk
reduction. Many of the following programmes
us© ideas from the theory of reasoned action,
the diffusion of innovations model and the
theory of social influence to mobilize peer
pressure or to ostracize individuals who con
tinue high-risk practices. Policy level changes
such as closing of bathhouses and enforcing
condom use in brothels also account for sig
nificant impact in community risk practices.
Social influence and social network
interventions
Based on the theories of social influence, dif
fusion of innovation, reasoned action and
social cognitive theory, these interventions
use peers and social networks to disseminate
information. Social influence interventions
identify key persons in communities who are
capable of influencing others. The social cog
nitive theory posits that trusted role models
are an important factor in the environment
and the environment has a reciprocal relation
ship both with behaviour and the individual.
In the theory of reasoned action, perceptions
of social norms have a critical influence on
behaviour. Social norms created by opinion
leaders will ideally have a strong effect on
behaviour. Diffusion of innovation theory
an'.'
' I
asserts that changing behaviour will more
likely happen if the new behaviour is compat
ible with accepted social norms of a specific
social network, is simple to do, and has
observable outcomes (Kalichman, 1998).
Ones social network can be a source of emo
tional and instrumental support and a refer
ence that establishes social norms.
Research implemented using peer educators
to influence social networks in gay communi
ties showed significant self-reported changes
in safer sex practices after intervention
(Auerbach, 1994). Encouraging results in
changing social norms and safer sex behav
iour have also been noted in a number of
community-level social influence interven
tions in the USA.-One programme imple
mented among men frequenting gay bars in
three Southern cities began by identifying
and recruiting opinion leaders. Project staff
then trained leaders in risk-reduction, and the
final stage involved opinion leaders in dis
seminating prevention messages to friends
and other members of their social networks
(Kalichman 1998, Kelly, 1992). In a later study
using the same methods, researchers used a
randomized experimental design with four
test and four control cities and showed a
decrease in population-level rates of risk
behaviour after one year (Kelly, 1997),
The Mpowerment project was similar to the
above studies but focused on young gay men
m a midsize urban community in the USA, and
included in the intervention package a public
ity campaign and small group sessions con
centrating on individual behavioural change
(Kegeles. 1996), In the test city, there was a
outreach, small groups and community activi
ties to encourage social norms supportive of
safer-sex as well as reduction of individual
high-risk behaviour (Kalichman,
1998).
Women who were Identified as opinion lead
ers participated in a 4-session skills-building
intervention centered on HIV prevention
knowledge and behaviour. These women
recruited other women who participated in
the same Intervention and the cyclo contin
ued until about half the women in the housing
development were reached. At the same
time, social norm-changing events were
being implemented. Results of this random
ized controlled trial found that condom use
reported by women in the intervention site
increased from 29% at baseline to 41% at 3-
month follow-up (Kalichman, 1998).
The National AIDS Demonstration Research
Projects implemented in more than 60 sites In
the USA to evaluate strategies among IDUs,
combined research methodologies but
focused on the social networks of IDUs as the
primary target group. The Indigenous Leader
Outreach Intervention Model which combines
medical epidemiology and community
ethnography guided the project. Former IDUs
were employed as outreach workers whose
job was to identify and access the social net
work. document the norms, values and situationa! factors relating to risk practices. Former
IDUs were also responsible for delivering the
HIV prevention services. After a four-year
intervention, incidence of HIV decreased from
8.4 to 2.4 per 100 person years. Sex risk prac
^b/o reduction in unprotected anal inter
course compared to 3% in the control city. A
ollow-up study examined the effectiveness of
the different programme components (small
tices decreased less dramatically than drug
loom t W6nt fr°m 71% to 45% Niebel,
1996). The same model was tested among
groups, social events, and outreach) on post
intervention sexual risk-taking. The small
groups had a large effect size, but reached
substantially fewer men than social events
and outreach. Although not as powerful, the
social events and outreach were critical to the
effectiveness of the programme as sources of
sex workers in Indonesia with encouraging
results (Gordon, 1998).
Interpreting these results for social influence
interventions indicates that multi-component,
Individual and community level that combine
cogntive-behavioural and norm-changing
activities can result in positive changes for
MSM and heterosexual women. Despite the
fact that all published reports described here
were based on interventions in the USA, since
they are based on conversations with peers
recruitment to the small groups and as a
n^®ans of reaching men not interested in
9rOL'pS' Authors included
that the effectiveness of programme compo
nents were not independent; the synergy ereated by the whole programme makes the net
maTtf/ the intervention activities greater
than the sum of its parts (Kegeles, 1998a).
':ffl
Sikkema et al. tested a comparable approach
with women living in urban, low-income hous
ing developments. The intervention included
one could assume that they would be ideal for
other populations (even non-literate) as well.
a
HF
Outreach interventions
Outreach interventions are conceptualized in
a similar manner to social influence interven
tions in that they use individuals to pass on
information within social networks, however
the influential person may or may not be from
the targeted community. The outreach worker
enters the social system to instigate behav
ioural change as an individual change agent
Targeted communities are often hard-toreach groups such as dr(jg users sex
O drug users, sex workers as well as isolated
rural populations. The aims of outreach have
often been harm reduction strategies such as
providing condoms to sex workers, but not
necessarily addressing sex work itself.
Three large-scale research trials in the USA
examined the effects of outreach delivered
P^^rdy to injecting drug users. The National
AIDS Demonstration Research Projects tar
Interventions using outreach as a strategy
outreach as
have been carefully tested in the USA among
diverse populations and have shown encour
aging results. This approach lends itself as
well to hard-to-reach populations and has
been used in many parts of the world though
randomized controlled trials have not been
reported outside the USA.
School-based interventions
By
the
early
1990s,
school-based
pro
grammes for HIV education existed in about
^ quarters of industrialized countries and
60/o of developing countries according to a
survey of 38 countries (Cohen, 1992). Besides
interventions that simply provide basic AIDS
nformation in the classroom, multi-dimen
qeted over 36,000 out-of treatment injecting
inch^i SCh1OOl’baSed Programmes generally
include classroom skills-building sessions
school-wide peer-led activities, and social
norm changing programmes. Promoton of
toes werrS'
that ™ P^C
bees were much more difficult to change than
condom use was the theme most frequently
adopted in programmes for youth in and oin
/ectsdWOhd,U9 U5"'9 eqUiprnent
pro
jects did show reductions in sex risk practices
but less dramatically than for drug dsk prac'
toes (Wiebel, 1996),
y nsx prac-
o s h00', k01’0"' 1"2)' Al’ oxte"slve review
of school-based interventions revealed that
A second initiative entitled the AIDS
Evaluation of Street Outreach Preets sup
citoranV^ CDC WaS C°ndUCted '-i^
will as bein
PrOmiSing °Utcomes as
Jto! found h COSt-effective- A9ain, this pro-
change than ^xuarbeha^o^A tS^
no comprehensive school-based HlV-preventon interventions evaluated showed signs of
promotmg sexual acting out or hastening the
onset of sexual intercourse (UNAIDS 1997) |t
“o-raa-ialc.in
"
\ accurate information was
provided about
the risks involved in i-*
vkjiveu in Unprotected
unprotected sex
enabling informed behavioural decision
^str^^ect^jmp^^
programmes included skills building ses
sions enhancing self-efficacy for safer-sex
negotiating practices
components were often based
on social
cognitive theory Including rmodeling of
safer behaviours (Kirby, 1994)
activities were conducted in small groups
or had a minimum of 14 hours of contact
opportunities for youth to personalize
information were provided
the communities moved across rh„
v7nto;Stl9lO,Chan9ef--n:theX'
ention. A dose-response effect was noted
1998)
yyb' Kalichman,
social pressures to
engage in sex were
addressed with strategies for
resisting
peer pressure
reinforced supportive group norms and
appropriate individual values for enqag
ing m safer behaviour were emphasized
ers and/r3’"'09
Pr°Vided for teach-
The element distinguishing school-based pro
grammes from other interventions for youth
was the supportive structural aspect played
hy schools and teachers, and the Interaction
between school, parents, students and com
munity (Peersman. 1998, Kalichman, 1998)
which necessitates asking the consumer
always and often about his or her point of
view. Modifying products requires a good
understanding of the culture of the target
group. Availing condoms at non-traditional
outlets such as truck stops, bars, and hotels is
integral to social marketing success. Flooding
these non-traditional outlets with condoms
aims not only to increase availability but also
°'"brease social acceptability (World Bank,
It has now been proven numerous times that
correct use of condoms is an effective method
of preventing HIV transmission. Yet. countless
research studies have identified obstac.es to
ncludin6 7 Settin9S throu9hout ^e world,
nicatfona,naCCe5Sibility and Panner commumcation among other factors.
deluded tial hH1V Prevention Programmes
ncluded condom promotion and free distrib
ution as part of a comprehensive HIV prevent on package. Free distribution was essential-
y aimed at introducing condoms where they
Were not previously available or distributing
iem to destitute populations at high risk
such as sex workers and refugees. Although
corned0"? aCCOmplished its intended out-
dZ to 7aar
9 C°ndOmS aCCeSSible With°Pt
delay to large populations, the lack of sus
“^-dreliabintyOffreecond^X
tribution programmes commanded the intro
duction of condom socia! marketing sirate-
9 es especially aimed at certain populations.
Condom social marketing, which may well be
Pines including operant conditioning and
strar
WesTBeTLT^T"
am°that
n9 Sexcondom
workersuse
West Bengal, India, 16
found
rates rose from 3% to 81%, a social marketing
campaign was launched. Six months into the
project using peer education and community
participation, free distribution of condoms
had decreased by 50% and the same amount
of condoms had been sold (Banerjee, 1998)
Social marketing programmes have also been
Can h°P n iM MeXiC°' Dominica" ^public
Canada, Brazil, Vietnam, Pakistan, Zambia'
fo7 HIV3’ Camer°On' South Africa and Haiti
1998) f P,.eVentlon (Holtgrave, 1997, PSI,
1998). Evaluations have shown success in
increasing condom use especially among
adolescents in Zambia and among m^rded
women in small urban areas in PakLn (PSJ
i
I
Besides condom p--------promotion, social marketing
techniques have also I
been effective for other
HIV prevention strategies such
------1 as promotion
the USA^Futf C°UnSellin9 for adolescents
the USA (Futterman, 1998), and the recruitin
ss—has been termed
before social r
_z.
marketing
campaigns (World
Bank, 1997). After
S’ a 3-year peer-led condom
Zls0^656"^ PartiCipants in
(lorres-Burges, 1998).
rnarketi"9
°r9ani2in9' empower,
ment and participatory action
research
Pleasant (like condom use) if thev
"" W”“>» ben«« (K.„eOy,
per-
bases
ssssn
sir;
i
a m
—T-r-i.....................................................................
■
CHAPTER
men; the physical environment by including
access to appropriate services and materials
such as battered womens shelters and both
male and female condoms; the structural
environment such as opportunities for women
to change their economic status; and the policy/legal environment such as businesses pro
viding paid leave for community service and
child care (Beeker, 1998).
and community psychology (Beeker, 1998).
From the field of education, Wallerstein
defined empowerment as:
"Empowerment education, as developed
from Paulo Freire's writings, involves peo
ple in group efforts to identify their prob
lems, to critically assess social and histori
cal roots of problems, to envision a
healthier society, and to develop strate
gies to overcome obstacles in achieving
their goals. Through community participa
tion, people develop new beliefs in their
ability to influence their personal and
social spheres. An empowering health
education effort therefore involves much
more than improving self-esteem, selfefficacy or other health behaviours that
are independent from environmental or
community change; the targets are indi
vidual, group and structural change.
Empowerment embodies a broad process
Community participation at all levels of imple
mentation is an integral aspect of community
empowerment approaches. Interventions
include community organizing, and participa
tory action research (PAR) into their pro
grammes (Israel, 1994, Hiebert, 1998). A
strength of PAR resides in the ability of partic
ipants in conjunction with committed and cre
ative professionals to adapt methods and
content to diverse contexts. The positive out
comes of PAR arise from its collaborative,
trust-building capacity, with direct community
Input that responds to emerging changes in
social, political and economic situations
(Stevens, 1998). These interventions seek to
support communities to be self-determining
in their ability to integrate HIV programmes
into existing community structures by assess
ing their own needs and priorities, defining,
implementing and evaluating their own work1.
that encompasses prevention as well as
other goals of community connectedness,
self-development, improved quality of
life, and socialjustice." (Wallerstein, 1988)
Beeker suggests a definition of an empower
ment intervention as follows:
"A community empowerment interven
tion seeks to effect community-wide
change in health-related behaviours by
organizing communities to define their
health problems, to identify the determi
nants of those problems and to engage in
effective individual and collective action
to change those determinants." (Beeker,
1998).
Empowerment
approaches
assume
that
health behaviours are not completely under
volitional control of individuals, thus are not
entirely isolated events, but embedded with
in social, cultural and economic surroundings.
A CDC-funded intervention developed for
• The impact of society's defined gender roles
tion. control). The HIV prevention arm
focused on enhancing women's skills in nego
tiating condom use with their partners using
role-play and rehearsal, among other meth^
ods. Consistent, with empowerment ideals,
the content included other health matters in
addition to HIV prevention and activities were
developed to encourage a feeling of 'com
munal mindedness' In the group. The idea
was to promote mutual support in the process
on protective health behaviour of women
highlights the importance of empowerment
approaches, especially for HIV-vulnerable
women. Beeker describes ideally what the
components of an intervention based on
community empowerment for women would
look like. The intervention would address the
cultural environment by recognizing gender
roles that define women as subordinate to
1
l
Empowerment approaches have been used
for AIDS risk reduction through numerous dif
ferent strategies and in countless different
settings and contexts. The literature describes
empowerment interventions directed at
women, young gay men, youth, people with
HIV and AIDS as well as many other commu
nities at risk.
young, pregnant women from low Income
communities, m the USA. randomly assigned
women to one of three, arms (four, sessions
AIDS prevention. 4 sessions health promo
See /srae/ et a/., 1994 or IUCN. 1997 for complete deTinnior^ande^
21
SO
panicip^^^
research.
ksn
• - - • *'
of behavioural change. Results indicated that
women in the HIV prevention group showed
greater changes in intention and practice of
safer sexual behaviours than women in other
groups (Beeker, 1998). Comments by authors
of the report concluded that women in the
HIV prevention group gained a sense of per
A'lWI
Ji*
health issues (Beeker, 1998). Although tools
for measurement of single and multi-level
(from personal to community level) empower
ment have been developed and tested, they
have not yet been used on a wide scale
(Israel, 1994).
ceived control over their lives.
Policy level interventions
An intervention using PAR among lesbian
women highlighted the power of community
ownership of the project and its continuity
over time that provided a space for engage
ment and commitment where women focused
on community mores, values, and social
expectations about sexual relating, drug use
and HIV. The feeling of solidarity with peer
educators enabled women to reduce risk
behaviours (Stevens, 1998).
Policy
level
interventions are
’enabling'
approaches that attempt to remove structural
barriers at a larger level. Many believe that
AIDS interventions are moving from solely
investigating individual approaches to multi
dimensional models of community mobiliza
tion, empowerment and structural policy level
interventions (Beeker 1998, Parker 1996).
The earliest and some of the most effective
Empowerment can Ihave far-reaching positive
health and welfare benefits. Schuler
et al.
describes the impact of involving
women in
credit programmes on contraceptive use. She
found that, in Bangladesh, rural credit pro
grammes for women can play an important
role in changing fertility norms and accelerat-
mg contraceptive use by strengthening
womens economic positions and fostering
women's empowerment (Schuler, 1994),
Other empowerment interventions for sex
workers include a project in Zambia, where
women fish traders who often experience sex
ual exploitation have been supported in form
ing economic cooperatives as a way of pro
tecting themselves against HIV. A second
example is a programme in India where
women have been taught how to collectively
save sufficient savings to pay bonds binding
iqqT, tO SeX W°rk (A99leton, 1998, Tawil,
efforts of community level change for HIV
have resulted from social action ACTUP,
formed in 1987 in New York, is responsible for
many successful policy initiatives for people
living with HIV and AIDS as well as advocating
for everyone's responsibility to practise safer
sex.
Another widely recognized policy level inter
vention is the 100% Condom Programme in
I hailand that mandated condom use in broth
els and during other commercial sex encoun
ters. Components of the programme included
a requirement that sex workers use condoms
with all clients, that condom use be moni
tored, that brothel owners and managers
assist in promoting condom use with uncoop
erative clients and that there should be sanc
tions against brothel owners for non-compli
ance (Aggieton, 1996). The programme
showed a dramatic increase in self-reported
^Oono,? USe dUrin9 cornrnercial sex acts (14%
to 90%), a decline in reported STD attendees
Importantly, Beeker reminds us that empow
erment approaches do not strive to substitute
for individual psychosocial interventions, but
to widen the lens to include person-in-environment’ approaches. She notes that there is
increased commitment to community participation, but that there remains a difficultly sur
mountable gap between empowerment
rhetoric and practice. For that gap to be
bridged, one key element is progress in oper
ationalizing new concepts and constructs, and
testing hypothesized relationships between
for example, community participation and
community capacity to effectively address
m government clinics, and a decline of HIV
positive army conscripts (Friedman, 1997)
Success of the programme has been attrib
uted to the fact that it was based on harm
reduction in a population at very high risk. It
did not try to eliminate the brothels but
attempted to reduce HIV transmission within
them, and it
It used national policy
which
|
ensured a broad and lasting effort (Friedman,
I wO I j ,
Conclusion
HIV prevention at the community level is an
integral component to check further spread of
':W
X- w..
I
HIV. By working with communities, in contrast
to individuals, one is focusing on changing
policy, social structures, social norms and cub
tural practices that surround individual risk
behaviours. Community level changes work-
in- at the level of changing subcultures have
potential to effect long-term maintenance of
Changed behaviours, by changing the envi
ronment surrounding individuals to support
safer behaviours. At the same time, many of
these approaches highlight the importance of
er indTi
tO inC'Ude and emP™-
individuals. It is important to note that
many of the interventions mentioned above
may have imtially focused on one level (such
as policy, or empowering individuals), but as
the programmes developed they generallv
include more target levels including changing
S ) C and SUbCU'tUreS <Fded™n
^7). Programmes discussed here have been
the most widely
7 publicized approaches to
community level HIV f
prevention yet many
more innovative projects
exist worldwide.
Finally, development of methods for imole
mentation and evaluation of community-level
a ZZmeS haS
been oPerationalized on
these oroaratrUm' ASSeSSin9 effe«iveness of
challenging is^L^h^melsurina^ 6^ °f
grammes and the ability to carrv th
i
I
ft.;
MM ■
■
I
,s
t I UNAIDS
•UNDCp
UNESCO *UNDP
WHO••UNFPA
WORLD
BANK
Joint United Nations Programme on HIV/A1DS (UNAIDS)
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
I
■X
■
J n
+
Ji*
World Health
.........
NAIDS
/st-
-
Opening up the HIV/AIDS epidemic
This document is an executive summary of
Opening up the HIV/AIDS epidemic :
guidance on encouraging beneficial disclosure, ethical partner
counselling & appropriate use of HIV case-reporting
(LXAIDS Best Practice Collection. Key Material),
copies of which ma\ be obtained from the I'N/MDS Information Centre
(also available in other languages)
or accessed directly on the Web site - see below.
UNAIDS/00.36 E (English original. November 2000)
ISBN: 92-9173-019-X
QJoint I nited Nations Programme on HIV/AIDS ((JNAIDS) 2000. All rights
reserved. TIHs document, which is not a formal publication of (INAIDS,
may be freely reviewed, quoted, reproduced or translated, in part or in full,
provided that the source is acknowledged. The document may not be sold
or used in conjunction with commercial purposes without prior approval
from INAl DS (contact: INAIDS Information Centre).
I XAIDS. 20 avenue \ppia. 1211 Geneva 27. Switzerland
Tel. (+41 22) ’91 46 51 - Fax (+41 22) 791 41 S7
E-mail: unaids(« unaids.org- Internet: http: www.unaids.org
Executive Summary
Faced with the increasingly devastating impact of HIV/AIDS on
individual and community well-being, and on development, life
expectancy and childhood mortality, many governments have
been reviewing the nature of their response to HIV/AIDS. Some
have raised the issue of whether the principles of confidentiality
and informed consent have hindered efforts to prevent the
onward transmission of HIV. Particular concern has been
expressed regarding the vulnerability of women to infection by
husbands or partners who do not know their status, or refuse to
reveal it or refuse to practise safe sex. This has led to calls to
adopt policies such as named HIV case-reporting, mandatory
disclosure of status and criminalizing the deliberate transmission
of HIV.
Recent international consultations on these matters have
confirmed that the principles of confidentiality and informed
consent are not obstacles to effective prevention and care
programmes. In fact, if employed appropriately, they are not only
valid ethical principles, but are also pragmatic tools by which to
best protect both the non-infected and the infected. Rather, it is
HIV-related denial, stigma and discrimination, and the secrecy
that results from these, that compose major impediments to an
effective response to HIV/AIDS.
3
INAIDS/WiK)
Although the epidemic is over 15 years old and although HIV
prevalence is very high in many communities, HIV/AIDS
continues to be denied at the national, social and individual levels;
to be highly stigmatized, and to cause serious discrimination
based on HIV/AIDS status. There are many reasons for the
stigma, denial, discrimination and secrecy that surround HIV/
AIDS, and these will differ from culture to culture. However, in
general, it can be pointed out that HIV/AIDS is a condition related
to sex, blood, death, disease and behaviour which may be illegal
- commercial sex, homosexuality, injecting drugs. The fear and
taboos associated with these subjects lead to the denial, stigma
and discrimination that surround HIV/AIDS, and breed the
secrecy that hinders private and community discussion about
the issues and behaviour involved.
Denial causes individuals to refuse to acknowledge that they
are threatened by a previously unknown virus which requires
them to talk about, and to change, intimate behaviour, possibly
for the rest of their lives. Demal also causes communities and
nations to refuse to acknowledge the HIV threat, and the fact
that its causes and consequences will require them to deal with
many difficult and controversial subjects, e.g. the nature of
cultural norms governing male and female sexuality, the social
and economic status of women, sex work, families separated
by migration/work. inequities in health care and education,
injecting drug use. Stigma and discrimination, and the fact that
for many there is no available treatment, cause individuals to
fear getting tested for HIV and to fear disclosing it to health care
i
Opening up the HIV AIDS epidemic
workers, for care; to families and communities, for support: and
to sexual and drug-injecting partners, to prevent onward
transmission of HIV.
The prevalence of denial, stigma, discrimination and secre
indicate that there is a clear and urgent need to "open up" the
epidemic. How to achieve this? It is neither feasible nor desirable
to force people: to get tested (and retested throughout their lives);
to disclose their status; to change their behaviour. This would
require the creation of a health "police" state requiring vast
amounts of resources for testing and policing. It would also drive
further underground the very kinds of behaviour that are already
hidden and need to be changed.
However, it is feasible and desirable to open up the epidemic in
ways that will reduce denial, stigma and discrimination, and wili
create an environment in which many more people have
incentives to access prevention and care services, and are
supported to change their behaviour for prevention purposes, to
disclose their status to partners and families, and receive care,
support and compassion. In this document, the UNAIDS
Secretariat and WHO offer guidance concerning how this might
best be achieved by policies and programmes that encourage:
beneficial disclosure;
ethical partner counselling;
> appropriate use of HIV case-reporting.
Opening up the HIV/AIDS epidemic. Guidance on encourage3 oeneticiai disclosure,
ethical oartner counselling & appropriate use of HIV case-recc" ng i UNAIDS 3est Practice
Collection. Key Material. UNAIDS WHO. Geneva. November 22'.O'.
5
LXAiDS/WHO
Opening up the H/V AIDS epidemic
. As UN system organizations. UNAIDS and WHO are committed
to the promotion and protection of human rights, ethical principles
. and public health. The guidance offered here is based on the
firm belief that human rights and ethical principles provide a
fr<
vork by which the dignity and health of both those
uninfected and those infected by HIV are safeguarded.
Furthermore, adherence to human rights and ethical principles
is essential to create an effective public health environment in
which the most people are encouraged to, and indeed do, change
their behaviour, prevent their own infection or onward
transmission, and receive care. Finally, UNAIDS and WHO are
also committed to the view that individuals and communities can
be, and should be. empowered to deal with the health challenqes
they face.
In the context of HIV/AIDS. UNAIDS and WHO encourage
beneficial disclosure of HIV/AIDS status. This is disclosure
that is voluntary; respects the autonomy and dignity of the
affected individuals; maintains confidentiality as appropriate
leads to beneficial results for the individual, his/her sexual and
drug-injecting partners, and family; leads to greater openness
in the community about HIV/AIDS: and meets ethical imperatives
so as to maximize good for both the uninfected and the infected.
In order to encourage beneficial disclosure, there should be
cre<
an environment in which more people are willing and
^able iu get tested for HIV. and are empowered and encouraged
()
I
I
to change their behaviour according to the results. This cgn be
done by: establishing more voluntary counselling and testing
services; providing incentives to get tested in the form of greater
access to community care and support, and examples of positive
living; and removing disincentives to testing and disclosure by
protecting people from stigma and discrimination.
There already exist a number of community care and support
programmes throughout the world that are achieving these
results. These should be replicated within and outside
governmental programmes. Further, much more can be done
by governments to encourage voluntary testing, counselling and
beneficial disclosure by implementing public information and
media campaigns that promote tolerance and compassion;
enacting laws and regulations and implementing legal and social
support services that protect against discrimination; supporting
community-based organizations engaged in these activities; and
involving people living with HIV/AIDS in the formulation and
implementation of HIV programmes and policies.
With regard to partner counselling (partner notification), UNAIDS
and WHO encourage ethical partner counselling. Such partner
counselling is based on the informed consent of the source client,
and maintains the confidentiality of the source client, where
possible. However, it also takes into account the serious possible
consequence of not counselling partners - that is, HIV infection.
1
INA1DS/WH0
Opening up the HIV/AIDS epidemic
Because refusal to counsel partners can result in the onward
transmission of HIV, HIV counselling and partner counselling
programmes should involve strong and professional efforts to
encourage, persuade and support HIV-positive persons to notify
and counsel partners. In the few cases in which a properly
counselled HIV-positive person refuses to counsel partners, the
health care provider should be able to counsel partners, without
the consent of the source client, after there has been an ethical
weighing of the potential harms involved, and appropriate steps
have been taken. These steps involve repeated efforts to
persuade the source client to counsel partners, informing the
source client that partner counselling will occur, keeping his/her
name confidential if possible: and ensuring social and legal
support for the source client and other relevant parties (spouses,
partners, family members) to protect them from any physical
abuse, discrimination and stigma which may result from partner
counselling.
UNAIDS and WHO recommend the appropriate use of HIV
case-reporting. It has been suggested that HIV case-reporting,
including named HIV case-reporting (i.e. the reporting to public
health authorities of each individual identified as HIV-positiv
could provide accurate information on the spread of HIV, anu
allow effective actions to prevent further infections and ensure
access to care services. However, in resource-poor settings,
certain conditions result in the fact that HIV case-reporting does
not provide accurate data for surveillance purposes and does
not result in better prevention and care. These conditions are:
little access to. or use of. HIV tests; a reporting system which
suffers from under-reporting, under-diagnosing and insufficient
infrastructure to protect confidentiality; little or no access to anti
retrovirals: and limited resources which would be better utilized
in increasing access to voluntary testing and care and improving
prevention activities. In countries where such conditions exist, it
is recommended that HIV case-reporting not be carried out.
There is much that governments can do to create conditions to
encourage ethical partner counselling. These include setting out
policies, laws and guidelines which protect confidentiality and
informed consent, and outline clearly the limited circumstances
under which partner counselling may take place without consent:
training health care workers and counsellors in ethical partner
counselling; and increasing social and legal support for those
who are involved in partner counselling.
Rather, in assessing the use of HIV case-reporting and other
surveillance strategies, countries should refer to the framework
of second-generation HIV surveillance, where UNAIDS and
WHO recommend a combination of both biological and
behavioural surveillance tools and suggest that a country choose
appropriate surveillance based on its resources and the natum
of its epidemic burden and health care response. In gener,
such surveillance is cost-effective given the financial and human
X
9
UNAIDS, WHO
Opening up the HIV/A1DS epidemic
resources available; refines, as well as reinforces, prevention
and|CMe efforts; ma'ntains confidentiality; optimizes access to
available treatment options, where this is possible; and leads to
regular and wide dissemination of information to the population
in n
tigmatizing ways that help to open up the epidemic
decrease demal and increase commitment to fight the epidemic.’
In low-income countries, depending on the state of the epidemic
and other factors, it is likely that HIV sentinel surveillance will be
the most appropriate form of surveillance to employ.
Uhc Joint United Nations Programme on IIIV/AIDS
UNAIDS/WHO
(I NA1DS) is rhe leading advocate forglobal action on 11IV/
AIDS. It brings together seven UN agencies in a common
effort ro fight the epidemic: the United Nations Childrens
l und (UNICIT), the United Nations Development Pro
gramme (UNDP), the United Nations Population bund
(I NI PA), the Unircd Nations International Drug ControlProgramme (UNDCP), the United Nations l-.ducanonal.
Scientific and Cultural ()rganization (I Nl .SCf)), the World
Health Organization (WHO) and the World Bank.
I NAIDS both mobilizes rhe responses to the epidemic of
Its seven cosponsoring organizations and supplements these
cftorrs with special initiatives. Its purpose is to lead and assist
an expansion of the international response to HIX’ on all
fronts: medical, public health, social, economic, cultural,
political and human rights. UNAIDS works with a broad
range of partners - governmental and NCO. business,
scientific and lay - to share knowledge, skills and best practice
across boundaries.
io
Produced n ith enrirou/ueut friendly iHahnals
T?1!’
CHAPTERIII^^KEY APPROACHES
TO BEHAVIOURAL
CHANGE FOR HIV
(A) APPROACHES AIMED AT
INDIVIDUAL LEVEL BEHAV
IOURAL CHANGE
Information, education and commu
nication
Early in the AIDS epidemic, results of popula
tion survey research alerted public health offi
cials of the diversity of sexual behaviours and
of the need to act quickly. The first interven
tions as well as the first applications of theo
ries were propelled by the urgency to do any
thing to slow the alarming crisis at hand.
Through popular public health channels,
information was disseminated to populations
at risk.
Today, many of the interventions for the pre
vention of HIV transmission, rather than using
one of the behavioural theories in its entirety,
have developed programmes based on one
or many constructs often depending on the
socio-cultural, political, or economic situation
and on the stage of the epidemic. Drawing on
various models and modifying them to suit
the population and context has been critical
to implementation of prevention projetcs,
especially in international settings, as nearly
all theories were developed in the West.
These transtheoretical approaches afe guided
by critical constructs such as risk perception,
social norms and sexual communication to
form the basis of interventions worldwide.
This section looks principally at the most com
mon approaches used to influence HIV risk
reduction. Although these approaches are not
consistently or directly derived from behav
ioural change theories or models, they draw
on the multiple constructs mentioned above.
The section is split between individual and
community-level interventions, where, the
approach is described and then specific
examples of its use are reviewed. See Table 2
for a summary of models and theories tested
by research or reviews.
Mass and small group education
As information was initially, for many, thought
to be the key to behavioural change, HIV pre
vention programmes began with a focus on
increasing awareness about the modes of
transmission and prevention (Cohen, 1992).
Mass education for HIV prevention can take
many forms but is often seen as a key com
ponent of a comprehensive AIDS prevention
programme (Holtgrave, 1997). Mass media,
for example, are directed to the general pub
lic and aim at teaching people essential facts,
promoting healthy behaviour, quieting anxi
ety about casual transmission and preventing
discrimination.
An analysis of the messages adopted by the
information and education programmes of
national AIDS control programmes of 38 dif
ferent countries found that over 90% focused
on correcting misperceptions about AIDS.
About 80% provided Information about per
sonal risk assessment (Cohen, 1992). In many
countries, mass education provided the first
step to national AIDS control programmes.
Many mass education efforts successfully
raised AIDS awareness by informing individu
als of the risks of HIV infection, and in some
cases education-based programmes were suf
ficient to change high risk behaviours,
increase condom sales, and reduce new HIV
infections (Kalichman, 1997). The channels
that national AIDS control programmes have
used for mass education include targeted
media, printed media and electronic media
(Cohen, 1992).
A review of 49 studies covering 18 countries
to identify empirical outcomes or evaluate
impact of HIV-related mass-media campaigns
In 1996 concluded that most campaigns aim
ing at "individual-level goals of knowledge,
attitude or behavioural changes were gener
ally successful at achieving these goals"
(Holtgrave, 1997). However, behavioural end
points of the projects reviewed were not men
tioned. In addition, as the author himself
3S8EB
w-
4
pointed out, a substantial number of the pro
ject reports reviewed lacked methodological
details; they were reported in conference
abstracts. It is therefore difficult to conclude
on the relative meaning of the term "success
ful'', particularly in relation to behavioural out
comes.
Small-group AIDS education is taking place
all over the world, advancing general knowl
edge of HIV in numerous communities. Smallgrbup AIDS prevention programmes can be
seen as having 3 main components:
content
context
tion from randomized controlled trials of the
ory-based skills-building programmes (see
chapter III for impact of theory based inter
ventions). Several independent reviews of the
literature as a whole found that small group
HIV risk-reduction interventions result in
meaningful changes in HIV risk behaviour
(Kalichman, 1998).
One Innovative apprQach targeting hard-tO’.
reach
In the
reach populations
populations In
the USA
USA with
with information
Informatioi
and counselling was a multiple.session inter-:
vention designed to be .delivered
delivered over the
telephone. One reason for this method was to
reach populations that ;do not want to meet a
health care provider fac
MaceJnanevalu.;
strategies (Kalichman, 1998).
earc^fpund S,gteephoqe-based
Content includes goals, objectives, and activ
ities. The main content areas in most smallgroup intervention activities include: basic
education about AIDS, sensitization to one's
personal risks for HIV, instruction in individual
actions that can reduce one's risk and explor
ing new ways to communication with sex part
ners. Entire interventions or research ques
tions are built on any one of these content
areas.
counselling ..including ,
t^^i:dntef|purse|f^
men ’ who' ■ complete
(Roftman. 1997) ,
.
Another study in' Uganda looking at gender
lours for women with ev.den
aUth°r‘
The second component in small group HIV
hiX
prevention is the context. The different
vide...» —'’"v^anctl^ed^
yide-ar.soc.
•rtunity^for
aspects of the intervention should be
designed to fit the cultural, gender and devel
opmental issues of participants. For example,
one investigator Telt concerns of stigma and
sexual identity were paramount to African
American gay men and dedicated an entire
peer group:
1996).
:
gBunpell,
session of this small-group intervention to
concentrate on those issues (Kalichman,'
1998).
erection tor.we
Especially in the USA, small-group AIDS pre
vention efforts have evolved since the begin
ning of the epidemic from providing basic
information in community groups and sensi
tizing people to personal risk sensitization.
Subsequently, interventions began instructing
people on condom use skills, eroticizing safer
The third component, strategy, is the process
itself, where emphasis is placed on how the
interventions are implemented between par
ticipants and group leader. Key elements to
consider include how to foster trust, build
group cohesiveness, encourage motivation
and mutual support among participants and
between participants and the facilitator
(Kalichman, 1998).
Although evaluations of small-group interven
tions have focused on content and facilitation
skills, all three components have been found
to be critical to the success of this approach.
The literature reports strong evidence for the
beneficial effects of small-group HIV preven-
';’3
sex, and building safer sex communication
skills. Through interventions encompassing
these elements, many people have reduced
1 high-risk sexual behaviour, but not everyone
is sensitive to small group behavioural inter
ventions. For example, small-group projects
targeting heterosexual men for HIV preven
tion have not shown significant intervention
effects. Longer-term behavioural changes
require ongoing support and modifications in
the larger social environment within which
these behaviours take place.
1 of'■'I
Ovrnniuriiiy Health Ccii
rrom:
Ricnara Stern <rastern@racsa.co cr>
To:
"Renate Koch" <rkoch@accsi.org.ve>; "Brad McIntyre" <bradmcin@telus.net>;
<sochara@vsnl.oom>: "Alexandre Grangeiro" <grangeiro@aids.gov.br>: "almiron, Maria"
<a!miron@paho.org>; "Annegret" <’uventud.sida@internet.net.do >; "Annette Ghee"
■-ghee^u.washington.edi;?-; "Barbara" <bdaz@s-3.corn>; "BID” ^crncGtmgiadb.crg^;
"ukiiLun@uaiiuuni.uiy’' *-ukiiiuun@uaiiuuni.uiy< "Cuiina Gaiunei" '•uuiinc:.yaiunei@ifns.yuv^,
dennisjones' <dmjones@bti.net>; DFiD <m-munroe@dfid.gov.uk >; DFID Caribbean <womamu!i@.dfid.aov.uk>: "Dominic" <Dominic.sam@undp.orq >: "eqaillard" <egaillard@msn.com>;
<ernmanuel@caricorn.org>; "f cox" <fascox@yahoo com>- "Francisco Paniagua*
<p2ni2gu2@0ps-0ms.0rg--; "guide bakker" <guido.b2kker@theglobalfund.org>; "janice Rieherds"
<Richard3j@moh.gov.jm>; "Jaya Chimnani’' <jchimnani@G-3.oom>; "johanna”
\iui jcsi ii it:.Ki iue&&@yiz.ue-'. ’ iuabiiiiu" '-iuabLiiiu@ubaiu.yuv-*, "Lebiie Rambammy"
<minisrerofneaitn@notman.com>; manuei Mancneno <mmancheno@integra.com.sv>; Maria
NoQuerol" <maria.ncauerol@,aeci.es>; "man/ Mulusa" <mmulusa®wor!dbank.org>; "nbersaud"
<npersaud@sdno org gy>; "Pamela Teichman" <pteichman@usaid.gGv>: "Patricio Marquez"
<pm2rquez@worldb2nk.org >; "RBM" <c2rterke@pah0.0rg>; “roy head" <roy.head@bbc.co.uk>;
"ruth gloria" <rgioria@soc;alsccurity.org.bz>; "Scott Evcrtz --Scott.Gvcrtz@hhs.org>; "simon
hanib" ''biiaiiib@uwiaiiiaiua.uuin-*, "iiiiy beeieib" '‘ibeiieib@aiubaiiianue.uiy-*. "wiiiiam bnijui"
Sent:
<smirnw@GaribanK.org>; yoianda simon’ <crn@carib-iinK.net>
Thursday. May 13. 2004 10:09 AM
ARV Access in J?.m?ic?: A dialogue with UNAIDS
(Tf yon wish to be removed from this list plesse send an e-mail to nLstem/Srarsa.dn.c.f)
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Bv Richard Stem with a Response from Rheeta Batia of UNAIDS
Peocle Livinc with HIV/AIDS in Jamaica still have no access to anti-retroviral medications, and 6.000 people need
treatment now The situation which was denounced by this author in an article published in January of 2003
(httn7/www aguahiiAHA orn/ingles/artinules/jamaicfibear.hes html> remains unr.hAng«d nearly a year and a half later
L
An average of 11 people a ween die of Aids in Jamaica, according io official figures but many reel tnat ihe aciuai
number could be much mgner.
Jamaica^ multi-miiiicn dciicr Ciebai Fund grant was approved in October of 2003, and could provide treatment for
1.000 people "this year.” Cut the Global rund contract remains unsigned 7 months after the project received
HioiininiQ.y c.ppmv<4, aitl.ough tl.c 0v.itrac: wiil perhaps be signed very’ soon uCCw.dir.y to the infOmiatiUMi provided
UCIUVV.
Even after Global Fund contracts have been signed in other countries; we have been seeing long delays in
prnrj irenient and distribution nf Anti-retroviral medications
Of course me fact mar 'i uuu peopie win receive rrearmenr "this year
Goes nor resoive me siruaricn for me omer
b.OOU people who need ARVs and can’t wait tor them. Perhaps 2b% or People who have full blown AIDS, die within a
year of this diagnosis.
As with merry Gicbcl Fund projects in the region the speed with which the Jamaican project is being processed does
not beern oven remote;y congruent with the Jife of death situation faced by the people who might benefit from it. (1 he
Duuiiiiiuaii Repuuiiub $40,000,000 Giuuai Fund piujeui was appiuved in Januaiy uf 200$, and liic uunuaui i» sim nut
signeai up to P.uuQ People wun AiD5 were supposed 10 nave received treatment as a result of this project. 1
With the goal of attempting to clarify the role of.UNAIDS in relation to the Jamaican context,1 spoke with Rheeta Batia
5/i3/04
pM«je 7 of A
.-jf th*? ' IMAIR^
Clianrcatarisaf fr»r shni it an hO’.ir OH
Avh
i ne notes trom the conversation are provided below, and Keeta's response follows the notes. Keeta nas given
permission to distnbute this dialogue by e-mail.
!tc vy hope that thio brief interchange eeuid bo aeon as eno example of civ;; society attempting to dialogue with the
Agenctes, as wxlJ
FAI ;o. RANCAr, and CARICOM and Ouhers,-abMut issues relating to the urgency of ARV
aCCeSS in li ic OaiiLucaii leyiun. it is diSU impuilai ii tnat iheSc Ayci tCicS be : ieiu aCCuuntabie fuf COi’i'iiTiitii iei its ii'iat
mey nave maue.
(mt OWN NOTES ARE FOLLOWED BY A RESPONSE WRiTTEN BY REETA BHATiA)
R. Stern's Notes: Conversation with Reels Bhatia: Europe/Americss Division, UNAIDS
Mav 4. 2004
Rita Bhatia was asked to cal! me by Luiz Loures, UNAIDS Director for the LAC- region.
The conversation focused mainly on Jamaica, but aiso somewhat on other Caribbean countries.
Reeta indicated to tne 'dial she is secunded" num liie Canadian yuvenimeiri to UNAiDS fui a yeai and wiii be
focusing ner auention on me Caribbean region.
1) I h?d eypresseri my rnnr?m in several !?tt?rs to Kathleen Cravero and Luiz Lo’ires of UNAIDS- regarding the
apparent lack of any meaningful input in Jamaica by UNAIDS, end the feet that 6000 people (Reete’e estimate) there
need treatment now.
2} We discussed the Globa! Fund situation there. Reeta informed me that a proposal has been approved which couid
provide treatment this year for up to 1000 people. But the contract has not been sioned yet. as Jamaica ’was required
by the GF to provide a special report related to its capacity for procurement and scale-up This process has taken
crtverel months, huf apparently the report ia now ehO’.lt to he. approved hy the Tarhnkal Review Panel and the contract
for the proposal could be signed with several weeks.
’ pointed out to Reeta that even after a proposal is signed it can take up to a year tor medications to actually be
procured and delivered, situations that are now occurring in both Nicaragua and Peru. I also reminded her that after
nearly a year end a half, the Global Fund contract for the Dominican Republic has still not been sioned.
iri genera;, i talked about my fears that the Global Fund (GF) process in Jamaica, Belize, Guatemala and othei *
cuunuies appiuved in the uiiiu ivunu cuuiu ueyin iu iniiiui tiie situation of so many ouuiiuies appiuveu in the secund
rouna, a year ana a nan ago. wrio sun nave not been aoie to proviae any ueatmeni access with Gr tunas, aue mostly
to tne absurd policies ot tne Global Fund board, wnicn are totally incongruent with providing funds rapidly in a
situation involving a life or death situation for so many people.
3) Recta informed me that UNAIDS has diverted some of its resources from other programs and will providcc some
economic support for JN;, the Jamaican Network of FLWA. I reminded Rita that JN: needs a lot of technical support
and training, i disc- suyyusteu ii iat it wuuid be very vaiuabiu to have a National Encounter of People Living with
Hiv/AiDS in Jamaica as mis nas been a useful iuoi in so many other countries in terms of empowerment ana
advocacy Reera seemec rc agree wirh inis iaea and saio she would bring it up to UN personnel and/or UNAIDS
theme group staff.
4) Rests informed me that Suzette Moses Burton of CRN+ had given a plenary presentation at the Al! UNAIDS Staff
meeting currently being held in Europe (the first ever oil UNAIDS staff meeting which is being attended by 200 UNAIDS
staff members from aiOunu the wcflu) in which she made extensive references to Olive Edwards' letter
juyaruifiy uiiiiuoi issues in Jamaica. Roe la. indicated trial inis presenlaliun had been very impactful.
Rirhsrd FAAcham Director nf th* Global Fund also attended tho first day of the UNAIDS all staff maating and staff
members expressed verious concerns to him releted to the Glob?.! Fund eno ARV sc?.le-up. He also held ?. private
mooting with Peter Piot.
5/ i 3/04
Pwge3 nfA
5) Reexa menxionea mat me Jamaican legislature was in process of probably passing a law max would favor me use of
generic medications i mentioned tnat as rar as i Know, tne current generation or AR vs are not
patented in Jamaica, but that CIPLA's distributor in Jamaica, LASCO drug, is selling its products at prices that are just
under those brices offered bv the originator drug companies and not at CIPLA's advertised prices, i also mentioned
that the eventual patent investigations required by the Global Fund for procurement take a very long time and should
be done as soon as •nri$sibie rather than waitino for the •orocurement staoe
to arrive thus avoiding
another •ootential
w
w
t
6) i discussed my impression mar it is ironic mar wniie Hain, one of me worief s least aeveicpeo countries, nas been
able to provide ARV access tor at least several thousand people in spite of its enormous social and economic
problems, that its neighbor Jamaica which is a medium level HD! country with a strong tourism Industry still does not
provide ARV’s for anyone.
7) I empl iooizeu my opiriion of the importance of the fact that when UNAIDS or other International Agencies and
funuiny suuices piuviue economic buppoit io Jis-r oi oihei FLVv'A groups liiai the messaye must be also be given very
cieariy mai mis suppon. is unconditional in me sense mar these groups Know mar tney are free io advocate for wnai
mey reel is nest tor mem ana in me rorm mat tney reel is nest, mey snouia not reel errata to step on people’s roes,
meaning decision makers and those who have power..
Wo discussed advocacy ;r. Canada, where Recta has worked cxtensivciy, but i pointed out my opinion, after many
y&SrS v» v»u‘ir\!f!y ti: Mvwr-.-u.-ii ty uvut is.: ivo,
that mi iv ainUui ii Ol iiiu-iii-y fS tot mi iiiUiivy >Oi p00i i.*vvpiv With AlDG ill
uevciupniy Cuunti ieS di iu li idi ouiiieumr Li icy idd: then If icy iTiu»t be CdutiOuS m ufucf to uut
vffci iu peOp’ie. (Of
course, inere ate aisu many exceptions) i feet iiiai UNAiDS. in ptuvidinq suppon to irie Regional PLVVA Networks as
wen as re NGO s: ana rcr conferences, ana scnciarsnips, nas nci always mace This paint ciear. in fact inis pemr must
be stressed and made “pro-actively?’
Those who receive support (ss well es di other PLWA) must feel free to prectioe "belligerent edvooacy" in their own
appropriate cultural context, ’without any fear that this support will be withdrawn (even it means criticizing UNAIDS
itself!)
If this message is not given loud and dear, many groups are hesitant about taking decisive steps. This has in my
opinion bosn a problem with the Regional Networks and some large international NGO's financed by UNAIDA, and is
certainly a problem with some other Agencies that provide financial support.
hi Keeta is aireacy aware or me i luts rounaanon initiative tor me Ganonean which will support grass roots
advocacy. A major regional activity related to this initiative is scheduled to take place in August and a steering
committee has already been selected.
0) We touched briefly on the situattori of other countries in the region such as Delize and Guyana where Heeia is also
liwoived.
1G) I mentioned my feeling that the discourse from the UNAIDS Secretariat in Geneva (People such as Reeta. herself
as waII as Peter Pint; Kathleen Crawero, Michele Sldlhe, etc) is often mneb different from the discourse of ♦he UNAIDS
. Field Staff. This is also true of other international Agencies, where there is committed leadership at the top, but
perhaps rhe staff or. the ground are, in some oases, more identified with iooai politicians and National AIDS Program
DfrOCtorG. vtc Ml IM GGii I. v'»ci~ittv mmmii them. \HvpCfwiiy ihv Mir^iuii iiivCtniy diUv i.vvk mimCv hi vuiiC»u W"il help iv
’couivc lino prubiviTi/.
! expressed my disappointment in the work of UNAIDS staff and especially in the response of the UNAIDS-theme
grni ips in the Caribbean in the sense that I have not seen them taking a pro-active approach toward the 3 x 6 initiative
1 ?Arfpiniy don't know ■?.!! ?bo’.?i what UNAIDS st?ff sre or ?re not doing in -?ny given
r^rnnniying »r rH= earv,= Jims
region or country. This is just my Impression.
The follcwina are Rests Saha's comments after seems mv notes as aboveRegarding the current Jamaican, aubmissicn to ths Global Fund, we understood from the GF
Scuitnaiiat ihcsi the swiiufi vii piuuuienieni vi AnvS is mt: uniy vne pviiumy niiciiix<diivri.
iriis
confirmation is dependent upon assessments from the Clinton Foundation and the World Bank on
Jamaica’s capacity tn deliver treatment programs and its subsequent concurrence by the Technical
5/i.Vu4
of4
Review Pons!, which :o currer.tiy mooting in Gonovo. .Afina! decision on this component is expected
iikciy inis week, in tiic uuntnii pivpv^csi. an amvuni vi $2.4 rniiiivn ivi iwv yeciia i» carmtlfkvu ivi
treatment, i he Jamaican government has estimated that around 6,Q0U individuals are m need
treatment and aim?; tn reach this target within five years with 1.000 persons on treatment by the end of
2004.
As we discussed, UNAIDS’ ongoing aim is to strengthen support to countries in the region to achieve
their H’V/AIDS targets and goals including those related to treatment. In this regard. I stated that one
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discussed, to further assist with scaling up HIV/AIDS efforts in the region, UNAIDS is strengthening its
presence in the Caribbean innhsding placing a full time UNAIDS Country Coordinator in Jamaica.
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Another point relates to UNAIDS commitment to partnerships with the national and regional
community bassd organizations including those representing people living with HIV/AIDS. Previously
Fui exainpie, UiiAiDS has suppuiieu AiDS NGOs like the Jamaica AiDS Suppoii and niemucis of JN+
to take part in skills building activities. While I did not make this point specifically, I would like
to mention that most recently. UNAIDS assisted CRN+ with the development of their Global Fund
proposal.
As stressed. UHAiDS- - at aii ieveis— is committed to mobilize,, empower, and strengthen the capacity
of NGOs and PLWHA networks as our ongoing key priority. As promised., we are following up to
provide RAF fiiridinff to JN+ ar»d t/i siippnrf
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Subject: Notes from the PCB Meeting
Date: Mon, 11 Jun 2001 15:33:34 +0100
From: ’’Ann Smith’’ <asnnth@cafod.org.uk>
To: <aramsay@cafod.org.uk>, <asmith@cafod.org.uk>,
’’Henry Northover” <hnorthov.CAFPOSTOFFICE.CAFDOMAIN@cafod.org.uk>,
<hwalsh@cafod.org.uk>,
"Julian Filochowski’’ <jfilocho.CAFPOSTOFFICE.CAFDOMAIN@cafod.org.uk>,
<imaher@cafod.org.uk>, <mdolan@cafod.org.uk>, <sochara@vsnl.com>
I attach, for your information, my notes and comments from the UNAIDS Programme
Coordinating Board Meeting in Geneva 29th May to 1st June, which I attended.
This is not by any means a complete account of the meeting but rather my jottings on
points that struck me, one way or another, If anyone wants a copy of any of the documents
listed at the end, please let me know.
,............... ...................................................................... .
Name: UNAIDS PCB MEETING NOTES May
2001.doc
Rj UNAIDS PCB MEETING NOTES May 2001.doc.
Type: Winword File (application/msword)
; Encoding: base64
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■
1 ofl
6/12/01 10:03 AN*’
SNIPPETS, OBSERVATIONS, COMMENTS AND CONCERNS ARISING FROM
THE UNAIDS PROGRAMME COORDINATING BOARD MEETING,
Geneva, 30th May to 1st June 2001
Agenda Item 1.4: Report of the Executive Director of UNAIDS, Peter Piot
Comments from PCB members in response to the report included:
• The need for UNAIDS to move from the theory of declarations to the sphere of
proven practice, and to have mechanisms in place for thorough follow-up.
• Human rights need to be set in the context of HIV and vice versa.
• UNAIDS needs to publicise the gravity of the epidemic in the different continents and
to widen the focus of attention away from Africa. AIDS is not an African problem
and portraying it as such is extremely dangerous with potentially hugely damaging
consequences, both for Africa and for the other continents also seriously impacted.
• The role of faith groups in challenging stigma and discrimination needs to be
increased.
• In connection with discussions of mother-to-child transmission it was proposed that
ARVs should be made available to women for their own sake and not just because of
the risk to the child. Strategies should widen their focus to become concerned with
prevention of infection in women and of transmission to their children.
• Countries with low HIV prevalence but high vulnerability need urgent action now.
• Both Dr Piot’s report and subsequent interventions made reference to link between
debt relief and HIV. UNAIDS are promoting a policy of investing debt relief monies
in addressing HIV, in countl ies most impacted by the virus. My Concerns: While the
report makes some mention of the need to al.so invest in wider infrasrtutural and
other development concerns in order to reduce the impact of HIV, any reference to
debt relief in discussions was very narrowly focussed on direct channelling of
recouped funds into HIV care and prevention programmes. The direction of the
argument was too much one-way re. HIV affecting poverty reduction, with the
converse being lost from sight. The World Bank delegate likewise indicated that they
would be monitoring countries' Poverty Reduction Strategy Papers for mention of
investment in HIVprogrammes. I think the whole debt reliefHIV debate is ahotting
up” and is one that CAFOD needs to engage with, making a more nuanced argument
around the reciprocal effects of poverty and HIV vulnerability; that debt relief
reduces HIV impacVvulnerability AND that decreasing HIV impact/vulnerability
work towards poverty reduction.
Among the recommendations and conclusions of the PCB on this agenda item were:
• A stress on shifting from small-scale and pilot interventions to programmes covering
a much larger number of people and wider areas
• Emphasis o the synergy between prevention and care as complementary strands of a
unified response, and on care and support as an indispensable component of effective
prevention.
In acknowledging the need for continuing comprehensive care and support and efforts
to fieht stigma, the PCB also recognised the role of faith-based groups in areas of care
and support. My concern here is that faith groups are relegated to and contairied
C:\WrNDOWS\TEMP\UNAIDS PCB MEETING NOTES May 2001.doc
1
I
within what is deemed a safe non-contentious area. There was no recognition of the
important role faith groups might play in reducing stigma, espousing advocacy and
human rights issues and certainly no consideration thatfaith groups (even in the most
enlightened scenarios) had any role at all in prevention strategies.
• Emphasis on prevention's a mainstay of the expanded response to the epidemic
(apparently there was much heated discussion in the drafting group on this point, with
some of those who are lobbying on access to ARVs objecting to this. As a concession
the wording was changed from the mainstay to a mainstay).
• A strong call for action to make alleviating the econojnic and social impact of thejHovgj
epidemic a priority over the next two years, especially re. the material and social
needs of children orphaned by HIV.
Agenda Item 1.6 Report by the NGO Representative
The official NGO delegation consisted of two representatives from Africa, two from
Asia, one from Latin America and two from North America. Four of these were also
people living with HIV and representing local/national networks of people living with the
virus. Among the points made in the NGO delegates’ report were:
• The need for funding to be delivered quickly and directly to local groups and
communities addressing HIV
• The need for specific and targeted support for each of continents/regions impacted by
HIV, recognising the different transmission dynamics applying in each region.
Both points were accepted in the recommendations of the PCB although the first was
significantly re-worded to read “effective channelling of funds to communities in need”.
Agenda Items 2 & 3 UN System Strategic Plan 2001-2005 and UNAIDS Unified
Budget and Workplan (UBW) 2002-03
Reports for both were presented by Peter Piot. The UN system strategic plan and
UNAIDS Workplan outline the proposals and mechanisms for ensuring HIV/AIDS
becomes an integrated and strategic priority for all of the UNAIDS Cosponsors and other
UN organisations. Points raised in discussions included:
• The strategic plan and UBW were good and to be commended as an effective way of
unifying the various UN actors.
• A number of commentators also noted that the strategic plan was complex, not at all
user-friendly, unwieldy and inaccessible for the majority of readers ancTproposed
beneficiaries as well as for those charged with implementing it.
• Concerns were raised around the possibilities of monitoring and evaluation of the
plan, and whether sufficient thought had been given to this aspect There were also
concerns that the plan was excessive to staffs capacity, and particularly to an under
resourced UNAIDS capacity to monitor.
• The plan had too many objectives and indicators and this too would make
implementation and monitoring difficult.
• The proposal to giye preference to investment in HIV prevention in low and medium
level infection countries was questioned and further reflection/debate calledlor.
C:\WINDOWS\TEMP\UNAIDS PCS MEETING NOTES May 2001.doc
2
The PCB response commended the initiative and endorsed the general contents and
direction of the plan. In its more specific recommendations it picked up the various
concerns made in the general debate.
I
Agenda Item 5.1 Special Session on the UN General Assembly on HIV/AIDS
(UNGASS)
Dr Piot updated members on this, in the light of the still-ongoing preparatoiy meetings
for UNGASS delegations, being held in New York. Both Dr Piot and the NGO
representatives who had come to Geneva from the New York meetings were somewhat
pessimistic about how the process was going. Dr Piot reported that most of the Draft
Declaration of Commitment (DOC) seemed to have gained acceptance among member
delegations. However there were still three significant hurdles, any of which might derail
the process:
1. An outright refusal by some delegations to admit any mention of men who
have sex with men, injecting drug users, or sex workers among groups
vulnerable to HIV, Cultural taboos as well as political and religious
prohibitive factors were all at play in this stance.
2. Non HIV-related political issues and jssues of human rights e.g. around
positions on the Palestinian occupied territories, or an embargo on Cuba, were
threatening to take over and halt all discussions of the HIV-related agenda.
3. Discussions/lobbying on intellectual property rights (in connection with
access to ARVs) were threatening to overwhelm the wider debate.
Dr Piot noted the varying responses to the UNGASS from governments. Responses from
Africa and Caribbean governments have been excellent with almost all of these
delegations being headed by the country’s president/head of government. Brazil has
shown most response from among Latin American countries, with their Prime Minister
intending to lead their delegation at the meetings. In Europe only Ireland and Portugal
have signalled their wish to have representation at the highest level. The Irish Prime
Minister/Taoiseach and Portuguese President have both declared their intentions to head
their delegations. As yet, no head of government from Asia has indicated their intention
to attend the UNGASS.
Dr Piot commented, in conclusion, that the DOC was in danger of being overtaken bjz
political agendas unrelated to HIV/AIDS.
Ill response to questions it emerged that there is no limit on the number of people who
can be part of a country’s delegation, although there are only 6 places allocated per
delegation in the plenary sessions. There will also be a number of overflow rooms with
video relays of proceedings. The UNGASS official programme will also include a series
of round tables, and restrictions on numbers do not apply to these. A number of unofficial
side events have also been planned to run in parallel to the official UN GASS.
The PCB encouraged UN member states to work closely with civil society in their own
countries in their preparations for UNGASS and to consider including NGOs in their
official delegations.
C:\WINDOWS\TEMP\UNA1DS PCS MEETING NOTES May 2001.doc
3
■J--
>
I*
DOCllME VrS HKjLD IN THE AIDS SECTION
L
Papers received in Connection with. Agenda items
1. Provisional Agenda for the Programme Coordinating Board meeting
2. Report of the Executive Director of UNAIDS on the last biennium
3. Speech of Dr Piot to the PCB
4. UN System Strategic Plan for HIV/AIDS 2001-2005
5. UNAIDS Unified Budget & Workplan 2002-2003
6. UNAIDS Financial and Budgetary Update 1st January 2000-31st March 2001
7. Report on the follow-up to the UNAIDS Financing Study
8. Progress Report from the Evaluation Supervisory Panel Chair
9. UNGASS: presentation to the PCB Meeting (copy of slides presented).
10. Statement on resources and a global fund for AIDS and health. Dr Piot
11. Report of the Ninth Meeting of the PCB, Geneva May 2000
^iT^eport of the Third Ad Hoc Thematic Meeting of the PCB. Rio de Janeiro,
December 2000
13. Summaryofthe Third Meeting of the Contact Group on Accelerating Access
to HIV/AIDS-related care, Geneva, May 2001
14. Draft version of decisions, recommendations and conclusions of the PCB to
the agenda items covered in the meeting.
A
f
Other Documents:
15. A Human Rights-based Approach to HIV/AIDS. Paper prepared by the
UNHCR for informal consultations for UNGASS, 21-25 May 2001
16. List of proposed side events planned to run parallel to the UNGASS meetings
^^in New York in June
G7?XlDS, Poverty Reduction and Debt Relief A Toolkit for mainstreaming
HIV/AIDS programmes into Development Instruments. UNAISD Best
Practice Collection, March 2001
(HpAIDS, Poverty and Debt Relief UNAIDS newsletters 1-3 (March-May 2001).
To subscribe send an e-mail to “poverty-debtrelief@unaids.org”
19. Critical issues Surrounding and International Fund for HIV/AIDS and Other
Infectious Diseases. Document circulated by HealthGAP
20. Copy of correspondence between Paul Davis, HealthGAP representative at
PCB, and Jeff O’Malley of HIV/AIDS Alliance
21. List of Participants
I
/
1
/
6
C:\WINDOWS\TEMP\UNAIDS PCB MEETING NOTES May 2001.doc
t
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■■...............
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1
I
Guide
to the strategic planning
process for a national
response to
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Resource mobilization
■'-s
Joint United Nations Programme on HIV/AIDS
B UNAIDS
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(A
UNICEF • UNDP • UNFPA • UNDCP
UNESCO • WHO • WORLD BANK
UNAIDS/00.21E (English original, August 2000)
© Joint United Nations Programme on H1V/AIDS
(UNAIDS) 2000.
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 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 document may not be sold or used in conjunction
with commercial purposes without prior written approval
from UNAIDS (contact: UNAIDS Information Centre).
The mention of specific companies or of certain
manufacturers’ products docs not imply that they are
endorsed or recommended by UNAIDS in preference to
others of a similar nature that are not mentioned.
The views expressed in documents by named authors are
solely the responsibility of those authors.
Errors and omissions excepted, the names of proprietary
products are distinguished by initial capital letters.
UNAIDS - 20 avenue Appia - I2II Geneva 27 - Switzerland
Telephone: (+41 22) 79I 46 5I - Fax: (r4l 22) 791 4I 87
E-mail: unaidsfa unaids.org - Internet: http://www.unaids.org
t
Guide
to the strategic planning
process for a national
response tf)
< •
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ihM Ki
Resource mobilization
SM: S
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Joint United Nations Programme on HIV/AIDS
OI UNAIDS
UNICEF • UNDP • UNFPA • UNDCP
>">9—UNESCO » WHO • WORLD BANK
Table of contents
Preamble
4
I.
4
Introduction
II. Defining resources,
u
5
Resources
Human resources...
Financial resources.
Goods and services
Resource partners
5
5
6
Government
NGOs
Donors/international development agencies
6
7
7
The UN system
Private sector
Communities
8
8
8
III. Resource mobilization through the strategic
planning process.....................7.
7...
III. 1
9
Involving key partners in the planning process
Ensuring government leadership
Community participation ................................................
Involving major international development agencies
III. 2 Maximizing available resources
.10
.10
.10
11
Is the current response relevant?
Are current responses effective? Are they cost-effective?
- Adequacy of resources
- Technical soundness and best practices
- Cost-effectiveness
..................................
Are there opportunities and/or imperatives for reallocation
and reprogramming of resources? Where are the priorities now?
Adapting and responding to change/monitoring and evaluation.
Setting priorities
III. 3 Mobilizing additional resources
11
11
11
12
12
.13
14
Identifying and mobilizing new partnerships
Developing technical resource networks
Raising funds from donors/IDAs
- Involving the development agencies in planning
- Packaging proposals
- Knowing your donors
- Sustaining interest and commitment of new resource partners
14
15
15
15
17
17
IV. Conclusion
18
V.
19
Further reading
Resource Mobilization
UNAIDS Strategic Planning Guide
Is
3
■■
module 4: Resource mobilization
Preamble
While the issue of resources in general, and the scope of resource mobilization in particular, is
addressed from time to time in the first three modules of the Strategic Planning Guide, a fourth mod
ule specifically on resource mobilization is needed to reinforce its various aspects as referred to in
modules I to 3, and especially to debate and clarify a number of widely held assumptions with
regard to resource mobilization.
■ Resources, and resource mobilization, are often seen as relating solely to funding; this
module defines and clarifies the broader scope of resources.
■ Resource mobilization in the context of HIV/AIDS planning is still too often seen as a
process or an activity that takes place exclusively after planning; this module highlights
that resource mobilization is an integral part of the process of strategic planning.
■ Mobilization of resources is also seen as synonymous with securing new or additional
resources; this module emphasizes that it is also about making better use of, or max
imizing, existing ones.
I.
Introduction
The subject of resources, and their availability or non-availability, is - or should be - a major con
sideration for planners in all areas. Indeed being strategic means, among other things, being realis
tic not only about the situation one has to address but also about the resources needed to reach one's
objectives.
‘Resources’ is therefore a key theme throughout the strategic planning process (SPP) for national
HIV/AIDS programmes. The situation analysis has to deal with the identification of the most impor
tant factors that may influence the HIV/AIDS epidemic. These include the status of human, institu
tional, financial resources that may determine individuals', sectors’ or general societal vulnerability
to HIV. These resources also determine the scope and effectiveness of national responses (see p. 11
of module 1).
Assessing the resources made available by the key players in the national response to HIV/AIDS is
an essential aspect of the response analysis, as is an appraisal of the judicious use that is being or
has been made of those resources (see p. 18 of module 2).
The formulation of a strategic plan implies that the availability of adequate resources is taken into
account for the implementation of the different strategies in all priority areas; it should also address
ways of making better use of existing resources (see pp. 15 and 18 of module 3).
Most importantly, the need to actively involve all key stakeholders in all three phases of the SPP is
underlined throughout as a key strategy for mobilizing resources (ref. p. 26 of module 3).
1
4
UNAIDS Strategic Planning Guide
Resource Mobilization
Using this module
The major focus of this module is on ‘mobilization of resources’ and it should primarily be read
or used in conjunction w ith each of the first three modules. Those who will use it are the situation
analysis and/or the response analysis team, and the team responsible for the formulation of the
strategic plan.
I lowever there will also from time to time be a need to secure resources after the formulation of the
strategic plan, for instance to support the expansion of emerging successful strategies, or to supple
ment shortfall in funding for a priority strategy or a catalytic project. This module will therefore also
deal with relevant approaches, techniques and methods for that purpose.
Following an overview and definition of resources and resource partners, the module:
i. highlights the ways in which resources are effectively mobilized through a strategic planning
process;
ii. describes specific approaches to mobilization of ‘additional’ resources in the course of the
implementation of the strategic plan.
II.
Defining resources
The term ‘resource’ is all too often understood to mean only ‘funds’, especially in the context of
resource mobilization. And yet, when for example programme or project failure is attributed to the
lack of resources this has often to do as much with human or other resources as with funds. It is
therefore useful at the outset to define what is understood by ‘resources’ and by ‘resource partners’.
I
Resources
“Resources” includes not only money, but also people, goods and services. All types of resource or
fonns of support can be grouped under one of the following categories:
Human resources
These are the people needed to design, implement and follow up activities and projects.
• They will need to cover a range of appropriate skills and know-how to carry out the
diverse specific tasks required.
• They may be paid or voluntary.
• They may be part-time or full-time, on secondment from Ministries and other
Government bodies, recruited by international agencies, or employed by national or
international NGOs, the private sector, etc.
Financial resources
These may come from a w ide variety of sources:
• Government budget (including World Bank credits)
• Grants from international development agencies (IDAs), AIDS Foundations etc.
• NGO budgets
• Private sector.
I
Resource Mobilization
UNAIDS Strategic Planning Guide
5
Goods and services
These include:
• Vehicles and computer equipment
• Office space
• Advertising time or space
• Design and print facilities
• Financial, technical or medical advice
• Training services
• Meeting places and event venues.
These in turn may be provided at reduced cost or be freely donated.
Finally, an important resource that is often overlooked and is best included here is the time that peo
ple may contribute voluntarily to various important aspects of IIIV/AIDS woik from high-level
political advocacy to community services.
Resource partners
One can broadly categorize all current and potential “resource partners” at different levels using the
following matrix:
Local/District Provincial/
Regional
National
International
Government
NGOs______________
Donors/international
development agencies
UN system
Private sector
Communities
Each group presents particular advantages and challenges which can be summarized as follows:
Government
It is critical that there be government ownership and leadership of the national response. A National
AIDS Programme with strong government management signifies:
• consistent programme direction and a coherent national response
• potentially substantial resources, including staff, offices, equipment and services
• coordination of external support
• access to the whole spectrum of activities, disciplines and interests in the public
sector.
6
UNAIDS Strategic Planning Guide
Resource Mobilization
i
But despite the wide recognition that a multisectoral approach is necessary to tackle HIV/AIDS
effectively, in many instances the only significant involvement from the public sector is from the
health sector. Further, Government is occasionally plagued by administrative regulations and pro
cedures that can hamper the flow of resources particularly financial, but also human resources for example from central to provincial or district levels. Government may also sometimes find it
sensitive or difficult to allocate resources to, or be directly associated with, certain HIV prevention
activities, such as those targeting behaviours like drug use or commercial sex work that may be
outside the law.
NGOs
There are now innumerable AIDS-specific NGOs, national and international, that intervene and pro
vide services across the whole range of prevention and care strategies and activities. They play a
vital role and make significant contributions to successful national responses. They present some
unique advantages not least:
• The relevance and responsiveness to community and grassroots needs
• The committed and motivated human resources of the smaller national NGOs
• The ability, unlike the government sector, to work with marginalized populations such
as drug users or sex workers.
NGOs are usually also more willing or can afford to take risks, such as allocating resources for
untested strategies, or starting up pilot projects in new geographical and thematic areas. As for inter
national NGOs, they also provide links to wide networks and are therefore sources of substantial
technical and financial support.
On the other hand, the proliferation of HIV/AIDS-specific NGOs has sometimes taken place at the
expense of quality and accountability, with ill-designed or inappropriate projects absorbing scarce
resources and failing to have any significant impact. Other areas of concern include:
• Mutual Government/NGO distrust
• Weak management structures
• Specific priorities of some NGOs may not always match those of national programmes.
Donors/international development agencies
In the early years of the HIV/AIDS epidemic, multi- and bilateral development agencies were the
major source of resources - especially financial - for national HIV/AIDS programmes. Although
the overall financial support to AIDS programmes has declined in recent years, development aid
from bilateral donors remains an important, if not the most important, source of financial and human
resources, goods and services for many resource-poor countries.
The relationship and dynamics between donors and national governments can in some cases be
influenced by the following factors:
• Where support from bilateral donors is channelled to or through NGOs this can aggra
vate the tensions that may exist between NGOs and Government.
• Particularly when national mechanisms for coordination are not strong, coordination
among donors may also be less than optimal.
• Some donors may only be prepared to support specific strategies and seek to influence
national programme priorities accordingly.
Resource Mobilization
UNAIDS Strategic Planning Guide
7
I
The UN system
Multilateral support has generally diminished and is now focused more on catalytic action, tech
nical assistance and advocacy, including efforts to leverage additional resources. Concurrently,
the establishment of UNAIDS is meant to maximize the resources and ensure greater coherence
of the efforts of different UN system agencies in support of country responses.
With the establishment of UNAIDS and the increasing effectiveness of UN Theme Groups on
F1IV/AIDS in countries, it is anticipated that there will be stronger and better coordination not
only of the UN system’s support but also that of overall external aid in general.
Through UNAIDS and its cosponsors a number of common goods besides a stronger and more
coherent UN system response are becoming increasingly available to all countries, including:
• improved access to and exchange of best practices
• improved access to technical resources (e.g. through technical resource networks)
• better access to goods and services, including condoms and drugs.
Private sector
With growing evidence of the negative impact of the 1IIV/AIDS epidemic on certain sectors and
on productivity, many more members of the private sector are now willing to support preven
tion programmes which they see as an investment. Of the many partnerships that IIIV/AIDS
concerns are generating, that between the private and public sectors in countries has unique
potential. At the same time it poses a few challenges.
The potential of the private sector resides not just in the financial resources that can be tapped
but also in the considerable human resources that it represents and the social leadership that it
can provide. Other strengths include:
• its involvement in AIDS prevention may take in both its own workforce and its clients
• specific skills that are very relevant in AIDS prevention, for example in communication
• business-like, professional approaches
• a culture of efficiency, cost-effectiveness and accountability.
On the other hand, the grasp of HIV/AIDS-relatcd issues by the different elements of the private
sector is variable and often incomplete. Given these differences and the diverse interests that are
represented, coordination and avoiding conflicting messages may be an issue.
Communities
Potentially the greatest resource capacity is to be found within the communities who are or can
be mobilized around the issue of HIV/A1DS.
The community or communities here are defined not just in terms of geographical proximity although this will often be the case but in the broad, inclusive sense, of groups of people who
may be bound by culture, religion, beliefs, practices and. above all, by a common concern with
and interest in 111V/AIDS prevention and care. These dilTcrcnt types can also be regrouped
under the following categories:
■ Communities of interest - groups of people with a common purpose, such as health
professionals working together on HIV.
}
8
UNAIDS Strategic Planning Guide
Resource Mobilization
■ Communities of circumstance - people with different backgrounds altogether but who
are brought together by a common event, for example people with haemophilia who
have been infected through contaminated blood products.
■ Structured communities - people with a common identity or history, and sharing com
mon values or attitudes that unite them and identify them as a distinctive community.
They may be church groups or youth or women’s organizations, trade unions, professional associ
ations and sociocultural clubs and, not least, associations of people living with H1V/A1DS. Each of
these brings different resources, capacities and preparedness to respond to HIV/A1DS.
Notwithstanding these differences, the capacity of such communities, once mobilized around the
issue of I1IV/AIDS, cannot be over-emphasized.
The strengths of a mobilized community are well summarized in the UNAIDS technical update (see
Community Mobilization and AIDS, Technical Update - April 1997). These include:
• awareness of their individual and collective vulnerability to HIV
• motivation to address their vulnerability
• knowledge of the options that they can take to reduce such vulnerability
• the time, skills, and other resources that they are prepared to invest.
III. Resource mobilization through
the strategic planning process
The key characteristics and strengths of strategic approaches to HIV/AIDS planning are summa
rized in the Introduction to the UNAIDS Guides (see pp. 4-5). All of these, directly or indirectly,
have resource-related aspects and dimensions. Together, they highlight the fact that resource mobi
lization is an integral part of strategic planning processes.
The following section analyses further some of the ways in which mobilization of resources de facto
takes place through the strategic planning process.
III. 1
Involving key partners in the planning process
The first three modules of the Guide to the SEP (sec p. 7 of module 1, p. 25 of module 2, and p. 8
of module 3) all stress that it is critical to ensure the participation of key stakeholders and resource
partners at all stages of the SPP. It is imperative that a diversity of skills and expertise be brought
together for a thorough situation and response analysis while, for the strategic plan formulation, it
is important that as many of the actual and potential partners in the response be involved. These
include different Government sectors, community organizations and NGOs, including associations
of PWHA, academia and research institutions, the private sector, and international donors.
Such breadth of participation in the situation and response analysis enriches the reflection.
Importantly, it also ensures ‘ownership’ of the process and of the output. By the same token,
involvement of the key stakeholders in the strategic plan formulation is a major first step towards
mobilizing the financial and human resources of the different partners towards implementation.
Resource Mobilization
UNAIDS Strategic Planning Guide
9
Ensuring government leadership
It is increasingly evident that HIV/AIDS will impact on many countries’ long-term plans and on
their agenda for social and economic development in particular. It is therefore all the more critical
that Government, which is responsible for establishing such agendas, assume the leadership of the
entire planning process. And it is not just about technical leadership. High-level political leadership
is crucial. The viability and sustainability of programmes will depend on the extent to which the
response to Hl V is built into the national development framework - something which only govern
ments can effect.
Community participation
While materials and funds arc undoubtedly required to implement activities, it is even more critical
to have motivated and skilled human resources. The participation of the concerned communities at
relevant stages of the planning process is as important as government leadership in the planning pro
cess. They represent the single most impoilant resource for a country's response. Individually and
collectively - be they members of affected populations, associations of PLWA, HIV/AIDS service
providers, national or international NGOs, small local organizations, research institutions, epidemi
ologists or behavioural scientists - they make valuable contributions to the national response, the
more so when they are involved in the planning process.
Community participation - challenging though it may be - is the one way to ensure the relevance
and realism of strategies and to mobilize the inherent resources of communities.
Involving major international development agencies
Most national programmes to some extent rely upon external support. It is therefore desirable to
encourage major donors to participate in a national strategic planning process, especially at the stage
of formulation of a strategic plan. As stated in module 3. ‘involving all key stakeholders is an early
but essential step towards mobilizing resources, human as well as financial' (see p. 8). Such involve
ment is also to be encouraged since many donors may have specific concerns or priorities that do
not always match national priorities.
Their active participation in the national strategic planning process will ensure coherence and max
imize the benefits to the country of resource allocation to priority areas. Besides the various ‘com
munities’ mentioned above, the ‘key stakeholders' at this stage will include not only international
donors but also, hopefully, some new or potential resource partners as identified through the situa
tion and response analysis.
As repeatedly stressed in the various modules of the UNAIDS
Strategic Planning Guide, people living with HIV/AIDS or directly
affected by it are very valuable partners for any HIV/AIDS action.
UNAIDS promotes and supports the greater involvement ofpeople
living with HIV/AIDS in the response to the epidemic.
10
UNAIDS Strategic Planning Guide
Resource Mobilization
III. 2 Maximizing available resources
A widely held assumption concerning resource mobilization is that it is solely about securing addi
tional or new resources. However, within the context of strategic approaches to planning, it is par
ticularly important to emphasize that mobilizing resources is as much about making judicious or
better use of available resources as it is about mobilizing additional ones.
The following are key questions in this regard:
Is the current response still relevant?
Are current responses effective and, in particular, are they cost-effective?
> Are there opportunities and/or imperatives for reallocation and reprogramming of
resources? Where are the priorities now?
Is the current response still relevant?
The first key question is about the relevance of the current response. One of the reasons why it is crit
ical to adopt strategic approaches to HIV/AIDS planning is that we are dealing with situations that
are not static. The situations change - sometimes rapidly - over time and place, which means that
strategies and activities that arc perfectly relevant now may be less so, or even not at all, in the future.
I lence the importance of a situation analysis and then a response analysis which inform the strategic
planning team about the relevance of specific strategies and activities at a particular moment in time
(sec pp. 16-17 of module 2). In all cases, but especially in situations where human and financial
resources are scarce and limited, it is a waste if these continue to be channelled to areas where they
are no longer relevant or w hich are of lesser importance than others. Reprogramming these same
resources for areas that are now more relevant is as effective a way of mobilizing resources as any.
Are current responses effective? And are they cost-effective?
The second set of questions addresses the issue of whether current strategies and activities, espe
cially in those areas that would have been identified as priority areas through the situation analysis
(see pp. 17-18 of module 2), arc effective and in particular whether they are cost-effective.
Looking at, and comparing, the effectiveness of specific AIDS prevention and/or impact mitigation
interventions or strategies is not straightforward. Issues such as the diversity of epidemiological and
social contexts within which interventions take place, the choice and appropriateness of the outcome
measures that could be used as proxy indicators of effectiveness, or the complex interaction between
the different programmes and strategies that are ongoing at the same time, all complicate attempts
at the estimation of effectiveness.
Nonetheless, it is possible and desirable to look critically at some factors that may account for
success or failure. These include, among others:
■ Adequacy of resources
■ Technical soundness
■ Cost-effectiveness
Adequacy of resources
Assessing the adequacy of inputs - technical, financial, but also goods and services and, not
least, human resources - into specific strategies is part and parcel of a critical analysis of the rea-
Resource Mobilization
UNAIDS Strategic Planning Guide
11
sons for their success or failure. It also provides the information required for eventual cost-effec
tiveness analysis and assists planners and other stakeholders in setting priorities for mobilizing
resources for potentially effective strategies that may otherwise get discarded.
The importance of adequate human resources for the success and effectiveness of an activity
cannot be stressed enough. While most people will find it easy to attribute failure to lack of
material resources, goods or funding, there is often a reluctance to acknowledge that it can be
due to lack of specific expertise, inappropriate skills, or even motivation and commitment.
Technical soundness and best practices
As module 2 points out (see p. 18), much has been learnt in the last decade about what can work
or does not work in III V/AIDS prevention and care. Nonetheless there are many instances where
programmes are still learning about what might work best in their particular contexts. Many a
response analysis will point to the failure of activities due to lack of technical soundness result
ing in significant resources being absorbed by ineffective or inefficient activities. Such situa
tions underscore the importance and significance of a strategy of documenting and sharing ‘best
practices' and lessons learnt as a way of accelerating the ‘learning curve' of programmes and
minimizing the needless waste of time and resources on less-than-cffective interventions.
At all stages of a strategic planning process, but especially the formulation of strategies in pri
ority areas (see pp. I4-15 of module 3). the teams will be able to pinpoint opportunities for
national programmes to take advantage of lessons learnt and international best practices.
UNAIDS Best Practice Collection incorporates technical updates, points
of view and case studies, as well as key materials, on a wide range of
HIV/AIDS topics and issues. In addition to documentation and dissem
ination of best practice material, UNAIDS is promoting and supporting
in countries and between countries 'best practice' processes of learning
and reflecting about what works and does not work.
Cost-effectiveness
Cost-cffectivcncss is a measure of the comparative efficiency of discrete strategics and methods
for achieving the same objective (in this case HIV/AIDS prevention and care). As competing
programme needs grow or as resources become scarce, cost-effectiveness is an issue that
assumes even greater significance and importance. It is the responsibility of strategic planners
to advise decision-makers on making best use of scarce resources. In this regard, cost-effec
tiveness analysis is the tool of choice that enables programme managers and planners to make
informed choices about resource allocation. It identifies the relative efficiency of alternative
activities by comparing costs and results or outputs.
Focusing on the cost-effectiveness or efficiency of the response involves continuously asking
questions such as:
■ what are the costs involved in a specific activity or group of activities in the pro
gramme?
■ what are the returns on that activity, i.e. what are the benefits we get out of it?
■ what is the opportunity cost of such an activity? In other words, are we making optimal
use of our resources or will we achieve more by spending resources on other activities?
12
UNAIDS Strategic Planning Guide
Resource Mobilization
Are there opportunities and/or imperatives for reallocation and
reprogramming of resources? Where are the priorities now?
The third set of questions merely underlines the importance of strategic approaches in a context
as dynamic as the one of HIV/AIDS. Being strategic means, among others, being relevant to the
current situation and realistic about the resources required to implement planned strategies (see
Introduction to the SPP Guides, pp. 4-5). Put another way, being strategic is about being respon
sive to change and about being able to set priorities.
Adapting and responding to change - monitoring and evaluation
I he module so far has drawn atto
-o the critical importance of remaining relevant within
the changing contexts of HIV/AID
lemics. An iterative process of reflection and analysis
is important to allow the various partneis in a national response to remain alert to new situations
as they evolve, alert to opportunities so as to maximize the benefits of timely reprogramming
and resource allocation. Alternatively, it can also be seen as being alert to the obstacles that have
to be overcome, and minimizing the losses that may accrue through, for example, the continued
channelling of resources to areas that may be less critical now than others or may have ceased
to be priorities altogether.
Being strategic is being able to deal with change. This means flexibility on the part of manage
ment with, for example, a management structure that combines decentralized decision-making
with effective delegation of authority. Above all though, there needs to be a good monitoring
and evaluation system. This will serve to provide programme managers and implementers with
timely information not just on the status of implementation of programme activities but also,
importantly, on the key issues of their effectiveness, efficiency and continued relevance. What
is needed for such a system to operate well is a plan that sets out at a minimum:
■ Clear objectives, outputs and outcomes
■ Realistic targets
■ Clear and meaningful indicators.
Setting priorities
Setting priorities is a key and essential feature of strategic planning and, by the same token, one
of the many facets of resource allocation and mobilization. At the best of times there are always
choices to be made about what must be done and what can realistically be done. This is even
more true in resource-constrained settings. The whole strategic planning process is geared to
guiding decision-makers in making the choices that will result in the best possible use of valu
able human and financial resources.
Too often in the past, planning for HIV/AIDS has resulted in unrealistic plans that have sought
to cover all possibilities, plans that did not give due consideration to the relative importance and
relevance of specific strategies on the one hand, and to their feasibility, relative effectiveness
and affordability on the other.
All the preceding questions - about relevance and cost-effectiveness, about adequacy of
resources, about the major determinants of the epidemic and hence the priorities for action,
about what is working and is not working, and why - ultimately serve to inform planners and
donors about how and where to allocate resources in a way that maximizes the returns on the
investment.
Resource Mobilization
UNAIDS Strategic Planning Guide
13
III.3 Mobilizing additional resources
The module has stressed the several ways in which mobilization of resources is an integral part
- indeed a major outcome - of strategic approaches to planning responses to HIV/AIDS.
Specifically it has outlined the extent to which ‘mobilization' of resources is effectively taking
place through:
• involving all major stakeholders in the strategic planning process;
• identifying the major determinants of the epidemic at a specific time and place;
• setting priorities accordingly;
• ensuring that scarce resources are channelled to the highest priorities and to the most
cost-effective strategies and approaches for a determined objective.
The module has also emphasized the importance and relevance of applying and adapting inter
national ‘best practices' and the many ‘lessons learnt' about HIV/AIDS prevention and care in
order to gain valuable time and minimize the losses that would otherwise result from commit
ting resources to less effective or less appropriate strategies.
Notwithstanding these aspects of resource mobilization inherent in strategic planning, it is evi
dent that the dynamics of HIV/AIDS situations and responses are such that there will from time
to time be a need for additional resources to address changing situations, to support emerging
strategies and allow an expansion of the response.
This section deals with different strategies and methods for securing ‘additional' resources and
underlines once more that resources include not just funds but also goods and services and
human resources. The following are addressed:
a) Identifying and mobilizing new partnerships
b) Developing technical resource networks
c) Fund-raising
a) Identifying and mobilizing new partnerships
Strategic planning is about looking into obstacles to, and opportunities for (see pp. Il-l2 of
module I) a stronger and more effective expanded response. In the course of the situation anal
ysis the team will be considering the major determinants and consequences of HIV/AIDS and,
hence, the priority areas for action as well as the changes that may be required for moving from
the present situation to the desired one. Subsequently it will look both at what stands in the way
of changes needed in priority areas and at the factors that can promote such changes.
The team can thus contribute a great deal to mobilizing additional resources not only for the
immediate short-term needs but also for those opportunities that may arise in the medium to
longer term:
• by identifying opportunities for involving new actors and new resource partnerships to
bring these changes about:
• by exploring the different specific reasons which may appeal to these potential new
partners to get involved or to commit resources for current strategies and HIV/AIDS
programmes;
• by paving the way for mobilizing resources for future interventions and emerging strategies.
Understandably, the focus in terms of mobilization of additional resources will often be on inter
national development agencies. But it is also worth looking beyond the obvious traditional
14
UNAIDS Strategic Planning Guide
Resource Mobilization
I
donor governments and agencies. For example, there are now a number of Foundations
established by private companies, the entertainment industry or churches, which have
resources that can be tapped for specific HIV/AIDS or AIDS-related projects.
While external donors will likely represent a major component, there are equally important
‘national’ resource partners who could be a significant source of technical and financial
resources. The box on page 16 highlights examples of potential new partnerships that may
be brought to light in the process of strategic planning, particularly during the course of a
situation assessment and analysis.
Developing technical resource networks
As national responses evolve and new strategies emerge, what is increasingly required by
countries is technical know-how or expertise. The demand for such expertise in a wide
range of programme areas or on specific prevention and care issues is growing as more and
more countries seek to pre-empt the epidemic’s threat and expand their response to
HIV/AIDS. As has already been pointed out (see Technical soundness and best practices,
p. 12) the sharing of lessons learnt and experience on best practices can assist countries in
shortening the learning curve, thus gaining time and, in the process, saving much-needed
resources.
In this regard, identifying and mobilizing new partnerships also encompasses the idea or
strategy of development of networks in general and, specifically, of technical resource net
works, as a way of broadening a country’s or region’s resource base and making specific
technical expertise more readily accessible to countries.
(UNAIDS and its cosponsors are promoting and supporting the development and strength
ening of technical resource networks in a number of key areas at national as well as
regional levels.)
Raising funds from donors/IDAs
Involving tUe development agencies in planning
The Strategic Planning Guides stress the benefits of securing the participation in the plan
ning process of all key stakeholders, including major donors. As with all potential resource
partners their participation should ensure ‘ownership’ of the resulting strategic plan and
plan of action and a greater willingness to contribute resources - and particularly funding
- for the implementation of activities. Furthermore, it will also make the same donors
more receptive to requests for future additional funding, should such funding be required
to expand the response or seize opportunities to initiate new projects. Increasingly, too, as
national responses have become more multisectoral and multidimensional, donors are
seeking some reassurance that new projects or initiatives are more or less guided by a
national strategic framework. This is also where consistent high-level advocacy and
demonstration of commitment (see also p. 6 - government leadership) can often help to
sway the donors.
Resource Mobilization
UNAIDS Strategic Planning Guide
15
General/mainstreani development nongovernmental organizations and agencies
NGOs or bilateral and multilateral agencies responsible for general development projects may not always be aware of the extent
to which the epidemic could impact on the outcome of a particular project, on the intended beneficiaries, or even on the pro
ject’s workforce. The situation analysis may serve to identify mainstream NGOs or agencies that could be potentially involved,
try to answer questions concerning for example a project's ‘vulnerability' to HIV (eg. because of extensive use of migrant labour
force), and reinforce the rationale and benefits of integrating H1V/AIDS prevention into the project’s activities, for example by
including H1V/AIDS awareness programmes in the workforce training package.
The private sector
The impact of the HIV/A1DS epidemic on the private business sector has been growing steadily over the last years, and has
become quite visible in some places. Still, many business leaders need to be persuaded that AIDS prevention programmes for
their own employees are in their own rational self-interest. In economic terms, such prevention programmes can be marketed as
“minimizing costs” or “profit-loss prevention” and protection of valuable fixed investment in “human capital”. The advantage
of developing new partnerships with private businesses is that they have substantial resources available. At the same time, their
workplaces provide excellent opportunities to reach the labour force in large numbers and with high impact.
The situation analysis should briefly describe and prioritize the most relevant sectors of business in terms of HIV prevention in
a way that will allow the response analysis team to better focus their investigations into ongoing responses, and the strategic
plan formulation team to identify and mobilize or generate partnerships for an expanded response.
The following information may be of interest in that perspective:
•
total number of staff
•
annual financial turnover
•
main sources of income and the particular risk situations related to specific businesses, such as the extensive
reliance on migrant labour force, interests in entertainment or tourist industry, etc.
•
segmentation of a company’s customer base: arc vulnerable populations (youth, for example) major parts of that
base?
The military
The armed forces represent a discrete and important group, both in terms of risk of HIV infection1 and of potential resources to
change that situation.
Briefly highlighting their vulnerability emphasizes the benefits that may be gained from making the best use of their resources:
•
military recruits are often posted far away from their communities and families for relatively long periods
•
they are in the age group most sexually active and most inclined to risk taking
•
risk taking tends to be part of the military ethos
•
they often have more money than local populations
On the other hand, the army disposes of “resources” that may be harnessed for prevention efforts:
•
financial (although often not available for social services)
•
human: educated and skilled staff
•
a disciplined and highly organized environment
•
a high concentration of easily reachable high-risk behaviour individuals.
This combination of high susceptibility and non-negligible resources means that the armed forces represent a unique opportu
nity for effective preventive education.
Gathering information on uniformed forces is a sensitive issue in many countries, and the situation analysis team may have dif
ficulties in doing so. The same objective may however be reached in the long run by actively involving a high-ranking officer
from the army's social services in the situation analysis team, so that this person himself can organize an appropriate response
“in house”.
Academic and research institutions
These represent yet another difTerent potential resource in that they house a wealth of scientific data, studies and of course peo
ple whose expertise may not have been tapped and who may be helpful in subsequent information gathering and follow-up for
comparison with benchmark data.
Once informed and solicited, they represent a major resource among others for epidemiological and behavioural data collection
and analysis, and for planning, monitoring and programme evaluation, not to mention the capacity for clinical or operational
research or socioeconomic impact studies.
1
Comparative studies in several industrialized and developing countries showed that military personnel have a much higher risk of HIV infection than groups of
equivalent age and sex in the civilian population.
16
UNAIDS Strategic Planning Guide
Resource Mobilization
Packaging proposals
In any event, hen it comes to raising funds from prospective donors for programmes or new
projects there are a few ’musts’ that can help to swing the balance. These include:
• having a strong rationale for a project that drives home its relevance to the situa
tion or to national priorities; in the case of a programme, having a coherent set of
priority strategies and activities and an equally sound goal and overall strategy
• having clear and realistic objectives
• spelling out the expected outcome and concrete outputs
• building in a strong monitoring and evaluation component
• having a detailed and realistic budget, including counterpart resources
• paying due attention to ensuring accountability
• addressing the issue of sustainability.
These all add tip to the submission of a marketable product, one that can serve to convince
potential funders that they are dealing with project management that is focused, transparent,
accountable, and backing activities that are seen to contribute to a meaningful response. At
the end of the day all donors like to know what the costs are (what are we paying for?) and
what the outcome is likely to be (what are we getting for our money?).
Knowing your donors
As critical as the quality and content of the project submission is some knowledge of the spe
cific donor whose support is being sought. In this respect the old saying that you must ‘raise
friends before raising funds’ assumes special significance. International development agen
cies will always be more likely to entrust resources to known partners and friends with
proven track records of delivering what they set out to do and - this may be more important
for some donors than others - what donors require in terms, for example, of reporting and
evaluation
Indeed, donors are not a uniform group and it is crucial to understand and take into consid
eration the different and specific factors that motivate donors and dictate their decision to
allocate resources or not.
These are some of the questions and issues that may usefully be addressed:
• What are the favourite areas or strategies, if any, of specific agencies?
• Do they have known sensitivities to particular issues or partnerships? For example,
are they likely to respond more or less favourably if there is involvement of NGOs or
of a UN partner, or if the project takes into account gender issues?
• What mechanisms do they have for allocation of budgets? Who within their admin
istrative structure is likely to provide the most attentive ear?
• What criteria do they have for the selection of projects to be funded?
• Is there an especially 'good* time to submit a proposal? Perhaps towards the end of
the agency’s fiscal year?
Resource Mobilization
UNAIDS Strategic Planning Guide
17
Sustaining interest and commitment of new resource partners
Finally, the. focus may too often be on short-term fund-raising and on one-off partnerships with
one-time resource benefits. But sustaining the interest and long-tenn commitment of one’s
resource partners is an investment strategy of great relevance to HIV/AIDS programmes that are
clearly long-term and dynamic. This is particularly true when dealing with international donor
agencies and with the private or business sector and suitable attention should be paid to ensur
ing the durability of partnerships.
The following are a few useful hints:
• involve them in the planning and development of programmes or projects
• tailor the design of projects to the donors’ and sector’s interests and mandate (this is
especially applicable to the private sector)
• review progress regularly together with resource partners
• recognize and mark a partnership’s achievements from time to time.
Conclusion
This fourth module draws attention to the broad scope of resources and ol resource mobilization. It
highlights in particular the different ways in which mobilization of resources effectively takes place
through the strategic planning process as outlined in the First three modules.
With HIV/AIDS continuing to present an ever-growing challenge both in terms of prevention and
of impact mitigation measures, resources will continue to be at a premium. In the resource-con
strained settings within which national programmes are operating, additional or new resources will
always be required and beneficial. However, it is also important to underscore the significance of
making judicial use of existing resources. This is what this module does through emphasizing the
resource mobilization aspects of the strategic planning process.
18
UNAIDS Strategic Planning Guide
Resource Mobilization
Further reading
I
□
UNAIDS. Guides to the strategic planning process for a national response to HIV/AIDS,
UNAIDS Best Practice Collection. Geneva, 1998.
□
World Bank. Confronting AIDS
1997.
□
UNAIDS. Community Mobilization and AIDS. Technical Update, UNAIDS Best Practice
Collection. Geneva, 1997.
□
UNAIDS. Cost-Effectiveness Analysis and HIV/AIDS. Technical Update, UNAIDS Best
Practice Collection. Geneva, 1998.
□
UNAIDS. CD-Rom - Economics in IIIV/AIDS planning. Getting priorities right. UNAIDS,
Geneva, 2000.
□
Guinness L, Watts C, Mills A. Technical Brief on Cost-EfTectiveness of HIV/AIDS Prevention
Strategies. Background Paper for UNAIDS, 1997.
□
Bamett T, Blas E, Whiteside T. AIDS Briefs. Integrating HIV/AIDS into Sectoral Planning,
document Wl lO/SARA/Hl IRAA/USAID Africa, 1995.
Resource Mobilization
Public Priorities in a Global Epidemic. New York, OUP,
UNAIDS Strategic Planning Guide
19
I
f
:h
Joint United Nations Programme on HIV/AIDS
^0 B UNAIDS
UNICEF • UNDP • UNFPA • UNDCP
UNESCO • WHO • WORLD BANK
The Joint United Nations Programme on HIV/AIDS (UNAIDS) is the leading
advocate for global action on HIV/AIDS. It brings together seven UN agencies in a
common effort to fight the epidemic: the United Nations Children’s Fund (UNICEF),
the United Nations Development Programme (UNDP), the United Nations Population
Fund (UNFPA), the United Nations International Drug Control Programme
(UNDCP), the United Nations Educational, Scientific and Cultural Organization
(UNESCO), the World Health Organization (WHO) and the World Bank.
UNAIDS both mobilizes the responses to the epidemic of its seven cosponsoring
organizations and supplements these efforts with special initiatives. Its purpose is to
lead and assist an expansion of the international response to HIV on all fronts: medi
cal, public health, social, economic, cultural, political and human rights. UNAIDS
works with a broad range of partners - governmental and NGO, business, scientific
and lay - to share knowledge, skills and best practice across boundaries.
!
Guide to the strategic planning process for a national response to HIVZAIDS
77z/5 guide, comprising four modules plus cm introduction, is intended for use by country programmes,
either at a national or decentralized level, other agencies and organizations such as international non
governmental organizations and donor agencies.
Introduction
Strategic planning, as developed in the present guide, defines not only the strategic framework of the
national response, i.e. its fundamental principles, broad strategies, and institutional framework, but also the
intermediate steps that need to be taken in order to change the current situation into one that
represents the objectives to be reached.
Module 1. Situation analysis
A situation analysis looks specifically at situations that may be relevant to HIV, the factors that favour
or impede its spread, and the factors that favour or impede achieving the best possible quality of life for
those living with HIV and for their families.
Module 2. Response analysis
In analysing the response, countries look at all the relevant initiatives in a priority area, not just those that
are part of the ofTicial national programme. Community-organized activities and those organized by pri
vate companies, academic organizations, and nongovernmental organizations all contribute to the national
response.
Module 3. Strategic plan formulation
The formulation of a strategic planning process deals with the question of what should he done about the
HIV situation in the country in the future. The plan includes not only a strategic framework but the more
detailed strategies necessary to change the current situation and the successive intermediate steps needed
to reach the stated objectives.
Module 4. Resource mobilization
The resource mobilization module is a useful guide to find out how to acquire the resources needed to carry
out work on HIV/AIDS. It focuses on the necessary steps to assess what resources are currently available
(and how those resources are being used) and how additional resources (and resource partners) can be iden
tified and accessed.
.
w
Ethical
considerations
in HIV preventive
vaccine research
Joint United Nations Programme on HIV/AIDS
BUNAIDS
UNICEF • UNDP • UNFPA • UNDCP
UNESCO • WHO • WORLD BANK
Joint United Nations Programme on HIV/AIDS (UNAIDS)
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
V
J
...
Jomt United Notions Prooromme on HIV/AIDS
i
i
i
I
h UNAIDS
UNICEF • UNDP • UNFPA • UNDCP
UNESCO « WHO * WORLD BANK
UNAIDS/00.07E (English original) May 2000
©Joint United Nations Programme on HIV/AIDS (UNAIDS) 2000. 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 that the source is acknowledged. The
document may not be sold or used in conjunction with commercial purposes without prior
approval from UNAIDS (contact: UNAIDS Information Centre).
UNAIDS. 20 avenue Appia. 1211 Geneva 27. Switzerland
Tel. (+4122) 79146 51 - Fax (+41 22) 79141 87
E-mail: unaids@unaids.org-Internet: http://www.unaids.org
The Joint United Nations Programme on HIV/AIDS (UNAIDS) is the leading advocate for
global action on HIV/AIDS. It brings together seven UN agencies in a common effort to
fight the epidemic: the United Nations Children's Fund (UNICEF), the United Nations
Development Programme (UNDP), the United Nations Population Fund (UNFPA), the Uni
ted Nations International Drug Control Programme (UNDCP), the United Nations
Educational, Scientific and Cultural Organization (UNESCO), the World Health Organization
(WHO) and the World Bank.
UNAIDS both mobilizes the responses to the epidemic of its seven cosponsoring organizations
and supplements these efforts with special initiatives. Its purpose is to lead and assist an
expansion of the international response to HIV on all fronts: medical, public health, social,
economic, cultural, political and human rights. UNAIDS works with a broad range of partners
- governmental and NGO, business, scientific and lay - to share knowledge, skills and best
practice across boundaries.
Produced with environment friendly materials
UNAIDS guidance document
In some jurisdictions, individuals who are below the age
of consent are authorized to receive, without the consent
or awareness of their parents or guardians, such medical
services as abortion, contraception, treatment for drug or
alcohol abuse, treatment of sexually transmitted diseases,
etc. In some of these jurisdictions, such minors are also
authorized to consent to serve as participants in research
in the same categories without the agreement or the
awareness of their parents or guardians provided the
research presents no more than "minimal risk". How
ever, such authorization does not justify the enrolment of
minors as participants in vaccine trials without the
consent of their parents or guardians.
In some jurisdictions, some individuals who are below the
general age of consent are regarded as "emancipated" or
"mature" minors and are authorized to consent without
the agreement or even the awareness of their parents
or guardians. These may include those who are married,
parents, pregnant or living independently. When
authorized by national legislation, minors in these
categories may consent to participation in vaccine trials
without the permission of their parents or guardians.
Ethical considerations
in HIV preventive
vaccine research
UNAIDS guidance document
May 2000
UNAIDS
48
Ethical considerations in HIV preventive vaccine research
sexual activity, lack of access to HIV prevention educa
tion and means, and engagement in injecting drug use.
Introduction
3
Context
6
Suggested guidance
11
Guidance Point
1: HIV vaccines development
Guidance Point
2: Vaccine availability
Guidance Point
3: Capacity building
11
13
15
Guidance Point
4: Research protocols and
study populations
Guidance Point
5: Community participation
Guidance Point
6: Scientific and ethical review
Guidance Point
7: Vulnerable populations
Guidance Point
8: Clinical trial phases
Guidance Point
9: Potential harms
Guidance Point 10: Benefits
Guidance Point 11: Control group
Guidance Point 12: Informed consent
Guidance Point 13: Informed consent special measures
Guidance Point 14: Risk-reduction interventions
Guidance Point 15: Monitoring informed
consent and interventions
Guidance Point 16: Care and treatment
Guidance Point 17: Women
Guidance Point 18: Children
17
19
21
22
24
27
30
31
32
36
38
39
41
45
46
Therefore, vaccine development programmes should
consider the needs of children for an effective HIV
vaccine; should explore the legal, ethical and health
considerations relevant to their participation in vaccine
research; and should enrol children in clinical trials
designed to establish safety, immunogencity, and
efficacy for their age groups, once they can be so
enrolled in terms of meeting the health needs and
ethical considerations relevant to their situation. Those
designing vaccine development programmes that might
include children should do so in consultation with
groups dedicated to the protection and promotion of
the rights and welfare of children, both at international
and national levels.
Unless exceptions are authorized by national legislation in
the host country, consent to participate in an HIV vaccine
trial must be secured from the parent or guardian of a
child who is a minor before the enrolment of the child as a
participant in a vaccine trial. The consent of one parent is
generally sufficient, unless national law requires the
consent of both. Every effort should be made to obtain
consent to participate in the trial also from the child
according to the evolving capacities of the child.
4 As defined by the Convention on the Rights of the Child, Article 1 :
"... a child means every human being below the age of eighteen years
unless, under the law applicable to the child, majority is attained earlier."
47
Ethical considerations in HIV preventive vaccine research
UNAIDS guidance document
themselves and for their fetus or child. As with all
research participants, steps should be taken to ensure
that pregnant or breast-feeding women who are enrolled
in vaccine trials are capable of giving informed consent,
as indicated in Guidance Points 12 and 13. Furthermore,
in order for (pregnant) women to be able to make an
informed choice for their fetus/breast-fed infant, they
should be duly informed about any potential for teratogenesis and other risks to the fetus, and/or the breast
fed infant. If there are risks related to breast-feeding,
they should be informed of the availability of nutritional
substitutes and other supportive services.
hildren4, includ
ing infants and
adolescents, should
be eligible for enrolment in
HIV preventive vaccine
trials, both as a matter of
equity and as a function of
the fact that in many
communities throughout
the world children are at
high risk of HIV infection.
Infants born to HIV-infected
mothers are at risk of
becoming infected during
birth and during the post
partum period through
breast-feeding. Many
adolescents are also at high
risk of infection due to
46
Guidance Point 18 :
Children
As children should be recipi
ents of future HIV preventive
vaccines, children should be
included in clinical trials in or
der to verify safety, immuno
genicity, and efficacy from
their standpoint. Efforts
should be taken to design vac
cine development pro
grammes that address the
particular ethical and legal
considerations relevant for
children, and safeguard their
rights and welfare during par
ticipation.
Introduction
As we enter the third decade of the AIDS pandemic,
there still remains no effective HIV preventive vaccine.
As the numbers of those infected by HIV and dying
from AIDS increase dramatically, the need for such a
vaccine becomes ever more urgent. Several HIV
candidate vaccines are at various stages of development.
However, the successful development of effective HIV
preventive vaccines is likely to require that many different
candidate vaccines be studied simultaneously in different
populations around the world. This in turn will require a
large international cooperative effort drawing on part
ners from various health sectors, intergovernmental
organizations, government, research institutions,
industry, and affected populations. It will also require
that these partners be able and willing to address the
difficult ethical concerns that arise during the develop
ment of HIV vaccines.
In an effort to elucidate these ethical concerns, and to
create forums where they could be discussed in full by
those presently involved in, or considering, HIV vaccine
development activities, the UNAIDS Secretariat
convened meetings in Geneva (twice), Brazil, Thailand,
Uganda and Washington during 1997-1999. These
meetings included lawyers, activists, social scientists,
ethicists, vaccine scientists, epidemiologists,
representatives of NGOs, people living with HIV/AIDS,
and people working in health policy. In the regional
meetings, efforts were made to include people from a
number of countries from that particular region. The
entire process involved people from a total of
3
Ur* aIDS guidance document
Ethical considerations in HIV preventive vaccine research
Guidance Point I 7 : Women
33 countries.1 The goals were to : (1) identify and
discuss ethical elements specific to development of HIV
preventive vaccines; (2) reach consensus when possible;
and elucidate different positions, when not; (3) progress
in ability to address these matters during pending or
proposed HIV vaccine research.
In the present document, UNAIDS seeks to offer guid
ance emanating from this process. This document does
not purport to capture the extensive discussion, debate,
consensus, and disagreement which occurred at these
meetings. Rather it highlights, from UNAIDS' perspec
tive, some of the critical elements that must be consid
ered in HIV vaccine development activities. Where
these are adequately addressed, in UNAIDS' view, by
other existing texts, there is no attempt to duplicate or
replace these texts, which should be consulted exten
sively throughout HIV vaccine development activities.
Such texts include : the Nuremberg Code (1947); the
Declaration of Helsinki, first adopted by the World
Medical Association in 1964 and subsequently
amended in 1975, 1983, 1989 and 1996; the Belmont
Report - Ethical Principles and Guidelines for the Protec
tion of Human Subjects of Research, issued in 1979 by
the US National Commission for the Protection of
Human Subjects of Biomedical and Behavioral Research;
the International Ethical Guidelines for Biomedical
Research Involving Human Subjects, issued by the
Council for International Organizations of Medical
•-5
% A /omen, includ\/\/ 'ng PreSnant
V
As women, including those
who are potentially preg
nant, pregnant, or breast
feeding, should be recipients
of future HIV preventive vac
cines, women should be in
cluded in clinical trials in or
der to verify safety, immuno
genicity, and efficacy from
their standpoint. During
such research, women should
receive adequate informa
tion to make informed
choices about risks to them
selves, as well as to their fe
tus or breast-fed infant,
where applicable.
V women, poten
tially pregnant women
and breast-feeding
women, should be
5
eligible for enrolment in
HIV preventive vaccine
trials, both as a matter of
equity and because in
many communities
throughout the world
women are at high risk of
HIV infection. Therefore,
the safety, immunogenic
ity, and efficacy of
candidate vaccines
should be established for
women, and for their
fetus and breast-fed
child, where applicable.
In these situations, the
clinical trials should be designed with the intent of
establishing the effects of the candidate vaccine on the
health of the woman and the fetus and/or breast-fed
infant, where applicable.
1 For a full description of the process and participants, see "Final Report, UNAIDSSponsored Regional Workshops to discuss Ethical Issues in Preventive HIV Vac
cine Trials", available from UNAIDS. See also Guenter, Esparza, and Macklin:
Ethical considerations in international HIV vaccine trials: summary of a consulta
tive process conducted by the Joint United Nations Programme on HIV/AIDS
(UNAIDS. Journal of Medical Ethics (February 2000), vol. 26, No. 1: 37-43.
Although the enrolment of pregnant, potentially
pregnant, or breast-feeding women complicates the
analysis of risks and benefits, because both the woman
and the fetus or infant could be benefited or harmed,
such women should be viewed as autonomous deci
sion-makers, capable of making an informed choice for
4
45
UNAIDS guidance document
L
F
Ethical considerations in HIV preventive vaccine research
Those participating in the planning of vaccine
development programmes should seek to pro
vide a comprehensive care and treatment pack
age based, at a minimum, on standards of care
developed by the community, but also taking into
account the additional resources and higher
standards brought by the sponsor into the
research setting.
Sponsors should contribute to the building up of
both the research capacity and the health care
delivery capacity of the community where the
research is to be carried out, in such a way that
they become integrated into the infrastructure of
the community.
Sciences (CIOMS) in 1993 (and developed in close
cooperation with WHO); the World Health
Organization's Good Clinical Practice (WHO GCP)
Guideline (1995); and the International Conference on
Harmonisation's Good Clinical Practice (ICH GCP)
Guideline (1996).
It is hoped that this document will be of use to poten
tial research participants, investigators, community
members, government representatives, pharmaceutical
companies, and ethical and scientific review commit
tees involved in HIV preventive vaccine development.
It suggests standards, as well as processes for arriving
at standards, and can be used as a frame of reference
from which to conduct further discussion at the interna
tional, national, and local levels.
Such a care and treatment package should include, but
not be limited to, some or all of the following items,
depending on the type of research, the setting, and the
consensus reached by all interested parties before the
trials begin:
E
L
E
E
L
E
counselling
preventive methods and means
treatment for other STIs
tuberculosis prevention and treatment
prevention/treatment of opportunistic infections
nutrition
r.
palliative care, including pain control and spiritual
care
E
L
referral to social and community support
family planning
i.
antiretroviral therapy
home-based care
44
5
JNAIDS guidance document
deal considerations in HIV preventive vaccine research
Context
if sponsors fill this role
The HIV/AIDS pandemic is characterized by unique
biological, social and geographical factors that, among
other things, affect the balance of risks and benefits for
individuals and communities who participate in HIV
vaccine development activities. These factors may
require that additional efforts are made to address the
needs of participating individuals and communities,
including their urgent need for a HIV vaccine, their
need to have their rights protected and their welfare
promoted in the context of HIV vaccine development
activities, and their need to be able to be full and equal
participants . These factors include the following :
The global burden of disease and death related
to HIV is increasing at a rate unmatched by any
other pathogen. For many countries, it is already
the leading cause of death. Currently available
treatments are inadequate because they do not
lead to cure, but at best slow the progression of
disease. The most effective treatment for slowing
HIV-related disease progression, antiretroviral
medication, is complicated to administer, requires
close medical monitoring, is extremely costly, and
can cause significant adverse effects. Because of
this, antiretroviral medication is not readily
available to the vast majority of people affected
by HIV/AIDS. These are people living in develop
ing countries and in marginalized communities in
6
J
governments' desire to be able to attract research
into their countries in order to address the critical
need of their populations for an HIV preventive
vaccine
a
the right and responsibility of sovereign nations
and communities to determine for themselves the
balance of risks and benefits they are willing to
accept.
In the light of these competing concerns, it is recom
mended that:
3
A consensus on the standard/level of care and
treatment, its duration, and who will bear the
costs should be reached prior to a decision to host
HIV vaccine development.
3
This consensus should emerge from an extensive
dialogue involving the above-mentioned compet
ing concerns among sponsors, and representa
tives from the potential host country and commu
nities from which potential trial participants
would be drawn, e.g. government officials,
national scientific and ethical communities,
affected populations, relevant NGOs, local
religious and community leaders.
3
Such a consensus should aim for achieving, as
closely as possible, the ideal of provision of the
best proven therapy for trial participants, in the
light of relevant conditions and concerns.
3
Sponsors should seek, at a minimum, to ensure
access to a level of care and treatment that
approaches the best proven care and treatment
that are attainable in the potential host country.
43
Ethical considerations in HIV preventive vaccine research
UNAIDS guidance document
care and treatment, post-exposure prophylaxis
and antiretroviral therapy, according to the best
scientific evidence for effectiveness available at
the time of the trial; and should last at least for
the duration for the trial, and longer, if so negoti
ated
£
r
at a level decided upon by the host country, e.g.
it might include immunological monitoring,
physician visits, prevention and treatment of
opportunistic infections, and palliative care, but
not necessarily antiretroviral therapy; and should
be made reasonably available for the lifetime of
the participants
at a level consistent with that available in the host
country; there is no imperative to provide a level
of care consistent with that in the sponsoring
country, or with the highest available in the world.
Competing considerations that have led to disagree
ment about the standard of care and treatment include:
E
the need to achieve equity in care and treatment
for all participants in HIV vaccine trials globally; in
particular, to achieve equity between potential
participants from sponsor countries and host
countries
E.
an ethical obligation of sponsors to provide care
and treatment according to their resources
concern that a high level of care and treatment
will constitute undue incentives and inducements
for countries and communities to participate
EL
concern that governments might abdicate on
their responsibility to provide care and treatment
42
developed countries. There is therefore an
ethical imperative to seek, as urgently as pos
sible, a globally effective and accessible vaccine,
to complement other prevention strategies.
Furthermore, this ethical imperative demands
that HIV preventive vaccines be developed to
address the situation of those people and popu
lations most vulnerable to infection.
Genetically distinct subtypes of HIV have been
described, and different HIV subtypes are pre
dominant in different regions and countries. Yet
the relevance of these subtypes to potential
vaccine-induced protection is not clearly under
stood. Thus, it is not known whether a vaccine
targeted at one subtype will protect against
infection from another subtype; and it is likely
that a vaccine directed at a particular subtype will
need to be tested in a population in which that
subtype is prevalent. Therefore, developing a
vaccine that is effective in the populations with
the greatest incidence of HIV is likely to require
experimental vaccines be tested in those popula
tions, even though these populations may for a
variety of reasons be relatively vulnerable to
exploitation and harm in the context of HIV
vaccine development. Additional efforts may
need to be made to overcome this vulnerability.
Some candidate vaccines may be conceived and
manufactured in laboratories of one country
(sponsor country or countries), usually in the
developed world, and tested in human popula
tions in another country (host country or coun
tries), often in the developing world.
7
1 'AIDS guidance document
'hical considerations in HIV preventive vaccine research
Guidance Point 16 :
Care and treatment
[The term 'sponsor' has usually referred to the
individual or institution who either owns the candi- _
date vaccine or provides the material resources
necessary to carry out the vaccine development
programme. Traditionally, the sponsor has been
thought of as a single corporate entity, such as a
pharmaceutical company. In modern vaccine
development programmes there are commonly
multiple sponsors including one or more corpora
tions, one or more national governments and one or
more international agencies.] The potential imbal
ance of such a situation demands particular atten
tion to factors that will address the differing per
spectives, interests and capacities of sponsors and
hosts with the goal of encouraging the urgent
development of effective vaccines, in ethically
acceptable manners, and their early distribution to
populations most in need. In this regard, potential
host countries and communities should be encour
aged and given the capacity to make decisions for
themselves regarding their participation in HIV
vaccine development, based on their own health
and human development priorities, in a context of
equal collaboration with sponsors.
HIV/AIDS is a condition that is both highly feared
and stigmatized. This is in large part because it is
associated with blood, death, sex, and activities
which are often not legally sanctioned, such as
commercial sex, men having sex with men, and
substance abuse. These are issues which are
difficult to address openly - at a societal and
individual level. As a result, people affected by
HIV/AIDS can experience stigma, discrimination,
8
^*ponsors need to
^^ensure care and
treatment for
participants who
become HIV-infected
during the course of
the trial. At present,
there is no universal
consensus regarding
the level of care and
treatment that should
be provided. This was
evidenced at the
UNAIDS-sponsored
regional workshops to
discuss ethical issues
in preventive HIV
vaccine trials at which
the following three
different conclusions
were reached. Care
and treatment for
those who become
infected should be
provided:
at the level of
that offered in
the sponsor
country, and
should include
preventive risk
behaviour
counselling,
general HIV
Care and treatment for HIV/AIDS
and its associated complications
should be provided to participants
in HIV preventive vaccine trials,
with the ideal being to provide the
best proven therapy, and the mini
mum to provide the highest level
of care attainable in the host
country in light of the circum
stances listed below. A compre
hensive care package should be
agreed upon through a host/community/sponsor dialogue which
reaches consensus prior to initia
tion of a trial, taking into consid
eration the following :
1
level of care and treatment
available in the sponsor
country
1
highest level of care avail
able in the host country
1
highest level of treatment
available in the host coun
try, including the availabil
ity of antiretroviral therapy
outside the research con
text in the host country
1
availability of infrastructure
to provide care and treat
ment in the context of re
search
1
potential duration and
sustainability of care and
treatment for the trial par
ticipant.
41
Ethical considerations in HIV preventive vaccine research
UNAIDS guidance document
partnership. Consideration should be given to the
expansion of the responsibilities of the clinical trial
monitor to include adherence to the informed consent
and counselling process, and/or the appointment of an
independent counselling monitor, as suggested in
Guidance Point 13. The appropriateness of such plans
should be determined by the scientific and ethical
review committees that are responsible for providing
prior and continuing review of the trial. This recom
mendation supplements the usual guidelines for the
monitoring of vaccine trials for safety and compliance
with scientific and ethical standards and regulatory
requirements.
40
and even violence; and governments and com
munities continue to deny the existence and
prevalence of HIV/AIDS. Furthermore, vulner
ability to HIV infection and to the impact of AIDS
is greater where people are marginalized due to
their social, economic and legal status. These
factors increase the risk of social and psychologi
cal harm for people participating in HIV vaccine
research. Additional efforts must be made to
address these increased risks, and to ensure that
the risks participants take are justified by the
benefits they receive by virtue of their participa
tion in the research. A key means by which to
protect participants and the communities from
which they come is to ensure that the community
in which the research is carried out is meaning
fully involved in the design, implementation, and
distribution of results of vaccine research, includ
ing the involvement of representatives from
marginalized communities from which partici
pants are drawn, where possible and appropriate.
9
Ethical considerations in HIV preventive vaccine research
The provision of counselling to reduce risk should be
monitored to ensure quality and to minimize the poten
tial conflict of interest between the risk-reduction goals
and the vaccine trial's scientific goals. As new methods
of prevention are discovered and validated, these must
be added to the preventive methods being offered to
trial participants.
Guidance Point 15 :
Monitoring informed con
sent and interventions
he value of
informed con
A plan for monitoring the ini
sent depends
tial and continuing adequacy
primarily on the
of the informed consent pro
ongoing quality of the
i
cess and risk-reduction in
process by which it is
terventions, including coun
conducted, and not
selling
and access to preven
solely on the structure
tion methods, should be
and content of the
agreed upon before the trial
informed consent
commences.
document. The
informed consent
process should be
designed to empower participants to allow them to
make appropriate decisions. Similarly, there are many
ways in which risk reduction (counselling and access to
means of prevention) can be conducted, with some
methods being more effective than others in conveying
the relevant information and in reducing risk behaviour.
A method for monitoring the adequacy of these pro
cesses should be designed and agreed upon by the
community-host-government-investigator-sponsor
39
Ethical considerations in HIV preventive vaccine research
UNAIDS guidance document
I
Guidance Point 14 :
Risk-reduction interventions
educing the risk of
HIV infection
> throughout the
Appropriate risk-reduction
counselling and access to pre
vention methods should be pro
vided to all vaccine trial par
ticipants, with new methods
being added as they are discov
ered and validated.
trial among participants is
an essential ethical compo
nent of HIV preventive
vaccine trials. All trial
participants should receive
comprehensive counselling
concerning methods of
decreasing the risk of
transmission of HIV This should include the basic prin
ciples of safe sexual practice and safe use of injection
equipment, as well as education concerning general health
and treatment of sexually transmitted infections (STIs).
Investigators should provide trial participants appropriate
access to condoms, sterile injecting equipment (where
legal) and treatment for other STIs. All trial participants
should also be counselled prior to enrolling in a clinical trial
regarding the potential benefits and risks of post-expo
sure prophylaxis with antiretroviral medication, and how it
can be accessed in the community.
The technique and frequency of counselling should be
agreed upon by the community-host government-investi
gator-sponsor partnership, and should be based upon
reliable information about the prevailing social and
behavioural characteristics of the study population.
Consideration should be given to providing counselling
through an agency or organisation that is independent of
the investigators in order to prevent any real or perceived
conflict of interest. Local capacity should be developed to
employ such means in a culturally suitable and sustainable
fashion, guided by the best scientific data.
38
Suggested guidance
iven the global
Guidance Point I:
nature of the
HIV vaccines development
epidemic, the
devastation being
Given the severity of the HIV/
wreaked in some
AIDS pandemic in human, pub
countries by it, the
lic health, social, and eco
fact that vaccine(s)
nomic terms, sufficient capac
may be the best long
ity and incentives should be de
term solution by which
veloped to foster the early and
to control the epi
ethical development of effec
demic, especially in
tive vaccines, both from the
developing countries,
point of view of countries
and the potentially
where HIV vaccine trials may
universal benefits of
be held, and from the point of
effective HIV vaccines,
view of sponsors of HIV vaccine
there is an ethical
trials. Donor countries and
imperative for global
relevant international or
support to the effort
ganizations shouldjoin with these
to develop these
stakeholders to promote such
vaccines. This effort
vaccine development.
will require intense
international collabo
ration and coordina
tion over time, including among countries with scientific
expertise and resources, and among countries where
candidate vaccines could be tested but whose infra
structure, resource base, and scientific and ethical
capacities could be insufficient at present. Though HIV
vaccines should benefit all those in need, it is imperative
that they benefit the populations at greatest risk of
11
UN AIDS guidance document
Pthical Considerations in HIV preventive vaccine research
infection. Thus, HIV vaccine development should
ensure that the vaccines are appropriate for use among
such populations, among which it will be necessary to
conduct trials; and, when developed, they should be
made available and affordable to such populations.
J
Persons who engage in illegal or socially stigma
tized activities are vulnerable to undue influence
and threats presented by possible breaches of
confidentiality and action by legal forces. Such
persons include sex workers, intravenous drug
users, and men who have sex with men.
Because HIV vaccine development activities take time,
are complex, and require infrastructure, resources and
international collaboration,
.1
Persons who are impoverished or dependent on
welfare programmes are vulnerable to being
unduly influenced by offers of what others may
consider modest material or health inducements.
a
potential sponsor countries and host countries
should immediately include HIV vaccine develop
ment in their regional and national AIDS preven
tion and control plans.
3
Women living in cultures where their autonomy
as individuals is not sufficiently recognized are
vulnerable to influence and coercion from male
partners, family, or community members.
potential host countries should assess how they
can and should participate in HIV vaccine devel
opment activities either nationally or on a re
gional basis, including identifying resources,
establishing partnerships, conducting national
information campaigns, strengthening their
scientific and ethical sectors, and including a
vaccine research component to complement
other prevention interventions.
Steps that might be taken to ensure that ongoing free
and informed consent is given by participants from
these groups include :
3
3
potential donors and international agencies
should make early and sustained commitments to
allocate sufficient funds to make a vaccine a
reality, including funds to strengthen ethical and
scientific capacity in countries where multiple
trials will have to be conducted and to purchase
and distribute future vaccines.
j
appointment of an independent ombudsperson
and/or group to monitor these issues
expansion of the responsibilities of the clinical
trial monitor to include adherence to the in
formed consent and counselling process, or
appointment of an independent counselling
monitor
a
training of the counsellors on these issues, and
3
group counselling and/or interaction with local
NGOs representing the groups from which such
participants are drawn.
potential sponsors should establish partnerships
12
37
UNAIDS guidance document
Ethical considerations in HIV preven:ive vaccine research
and how it can be accessed, if they become
infected with HIV during the course of the trial
(see Guidance Point 16).
Guidance Point 13 :
Informed consent - special
measures
^^"here are several
I categories of persons
I who are legally
Special measures should be
taken to protect persons who
are, or may be, limited in their
ability to provide informed
consent due to their social or
legal status.
competent to consent to
participate in a trial, and
who have sufficient cogni
tive capacity to consent, but
who may have limitations in
their freedom to make
'WilB •AWBSff’W *? ',7' I: •'a :
independent choices. Those
who plan, review, and conduct vaccine trials should be
alert to the problems presented by the involvement of
such persons, and either exclude such persons, if their
vulnerability cannot be addressed, or take appropriate
steps to ensure meaningful and independent ongoing
informed consent, respect their rights, foster their well
being, and protect them from harm. The following are
individuals or groups who should be given extra consid
eration with regard to their ability to provide informed
consent in HIV preventive vaccine trials:
Persons who are junior or subordinate members
of hierarchical structures may be vulnerable to
undue influence or coercion in that they may fear
retaliation if they refuse cooperation with authorities.
Such persons include members of the armed forces,
students, government employees, prisoners, and
refugees.
36
with potential host countries, and begin discus
sions regarding community consultations,
strengthening necessary scientific and ethical
components, and eventual plans for equitable
distribution of the benefits of research.
yV (though making
ZJa a safe and
/
> effective
Guidance Point 2 :
Vaccine availability
Any HIV preventive vaccine
demonstrated to be safe and
effective, as well as other
knowledge and benefits result
ing from HIV vaccine research,
should be made available as
soon as possible to all partici
pants in the trials in which it
was tested, as well as to other
populations at high risk of HIV
infection. Plans should be de
veloped at the initial stages of
HIV vaccine development to
ensure such availability.
vaccine reasonably
available to the
population where it
was tested is a basic
ethical requirement,
some have argued
that it could be a
disincentive for
industry to conduct
studies in countries
with large populations,
or that it could consti
tute an undue induce
ment for a resource
poor country or
community to "coop
erate". Given the severity of the epidemic, it is impera
tive that sufficient incentives exist, both through financial
rewards in the marketplace and through public subsidies,
to foster development of effective vaccines while also
ensuring that vaccines are produced and distributed in a
fashion that actually makes them available to the
populations at greatest risk.
13
Uf AIDS guidance document
Ethical considerations in HIV preventive vaccine research
As health and research communities build HIV preventive
vaccine research programmes, attention needs to be given
immediately to how a successful vaccine, and other benefits _
resulting from the research, will be made readily and
affordably available to the communities and countries where
such a vaccine is tested, as well as to other communities and
countries at high risk for HIV infection. This process of
discussion and negotiation should start as soon as possible
and should be carried on through the course of the research.
prospective participant must be informed, using appro
priate language and technique, of the following specific
details:
At a minimum, the parties directly concerned should begin
this discussion before the trials commence. This discussion
should include representatives from relevant stakeholders in
the host country, such as representatives from the executive
branch, health ministry, local health authorities, and relevant
scientific and ethical groups. It should also include representa
tives from the communities from which participants are
drawn, people living with HIV/AIDS, and NGOs representing
affected communities. The discussions should include
decisions regarding payments, royalties, subsidies, technology
and intellectual property, as well as distribution costs, chan
nels and modalities, including vaccination strategies, target
populations, and number of doses.
Furthermore, the discussion concerning availability and
distribution of an effective HIV vaccine should engage
international organizations, donor governments and bilateral
agencies, representatives from wider affected communities,
international and regional NGOs and the private sector.
These should not only consider financial assistance regarding
making vaccines available, but should also help to build the
capacity of host governments and communities to negotiate
for and implement distribution plans.
14
□
Prospective participants of phase II and III trials of
HIV preventive vaccines should be informed that
they have been chosen as prospective participants
because they are at relatively high risk of HIV
infection.
a
Prospective participants for phase I, II and III trials
should be informed that they will receive counsel
ling and access to the means of risk reduction (in
particular, male and female condoms, and clean
injecting equipment, where legal) concerning
how to reduce their risk of infection; and that in
spite of these risk reduction efforts, some of the
participants may become infected, particularly in
the case of phase III trials where large numbers of
participants at high risk are participating.
i
They should be informed that it is not known
whether the experimental vaccine will prevent
HIV infection or disease, and further, that some of
the participants will receive a placebo instead of
the candidate HIV vaccine, when such is the case.
3
They should be informed of the specific risks for
physical harm, as well as for psychological and
social harm, and of the types of treatment and
compensation that are available for harm, and of
services to which they may be referred should
harm occur.
3
All prospective participants of phase I, II or III
trials should be informed of the nature and
duration of care and treatment that is available,
35
UNAIDS guidance document
Ethical considerations in HIV preventive vaccine research
post-test counselling, should also be given for any re
peated tests for HIV status. Throughout all stages of the
trial and consent process, there should be assurance by the
investigator that the information is understood before
consent is given.
In some communities, it is customary to require the
authorization of a third party, such as a community elder,
in order for investigators to enter the community to invite
individual members to participate in research. Other
situations which make individual informed consent difficult
include those in which an individual requires approval of
another person or group in order to make decisions,
where there is coercion, and where there is a cultural
tradition of sharing risks and responsibilities, e.g. in some
cultures where men hold the prerogative in marital
relationships, where there is parental control of women,
and/or where there are strong influences by community
and/or religion or hierarchy (see Guidance Point 13).
Such authorization or influence must not be used as a
substitute for individual informed consent. Nor should
trials be conducted where truly individual and free con
sent cannot be obtained. Authorization by a third party in
place of individual informed consent is permissible only in
the case of some minors who have not attained the legal
age of consent to participate in a trial. In cases where it is
proposed that minors will be enrolled as research partici
pants, specific and full justification for their enrolment
must be given, and their own consent must be obtained in
light of their evolving capacities (see Guidance Point 18).
In addition to the standard content of informed consent,
prior to participation in an HIV vaccine trial, each
34
r^otential host
countries and
I
communities
Guidance Point 3 :
Capacity building
Strategies should be imple
mented to build capacity in
host countries and communi
ties so that they can practise
meaningful self-determination
in vaccine development, can
ensure the scientific and ethi
cal conduct of vaccine devel
opment, and can function as
equal partners with sponsors
and others in a collaborative
process.
have the right, and
the responsibility, to
take decisions re
garding the nature of
their participation in
HIV vaccine research.
Yet disparities in
economic wealth,
scientific experience,
and technical capac
ity among countries
and communities can
lead to undue influ
ence over and pos
sible exploitation of host countries and communities.
The development of an HIV vaccine will require inter
national cooperative research, which should transcend,
in an ethical manner, such disparities. Real or perceived
disparities should be resolved in a way that ensures
equality in decision-making and action. The desired
relationship is one of collaboration among equals. Factors
that may increase vulnerability to exploitation of host
countries and communities may include, but are not
limited to, the following: ’
level of the proposed community's economic
capacity, such as is reflected in the Human Devel
opment Index of the UNDP
E
community/cultural experience with, and/or
understanding of, scientific research
15
'(AIDS guidance document
□
□1
'■*hical considerations in HIV preventive vaccine research
local political awareness of the importance and
process of vaccine research
local infrastructure, personnel, and technical
capacity for providing HIV health care and treat
ment options
J
ability of individuals in the community to provide
informed consent, including the effect of class,
gender, and other social factors on the potential
for freely given consent
2]
level of experience and capacity for conducting
ethical and scientific review, and
J
local infrastructure, personnel, and technical
capacity for conducting the proposed research.
Strategies to overcome these disparities could involve:
J
scientific exchange, and knowledge and skills
transfer between sponsor countries and institu
tions, and host countries and communities
1
capacity-building programmes in the science and
ethics of vaccine development by relevant scien
tific institutions and international organizations
□
support to development of national and local
ethical review capacity (see Guidance Point 6)
.1
support to affected communities and communi
ties from which participants are drawn regarding
information, education, and capacity and consen
sus-building on vaccine development, and
1
early involvement of affected communities in the
design and implementation of vaccine develop
ment plans and protocols (see Guidance Point 5).
16
'contagion', 'placebo', 'double blind', and other con
cepts involved in the scientific design of the research.
HIV preventive vaccine trials require informed consent
at a number of stages. The first stage consists of
screening candidates for eligibility for participation in
the trial, which will involve, among other things, an
assessment of the individual's risk-taking behaviour and
a test for HIV status. Informed consent should be
obtained during this screening process after the candi
date has received all material information regarding the
screening procedures, as well as an outline of the
vaccine trial in which he will be invited to enrol, if
found eligible. Fully informed consent should also be
given for the test for HIV status, which should also be
accompanied by pre-and post-test counselling, and
referral to clinical and social support services, if found
positive.
The second stage at which informed consent is required
occurs once a person is judged eligible for enrolment.
That individual should then be given full information
concerning the nature and length of participation in the
trial, including the risks and benefits posed by participa
tion, so that s/he is able to give informed consent to
participate.
Once enrolled, efforts should then be made throughout
the trial to obtain assurance that the participation contin
ues to be on a basis of free consent and understanding of
what is happening. Informed consent, with pre- and
33
UNAIDS guidance document
Ethical considerations in HIV preventive vaccine research
In an effort to address the concern of lack of benefit to
those randomly placed in a placebo control arm, apart
from the benefits described in Guidance Point 10, it is
recommended that the provision to these persons of
another vaccine, such as for hepatitis B or tetanus, be
considered. The appropriateness of such a step should
be analysed in terms of the scientific requirements of
the trial, the health needs
of the population of partici
Guidance Point 12 :
pants, and the balance of
Informed consent
benefits and risks to the
I n order to be
I ethical, clinical
I trials of vaccines
active versus control arms
of the trial.
A
Z
process of consultation between com>munity representa
tives, researchers,
sponsor(s) and regulatory
bodies should be used to
design an effective in
formed consent strategy
and process. Issues such as
illiteracy, language and
cultural barriers, and
diminished personal
autonomy should be
addressed in this consulta
tive process. In some
communities, special efforts
may be required to achieve
adequate understanding
of 'cause and effect',
32
Independent and informed
consent based on complete,
accurate, and appropriately
conveyed and understood in
formation should be obtained
from each individual while be
ing screened for eligibility for
participation in an HIV pre
ventive vaccine trial, and be
fore s/he is actually enrolled in
the trial. Efforts should be
taken to ensure throughout
the trial that participants con
tinue to understand and to
participate freely as the trial
progresses. Informed con
sent, with pre- and post-test
counselling, should also be ob
tained for any testing for HIV
status conducted before, dur
ing, and after the research.
Guidance Point 4 :
Research protocols
and study populations
In order to conduct HIV vac
should be based on
cine
research in an ethically
scientifically valid
acceptable manner, the re
research protocols,
search
protocol should be sci
and the scientific
entifically
appropriate, and
questions posed
the desired outcome of the
should be rigorously
proposed research should po
formulated in a
tentially benefit the popula
research protocol
tion from which research par
that is capable of
ticipants are drawn.
providing reliable
responses. Valid
scientific questions
relevant to HIV
vaccine development are those that seek:
to gain scientific information on the safety,
immunogenicity (ability to induce immune re
sponses against HIV) and efficacy (degree of
protection) of candidate vaccines
[■/
to determine immunological correlates or surro
gates in order to identify the protective mecha
nisms and how they can be elicited
E
to compare different candidate vaccines; and
L
to test whether vaccines effective in one popula
tion are effective in other populations.
Furthermore, the selection of the research population
should be based on the fact that its characteristics are
relevant to the scientific issues raised; and the results of
17
UNAIDS guidance document
Ethical considerations in HIV preventive vaccine research
the research will potentially benefit the selected
population. In this sense, the research protocol
should:
justify the selection of the research population
from a scientific point of view
■J
outline how the risks undertaken by the partici
pants of that population are balanced by the
potential benefits to that population
%
address particular needs of the proposed research
population
3
demonstrate how the candidate vaccine being
tested is expected to be beneficial to the popula
tion in which testing occurs, and
a
establish safeguards for the protection of research
participants from potential harm arising from the
research.
These general principles will be further elaborated below.
18
Guidance Point 11 :
Control group
A vaccine with
ZJk proven efficacy
/
> in preventing
infection or disease from
HIV does not currently
exist Therefore, the use
of a placebo control
arm is ethically accept
able in appropriately
designed protocols.
As long as there is no known
effective HIV preventive vac
cine, a placebo control arm
should be considered ethically
acceptable in a phase III HIV
preventive vaccine trial. How
ever, where it is ethically and
scientifically acceptable, con
sideration should be given to
the use in the control arm of
a vaccine to prevent a rel
evant condition apart from
HIV.
i
Participants in the
control arm of a future
phase III HIV preventive
vaccine trial should
receive an HIV vaccine
known to be safe and
effective when such is available, unless there are compelling
scientific reasons which justify the use of a placebo. Com
pelling scientific reasons to use a placebo rather than a
known effective HIV vaccine in the research population
include the following :
.3
The effective HIV vaccine is not believed to be
effective against the virus that is prevalent in the
research population.
2
There are convincing reasons to believe that the
biological conditions that prevailed during the
initial trial demonstrating efficacy were so different
from the conditions in the proposed research
population that the results of the initial trial cannot
be directly applied to the research population
under consideration.
31
Ethical considerations in HIV preventive vaccine research
UNAIDS guidance document
1
^ome of the activities
^^related to the cond^^uct of HIV vaccine
i
trials should benefit those
who participate. At a
minimum, participants
should :
Guidance Point 10 :
Benefits
The research protocol should
outline the benefits that per
sons participating in HIV pre
ventive vaccine trials should
experience as a result of their
participation. Care should be
taken so that these are not
presented in a way that unduly
influences freedom of choice
in participation.
E
have regular and
supportive contact
with health care
workers and coun
sellors throughout
the course of the
trial
E'.
receive comprehen
sive information regarding HIV transmission and
how it can be prevented
E‘
receive access to HIV prevention methods,
including male and female condoms, and clean
injecting equipment, where legal
have access to a pre-agreed care and treatment
package for HIV/AIDS if they become HIVinfected while enrolled in the trial (see Guidance
Point 16)
E
receive compensation for time, travel and incon
venience for participation in the trials, and
r
if the vaccine is effective, develop protective
immunity to HIV.
Guidance Point 5 :
Community participation
I nvolvement of
I community repreI sentatives should
To ensure the ethical and
scientific quality of pro
posed research, its rel
evance to the affected com
munity, and its acceptance
by the affected community,
community representatives
should be involved in an
early and sustained manner
in the design, development,
implementation, and distri
bution of results of HIV vac
cine research.
not be seen as a
single encounter, nor
as one-directional.
The orientation of
community involve
ment should be one
of partnership towards mutual
education and
consensus-building
regarding all aspects
of the vaccine
development
programme. There
should be established a continuing forum for communi
cation and problem-solving on all aspects of the vaccine
development programme from phase I through phase III
and beyond, to the distribution of a safe, effective,
licensed vaccine. All participating parties should define
the nature of this ongoing relationship. It should include
appropriate representation of the community on
committees charged with the review, approval, and
monitoring of the HIV vaccine research. Like investiga
tors and sponsors, communities should assume appropri
ate responsibility for assuring the successful completion
of the trial and of the programme.
Appropriate community representatives should be deter
mined through a process of broad consultation. Members
of the community who may contribute to a vaccine
30
19
NAIDS guidance document
hical considerations in HIV preventive vaccine research
development process include representatives of the
research population eligible to serve as research partici
pants, other members of the community who would be
among the intended beneficiaries of the developed
vaccine, relevant nongovernmental organizations,
persons living with HIV/AIDS, community leaders,
public health officials, and those who provide health
care and other services to people living with and af
fected by HIV.
Participation of the community in the planning and
implementation of a vaccine development strategy can
provide the following benefits:
’1
information regarding the health beliefs and
understanding of the study population
2
J
input into the design of the protocol
1
input into an appropriate informed consent
process
insight into the design of risk reduction interven
tions
effective methods for disseminating information
about the trial and its outcomes
1
information to the community-at-large on the
proposed research
3
d
trust between the community and researchers
3
With regard to psychosocial risks, participation in a
complicated, lengthy trial involving intensely intimate
matters, involving repeated HIV testing, and involving
exposure to culturally different scientific and medical
concepts may cause anxiety, stress, depression, as well
as stress between partners in a relationship. Participa
tion, if it becomes publicly known, may also cause
stigma and discrimination against the participant if s/he
is perceived to be HIV-infected. Finally, some people
may develop a positive HIV test after receiving a
candidate HIV vaccine, even though they are not truly
infected with HIV, i.e. a 'false positive' HIV test. This
may result in the same negative social consequences
that exist for those actually HIV-infected. The protocol
should describe these, as well as ensure that the re
search occurs in communities where confidentiality can
be maintained and where participants will have access
to, and can be referred to, ongoing psychosocial services,
including counselling, social support groups, and legal
support. Consideration should also be given to setting
up an ombudsperson who can intervene with outside
parties, if necessary and requested, on behalf of partici
pants, as well as to providing documentation to partici
pants that they can use to show that their "false positive"
is due to their participation in research.3
equity in choice of participants
equity in decisions regarding level of standard of
care and treatment and its duration, and
equity in plans for applying results and vaccine
distribution.
20
3 When a vaccine is tested, laboratory techniques should be available to
differentiate HIV-positivity due to vaccination from that due to actual HIV
infection.
29
UNAIDS guidance document
Ethical considerations in HIV preventive vaccine research
E
J^Vroposed HIV
t^vaccine research
I
protocols should
u
i
A person who has received a candidate vaccine
and is then exposed to HIV may have a greater
risk of developing established infection, or of
progressing more rapidly once infected, than if
the vaccine had not been administered. This
potential harm has not been observed in trials
thus far.
An HIV vaccine may require that several injec
tions be given over months or years, resulting in
pain, occasional skin reactions, and possibly other
biological adverse events, such as fever and
malaise.
Injuries may be sustained due to research-related
activities during the course of the trial.
The potential for adverse reactions to the candidate
vaccine, as well as possible injuries related to HIV vaccine
research, should be described, as far as possible, in the
research protocol and fully explained in the informed
consent process. Both the protocol and the consent
process should also describe the nature of medical treat
ment to be provided for injuries, as well as compensation
for harm incurred due to research-related activities,
including the process by which it is decided whether an
injury will be compensated. HIV infection acquired during
participation in an HIV preventive vaccine trial should not
be considered an injury subject to compensation unless it
is directly attributable to the vaccine itself, or to direct
contamination through research-related activities. In
addition to compensation for biological/medical injuries,
appropriate consideration should be given to compensa
tion for social or economic harms, e.g. job loss as a result
of testing positive following vaccine administration.
28
Guidance Point 6 :
Scientific and ethical review
HIV preventive vaccine trials
should only be carried out in
be reviewed by
countries and communities
scientific and ethical
review committees
that have the capacity to con
that are located in,
duct appropriate indepen
and include member
dent and competent scien
ship from, the country
tific and ethical review.
and community where
the research is pro
posed to take place.
This process ensures that the proposed research is
analysed from the scientific and ethical viewpoints
by individuals who are familiar with the conditions
prevailing in the potential research population.
Some countries do not currently have the capacity to
conduct independent, competent and meaningful
scientific and ethical review. If the country's capacity for
scientific and ethical review is inadequate, the sponsor
should be responsible for ensuring that adequate struc
tures are developed in the host country for scientific and
ethical review prior to the start of the research. Care
should be taken to minimize the potential for conflicts of
interest, while providing assistance in capacity-building
for scientific and ethical review. Capacity-building for
scientific and ethical review may also be developed in
collaboration with international agencies, organizations
within the host country, and other relevant parties.
21
MAIDS guidance document
fthical considerations in HIV preventive vaccine research
Guidance Point 7:
Vulnerable populations
^^ome countries or
^^communities,
Where relevant, the research
^Xoften described as
protocol
should describe the
"developing", have been
social
contexts
of a proposed
perceived as inappropri
research population (country
ate participants for some
or community) that create
phases of clinical re
conditions for possible exploi
search, due to a real or
tation or increased vulner
perceived increased level
ability among potential re
j
of vulnerability to exploi
I
search
participants, as well as
tation or harm. The
the steps that will be taken to
usefulness of the "develovercome these and protect
oping/developed"
the dignity, safety, and wel
terminology for assess
fare of the participants.
ing risk of harm and
exploitation, however,
is limited. It refers
primarily to economic considerations, which are not
the only relevant factors in HIV vaccine research. It
also establishes two fixed categories, whereas in
reality, countries and communities are distributed
along a spectrum, characterized by a variety of
different factors that affect risk. It is more useful to
identify the particular aspects of a social context
that create conditions for exploitation or increased
vulnerability for the pool of participants that has
been selected. These aspects should be described in the
protocol, as should the measures that will be taken to
overcome them. In some potential research populations
(countries or communities), conditions affecting potential
vulnerability or exploitation may be so severe that
ensuring adequate safeguards is not possible. In such
populations, HIV preventive vaccine research should not
be conducted.
22
F^articipation in
I^HIV preventive
I
Guidance Point 9:
Potential harms
vaccine research
I The nature, magnitude, and
probability of all potential
may involve physi
harms resulting from partici
ological, psychological
pation in an HIV preventive
and social risks. With
vaccine trial should be speci
regard to the physi
fied in the research protocol
ological risks, the
as fully as can be reasonably
purpose of an HIV
done, as well as the modali
preventive vaccine is
ties
by which to address
to induce an immuno
these, including provision for
logical response in the
the highest level of care to
human body to
participants who experience
counteract the HIV
adverse reactions to the vac
virus if it enters the
cine, compensation for injury
body, or to prevent it
related to the research, and
from entering at all.
referral to psychosocial and
Vaccines currently
legal support, as necessary.
being considered for
human trials are not
capable of causing
infection, i.e. they do not include replicating HIV.2
Several candidate HIV vaccines have been tested in
laboratories, and some have been tested in human
subjects. Not all of these candidate vaccines are the
same, and not all candidate vaccines carry the same
risks for harm. Thus far, however, significant adverse
biological effects have not been observed. Neverthe
less, some of the more likely physiological risks of
participating in vaccine research include the following:
2 Some of the most effective viral vaccines are based on live-attenuated
viruses and some investigators have proposed a similar approach for HIV
vaccines. Any decision regarding testing a live-attenuated HIV vaccine in
humans would have to be carefully assessed in view of the significant safety
concerns associated with such a vaccine approach.
27
Ethical considerations in HIV preventive vaccine research
UNAIDS guidance document
their residents will be adequately protected from
harm or exploitation, and that the vaccine devel
opment programme is necessary for and respon
sive to the health needs and priorities in their
country; and
Some factors to be considered are those listed in
Guidance Point 3 which influence the disparity in real or
perceived power as between sponsors and host countries,
as well as the factors listed below that can also increase
the nature and level of risk of harm to participants:
all other conditions for ethical justification as set
forth in this document are satisfied.
E"
In cases in which it is decided to carry out phase I or
phase II trials first in a country other than the sponsor
country, due consideration should be given to conduct
ing them simultaneously in the country of the sponsor,
where this is practical and ethical. Also, when the host
country or community is not familiar with conducting
biomedical research in human subjects, phase l/ll trials
that have been performed in the country of the sponsor
should ordinarily be repeated in the community in
which the phase III trials are to be conducted.
26
governmental, institutional or social stigmatiza
tion or discrimination on the basis of HIV status
inadequate ability to protect HIV-related human
rights, and to prevent HIV-related discrimination
and stigma, including those arising from partici
pation in an HIV vaccine trial
social and legal marginalization of groups from
which participants might be drawn, e.g. women,
injecting drug users, men having sex with men,
sex workers
El
limited availability, accessibility and sustainability
of health care and treatment options
L
limited ability of individuals or groups in the
community to understand the research process
E
limited ability of individuals to understand the
informed consent process
E
limited ability of individuals to be able to give
freely their informed consent in the light of
prevailing class, gender, and other social and legal
factors, and
F'
lack of meaningful national/iocal scientific and
ethical review.
23
UNAOS guidance document
Ethical considerations in HIV preventive vaccine research
! I
*
I !
I nitial stages in a
I vaccine developI ment programme entail
research in laboratories and
among animals. The
transition from this preclinical phase to a phase I
clinical trial, in which
testing involves the admin
istration of the candidate
vaccine to human subjects
to assess safety and immu
nogenicity, is a time when
risks may not be yet well
defined. Furthermore,
specific infrastructures are
often required in order to
ensure the safety and care
of the research participants
at these stages. For these
reasons, the first adminis
tration of a candidate HIV
vaccine in humans should
generally be conducted in
less vulnerable research
populations, usually in the
country of the sponsor.
Guidance Point 8 :
Clinical trial phases
As phases I, II, and III in the
clinical development of a pre
ventive vaccine all have their
own particular scientific re
quirements and specific ethi
cal challenges, the choice of
study populations for each
trial phase should be justified
in advance in scientific and
ethical terms in all cases, re
gardless of where the study
population is found. Gener
ally, early clinical phases of
HIV vaccine research should
be conducted in communities
that are less vulnerable to
harm or exploitation, usually
within the sponsor country.
However, countries may
choose, for valid scientific and
public health reasons, to con
duct any phase within their
populations, if they are able
to ensure sufficient scientific
infrastructure and sufficient
ethical safeguards.
could occur where an experimental HIV vaccine is
directed primarily towards a viral strain that does not
exist in the sponsor country but does exist in the poten
tial host country. Conducting phase l/ll trials in the
country where the strain exists may be the only way to
determine whether safety and immunogenicity are
acceptable in that particular population, prior to con
ducting a phase III trial. A country may also decide
that, due to the high level of HIV risk to its population
and the gravity of HIV/AIDS already in country, it is
willing to test a vaccine concept that is not being tested
in another country. Such a decision may result in
obvious benefits to the country in question if an effec
tive vaccine is found. It may also provide an important
capacity-building experience, if phase I or phase II trials
are conducted in a host country prior to a phase III trial
being initiated there.
Establishing a vaccine development programme that
entails the conduct of some, most, or all of its clinical trial
components in a country or community that is relatively
vulnerable to harm or exploitation is ethically justified if :
□
3
There may be situations,
however, where developing countries choose to con
duct phases l/ll and/or III (large-scale trials to assess
efficacy) among their populations that are relatively
vulnerable to risk and exploitation. For instance, this
24
the vaccine is anticipated to be effective against a
strain of HIV that is an important public health
problem in the country
the country and the community either have, or
with assistance can develop or be provided with,
adequate scientific and ethical capability and
administrative and health infrastructure for the
successful conduct of the proposed research
community members, policy makers, ethicists and
investigators in the country have determined that
25
■
i
lOFi' i
H
ns
■
M
R
■ Voluntary Counsel
- and Testing (VCT)
!
•
'
- • .........................
.rj.o-n-* <v HIV/A(D$
UNAIDS
lit IK |l . IKIDP . UNfPA • UNCXP
tl>M
WHO . W< >PII> RANK
n
p,
n
UNAIDS
Technical update
May 2000
..
UNAIDS Best Practice Collection
e
r?!
r*
At a Glance
Is
HSV voluntary counselling and testing (VCT) has been shown to
have a role in both HIV prevention and, for people with HIV
infection, as an entry point to care. VCT provides people with an
opportunity to learn and accept their HIV serostatus in a
confidential environment with counselling and referral for ongoing
emotional support and medical care. People who have been tested
seropositive can benefit from earlier appropriate medical care and
interventions to treat and/or prevent HIV-associated illnesses.
Pregnant women who are aware of their seropositive status can
prevent transmission to their infants. Knowledge of HIV serostatus
can also help people to make decisions to protect themselves and
their sexual partners from infection. A recent study has indicated
that VCT may be a relatively cost-effective intervention in
preventing HIV transmission.
There are several challenges related to the establishment and expansion
of VCT services:
Limited access to VCT. Many of the countries most severely
affected by HIV are also among the poorest countries. Establishing
VCT services is often not seen as a priority because of cost, lack of
laboratory and medical infrastructure and lack of trained staff. This
has resulted in VCT being unavailable to most people in highprevalence countries. It is important to document the benefits of VCT
in order to promote and expand access to it.
improving the effectiveness of VCT. Innovative ways can be
developed to reduce the costs of VCT by using cheaper and more
efficient HIV testing methods and strategies. Improving Information,
Education and Communication (IEC) to advocate the benefits of VCT
and raising community awareness may lessen the time required for
pre-test counselling. Integrating VCT into other health and social
services may also improve access and effectiveness and reduce cost.
Social financing of VCT services has also been shown to be cn
effective approach in some settings.
Overcoming barriers to testing. In some countries where VCT
services have been established there has also been a reluctance of
people to attend for testing. This may be because of denial and of
the stigma and discrimination that people who test seropositive may
face, and the lack of perceived benefits of testing. To overcome the
barriers to establishing VCT services it is important to demonstrate its
effectiveness and to challenge stigma and discrimination so that
people are no longer reluctant to be tested. The role of VCT as a
part of comprehensive health care, with links to and from other
essential health care services (such as tuberculosis services and
antenatal care), must be acknowledged. The structure of VCT
services should be flexible and reflect an understanding of the needs
of the communities they serve. Services should be easily accessible
and closely linked with community organizations that can provide
care and support resources beyond those offered by VCT services
alone.
Publicizing the benefits of VCT. Until recently, there was a
paucity of data indicating that VCT may be important in changing
sexual behaviour and a cost effective intervention in reducing HIV
transmission. However, there are now studies available showing that
VCT is a cost-effective intervention in preventing HIV transmission
and that VCT gives seropositive people earlier access to medical
care, preventive therapies and the opportunity to prevent mother-tochild transmission of HIV.
Understanding the needs of specific client groups. VCT services
should be developed to provide services for vulnerable or hard-toreach groups. Community participation and involvement of people
living with HIV is essential if these services are to be acceptable and
relevant.
Wtay 2000
The 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 typically
includes a short publication for
journalists and community leaders
(Point of View); a technical summary
of the 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, etc.) 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
available free from UNAIDS
Information Centres. To find the
closest one, visit the UNAIDS
website (http://www.unaids.org),
contact UNAIDS by email
(unaids@unaids.org) or telephone
(+41 22 791 4651), or write to the
UNAIDS Information Centre,
20 Avenue Appia, 1211 Geneva 'll,
Switzerland.
Voluntary Counselling and Testing
(VCT). UNAIDS Technical update.
English original, May 2000.
I. UNAIDS
II. Series
1. Voluntary workers
2. Counselling
3. AIDS serodiagnosis
UNAIDS, Geneva
UNAIDS Technical Update: Volunto
WC 503.6
La
il
■
■
H
What is VCT?
Voluntary HIV counselling and
testing (VCT) is the process by
which an individual undergoes
counselling enabling him or her to
make an informed choice about
being tested for HIV. This decision
must be entirely the choice of the
individual and he or she must be
assured that the process will be
confidential.
Strengthen quality assurance
and safeguards on potential
abuse before licensing
commercial HIV home collection
and home self-tests.
private discussion of sexual
matters and personal worries.
Counselling must be flexible and
focused on the individual client's
specific needs and situation.
Encourage community
involvement in sentinel
surveillance and
epidemiological surveys.
In some settings HIV counselling is
available without testing. This may
help promote changes in sexual
risk behaviour. In one rural area,
community-based counselling
significantly increased rates of
condom use among adults.3
Discourage mandatory testing.
Elements of VCT HIV counselling
UNASDS policy statement on
VCT’
VCT has a vital role to play within a
comprehensive range of measures
for HIV/AIDS prevention and
support, and should be
encouraged. The potential benefits
of testing and counselling for the
individual include improved health
status through good nutritional
advice and earlier access to care
and treatment/prevention for HIVrelated illness; emotional support;
better ability to cope with HIVrelated anxiety; awareness of safer
options for reproduction and infant
feeding; and motivation to initiate
or maintain safer sexual and drugrelated behaviours. Other benefits
include safer blood donation.
UNAIDS therefore encourages
countries to establish national
policies along the following lines:
*•
Make good-quality, voluntary
and confidential HIV testing
and counselling available and
accessible
Ensure informed consent and
confidentiality in clinical care,
research, the donation of
blood, blood products or
organs, and other situations
where an individual's identity
will be linked to his or her HIV
test results.
J
2
3
HIV counselling has been defined
as "a confidential dialogue
between a person and a care
provider aimed at enabling the
person to cope with stress and
make personal decisions related
to HIV/AIDS. The counselling
process includes an evaluation of
personal risk of HIV transmission
and facilitation of preventive
behaviour."2 The objectives of
HIV counselling are the
prevention of HIV transmission
and the emotional support of
those who wish to consider HIV
testing, both to help them make a
decision about whether or not to
be tested, and to provide support
and facilitated decision-making
following testing. With the
consent of the client, counselling
can be extended to spouses and/
or other sexual partners and other
supportive family members or
trusted friends where appropriate.
Counsellors may come from a
variety of backgrounds including
health care workers, social
workers, lay volunteers, people
living with HIV, members of the
community such as a teachers,
village elders, or religious
workers/leaders.
Voluntary testing
HIV testing may have far-reaching
implications and consequences for
the person being tested. Although
there are important benefits to
knowing one's HIV status, HIV is,
in many communities, a
stigmatizing condition, and this
can lead to negative outcomes for
some people following testing.
Stigma may actively prevent
people accessing care, gaining
support, and preventing onward
transmission. That is why UNAIDS
stipulates testing should be
voluntary, and VCT should take
place in collaboration with stigma
reducing activities.
Confidentiality
HIV counselling can be carried
out anywhere that provides an
environment that ensures
Many people are afraid to seek
HIV services because they fear
stigma and discrimination from
their families and community. VCT
services should therefore always
preserve individuals' needs for
confidentiality. Trust between the
counsellor and client enhances
adherence to care, and discussion
of HIV prevention. In
circumstances where people who
test seropositive may face
discrimination, violence and abuse
it is important that confidentiality
be guaranteed. In some
confidentiality and allows for
circumstances the person
UNAIDS. Policy statement on HIV testing and counselling. Geneva, UNAIDS, 1997 (see for full statement).
WHO. Counselling for HIV/AIDS: A key to caring. For policy makers, planners and implementers of counselling activities.
Geneva, World Health Organization/GPA, 1994.
Mugula F et al. A community-based counselling service as a potential outlet for condom distribution. Abstract WeD834,
9th International Conference of AIDS and STD in Africa. Kampala, Uganda, 1995.
X.-JA '
iU-.iilirk.I.L-■ i 11j
VCT): UNAIDS Technical Update
May 2000
■ ■■
El
requesting VCT will ask for a
partner, relative or friend to be
present. This shared
confidentiality is appropriate and
often very beneficial.
Figure 1: Pre-test and Post-test Counselling
> Development of community awareness <
Decision to attend for testing
The counselling process
I
Pre-test counselling:
The VCT process consists of pre
test, post-test and follow-up
counselling. HIV counselling can
be adapted to the needs of the
client/s and can be for individuals,
couples, families and children and
should be adapted to the needs
and capacities of the settings in
which it is to be delivered. The
content and approach may vary
considerably for men and women
and with various groups, such as
counselling for young people, men
who have sex with men (MSM),
injecting drug users (IDUs) or sex
workers. Content and approaches
may also reflect the context of the
intervention, e.g. counselling
associated with specific
interventions such as tuberculosis
preventive therapy (TBPT) and
interventions to prevent motherto-child transmission of HIV
(MTCT).
Establishing good rapport and
showing respect and
understanding will make problem
solving easier in difficult
circumstances. The manner in
which news of HIV serostatus is
given is very important in
facilitating adjustment to news of
HIV infection.
Counselling as part of VCT ideally
involves at least two sessions (pre
test counselling and post-test
counselling). More sessions can
be offered before or after the test,
or during the time the client is
waiting for test results.
Pre-test counselling
HIV counselling should be offered
before taking an HIV test. Ideally
the counsellor prepares the client
for the test by explaining what an
HIV test is, as well as by correcting
myths and misinformation about
The test process
The implications of testing
Risk assessment
Risk prevention
Coping strategies
*
Decision to test
No
H
Yes
Post-test counselling
h
HIV-Negative:
News given
Risk reduction reinforced
Discussion about
HIV-Positive:
News given
Emotional support
Discussion about sharing
disclosure of HIV status
Discussion about onward referral
HIV prevention
4
Follow-up counselling and support as required
HIV/AIDS. The counsellor may
also discuss the client's personal
risk profile, including discussions
of sexuality, relationships, possible
sex and/or drug-related behaviour
that increase risk of infection, and
HIV prevention methods. The
counsellor discusses the
implications of knowing one's
serostatus, and ways to cope with
that new information. Some of the
information about HIV and VCT
can be provided to groups. This
has been used to reduce costs and
can be backed up by providing
written material. It is important,
however, that everyone requesting
VCT has access to individual
counselling before being tested.
People who do not want pre-test
counselling should not be prevented
j Moy 2000
from taking a voluntary HIV test (for
example people who have had VCT
may request testing but not wish to
have further pre-test counselling).
However, informed consent from
the person being tested is usually
a minimum ethical requirement
before an HIV test.
Post-test counselling
Post-test counselling should always
be offered. The main goal of this
counselling session is to help
clients understand their test results
and initiate adaptation to their
seropositive or negative status.
When the test is seropositive, the
counsellor tells the client the result
clearly and sensitively, providing
emotional support and discussing
how he/she will cope. During this
UNAIDS Technical Update: Vofuhtory Counseinntf^d TesI
^2
23
session the counsellor must ensure
that the person has immediate
emotional support from a partner,
relative or friend. When the client
is ready, the counsellor may offer
information on referral services
that may help clients accept their
HIV status and adopt a positive
outlook. Sharing a seropositive
result with a partner or trusted
family member or friend is often
beneficial and some clients may
wish someone to be with them
and participate in the counselling.
Prevention of HIV transmission to
uninfected or untested sexual
partner/s must also be discussed.
Sharing one's HIV status with a
sexual partner is important to
enable the use of safer sex
practices, and should be
encouraged. However, it may not
always be possible, especially for
women who face abuse or
abandonment if known to be
seropositive.
Counselling is also important
when the test result is negative.
While the client is likely to feel
relief, the counsellor must
emphasize several points.
Counsellors need to discuss
changes in behaviour that can
help the client stay HIV-negative,
such as safer sex practices
including condom use and other
methods of risk reduction. The
counsellor must also motivate the
client to adopt and sustain new,
safer practices and provide •
encouragement for these
behaviour changes. This may
mean referring the client to
ongoing counselling, support
groups or specialized care services.
During the "window period"
(approximately 4-6 weeks
immediately after a person is
infected), antibodies to HIV are not
4
always detectable. Thus, a
negative result received during this
time may not mean the client is
definitely uninfected, and the client
should consider taking the test
again in 1 -3 months.
including medical care, ongoing
emotional support and social
support. People who test
seronegative can have counselling,
guidance and support to help
them remain negative.
Counselling, care, and support
after VCT
Entry point to medical care
Health care services may refer
people, particularly those with
symptomatic disease, to VCT, to
aid with further management.
Collaboration and cross-referral
can ensure that people with HIV
receive appropriate medical care,
including home care and
supportive and palliative care.
There are benefits of other health
care services, such as tuberculosis
ser/ices, working in close
collaboration with VCT services.
People attending VCT can be
screened for clinical TB and treated
appropriately, or offered TBPT if TB
screening is negative, and TB
services can refer people to VCT.
This may be particularly important
in countries where dual infection is
common, with up to 70% of
people with TB also having HIV
infection, and TB being a major
cause of morbidity and mortality in
people with HIV.7 Prevention or
early treatment of TB in people
with HIV can be a cheap and
effective intervention.
VCT services should offer the
opportunity for continued
counselling to people whether they
are seropositive or seronegative.
For seropositive people,
counselling should be available <as
an integral part of ongoing care
and support services. Counselling,
care, and support should also be
offered to people who may not be
infected, but whom HIV affects,
such as the family and friends of
those living with HIV.4
HIV testing
The diagnosis of HIV has
traditionally been made by
detecting antibodies against HIV.
There has been a rapid evolution
in diagnostic technology since the
first HIV antibody tests became
commercially available in 1985.
Today a wide range of different
HIV antibody tests are available,
including ELISA tests based on
different principles, and many
newer simple and rapid HIV tests.5
Most tests detect antibodies to HIV
in serum or plasma, but tests are
also available that use whole
blood, dried bloodspots, saliva and
urine.6
VCT as an entry point to pre
vention and care
VCT is an important entry-point to
both HIV prevention and HIVrelated care. People who test
seropositive can have early access
to a wide range of services
Entry point for preventing
mother-to-child transmission
of HIV infection (PMTCT)
interventions
Increasing numbers of countries
are now offering interventions to
PMTCT. VCT is offered within the
antenatal setting or close links
are formed with VCT services. It
is important that women
receiving VCT in this setting have
adequate time to discuss their
5
WHO. Source Book for HIV/AIDS Counselling Training. Geneva, WHO/GPA, 1994.
WHO. The importance of simple and rapid tests in HIV diagnostics: WHO recommendations, Weekly Epidemiological Record
73 (42):321-328, October 1998.
6
7
UNAIDS. HIV testing methods: UNAIDS Technical Update. Geneva, UNAIDS, November 1997.
Elliott A et al. The impact of HIV on tuberculosis in Zambia: a cross sectional study. British Medical Journal, 1990, 301: 412-415.
ig andJetting (VCT): UNAIDS Technical Update
May 2000
■
■
fl
L2
own needs and not just those
counselling about prevention
spiritual services, traditional
concerned with PMTCT, and that
of HIV infection during
pregnancy and breast-feeding
medical practitioners and support
groups for people living with HIV.
counselling on the
Entry point for social support
advantages and
disadvantages of disclosure,
One of the benefits of VCT is that
particularly to her partner
it can help people with HIV to
there are links with services
which can provide ongoing
support and care for women with
HIV.
When counselling women in the
antenatal setting for PMTCT
make plans for their future and
involving the partner in
interventions, special
counselling and decision
the future of their dependants.
consideration should be given to:
making
HIV counsellors should be
knowledgeable about legal and
counselling about infant
Entry point for ongoing
feeding options
emotional and spiritual care
counselling about all
available PMTCT options
family planning counselling
for seropositive women,
referral for ongoing medical
and emotional support
for negative women,
social services available to help
Although the immediate
emotional needs of people
following VCT may be met by the
counselling service some people
will require longer-term support
and care. Counsellors will need
to be aware of all services
people with these decisions.
Material and financial support is
sometimes requested, and
counsellors need to bo aware of
any available services, although
these are often limited in
developing countries.
available for people following
testing. These may include
Figure 2: VCT as an entry point for prevention and care
Acceptance of and coping
with serostatus
Planning for the future
(care of orphans,dependants &
family, making will etc.)
Promotes and
facilitates behaviour change
(sexual, safe injecting)
Prevention
of mother-to child
transmission
Normalization &
destigmatization of
HIV/AIDS
Peer, social, and
community support, including
people living with HIV support
groups
(
STI prevention,
screening and treatment
Access to
family planning
Early management
of opportunistic
infections
Access to condoms
(male and female)
ARV - antiretroviral
Ol - opportunistic infections
Provision of
maternity services
for people living with HIV
Access to early medical care
including ARVs, preventive therapy
for TB, and other Ols
STI - sexually transmitted infections
i
UNAIDS Technical Update:
rare :
_____
____ ___
The Challenges
Limited access to VCT
VCT has not been seen as a
priority in HIV care and
prevention programmes in many
developing countries and has
therefore often not been widely
available. Reasons for this
include:
complexity of the intervention
the relatively high costs of its
various components
the lack of evidence of its
effectiveness in reducing HIV
transmission .
the lack of evidence of its cost
effectiveness as measured by
number of cases of HIV
averted
It is sometimes difficult to
measure the impact of
counselling on behaviour change.
It is understandable that VCT will
often not have an easily
measurable effect, because of the
complexity of sexual behaviour
and relationships, and factors
which affect these, such as gender
inequalities, and lack of
empowerment of women in many
high-prevalence settings. In
countries where resources are
very limited VCT services may,
therefore, not obtain priority in
government planning, and
counselling may not receive the
official approval, resources, and
support it needs to be
implemented effectively.
Decision-makers may also
question the benefit of providing
counselling and testing services in
places where clinical care options
are limited.
Improving effectiveness of VCT
Even where VCT is considered
important, its widespread
implementation is often limited by
lack of funding, infrastructure,
trained and designated staff, clear
policies on staffing and service
sustainability. Counsellors often
have other roles within a health
care system - such as nursing or
social work - which reduce the
time available for counselling as a
part of HIV testing. Without
adequate staffing levels and
policies guaranteeing counselling
as a priority, pre-test and post-test
counselling are often not
delivered at all, or are done so
hurriedly that clients are riot given
the time and attention they need.
contributing factors that must be
addressed if VCT is io have an
important role in HIV prevention
and care:
Stigma HIV is highly stigmatized
in many countries and people
with HIV may experience social
rejection and discrimination.8 In
low-prevalence countries, or
places where HIV is seen as a
problem of marginalized groups,
rejection by families or
communities may be a common
reaction. This fear of rejection or
stigma is a common reason for
declining testing.
Inadequate preparation of the
settings in which VCT services are
offered may also be a problem.
This may result in insufficient
privacy during counselling
sessions, inconvenient opening
times or difficult physical access.
Clients may feel intimidated by
reception staff or have fears
. regarding the confidentiality of
their test results.
Gender inequalities The need
for protection and support of
vulnerable women who test
seropositive must be considered
when developing VCT services. In
Zambia, women said that it was
thought to be shameful to have
HIV and if they were known to be
seropositive, they worried that
they would suffer discrimination.
Studies from Kenya have also
shown that women may be
particularly vulnerable following
VCT and in some cases have lost
their homes and children or have
been beaten or abused by their
husbands/partners if their status
became known.9
Burnout - emotional exhaustion
that results when a counsellor has
reached his or her limit to deal
with HIV and its related emotional
stress may result in rapid
turnover of counsellors. This is
especially true in high-prevalence
areas, where the "breaking of
bad news" may occur several
times a day. Effective VCT services
must find ways to ensure ongoing
support and supervision of
counsellors and help them to
cope with burnout and remain
motivated.
Discrimination In some
countries people with HIV are
subject to discrimination at work
or in education. Unless
legislation is in place to prevent
this some people will be reluctant
to undergo VCT.
Overcoming barriers to VCT
Publicizing benefits of VCT
Although VCT is becoming
increasingly available in
developing and middle-income
countries, there is still great
Even in areas where VCT services
are available, uptake of services is
often poor. A common barrier to
VCT is the lack of perceived
benefit.10 If VCT is linked with
medical care, and effort is made
roluctanco for many pooplo to bo
tested. There are several possible
8
Karim Q., Karim S., Soldan K., Zondi M. (1995) Reducing the stigma of HIV infection among South African sex workers:
socioeconomic and gender barriers. American Journal of Public Health 85 (1 1): 1521-5
9 Temmerman M et al. The right not to know HIV-test results. Lancet, 1994, 345:696-697.
10 Baggaley R, et al. Barriers to HIV counselling and testing (VCT) in Chawama, 1995, Lusaka, Zambia, 9th International
Conference on AIDS and STDs in Africa, December 1995.
7
Voluntary Counselling and Testing (VCT); UNAIDS Technicol Update
May 2000
Rri
R ■
.‘OOM Bi
WWwW
-'■kTSy-?
Responses
Expanding access to VCT
to improve medical services for
people with HIV, this will help to
reduce this barrier to testing.
Offering interventions to prevent
MTCT can also be recognized as
a major benefit of VCT.
For VCT services to be promoted
and developed it is important to
document their usefulness in:
Understanding the needs of
specific client groups
Improving access to medical
and social care
The HIV epidemic does not affect
all sectors of society equally, or in
the same way within countries or
cities. Some groups are
particularly vulnerable to HIV for
a variety of reasons including
age, profession or specific risk
behaviours. For example in the
former Soviet Union HIV is
largely a problem among IDUs
and the HIV prevalence in the
general population is low. It may
therefore be appropriate to
provide specific resources for VCT
for IDUs rather than provide a
comprehensive service for the
general population. VCT services
which are acceptable to one
group - for example, to men who
purchase the services of
commercial sex workers - may
not be acceptable for other
groups, such as the sex workers
themselves. Rapid assessment
techniques for analysing
potential client needs in a given
area may exist, and are relatively
inexpensive and simple to carry
out. However, there may not be
adequate and locally available
management expertise for
creating effective services in
response to the findings of an
assessment.
Reducing HIV transmission
Facilitating MTCT interventions
Improving coping for people
with HIV
Several studies have demonstrated
that VCT can prevent HIV
transmission among serodiscordant
couples. There have also been
some studies showing significant
behaviour change in individuals
following VCT. A recent multi-site
study conducted in Kenya, United
Republic of Tanzania and Trinidad
has provided data on the role of
VCT in HIV prevention and its cost
effectiveness compared with other
HIV prevention interventions." This
study demonstrated that VCT
significantly reduced sexual risk
behaviour - specifically,
unprotected sex with non-primary
partners, with commercial sex
workers, and among couples who
have been tested and counselled
together. Furthermore VCT did not
increase the occurrence of negative
effects such as stigmatization or
disintegration of relationships. The
study also showed that VCT could
be cost-effective, in terms of the cost
per HIV infection averted. The cost
per client for VCT was $29 in the
United Republic of Tanzania and
$27 in Kenya, and was more costeffective when targeted to HIV
positive persons, couples, and
women.
There are several examples where
VCT has been shown to help
people access appropriate medical
and social services.'2
In industrialized countries VCT
enables people to access
antiretrovirals (ARVs) earlier and
therefore decrease HIV-associated
morbidity. In developing countries
PLHA can have access to TBPT and
targeted health care.
If pregnant women are to have
access to interventions to prevent
MTCT it is important that they know
and understand their HIV status.
VCT associated with MTCT
interventions has been shown to be
acceptable in some settings.13
However, barriers to VCT services in
antenatal clinics exist where
associated ongoing care and
support are not available for
pregnant women.
Reducing the costs of VCT
The cost of HIV testing has been
reduced significantly over the past
decade, as cheaper testing
methods arc manufactured.
Simple/rapid testing enables testing
to be carried out without laboratory
facilities and equipment or highly
trained personnel. These factors
could enable HIV testing to be
made more widely available and
can be suitable for rural areas and
sites outside capital cities
Innovative approaches can be
devised to help make the
counselling component of VCT less
labour-intensive. Group education
prior to pre-test counselling can
shorten the length of time required
for one-to-one counselling, and
hence reduce costs. Sometimes
counselling can be carried out by
trained volunteers or lay people
and this may also reduce costs.
However, if volunteers or lay
counsellors are employed adequate
training, supervision and support
must be ensured, otherwise
counsellors may leave and burnout
11 Sweat ML et al. Cost-effectiveness of voluntary HIV-1 counselling and testing in' reducing sexupl transmission of HIV in
Nairobi, Kenya and Dar Es Salaam, Tanzania: the voluntary HIV-1 counselling and testing efficacy study. Lancet, 2000, July.
12 WHO. TASO Uganda, the inside story: Participatory evaluation of HIV/AIDS counselling, medical and social services,
1993-1994. Geneva, WHO/Global Programme on AIDS, 1995.
Same day HIV voluntary counselling and testing improves overall acceptability among prenatal women in
Zambia, 1998. Abstract no. 33283, XII international Conference on HIV/AIDS, Geneva, Switzerland.
13 Bhat G et al.
8
RB■
May 2000
UNAIDS Technical Update: Voluntary Counselling and Testing (VCT)
tel
HI
,
. a®
_________
;
t
will be common.
Integrating VCT services into other
existing health and social services
may also help to reduce costs and
make services available to a wider
range of people.
Cost sharing has been used in
some countries to help provide a
more sustainable service. In
Uganda, where the AIDS
information centre provides VCT,
clients are expected to pay a
share of the costs. One day a
week is set aside for free testing,
to enable people who are unable
to pay to still have access to VCT.
When this was introduced it did
not lead to a decline in testing.
Social marketing of VCT has also
been proposed as a way of
increasing access to sustainable
VCT services and has been
successfully implemented in
Zimbabwe.
Challenging stigma and
improving education
and awareness
In countries where stigma and
discrimination have been
challenged with political and
financial commitment, VCT has
been an important component
of the process. However, in
about seeking VCT. Mandatory
testing should also be
discouraged.
many communities HIV remains
a stigmatizing problem and VCT
is not recognized as being an
important part of HIV prevention
and care. Societal attitude
towards HIV can have a strong
impact on individual choices,
and if people known to have HIV
face discrimination and stigma,
VCT is unlikely to be a popular
intervention. Stigma and
discrimination must be
challenged by government and
in communities.
Although there are public health
benefits of partner notification,
making this a compulsory
component of VCT has not been
shown to be helpful, and may
lead to discrimination of the
infected partner.
Greater involvement of people
living with HIV/AIDS in
developing and promoting VCT
and providing education and
awareness about its benefits can
be important in providing a
more relevant service.
Legislation to protect the rights
of people living with HIV in
employment and education and
to prevent discrimination, need
to be in place if people are to
feel comfortable and secure
Promotion of the benefits of
VCT
The benefits of VCT are often
not widely known and
understood. Promotion of the
advantages of VCT should be an
integral part of HIV education
programmes and included in I EC
materials.
VCT without associated support
and care services has been
shown to be unpopular in many
settings. An explicit policy of
care and support for people
following VCT should be
developed in conjunction with
VCT.
If VCT services are to be effective, some important considerations include:
The location and opening hours of the service should reflect the needs of the particular community.
VCT has been carried out in STI clinics, hospital outpatient departments and hospital wards, but
also in centres specially dedicated to HIV counselling.14 VCT services for sex workers, as well as
condom supplies, are sometimes offered in the vicinity of nightclubs, and operate at night.15
Counselling sessions need to be monitored to ensure that they are of high quality and that
informed consent is always sought and counselling offered before a client takes an HIV test.
Counselling should be integrated into other services, including STI, antenatal and family planning
clinics. Community-based counselling services should be initiated and expanded.
A referral system should be developed in consultation with NGOs, community-based organizations,
hospital directors and other service managers, as well as with networks of people living with HIV
and AIDS. Regul
Regular meetings among service providers should be held to review and improve the
referral system.
Counsellors need adequate training and ongoing support and supervision to ensure that they give
good-quality counselling and can cope with their stresses and avoid burnout. Development of
tools for monitoring the quality and content of counselling and counsellor needs would be useful.
....
■
__
__
14 Sittitrai W and Williams G. Candles of Hope: The AIDS Programme of the Thai Red Cross Society, London, TALC (Strategies for Hope
No. 9), 1994.
15 Laga M., et al. Condom promotion, sexually transmitted disease treatment and declining incidence of HIV-1 infection in
female Zairian sex workers Lancet, 1994, 344(891 7):246-8.
9
Voluntary Counselling and Testing (VCT): UNAIDS Technical Update
May 2000
1
If VCT services are to be effective, some important considerations include: (con't.)
Innovative ways of scaling up VCT services and making them more accessible and available should
be explored. Interventions to prevent MTCT have provided an important impetus to make VCT more
widely available for women and their partners. Pre-test group information can reduce the costs and
staff needed for VCT, but individual or couple counselling should also be available.
New testing methods such as simple/rapid testing will make VCT more available, especially in rural
areas and where laboratory facilities do not exist. Quality control, basic training and supply systems
need to be organized to ensure that these services are delivered safely and appropriately.
Home testing and self-testing are likely to be more commonly used. This will provide greater access
to VCT for people who are reluctant to attend formal VCT services. However, it is important that
adequate information about and provision of follow-up support services are available.
T
Linkages to crisis support, follow-up counselling and care for those testing seropositive, and
strategies to enable people who test seronegative to stay negative, should be developed.
I
Development of VCT for
specific groups
When VCT services are being
developed consideration should
be given to the different needs of
the people attending and the
communities for which the VCT
services are designed.
VCT for prevention of motherto-child transmission
Counselling and testing can
benefit women who are or who
want to become pregnant.
Ideally, women should have
access to VCT before they
become pregnant so that they
can make informed decisions
about pregnancy and family
planning. For women who test
seropositive, counselling can
help them decide whether or not
to have children; and help
explore family planning options.
For women who are already
pregnant and who test
seropositive, counsellors can
help them make decisions about
terminating their pregnancy if
abortion is a safe, legal and
acceptable option. For women
who choose to continue with
their pregnancy, counsellors can
discuss the use of interventions,
such as short-course zidovudine
(ZDV, also known as AZT), to
reduce the risk of transmitting
HIV to the unborn child, if this is
available. Infant feeding choices
can also be discussed.'6 Where
possible, and when the woman
agrees, partners should be
involved in counselling sessions
in which decisions about their
present and future children are
being discussed and made.
Counselling services for women
should not be confined to those
associated with MTCT
interventions. Services should
reflect the multiple roles and
responsibilities of women and
embrace a comprehensive
approach to meet the health
needs of seropositive women.
VCT for couples
shown to be a successful
approach in some countries.17 '8
During pre-test counselling
couples can discuss what they
propose to do depending on their
test results and thus help prepare
the couple for their results. Post
test counselling helps the couple
understand their HIV test results.
If a couple has serodiscordant
test results this can pose difficult
challenges in the relationship.
Counselling can help the couple
overcome feelings of anger or
resentment (which in some cases
can lead to violence, particularly
against women). Counselling is
important to help couples accept
safer sex practices to prevent
transmission to the uninfected
partner.
Couple counselling for HIV can
also be provided as part of pre
marital counselling, and can
continue after the testing is
completed.
VCT for children
Counselling and testing can be
provided to couples who wish to
attend sessions together before
and after testing. This has been
In many countries, HIV
increasingly affects children.
Children may themselves be
16 UNAIDS. Mother-to-child transmission of HIV/AIDS: UNAIDS Technical Update. Geneva, UNAIDS, October 1998.
17 Allen S et al. Confidential HIV testing and condom promotion in Africa. JAMA, 1992, 8:3338-3343.
18 Allen S, Serufilira A, Gruber V Pregnancy and contraceptive use among urban Rwandan women after HIV counselling and
testing. American Journal of Public Health, 1993, 83:705-10.
10
May 2000
HEI
UNAIDS Technical Update; Voluntary Counsellititj and Testing (VCT)
H
infected, or they may be part of a
family in which one or both of
the parents are either infected or
have died of AIDS.
When children have clinical signs
suggestive of possible HIV
infection, VCT can provide a
confirmatory diagnosis. The
counselling sessions may include
both the parents and the child.
HIV-positive children have special
counselling needs such as
understanding and coping with
their own illness, dealing with
discrimination by other children
or adults, and coping with the
illness and deaths of other HIVinfected family members. HIV
negative children who are
affected by HIV through the
illness of a parent or sibling also
have special counselling needs,
such as coping with the
emotional trauma of seeing their
loved ones ill or dying and
dealing with social stigma related
to HIV. Older children may need
counselling related to
developmental issues (such as
sexuality and the avoidance of
risk behaviours) or coping with
and healing from childhood
sexual abuse that has put them
at risk for HIV infection. In all
cases, counselling provided to
children should use ageappropriate educational and
counselling methods.
VCT for young people
Teenagers are often particularly
vulnerable to HIV infection. For
VCT services to be effective for
young people they must take into
account the emotional and social
contexts of young people's lives,
such as the strong influence of
peer pressure (e g. to take drugs
or alcohol) and development of
sexual and social identities. They
must also be "user-friendly",
offered in non-threatening, safe,
easily accessible environments.
Counselling should be ageappropriate, using examples of
situations that are familiar and
relevant to youth, and language
that is non-technical and easily
understood.
Anonymous VCT services may be
preferable for some young
people. However, different
countries and cultures may have
their own legal requirements and
social expectations that prevent
young people from accessing
VCT services without parental
consent or notification. Although
VCT services must always take
into account any relevant laws
regarding the rights and
autonomy of minors and the
responsibilities of parents for
their children, they must also
remember that the dignity and
confidentiality of the young
persons must be protected and
respected.
VCT for injecting drug users
Services targeting injecting drug
users (IDUs) must take into
account several factors. Injecting
drug use is a practice that is
illegal and socially stigmatized in
many cultures. Because many
drug users have experienced
social stigma and unpleasant
encounters with the law, they
may distrust or fear government
based or hospital-based social
services. VCT services that are
part of such institutions may,
therefore, be unlikely to attract
drug-using clients. Examples of
more successful VCT programmes
for drug users are those
coordinated with existing HIV
prevention and social service
outreach programmes that go to
the places that drug users
frequent. Often, the outreach
workers are former drug users
themselves, so they can
understand the drug culture's
particular social norms and
values. Also, because they have
already established trust with the
drug using community,
counselling and prevention
messages delivered by such
outreach workers are often
perceived as being more
credible. Such outreach workers,
when trained as HIV counsellors,
can explain HIV testing and the
importance of knowing one's
status in terms with which the
drug users are familiar and which
they can accept.
While HIV counsellors should
discuss risk reduction with their
clients at both pre- and post-test,
they should also understand that
IDUs may not be willing or able
to change certain behaviours,
such as their drug use or having
unprotected sex. In these cases,
HIV counsellors should discuss
safer methods of practising these
behaviours - such as not sharing
needles or sterilizing needles and
syringes before sharing - in order
to-prevent the clients from
becoming infected or spreading
their HIV infection to others.
Counselling for sex workers
VCT for commercial sex workers
need to be sensitive to the
problems of stigma and illegality
associated with commercial sex
in many societies. Sex work is
usually the client's livelihood and
thus stopping some or all risk
behaviours may reduce the sex
worker's ability to earn a living.
Furthermore, sex workers may be
under considerable pressure to
perform especially risky activities
(e.g. sex without a condom),
either through financial
inducement or coercion by a
pimp or client. Counsellors must
understand these issues, and
help the sex worker find ways to
work around or reduce the
obstacles they face when trying
to reduce their risk. In some
cases, counsellors may want to
work closely with community
organizations that empower and
support sex workers' desire to
keep themselves healthy and
safe.
)
11
Voluntary Counselling and Testing (VCT); UNAIDS Technical Update
May 2000
n
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jWWW, Wfe®
.IS®
Selected Key Materials
Baggaley R et al. HIV counselling
and testing in Zambia: The Kara
Counselling experience. SAFAIDS,
1998 6 (2):2-9.
UNAIDS. Know/ege is power,
UNAIDS, Best Practice Collection.
Case Study. Geneva, UNAIDS,
June 1999.
Kamenga MC et al. The voluntary
HIV-1 counselling and testing
efficacy study: Design and
methods. AIDS and Behaviour,
UNAIDS. Mother-to-child
transmission of HIV UNAIDS, Best
Practice Collection. Technical
Update. Geneva, UNAIDS,
October 1998.
2000, 4(1): 5-14.
Mugula F et al. A community
based counselling service as a
potential outlet for condom
distribution. Abstract WeD834,
9th International Conference on
AIDS and STD in Africa, Kampala,
Uganda, 1995.
Sittitrai W and Williams G.
Candles of Hope: The AIDS
Programme of the Thai Red Cross
Society, London, TALC (Strategies
for Hope No. 9), 1994.
Sweat ML et al. Cost-effectiveness
of voluntary HIV-1 counselling and
testing in reducing sexual
transmission of HIV in Nairobi,
Kenya and Dar Es Salaam,
Tanzania: the voluntary HIV-1
counselling and testing efficacy
study. Lancet, 2000, July.
UNAIDS. Caring for Carers,
managing stress in those who care
for people with HIV and AIDS.
UNAIDS, Best Practice Collection.
Case Study. Geneva, UNAIDS,
May 2000.
UNAIDS. UNAIDS policy on HIV
testing and counselling. Geneva,
UNAIDS, 1997. UNAIDS/97.2.
Statement encouraging increased
access to voluntary HIV testing
and counselling services that
feature informed consent and
confidentiality, quality assurance,
and safeguards against potential
abuse.
UNAIDS. Tools for evaluating HIV
voluntary counselling and testing.
UNAIDS, Best Practice Collection.
Key Material. Geneva, UNAIDS,
May 2000.
WHO. Counselling for HIV/AIDS:
A key to caring. Geneva, World
Health Organization, Global
Programme on AIDS, 1995.
WHO/GPA/TCO/HCS/95.15.
Explores programmatic and
policy issues with regard to
planning and setting up
counselling services. Describes
counselling in the context of an
overall response to the epidemic,
and ways counselling is
organized.
WHO. Revised recommendations
for the selection and use of HIV
antibody tests. Weekly
Epidemiological Record (1997)
72:81-83.
WHO. Source book for HIV/AIDS
counselling training. Geneva,
World Health Organization,
Global Programme on AIDS,
1994. WHO/GPA/TCO/HCS/
94.9. Intended for use in training
counsellors. Deals with initial
training and refresher courses for
those needing to act as
counsellors in the course of their
professional duties (e.g. health
care providers) and for those
specialized in counselling.
WHO. The importance of simple/
rapid assays in HIV testing.
Weekly Epidemiological Record
(1998) 73:321-327.
© 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 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 do 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.
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