MISSING THE TARGET A report on HIV/AIDS treatment access from the frontlines
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MISSING THE TARGET
A report on HIV/AIDS treatment access
from the frontlines - extracted text
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MISSING THE TARGET
A report on HIV/AIDS treatment access
from the frontlines
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International Treatment Preparedness Coalition (ITPC)
28 November 2005
1
The International Treatment Preparedness Coalition (ITPC)
was bom at the International Treatment Preparedness Summit that took place in
Cape Town, South Africa in March 2003. That meeting brought together for the first
time community-based treatment activists and educators from over 60 countries.
Since the Summit, ITPC has grown to include over 600 activists from around the
world and has emerged as a leading civil society coalition on
treatment preparedness and access issues.
See appendix at the end of this report for more information.
Table of Contents
Report research team
i *
Executive summary
1
Introduction and overarching recommendations
5
Principles and follow-through plan
12
Country reports
15
Dominican Republic
16
India
25’
Kenya
39
Nigeria
49
Russia
61
South Africa
73
Appendix: Fact sheet on ITPC
90
Report Research Team
DOMINICAN REPUBLIC
Eugene Schiff, Agua Buena Human Rights Association
Paloma Pina, MD
Michelle Galeas, MD
INDIA
K. K. Abraham, President of Indian Network for People living with HIV/AIDS (INP+)
Dr. Venkatesan Chakrapani, INP+
Daisy David, INP +
Aasha Elango, INP +
Murali Shunmugam, Social Welfare Association for Men (SWAM)
Dr. Joe Thomas, FXB International
With assistance from:
National AIDS Control Organization (NACO)
Dr. SY Quraishi, director general, NACO
Dr. Indrani Dasgupta, office of the WHO Representative to India
FXB International
State and district level networks of INP+
Social Welfare Association for Men (SWAM)
KENYA
James Kamau, Kenya Treatment Access Movement (KETAM)
Dr. Bactrin Killingo, Meru Hospice and KETAM
Elizabeth Owiti, Healthpartners, Kenya
NIGERIA
Olayide Akanni, Journalists Against AIDS Nigeria
Bede Eziefule, Centre for the Right to Health
Tobias Luppe, Medecins Sans Frontieres
RUSSIA
Shona Schonning, Community of People Living with HIV/AIDS
With Assistance from:
Irina Diabaldt, Community of People Living with HIV/AIDS
Daniel Novichkov, Community of People Living with HIV/AIDS*
Dmitry Samiolov, Community of People Living with HIV/AIDS
Timur Islamov, Doverie (Trust)
Ilya Kondtatiav, Positive Initiative
Slava Tsunik, Kovchek Antispid
SOUTH AFRICA
Fatima Hassan, AIDS Law Project
i
EDITING ASSISTANCE
Jeff Hoover
MEDIA COORDINATION
Kay Marshall
DESIGN
Lei Chou
PROJECT COORDINATION
Chris Collins
Gregg Gonsalves
Maureen Baehr
The report team would like to thank everyone who agreed to be interviewed
and all individuals and organizations that supported us in this work.
In particular, we would like to thank Regina Aragon, Brook K. Baker, Emily Bass,
David Gold, Mark Harrington, Philippa Lawson, Dan Lowenstein, Sharonann Lynch,
Ron Macinnis, Asia Russell, Scott Sanders, Bill Snow, Todd Summers, Kate Thomson,
Peter van Rooijen, Mitchell Warren, and Victor Zonana.
We would also like to thank the AIDS Vaccine Advocacy Coalition (AVAC),
Global Health Strategies, Health GAP, and Treatment Action Group (TAG)
for their support and assistance.
This report is made possible by a grant from AIDS Fonds, Netherlands,
anonymous donors, and the volunteer time of many.
CONTACT INFORMATION
Dominican Republic
Eugene Schiff Eugene.schiff@gmail.com
India
K. K. Abraham inpplus@eth.net or inpplus@vsnl.com
Joe Thomas ioe thomasl 23@yahoo.com.au
Kenya
Elizabeth Owiti Iizawiti2002@yahoo.com
Nigeria
Olayide Akanni olayide@nigeria-aids.org
Russia
Shona Schonning s schonning@positivenet.ru
South Africa
Fatima Hassan hassanf@law.wits.ac.za
Project coordination
Chris Collins ChrisCSF@aol.com
Gregg Gonsalves greqggonsalves@earthlink.net
SG-ITPC@yahoogroups.com
ii
Executive Summary
The campaign for global AIDS treatment delivery has reached a defining moment.
The first years of programme scale up demonstrated that AIDS treatment can be
delivered effectively, even in the poorest settings. But "3 by 5", an initiative by the
World Health Organization (WHO) to treat three million people by the end of 2005,
is coming to an end and it has fallen at least one million men, women and children
short of the target. This leaves at least four million people who urgently need anti
retroviral drugs today in order to have any hope of survival. Although progress has
been made over the past few years, we cannot call this success.
G8 leaders have pledged a new goal of coming as close as possible to universal
AIDS treatment access by 2010. This will be a hollow promise unless governments
and international agencies learn the lessons of the early years of treatment delivery
and dedicate increased resources, capably address barriers, collaborate more
effectively, and hold themselves accountable for steady, measurable progress.
The 3 by 5 initiative failed to treat even 50% of people in need of antiretroviral
treatment (ART). If the organisations responsible for carrying out this programme
are to accomplish an even greater goal in five years' time, it will take courageous
new leadership from all parties to confront the monumental task ahead. The status
quo will not get us there.
Will the international community rise to this challenge? The fate of millions of
people around the world hangs in the answer to that question.
The International Treatment Preparedness Coalition (ITPC) is a global alliance of
over 600 treatment activists that includes people living with HIV/AIDS (PLWHA) and
their advocates. The ITPC AIDS Treatment Report is the first systematic assessment
of treatment scale up based on the research of people living in communities in six
countries where the epidemic has hit the hardest—the Dominican Republic, India,
Kenya, Nigeria, Russia and South Africa. The report is based on their experiences
and first-hand knowledge of the situation on the ground. Each country used a case
study methodology, which emphasizes interviews with carefully selected key informants.
Clearly, much more work needs to be done to understand the complexity of this
challenge. But what we found tells an important story—of individuals exhibiting
dedication and courage while caught in desperate situations; and of institutions
often struggling to transition, be efficient, and throw off bureaucratic obstacles that
stand in the way.
The ITPC AIDS Treatment Report is a prescription for the future. As ART has started
to roll out in these six countries, the ITPC research teams have identified barriers
that could imperil efforts to make treatment more widely available. The teams have
also made concrete recommendations for governments and international institutions.
1
These recommendations must be taken up with urgency if the goal of universal
access by 2010 is to be achieved.
Major roadblocks to success include the following:
H inadequate leadership at the national level that fails to dedicate sufficient
resources or mobilize governments;
■ a global system that does not collaborate speedily and efficiently to
address bottlenecks; T
B inadequate and uncertain funding levels for programs and financing
mechanisms such as the Global Fund to Fight AIDS, TB and Malaria
(GFATM)—a situation that keeps countries guessing about the sustainability
of services and the meaning of pledges like "universal access";
9 bureaucratic delays that prevent urgently needed resources from reaching
treatment programs;
9 procurement and logistics challenges that demand more comprehensive
and effective technical assistance; and
9 pervasive stigma against people living with HIV/AIDS that Requires moral
leadership from national and global communities.
In every country surveyed there were concerns about inadequate leadership at the
national level and the subsequent failure to dedicate sufficient resources or mobilize
governments. We heard about the necessity for a well-functioning national AIDS
programme that can provide this leadership, implement a comprehensive national
AIDS plan, and compel international and domestic organizations to abide by that
plan. Sadly, the state of national AIDS programmes in these six countries did not
make the grade. Scale up of treatment will not happen unless countries fulfill their
responsibilities to those living within their borders—and national governments must
be the primary engine for increasing access to care.
In addition, in just about every country we saw a failure to link TB and HIV
programming effectively, missing opportunities to diagnose and treat these
interconnected diseases and establish coordinated systems of health care.
We also found that each country has a different constellation of challenges and
potential solutions.
9
In the Dominican Republic bureaucratic delays and power struggles
between agencies delayed implementation of a Global Fund grant for
months. Many of those initial problems have now been overcome, but
2
delivery of ARVs is still hampered by lack of political leadership; stigma
and discrimination; supply problems with ARVs, treatments for opportunistic
infections, and CD4 tests; and continued lack of coordination between
programs.
■ In India treatment remains unavailable for the vast majority of the millions
of people living with HIV Although the government has signaled increasing
commitment to ART delivery, the national AIDS program has failed to act
on several critical issues and national treatment guidelines are under
enforced and have several significant gaps. Many people seeking care are
forced to travel long distances, and shortfalls in funding and human
resources threaten efforts to expand the response.
■ In Kenya treatment services are being scaled up through new funding
from the Global Fund, the U.S. President's Emergency Plan for AIDS Relief
(PEPFAR), and other programs. Yet people in need of care and service
providers from around the country are confronting significant obstacles
that include widespread stigma and discrimination against PLWHA and
women, misinformation, lack of treatment literacy, and insufficient
resources to meet basic nutrition needs or afford travel to health clinics
for care.
■ In Nigeria the government has set new and ambitious targets for
treatment delivery, but services remain concentrated in a few "cluster
zones" while people in rural areas struggle to get care. Lack of adequate
funding and human resources complicate treatment expansion. The high
costs of CD4 and viral load tests put these diagnostic tools out of reach of
most people in treatment. Stigma and a lack of treatment literacy programs
both undermine scale up efforts.
■ In Russia efforts are underway to significantly scale up ART delivery in
response to a fast-growing epidemic concentrated among injection drug
users (IDUs). Yet multiple bureaucratic obstacles stand in the way, including
a faulty drug procurement system, lack of collaboration among providers,
absence of a national treatment protocol, a Global Fund Country
Coordinating Mechanism (CCM) that is widely described as ineffective, and
lack of leadership from government agencies. Widespread discrimination
against IDUs inhibits scale up at an even more fundamental level.
In South Africa activists and providers have forged ahead with treatment
delivery even as the national government continues to drag its feet and
fails to combat misinformation and pseudo-science. Multilateral agencies
have been largely invisible and the CCM is widely criticized. Many practical
problems inhibit scale up as well, including a severe shortfall in nurses
and other providers, limited access to HIV testing, and inadequate
availability of drugs.
3
Need for a better functioning global system
All implementation is local, but the international community has to do better at
identifying and quickly addressing impediments to the flow of resources and delivery
of services. Each of the component parts of the multilateral system has strengths
that are needed in AIDS treatment scale up, but UNAIDS, WHO, GFATM, and PEPFAR
need to work in more efficient partnership both within countries and in Geneva.
Countries need additional assistance from the international community in several
areas, from logistical problems (like drug procurement) to long-term challenges
(like reducing stigma).
What gets measured gets done. A much more systematic approach to setting goals,
measuring progress, and assessing and addressing barriers is needed.
■ Rich countries need to stay true to their word and provide increased
and sustained support for the Global Fund and other AIDS treatment
programmes. The G8 countries cannot defensibly set a goal of universal
access and then under-finance the response by billions of dollars.
■ African countries need to live up to their commitment as part of the 2001
Abuja Declaration to devote 15% of their budgets to addressing health
priorities, including HIV/AIDS.
■ UNAIDS, WHO, the Global Fund, and PEPFAR and other bilaterals
must keep the world's vision focused on treatment scale up. The operational
plan for universal access now under development should emphasize
improved collaboration among agencies and include defined country
specific strategies, with hard timelines and milestones, and clear
assignments of responsibility for specific tasks. Incremental targets for
treatment delivery to children and marginalized populations are needed,
as are action plans for delivery of second- and third-line regimens. In the
next six months we want to see concrete evidence of a more collaborative
system that more effectively meets the diverse needs of countries.
■ The International Monetary Fund and the World Bank need to end
macroeconomic policies that unnecessarily constrain public spending so
that countries heavily affected by AIDS can train and hire more doctors,
nurses and teachers.
If the international community succeeds in treating the vast majority of people with
HIV/AIDS who need it, we will have indeed changed the world. The*delivery of anti
retroviral therapy will only be possible with a revolution in global public health,
which makes primary care available to those who have never had it before. This
will pave the way for the treatment of countless other diseases that are now left
untreated and unaddressed in most communities around the planet. The goal is
before us. We should seize this moment in history together.
4
Introduction and Overarching Recommendations
The "3 by 5" initiative challenged the world to provide treatment for three million
people living with HIV in less developed countries by the end of 2005. Even though
this goal was always only a partial one—six million people are in urgent clinical
need of antiretroviral treatment (ART) now—it still proved impossible to achieve.
Developments toward this goal over the past few years have demonstrated that
AIDS treatment delivery can work, even in the poorest settings, yet delivering it is
much more difficult and complicated than "3 by 5" campaigners originally anticipated.
Hundreds of thousands of lives have been saved, but millions of other HIV-positive
individuals have not benefited.
Now the campaign for global AIDS treatment delivery has reached a defining
moment. Governments and non-profit service providers are grappling with
implementation challenges. The Global Fund to Fight AIDS, TB and Malaria
(GFATM) is struggling to raise necessary resources. Dr. Kevin DeCock is replacing
Dr. Jim Yong Kim as head of the HIV/AIDS office at the World Health Organization
(WHO). As the "3 by 5" assessments are being prepared, will the governments and
multilateral agencies involved in AIDS treatment delivery learn from challenges that
have been encountered, systematically address barriers, and hold themselves and
their partners accountable for steady, measurable progress?
The movement for access to treatment is irreversible—and will continue to be driven
by people living with HIV/AIDS (PLWHA) and their advocates. The commitment of
the rest of the international community is less certain, however. The priorities outlined
and decisions made over the next few years by all involved in the global HIV/AIDS
response will directly affect the lives and livelihoods of millions of people in every
part of the world. Goals mean nothing unless the will and resources to achieve
them are in continuous supply at all levels, from multilateral entities to each and
every individual affected by the virus.
This report from the International Treatment Preparedness Coalition (ITPC) is a
prescription for the future. It examines treatment scale up efforts in six less developed
countries, identifying barriers to wider delivery and making recommendations for
governments, the United Nations, and other multilateral institutions. The report
documents systems in transition that need to continue to learn and change if the
catastrophe of tens of millions of deaths from AIDS is to be averted.
The first years of treatment scale up revealed barriers to wider access to antiretroviral
treatment (ART), many of which are discussed in detail in this report. If left
unattended, these barriers will undermine the new G8 goal (announced in July
2005) of "universal treatment access", just as they caused "3 by 5" to come up
short. None of the challenges are easy, but they all have solutions. One solution is
improved leadership at the national level. Another is a better functioning global
5
system that efficiently assists countries in recognizing and tackling problems.
This report identifies several specific areas where many countries need additional
assistance, including: management of expanded programmes, drug procurement,
provision of treatment literacy education, anti-stigma efforts, promotion of
adherence, and human capacity development.
ITPC is a leading civil society coalition of treatment activists. A year prior to the
"3 by 5" deadline, its members agreed that AIDS treatment scale up needed a
performance appraisal. We set out to do a systematic analysis of the barriers to
scale up from the perspective of advocates not wedded to the fortunes of any
particular agency or organization. Six countries (Dominican Republic, India, Kenya,
Nigeria, Russia, and South Africa) were selected by ITPC to be the focus of this
report, based on the number of people in need of treatment and the availability of
ITPC members to commit substantial time to research and writing. A research team
was assembled in each of the six countries and the teams all developed research
plans. A case study interview template was developed for use and adaptation in
each country.
From June through September 2005, country teams completed between 12 and
20 interviews with representatives of governments, multilateral agencies, provider
organizations, advocates, and PLWHA. (Kenya was an exception: in that country,
113 people completed a questionnaire compiled by report organizers.) Most people
and organizations we contacted were happy to participate, although some did not
respond.
Analysis of the results is presented in the individual country case studies in this
report. Each country used a case study methodology, which emphasizes interviews
with carefully selected key informants. Although each country followed a standard
outline, the six country reports are distinct both in findings and in presentation, and
writing styles vary depending on researchers' approach and background. While
each team focuses on the specific issues that most affect HIV/AIDS treatment access
in their country, many common themes nonetheless emerge. Most center on urgent
policy issues as discussed by policymakers, providers, and advocates. The Kenya
case study is based on the personal experiences of over 100 PLWHA and their
service providers. Taken together, these six case studies provide a rich picture of
the state of AIDS treatment access as seen from the frontlines.
What we found — country level results
Respondents in each country stressed the need for a well-functioning national AIDS
programme that can provide leadership, implement a comprehensive national AIDS
plan, and compel international and domestic organizations to collaborate within the
plan's broad outlines. Sadly, the national AIDS programmes—and by association,
the national governments—in these countries did not make the grade. Scale up of
treatment cannot happen efficiently and consistently unless national governments
6
become the primary engines for increasing access to care within their borders. We
found many common barriers in the countries surveyed, including those related
to procurement and logistics, bureaucratic delays, stigma, and lack of sufficient
leadership and coordination. In addition, in just about every country we saw a failure
to link TB and HIV programming effectively, thus missing opportunities to diagnose and
treat these interconnected diseases and establish coordinated systems of health care.
In six months, we want to see the governments of these six countries
address the issues raised in this report and to greatly scale up their own
investment and engagement in access to treatment. We also want key
government officials to meet with PLWHA groups and their advocates as
part of a greatly enhanced effort to move forward together on treatment
access. This has been impossible to date in many of these six countries, and
is a symptom of the disregard those governments have for PLWHA. Such
attitudes must be changed so that governments and those on ART now or in
the future can work collaboratively to ensure that treatment is scaled up
effectively. In addition, African countries need to live up to their commitment
as part of the Abuja Declaration to commit 15% of their budgets to addressing
health priorities, including HIV/AIDS.
What we found — the major multilaterals and bilaterals
Most multilateral entities, such as WHO and the Joint UN Programme on HIV/AIDS
(UNAIDS), have strengths that are needed in AIDS treatment scale up—but these
agencies are not yet collaborating effectively. A 2005 analysis produced by some of
these agencies themselves, in collaboration with international donors, concluded
that the international response is "unevenly coordinated".1 Reports from the six
countries in this document frustratingly reinforce that conclusion. Better coordination
means many things, from strategic planning among agencies in Geneva to closer
communication on the ground to maximize effective use of resources.
UNAIDS, WHO, GFATM, and PEPFAR and other bilaterals must do a better
job of working collaboratively to identify and quickly address impediments
to flow of resources and delivery of services. These agencies are now working
on a plan to "operationalize" universal access. This plan should include
defined country-specific strategies and goals with hard timelines and
milestones, as well as clear assignments of responsibility for specific tasks.
■
GFATM is playing an essential role in AIDS treatment scale up, providing
vital resources and using its funding to drive needed reforms at the country
level. By focusing on th^ three major pandemic diseases in developing
countries and by allowing investment in health care capacity, GFATM aids
efforts to rehabilitate health sector capacity that has been undermined by
decades of structural adjustment, under-financing, and privatization. From
its inception, GFATM has placed high priority on good fiscal management,
accountability for results, and sustainable country ownership. These are
7
laudable goals that, unfortunately, have proved difficult to meet in many
countries. This report documents numerous cases of delays or even outright
barriers to the flow of GFATM resources to those in need. Among the reasons
for substandard flows afe in-country financial mismanagement, problems
with a principal grant recipient, and dysfunction at CCMs. As one study
found, GFATM requirements often reveal longstanding tensions between
partners at the country level that need to be addressed to promote
sustainability of service delivery.2
Substantially increased funding is urgently needed to sustain and expand
GFATM grantmaking. Without increased resource commitments, the G8declared goal of universal access is a hollow promise. Where country-level
impediments limit the planned scope and reach of grants, GFATM, UNAIDS,
WHO, PEPFAR, and other funders have a responsibility to work together
closely to address problems and ensure that the money reaches its planned
recipients, including those providing treatment. GFATM needs to ensure that
countries have reliable access to high quality technical assistance, improve
structures for monitoring implementation, and play a stronger role in pushing
CCMs to function properly.
Substantially increased and sustained funding for GFATM is a top
priority in AIDS treatment delivery. In six months we want to see
more resources not only pledged but disbursed to GFATM, and more
examples of the multilateral system working collaboratively to
accelerate delivery of grants and supporting implementation of
AIDS treatment programmes.
Note: GFATM disbursements are ongoing so numbers used in this report may
not always coincide with most recent GFATM numbers. The GFATM website is
updated daily and provides information on disbursement amounts
http://www.theglobalfund.org.
H
WHO deserves a great deal of credit for setting the "3 by 5" target, and for
struggling to re-organize its bureaucracy to better serve scale up efforts. Jim
Yong Kim, outgoing head of the AIDS programme, should be congratulated
for his willingness to identify countries that are lagging, as well as those that
are succeeding, in their scale up efforts. Other notable strengths of WHO's
efforts include publication of ARV guidelines in resource-poor settings;
establishment of the WHO Prequalification project; technical assistance to
GFATM; and provision of training modules and training resources on ART
delivery. But it is cause for concern that most of the people contacted for the
report did not know what WHO does in their country.
As the chief technical agency on global AIDS treatment, WHO needs to be a
more visible leader on specific implementation challenges that are encountered
8
in countries, be more of an advocate at the country level, and work more
closely with civil society. WHO also needs to set more detailed treatment
goals that include specific targets for children and marginalized populations,
such as IDUs, women, migrants, commercial sex workers, and men who have
sex with men (MSM). The agency should create targets for delivery of secondand third-line regimens based in part on observed resistance trends and
prevalence of side effects. The agency should take the lead in responding to
anticipated drug resistance. Information to guide providers in addressing
resistance should be more widely available.
In six months we want to see detailed action plans for treatment scale
up for all of the countries that have told WHO they want to be part of
"3 by 5." These plans;must have timelines, deadlines, and milestones
for countries and for WHO itself. Countries and WHO should then be
held accountable for meeting these goals.
■
UNAIDS has been an outspoken advocate for the rights of women, sex
workers, gay and bisexual men and other marginalized groups even while
some countries persecuted these groups and other UN organizations failed
to champion their needs. UNAIDS is the global communicator on AIDS,
a technical assistance provider, repository of information, and preeminent
convener. The agency has spearheaded efforts to bring greater harmonization
to planning and monitoring at the national level. While this report documents
UNAIDS7 good work in several areas, many of the people interviewed want to
see more advocacy and other tangible efforts from the agency in support of
AIDS treatment scale up at both the global and country levels.
No voice should be louder than UNAIDS in championing the principle of
universal access to treatment within each and every country of the world.
As the coordinating body of the multilateral system, UNAIDS needs to be
increasingly answerable for accelerated, coordinated treatment scale up at
the country level. Where funding is held up, or management or other deficits
stand in the way, UNAIDS should ensure that resources from somewhere in
the UN system are devoted to fix the problem.
In six months we want to see UNAIDS' visibility in countries greatly
improved. We also want to see more concrete examples of UNAIDS
acting as a problem solver, resolving barriers to treatment scale up in
countries by bringing the resources of the entire UN system to bear on
these obstacles.
®
PEPFAR has initiated HIV/AIDS assistance efforts in 15 countries over the
past two years. Many report interviewees praised PEPFAR for quickly setting
up treatment programmes with measurable goals and for operating in a
determined and efficient manner. However, the programme has attracted
9
considerable criticism at the same time. A 2004 assessment of PEPFAR from
the U.S. General Accounting Office identified "coordination difficulties among
both U.S. and non-U.S. entities" as a major challenge.3
This report corroborates that shortfall with examples of PEPFAR creating
separate systems of care and failing to coordinate with others. PEPFAR is
saving lives today; the question is whether it is building sustainable systems
that will survive for the long term. More immediately, there are grave concerns
around PEPFAR-imposed policy prescriptions, including disallowing grantees
from providing counseling on abortion; requiring grantees to adopt a policy
specifically opposing sex work; promoting abstinence-only prevention
approaches; and forbidding the use of PEPFAR funds to purchase medicines
that are not approved by the U.S. Food and Drug Administration. These
policies undermine efforts to reach women at elevated risk, implement
evidence-based prevention programmes, and utilize quality generic and
fixed-dose combination drugs.
The U.S. Congress must increase funding tor PEPFAR and repeal destructive
policies. Investment in PEPFAR is also no substitute for the U.?. government's
responsibility to fully support GFATM financially and programmatically. PEPFAR
programme managers should work more closely with country partners and
nurture local investment in scale up.
In six months, we want to see PEPFAR delivering treatment to thousands
more and pointing to specific examples of how it is building sustainable
health care systems in its 15 target countries. PEPFAR also needs to
coordinate its medicines portfolio with country-owned national
treatment protocols, procurement, and supply chain management
systems. PEPFAR needs to focus much more intensely on creating
capacity in-country and supporting country ownership of HIV/AIDS
programming. We want specific and independently verifiable evidence
that PEPFAR is seeking to fully integrate its activities on the ground
with other partners.
■
While the shortage of health care workers in developing countries has many
reasons, some of the blame must lie with the International Monetary Fund
(IMF) and the World Bank. Often, loan agreements with these institutions
directly or implicitly mandate national macroeconomic policies that restrain
public sector spending and lead to cutbacks in basic government services,
including health care. We agree with ActionAid's recommendations that
"finance ministries or treasury departments need to take concrete steps on
the Executive Board of the IMF to stop loan conditions that call for 'tight'
monetary policies that constrain public spending at unnecessarily low levels
[...] in order to allow the 'fiscal space' necessary to hire the many more
doctors, nurses and teachers necessary for fighting HIV/AIDS effectively."4
10
In August 2004 ITPC wrote a letter with signatories from over 35 countries to
the managing director of the IMF and the president of the World Bank on this
matter. The reply from both organizations was an unsatisfactory defense of
current policy and indicates an ongoing lack of understanding of their loan
provisions' potentially devastating effects. These international financial
institutions need to be confronted directly and vigorously by advocates and
governments around the world, and urged to reform their policies and
procedures.
ITPC is committed to pursuing the recommendations in this report and has
developed a set of principles and a plan of action that follows.
1
2
3
4
UNAIDS. Global Task Team on improving AIDS coordination among multilateral
agencies and international donors. Geneva, 14 June 2005.
Brugha, R, et al. Global Fund tracking study: a cross-country comparative
analysis, 2 August 2005.
General Accounting Office. US AIDS Coordinator addressing some key challenges
to expanding treatment, but others remain. Government Printing Office,
Washington, DC. July 2004.
ActionAID. Square Pegs, Round Holes, Why You Can't Fight HIV/AIDS with
Monetarism. An issue briefing by Rick Rowden, ActionAid International USA, that
outlines ways in which the IMF is obstructing progress in fighting HIV/AIDS.
ActionAid International USA. March 2005.
11
Principles and Follow-Through Plan
ITPC and the report's authors have developed a set of principles and a plan of
action designed to move forward on the report's findings and recommendations.
In this plan we look at the past in order to learn how to do better in the future.
The immediate goal is to use existing and future resources to ensure that three
million people are on life-saving ART as soon as possible.
If, as the optimists say, the goal of getting three million people on treatment is
reached by spring of 2006, we will celebrate the success and reset the goal for the
rest of 2006. Each goal met sets the baseline for the next goal.
Principles
1. What gets measured gets done
If the mission of getting treatment to millions of people was run like many
businesses, specific goals would be defined and agencies and their managers
would be responsible for having specific plans to reach these targets. Although
AIDS treatment scale up is not a business, the effort could benefit from a much
more pragmatic approach to accomplishing goals. To date, there are only broad
targets established by WHO and by some of the countries that have*expressed
interest in participating in the "3 by 5" initiative. Far more detailed and rigorous
international and country-level planning is needed in the future. Milestones and
deadlines need to be reached and honored—shifting milestones forward in time is
not a solution for success, but .instead represents a recipe for perpetuating failure.
2. Continuing global and multilateral commitment are essential
UNAIDS, WHO, GFATM, and bilaterals like PEPFAR must continue to provide
funding, apply pressure, and keep the world's vision focused on the importance
of treatment scale up. They must implement organizational changes to increase
effectiveness and decrease redundancy. Excuses about "the nature of the UN"
or "the national politics of the United States" cannot be used to avoid the
requirements for better coordination and greater accountability.
3. Some barriers can benefit from shared solutions
Many of the issues discussed in the report's individual case studies cut across all
countries. Some are reflections of the deep-seated prejudice of people towards
each other, but many are organizational or logistical, such as drug procurement
and distribution. The mechanical issues, at least, are fixable in the short term—and
in our recommendations we call for the best minds of the world to work at fixing
them. For instance, stock-outs of drugs should not be happening in any programme,
12
yet we see several programmes around the world at risk of running out of medicines
for the thousands of PLWHA on ART in these countries. UNAIDS, WHO, GFATM, and
bilaterals must collectively monitor these barriers and assign task teams to address
them in an expeditious manner.
4. All implementation is local
In-country implementation is the make or break for reaching treatment delivery
goals. In each of these countries there is a large gap between the number of
people needing treatment and the number of people receiving it. A tailored set of
solutions is required because there is a different constellation of barriers in each
country. Greater focus and investment need to be given by both governments and
on-the-ground multilaterals to honestly assess the problems with treatment delivery
in countries and to develop local strategies for resolving them—instead of seeking
solutions from generalized guidance provided by technical agencies and others
from afar.
•
5. Treatment access is not only drug access
The ultimate unit of success for treatment delivery is the number of PLWHA
retaining decent health and prospering. The country reports document that poverty,
lack of access to food, very long travel time to clinics, and discrimination against
marginalized groups all remain important barriers, even when ART is available.
Consequently, each country report includes recommendations for addressing those
issues. It is clear that some of the problems with delivery of treatment are part of
the larger problems of human development in less developed countries. However,
treatment advocates' work would seem even more overwhelming if HIV/AIDS were
simply folded in among these broader problems.
The push for access to AIDS treatment thus should be seen as a wedge to mobilize
communities and other stakeholders around these broader issues while always
maintaining a focus on achieving the goal of universal access by 2010. Expanded
delivery of evidence-based HIV prevention interventions should also be a top
priority. Treatment scale up provides many opportunities—at testing sites, in clinical
settings, and elsewhere— to increase the reach of HIV prevention and awareness
initiatives.
13
ITPC Action Plan for 2006
ITPC has created a follow-through plan and timeline for taking action on the
report findings. Members of the coalition will place top priority on the actions
and objectives listed below.
First quarter 2006
■ Meet with senior representatives of each major multilateral, bilateral, and
■
■
n
■
other funders included in this report to review findings an^| develop
specific and measurable goals, timelines, and action points
Meet with senior representatives of country governments
Meet with national AIDS organizations in each of the report's six target
countries to review findings and develop specific country-level
implementation plans
Define specific target number goals (by quarter for 2006-2007) for people
on treatment for each of the six countries
Work with major players (global and country-level) to develop an
integrated process for counting the number of people on treatment
Second quarter 2006
■
■
■
Issue update bulletin on treatment access progress against the plan
If the target of having three million people on ART is met, set new target
for remainder of 2006; if not met, identify top issues and provide action
points for acceleration
Develop Level Two Report process to ensure in-depth follow-up in the six
countries
Identify six additional countries to begin Level One Report analysis
Third quarter 2006
■ Issue update bulletin on treatment access progress against the plan
■ If the target of having three million people on ART is met, set new target
■
for remainder of 2006; if not met, identify top issues and provide action
points for acceleration
Provide report update and forum to discuss results and actions among
global players at International AIDS Conference or another venue
Fourth quarter 2006
■ Issue AIDS Treatment Access Report II, including update on the six initial
■
countries, first level analysis on six more countries, and overall global
progress report
If the target of having three million people on ART is met, set new target
for remainder of 2006; if not met, identify top issues and provide action
points for acceleration
Develop and share top-level plan for 2007
14
Country Reports
The six case studies in this report are listed in alphabetical order by country name.
HIV prevalence and ART availability differ widely, as do other important indirect and
direct factors that play a role in determining effective national HIV/AIDS responses
— such as political commitment, economic growth, civil society strength, and under
lying levels of stigma and discrimination related to HIV and risk behaviors. Each
country therefore offers a unique and instructive lens through which to consider the
successes and failures of global ART roll out to date.
The recommendations at the end of each case study are for the most part specific to
the country's situation. However, individuals and organizations advocating for faster
and more efficient treatment scale up in any country are likely to find useful lessons
from these country studies. In addition, these country reports offer important lessons
for use at both the global and national levels.
15
* DOMINICAN
' REPUBLIC
1
"'I ..
*•
I?
?■
by Eugene Schiff,
Agua Buena Human Rights Association
HIV/AIDS has claimed the lives of tens of
thousands of Dominicans in recent years, while
less than an hour and a half away, in Puerto
Rico, Florida, and Cuba, ART and diagnostic tests
have been available for almost a decade. Now,
finally, access to ART is gradually improving in
the Dominican Republic. As of September 2005,
more than 2,000 PLWHA in the country were
receiving free ART subsidized by GFATM, an
extraordinary change from just a year or two
ago. Antiretroviral drugs are theoretically
available to those who need them in more than
20 Comprehensive HIV/AIDS Treatment Centres
throughout the country, and plans had been
announced to open at least 16 more centres in
the future.1
There is ample reason to be excited about the
important progress made—progress that has
saved and improved the lives of thousands.
However, the allocation of funds, expansion of
treatment centres, and upgrading of necessary
health infrastructure has come unacceptably late
and presented many difficult challenges. It is
estimated that 10,000-15,000 people in the
country are still in need of ART today.
Many critical barriers to AIDS treatment access
remain and have been identified through
interviews and research for this report.
Overcoming these barriers must now become a
significantly greater priority for the Dominican
government and international donor agencies.
1 The Spanish acronym for these centers is "UAL"
16
How the research was conducted
• 1 2 confidential interviews
with representatives from
UN agencies, government,
civil society, treatment sites,
and others
• Site visits to public hospitals,
clinics, prisons, and rural
areas
• Review of key documents,
including the Global Fund
proposal
• Delays in implementation
of GFATM grant
• Lack of high-level political
will
• Limited CD4 testing capacity
• Discrimination against
Haitians living in the country
• Shortages of ARVs
• Chronic lack of treatments
for opportunistic infections
• Minimal linkage of HIV and
TB care
• Power struggles and lack of
coordination among
agencies
DOMINICAN REPUBLIC
Treatment scale up must be integrated into a larger and sustained effort to improve
the quality and level of care for hundreds of thousands more people living with,
and all too often dying from, HIV/AIDS, tuberculosis, and other treatable and
preventable diseases.
It is important to note that although this country report focuses on the Dominican
Republic, its HIV/AIDS response has a significant effect on the lives of many people
from Haiti, the other nation on the island of Hispaniola. Haiti is the poorest country
in the Western Hemisphere and has the most severe HIV epidemic in the Americas.
Hundreds of thousands of Haitian migrants live in the Dominican Republic, both
legally and illegally, and they are frequently last on the priority list for AIDS
treatment and other services.
Moreover, migration and tourism within, to, and from the Caribbean (and beyond)
means that the spread of HIV and lack of effective treatment programmes on the
island is not only a concern for the Dominican and Haitian governments. The
epidemic also affects individuals, hospitals, and communities in places with large
numbers of both Haitian and Dominican immigrants, such as Puerto Rico, Florida,
New York, the Bahamas, Spain, France, Canada, and elsewhere. The AIDS epidemic
and deteriorating social and economic conditions brought a sharp halt to most
tourism in Haiti in the 1980s; if left unchecked, HIV/AIDS could have the same
effect in the Dominican Republic. In some ways the damage has already been done:
in cities and communities near popular beach resorts on the northern and eastern
coasts, areas that attract millions of tourists each year, studies among pregnant
women reveal some of the highest rates of HIV in the Dominican Republic.
Research methodology
Research for this chapter was conducted over several months through September
2005. In-country research included a dozen formal, confidential interviews. These
were performed based on a template prepared specifically by the ITPC report
organizing committee, which was translated into Spanish by the Dominican Republic
country team. Among those interviewed were key representatives from the U.S.
Agency for International Development (USAID), UNAIDS, the Clinton Foundation
HIV/AIDS Initiative, the National AIDS Programme, the National Association of
People Living with AIDS (REDOVIH), and physicians from several ART sites.
Researchers also reviewed the GFATM country proposal and interim progress reports
as well as other documents supplied by the Ministry of Health. The thoughts and
concerns of additional health workers, NGOs, and "ordinary" non-affiliated PLWHA
in treatment centres were also' sought out and considered. Numerous site visits
were made to public hospitals, clinics, prisons, and rural areas with high rates of
HIV/AIDS, in order to assess the barriers limiting access to ART and to review
overall treatment preparedness in these settings.
17
DOMINICAN REPUBLIC
Few of those consulted for this research could answer all of the questions posed to
them, especially those related to the treatment programme nationwide. This
indicates the overall lack of transparency and incomplete sharing of information
related to many aspects of the National AIDS Programme—and represents a key
barrier to better treatment access and coordination among providers. Difficulties
also arose in trying to maintain accurate, up-to-date information given substantial
changes in the national response over the course of the research period. Some of
the specific obstacles affecting treatment access in May or June subsequently were
resolved, others became more noticeable by September, and still others remained
unchanged and therefore need to be addressed with urgency.
In a few cases officials from government and donor agencies did not respond to
repeated requests for interviews and information. However, it was encouraging
that most people approached were extremely supportive of this research and were
willing to participate and share their opinions.
Key barriers
The GFATM grant represents d vital opportunity for improving treatment access in
the Dominican Republic, given that the government and other donors have generally
not been willing to fund the purchase of ARVs. However, ongoing delays and
difficulties have stymied its effectiveness so far.
Presidential elections in the middle of 2004 and ensuing political changes led to the
replacement of several key decision makers at COPRESIDA (the government agency
selected as the principal GFATM recipient) and the Ministry of Health. These steps
were taken not only as part of regular changes stemming from political shifts, but
also in order to address inefficiency and alleged corruption among administrators.
Still, nearly everyone interviewed for this project—including public h’ealth authorities
and political appointees—said that lack of political will at the highest levels
remained one of the most significant barriers to improved treatment access. The
establishment of a high-quality public sector HIV/AIDS response, including ART
provision and prevention education, has not been a priority for the Dominican
political elite, although there are some signs that this is finally changing.
GFATM delays have brought the national treatment programme to a virtual stand
still on occasion, largely because neither the previous nor current administration
has dedicated adequate resources for ART. As a result, in comparison with nearly
every other country in Latin America or the Caribbean (Haiti excepted), the
Dominican Republic has one of the lowest percentages of PLWHA with access to
ART and the largest number of people still dying without ever getting treatment.
Lack of, or extremely limited supply of, CD4 testing is another critical barrier to care
because CD4 testing is often a prerequisite for initiation of therapy. There is also a
18
DOMINICAN REPUBLIC
shortage of treatment centres, treatment advocacy and literacy campaigns, and
overall preparedness in rural areas. The shortages are particularly noticeable in the
poorest regions all along the Haitian border, in the southwest, and in several
eastern cities and towns with relatively high rates of HIV/AIDS.
Another major problem is that Haitians and Dominicans born to Haitian parents
without legal documents are marginalized and stigmatized throughout society. They
are less likely to seek out and receive ART because of language and legal barriers
as well as racial discrimination that frequently flares into violence and harassment.
The Dominican government has made no special attempts to open treatment sites
that reach out to or provide ART to poor Haitians with AIDS. The result is that many
people of Haitian decent are denied their human rights and even minimal public
health services, despite the high rates of numerous diseases in their communities.
Waiting lists, sometimes hundreds of people long, are common in many areas
where ART and CD4 tests are available. Although reportedly smaller now, these
waiting lists remain a recurring problem that is sometimes alleviated for a month
only to become a seemingly worse problem again as more individuals come
forward for treatment and lab diagnostics each week.
Someone's job has to depend primarily on getting ARVs to the
sites. This is a small country with relatively good roads to all the
sites that need ARVs. It is inexcusable that orders are not filled
monthly on a timely basis. It is inexcusable that there are waiting
lists open for months when this is such a small area of coverage,
and there are ARVs in customs or in the warehouse, ticking towards
expiration. This is truly'a crime.
Anonymous
There have been acute shortages of even basic first-line ARVs like nevirapine, one
of the cheapest ARV drugs on the market. As recently as June 2005, few individuals
were able to start taking medicines and others were given just a few days' supply of
pills and told to come back for more. There are stories of doctors being forced to
improvise to ensure that all in need have access to medicines. For instance, a
limited supply of medicines prompted some physicians to give adults huge amounts
of liquid from children's drug formulations in order to maintain and adhere to their
correct treatment cocktails. Some doctors reported having brought drugs into the
country in suitcases on commercial flights from neighboring islands in order to
prevent treatment interruptions at their sites.
19
DOMINICAN REPUBLIC
Patients come in to refill, or to start therapy, and we have to post
pone initiation in people who desperately need it—prioritizing in
ways that are totally inappropriate (by level of mortality risk, "first
come, first served," "adherence potential," or just pure lottery).
[Treatment] has to be rationed unfairly, because there really is no
fair way to do this. It puts us in a desperate bind. We ended up
just putting adults on paediatric preparations, having them come
in every two to three days to pick up their meds, to stretch the
supplies out. [We] stopped doing home visits to deliver ARVs to
patients in bateyes, shantytowns and others with limited mobility
Although we were able to avoid anyone being more than 72 hours
on two ARVs only, even this is wretched, and goes against what we
try to emphasize to the patients.
— Physician
The absence of an efficient system for CD4 testing nationwide has meant that many
people living with HIV only enter the treatment system after they become extremely
sick. For some, this is too late to benefit from care. CD4 tests need to become
cheaper; they need to be administered regularly (every six months to those who are
HIV-positive); and they need to be provided to the newly diagnosed as well as to
people with symptoms of advanced AIDS.
Other critically important issues needing attention include expanded treatment
literacy and preparedness programmes, access to second-line medicines and viral
load testing, and provision of infant formulas. People need to better understand
the danger of treatment interruptions. Something must be done to secure reliable
electric power necessary for cold chain storage. There is also a total lack of
resistance testing, which will become a critical need in the near future.
Another concern has been the chronic lack of medicines for opportunistic infections
(Ols) at ART sites. According to some sources, procurement for these medicines had
yet to take place by July 2005. At the time research was undertaken, even the
cheapest and most basic medicines—like cotrimoxazole, which is taken as
prophylaxis for pneumocystis carinii pneumonia and other bacterial infections—
were frequently unavailable. In many cases it was the responsibility of patients to
buy these medicines at private pharmacies, which often charge prices beyond the
reach of most poor people. Although there have been some limited donations or
local purchases and distribution, respondents said that relatively expensive
medicines—such as fluconazole, acyclovir, and gancyclovir—were largely
unavailable in public clinics and only found on the shelves of private pharmacies
at prices that either further impoverished or were well beyond the reach of most
20
DOMINICAN REPUBLIC
PLWHA. Poor coordination between COPRESIDA and the health authorities was
frequently cited by interviewees as an important factor in procurement and supply
problems with drugs for Ols.
HIV/TB treatment and care
The challenges to providing effective diagnosis, prevention and treatment
programmes for HIV/TB are somewhat different in the Dominican Republic because
TB medicines are generally provided through a more established government
programme. Some respondents mentioned the need for guaranteed access to drugs
for potential cases of multi-drug resistant TB, which are not regularly included in all
areas served by the national TB programme. Only one out of more ihan a dozen
ART centres visited also provided TB treatment in the same facility in an integrated
fashion, and this was one of the smaller, newer sites. Many interviewees pointed out
that most doctors are simply not trained in managing HIV/TB co-infection. Equally
problematic is that lack of knowledge about HIV co-infection is common among
many individuals who work in’HIV/AIDS advocacy, prevention, and treatment
provision in general.
The need to better integrate HIV/TB care remains inadequately addressed at the
clinical level and poorly understood at most other levels of the care system. Many
PLWHA are at risk for contracting TB, especially those not on ART and people living
in areas where rates of TB are highest—such as jails, slums, hospitals, and poor
urban and rural areas experiencing an influx of Haitian immigrants. (In Haiti both
TB and HIV and HIV/TB co-infection are proportionally even greater problems than
they are in the Dominican Republic.) For many who are poor, sick, and weak,
especially those traveling larger distances to receive HIV-related care, all the
appointments, tests, and other challenges of TB care can become prohibitively
difficult and costly. Unlike HIV/AIDS, TB remains a largely invisible epidemic in
much of the country. It is a disease few people talk about, even those living with
HIV (who are among those most at risk tor TB).
Coordination and communication challenges
The country has a plan but only on paper. Without money nothing
happens. Treatment access is almost exclusively based on funding
from GFATM.
- Anonymous
Coordination of HIV-related care remains a major problem in the Dominican
Republic. There have been numerous meetings and a wealth of resources spent
on conferences and training sessions attended by providers, civil society, donor
agencies, and public sector representatives. Yet many people consulted as part of
this research were often unaware of what was being done by others. In general,
21
DOMINICAN REPUBLIC
numerous respondents said that UNAIDS maintained a very low profile and minimal
role in the Dominican Republic related to treatment access, which is unfortunate
considering the stated purpose of the organization.
Several other respondents said that the Pan American Health Organization (PAHO)
played an important role in the CCM but had done almost nothing related to the
"3 by 5" initiative to improve treatment access by the end of 2005. With several
month delays in procurement, disbursement, and waiting lists for treatment and
lab tests throughout much of 2005 (and previous years), "3 by 5" risks becoming a
meaningless slogan in the Dominican Republic.
There also appears to be an overall lack of communication and struggle over power
and resources between COPRESIDA and the Health Ministry, which depends on
CORPESIDA for the purchase of medicines and other funds. As seen during the
crises related to treatment interruptions, this can cause major tensions at all levels.
Blame is passed from grassroots organizations and PLWHA to doctors and clinics to
national administrators to politicians to agencies and governments abroad from
Washington to Haiti to Geneva. Whoever is to blame, the end result is the same—
too few of those who need ART actually receive it, and fingers are pointed back and
forth while many people are left to die. While the actual figure is hard to determine
with any precision, respondents in this survey estimated that only 5-15% of those
needing ART in the country have access to it today.
*
The Dominican Republic is a small country with decent infrastructure and a lower
HIV prevalence than many other countries discussed in this report. Universal access
to ART is a real possibility in the country—if the government makes it a top priority.
The delays in scaling up treatment over the past two years offer full proof that all
involved in the HIV/AIDS response, notably the government and GFATM, need to
find a better way to ensure that treatment access can be prioritized and rapidly
improved.
What is needed now?
• Increased government investment in AIDS treatment
• The securing of a long-term funding commitment from GFATM
• Collaboration—not competition—among providers of services
• Improved access to CD4 testing across the country
• Lower prices for second-line treatments
• Greater protection for the human rights of people living with HIV/AIDS
• Strengthened public treatment sites
• Expanded community-based advocacy
22
DOMINICAN REPUBLIC
Recommendations
B
Expand access to CD4 testing. Affordable CD4 tests must be made available
so that all who know they are HIV-positive can regularly be tested. It is
possible that the national government lab where these tests will be performed
will be functioning by the time this report is printed, but this facility is already
several years late in opening. Many other countries in the region are able to
perform low-cost CD4 tests for about $5-$ 10 per test; there is no reason
why a similar solution cannot be found for the Dominican Republic. Without
regular or affordable access to viral load tests or genotypic resistance testing,
CD4 tests are one of the few scientific tools available to confirm that ARV
medicines are working properly, and they are also important in accurately
determining the best time to start ART
■
Secure access to second-line therapies. Second-line treatment regimens
remain very expensive in the Dominican Republic, and their high prices
threaten to drain resources from other important aspects of the National
AIDS Programme and overall health system. This issue should be addressed
as soon as possible because as more PLWHA remain on ART for longer
periods of time, more will develop resistance and need access to affordable
second-line medicines. Several pharmaceutical companies have offered
significant price reductions for their ARV drugs in the Dominican Republic,
and the Clinton Foundation has negotiated further reductions in the prices
of generic equivalents. Now governments in the region—and the Dominican
government in particular—must be pressed to purchase second-line
medicines for those who need them and negotiate better prices for these
medicines. Many fear that the recently signed Central American Free Trade
Agreement (CAFTA) between the United States and six other countries,
including the Dominican Republic, will undermine access to affordable
second-line AIDS medicines because of U.S. insistence on safeguarding
patents for originator-brand ARVs.
H
Commit government and GFATM resources for the long term.
Numerous respondents raised concerns about the sustainability of programmes
funded by GFATM. This uncertainty is used by some administrators as a
rationalization—and even directly referred to as such by some health workers
—for not providing treatment to all those who need it now because of concerns
that the government may not be able to afford to keep all people on treatment
after GFATM aid dries up. Yet in the Dominican Republic as in many other
countries, the availability of GFATM monies has provided an excuse for
governments to not invest more of their own funds more quickly in ensuring
treatment access for PLWHA. Neither the government nor GFATM should
allow such an excuse to gain credence or influence policy in any form. The
government must commit to expanding ART over the long term and allocate
resources to achieve scale up for as long as necessary.
23
DOMINICAN REPUBLIC
■
Expanded and strengthened civil society advocacy. Treatment advocacy
groups are essential for a successful and sustained response to AIDS in the
Dominican Republic. Some respondents observed that cooperation and
collaboration among activists, community-based organizations, and advocacy
groups have been damaged by competition for GFATM resources. The
scramble for securing salaries, project support, travel, equipment, and other
necessary items can become destructive and occasionally lead civil society
actors to focus on obtaining resources instead of on appropriate service
delivery. This is a worrying trend that has potentially negative implications
for the future of the movement for universal treatment accessr Treatment
advocacy needs to continually be redefined based on changing circumstances
and needs of PLWHA. Without strong and interlinked community-based
advocacy and activism, there is the risk that very little will change for most
HIV-positive people in the Dominican Republic and elsewhere.
▼
■ Strengthen public treatment sites. Vocal and sometimes heated debates
have occurred among donors, the government, and the health sector about
the most effective approach to expanding treatment access. One area of
disagreement is where to dedicate funding: toward NGOs, religious
organizations, or private clinics, or perhaps for broadening the public health
sector in general? One key factor is that large differentials in salary, quality
of care, and infrastructure exist among different treatment sites. Some see
NGOs and private clinics as more efficient than public clinics because they
often have nicer facilities, more flexibility in terms of hiring new staff, and
greater capacity to absorb new funds.
However, it is important that the public sector be provided an appropriate share of
resources as part of an overall effort to ensure consistent quality of care for the long
run. There are significant challenges to raising the quality of public sector treatment
facilities. For one thing, public clinics continue to shoulder the largest burden of
treating poor PLWHA, a situation that places great strain on their capacity on a
regular basis. Secondly, many charge that politics and patronage have strongly
influenced hiring practices, the flow of resources, and selection of new treatment
sites. Thirdly, treatment sites are not as widely distributed as they should be. There
are now over a dozen different treatment sites in Santo Domingo, the capital, yet
several other cities and regions still lacked any treatment sites at the time research
for this report was conducted. Even those in Santo Domingo frequently operate in
substandard conditions, lacking access to a logistics system and medical records
archive that could improve coordination with other sites and central health
authorities. In general, staff must be better trained, and resources must be found
to cover the high costs of electricity, rent, furniture, computers, and other necessary
materials.
There are a number of positive signs that the situation is beginning to change. It is
important, however, that site expansion be designed with the goal of serving the most
vulnerable and needy people instead of based on political patronage or influence.
24
INDIA
by Dr. Venkatesan Chakrapani, M.D.
Indian Network for People living
with HIV (INP+)
It is estimated that over five million Indians
were living with HIV by the end of 2004. WHO
estimated that at that time, 770,000 were in
need of ART. Yet as of August 2005, only about
12,000 people were receiving ART through the
government AIDS treatment programme.
Research methodology
The report for India was prepared by a research
team consisting of K. K. Abraham, president of
INP+; Dr. Venkatesan Chakrapani from INP+;
Dr. Joe Thomas from FXB International; Murali
Shunmugam of the Social Welfare Association
for Men (SWAM) and Daisy David from INP+.
The following methods were used:
•
In-depth interviews with six men and five
women receiving ART from government
treatment centres in different states
•
Key informant interviews with community
leaders: PLWHA network leaders (two people),
an HIV-positive MSM, and an HIV-positive
ex-IDU
•
Key informant interviews with NGO staff
(two people)
•
E-mails sent to the National AIDS Control
Organization (NACO) and India offices of
WHO and UNAIDS
25
How the research was conducted
• 16 confidential interviews
with PLWHA, NGO staff,
and community leaders
• E-mail communication with
NACO and UN agencies
• Three group discussions with
INP+ workshop attendees
• Analysis of key documents
and postings on e-forums
• Review of the draft report
by Indian PLWHA activists
Major barriers to treatment
delivery:
• Ever-shifting deadlines to
achieve targets committed
for ART delivery
• Lack of need-based target
setting by NACO
• Critical gaps in national
treatment guidelines and
inadequate enforcement of
some guidelines
• Shortfalls in human
resources and funding
• Inadequate response from
national AIDS program on
several key issues
• No plan to ensure secondline treatment regimens
• Need for many people to
travel long distances for care
• Threats to continued and
expanded manufacturing of
generic drugs
• Lack of effective coordination
between HIV and TB programs
111
INDIA
Three group discussions with PLWHA who came from various states to attend a
capacity-building workshop sponsored by the Indian Network for People living
with HIV/AIDS (INP+), held from 28 September to 1 October 2005. These
groups discussed three topics: ART access in "high prevalence states"; ART
access in low prevalence states" (NACO recently decided to change the term
to "highly vulnerable and vulnerable states"); and treatment issues of HIV
positive IDUs
•
Presentations made by PLWHA activists at the national meeting "ARV access in
India: NACP-III and Beyond" in Delhi on 28-29 October 2005. (NACP-III refers
to the National AIDS Control Program-Phase III, 2006-2011). The draft report
of this study was circulated to the PLWHA activists who attended, and their
suggestions were incorporated in the final version
•
Analysis of resources including information on NACO's website
(www.nacoonline.org); approved funding proposals submitted by India to
GFATM; presentations made by NACO on the NACP-III draft framework in
various meetings; working group meeting reports of NACO's NACP-III
planning process; discussions in the e-consultation of NACO on NACP-III;
and information on the National TB programme's website (www.tbcindia.org)
•
Analysis of relevant postings in AIDS-lndia e-forum
Major barriers
The research identified several major barriers to scaling up India's national ART
programme.
Ever-shifting deadlines to achieve targets committed for ART delivery
Targets are useful because they can set concrete goals and promote accountability.
Unfortunately, the Indian government's deadline for targets for ART delivery keeps
slipping. In 2004, the government announced that it would provide free ART to
100,000 PLWHA by the end of 2005.1 In an official release, the government stated
the following objective (as cited by the Human Rights Law Network): "To place
100,000 AIDS cases on structured ART by the end of 2005 and be able to provide
treatment to an additional 15%-20% of AIDS cases each year, thereafter, for a
period of five years."2 However, the target date was then shifted to 2007, and
recently once more, to 2008.3
It is important to note that many PLWHA in India have access to treatment outside
of the national free ART program. For instance, some central government institutions,
including Indian Railways and Uniformed services, have their own ART programs for
employees. However, there is no systematic information regarding how many PLWHA
are on ART through such programs, the corporate sector, or NGOs. In the latest
version of the NACP-III strategic plan, NACO estimates that a total of nearly 40,000
PLWHA might be receiving ART in India through both the public and private sectors.
26
1
INDIA
Lack of need-based target-setting by NACO
While WHO's "3 by 5" initiative states that at least 355,000 Indian PLWHA should
be on ART by the end of 2005, NACO repeatedly noted in several forums that
180,000 PLWHA would receive ART by the end of 2010. This is actually the target
mentioned in the successful Round 4 proposal submitted to GFATM by NACO. The
numbers lead one to wonder whether NACO is depending only on GFATM for its
national ART programme without trying to mobilize more resources. In its latest
draft of NACP-III plan, NACO mentions that the number of PLWHA to be provided
with free ART by 2011 is "200,000, 40% of the total number who need ART."
During a national meeting of Indian PLWHA activists on 28-29 October 2005,
NACO's director general, Dr. SY Quraishi, expressed his support for universal
access to ART in India; this, however, needs to be stated explicitly in the final
NACP-III strategic plan.
Lack of enforcement of national ART programme implementation guidelines
Among other eligibility criteria, NACO's guidelines state that persons with an
AIDS-defining illness should be started on ART. Yet in actual practice, in most of
the ART centres, emphasis is placed on a patient's CD4 count regardless of the
presence or absence of symptoms. Only persons whose CD4 count is less than
200 are started on ART even if they have had an AIDS-defining illness.
Critical gaps in the national ARV program implementation guidelines
NACO needs to develop a concrete plan for providing ARVs to all
those who need treatment. We should no longer give excuses that
we [India] have limited resources. Develop a roadmap for universal
access to ARVs in India; get support of various partners; and
mobilize necessary resources.
— K. K. Abraham, president, Indian Network for People living with HIV/AIDS
Numerous gaps and inconsistencies exist in the implementation guidelines for the
country's national ART program. First, people who have already started on ART
through corporate hospitals but whose current CD4 count is more than 200 are not
enrolled in the national ART programme. As some Ugandan doctors have pointed
out, this "restricted access strategy" may prevent some patients from revealing that
they are already on ART if they know that only the treatment-naive will qualify.4
It could also result in the selection of drugs that will increase resistance. At the
PLWHA activists' meeting on 29 October 2005 (see above), NACO argued that
enrolling persons who are currently on ART using their own money in the national
programme would decrease ART access by PLWHA who are living below poverty
line. However, it was clearly pointed out by activists that if these persons are not
enrolled in the national programme, then they would soon be living below the
poverty line if they continue to pay for ART using their own money.
27
INDIA
Second, policy guidelines do not address situations in which it may got be
appropriate for PLWHA to receive all three medicines in the standard first-line
regimens. For example, if a person is taking two first-line drugs along with a
protease inhibitor through a private clinic, he/she cannot get the first-line drugs
alone from a government centre—even if that person says he/she will be buying
the protease inhibitor from private pharmacy.
Third, there is no uniformity with regard to refilling prescriptions. Though many
centres refill ARVs on a monthly basis, some provide ARVs for only one week, thus
forcing PLWHA to undertake complicated and time-consuming travel every week to
receive their medications. Fourth, there are no clear guidelines on providing ART to
HIV-positive IDUs who are co-infected with hepatitis B and/or hepatitis C viruses;
as it stands now, most ARVs available through government programmes are
contraindicated in patients with active hepatitis or will produce liver problems in
co-infected patients. Though lamivudine-containing regimens may control hepatitis
B infection, there is no treatment given for active hepatitis C infection. (Patients
co-infected with hepatitis-C virus need to spend a significant amount of their own
money on interferon injections since they are not available in government centres.)
Also, buprenorphine is not mentioned as a possible substitution treatment in
NACO's ART guidelines; furthermore, although the guidelines specifically refer to
methadone as a potentially effective and useful substitution treatment, the medicine
is not available.
Many of us [HIV-positive IDUs] also have hepatitis C or hepatitis B.
We may have liver problems but sometimes doctors [in government
ART centers] start us on nevirapine-containing regimens... We also
need to buy interferon [for hepatitis C] outside since it is not
available in the government hospitals—and it costs a lot of money.
— Ratan Singh, Manipur Network of People living with HIV
Finally, national ART guidelines do not address how to ensure equity in ART
access. This means that the following are unlikely to have equal access to
potentially lifesaving treatment: the poor, people in rural areas, prisoners, and
members of marginalized groups such as sex workers, MSM, hijras (transgender
women), and IDUs.
MSM who are very feminine face discrimination in the government
centers and thus many do not want to go to visit them. In addition,
many MSM are reluctant to seek ART access because they are
afraid that other MSM will find it out.
— Vijay Nair, community leader in Maharashtra
28
INDIA
Lack of availability of second-line regimens in the government ART programme
No significant steps—including negotiating with Indian pharmaceutical manufacturers
to bring down the prices of second-line ARVs—have been taken by NACO to ensure
second-line regimens are available for those PLWHA who are now taking first-line
regimens. A new study has shown that as many as 20% of ART-naive PLWHA may
be resistant to first-line ARVs in southern India.5 This means there is an urgent
need to plan for and keep stock of second-line ARVs in national ART centres.
There is yet another reason why second- and third-line ARVs such as efavirenz and
protease inhibitors should be widely available: several studies have^hown relatively
high prevalence of HIV-1 and HIV-2 coinfection - as high as 33% in some states in
India.6 NACO guidelines state that for "HIV-2 infections, only the triple NsRTI and
Pl-based regimens should be used because of inherent resistance of these viruses to
NNRTI compounds." However, in almost none of the government ART centres are
efforts made to identify the type of HIV infection before beginning ART. Therefore,
HIV-2 infected persons on ART through the government ART programme are not
specifically identified and are essentially on dual-drug therapy (since nevirapine
does not work against HIV-2).
Non-availability of paediatric formulations in the government ARV programme
Neither paediatric ART formulations nor paediatric dosage tablets are available at
government ART centres. Children therefore must take split-up adult tablets or
powdered adult tablets, which often results in under- or over-dosage.
Waiting lists in many ART centres may reflect staff shortage and lack* of adequate
stock of ARVs
The state government of Kerala has started its own ARV programs
without waiting for NACO to provide ARVs in their states. Why then
can't other state governments start similar programs in their states
or provide support to the central government sponsored national
ARV rollout programs in their states? NACO needs to initiate
dialogues with the state governments about this.
— Aasha Elango, national advocacy officer, Indian Network for
People living with HIV/AIDS (INP+)
Many treatment centres have long waiting lists of individuals who wish to initiate
ART. Often this results from an inadequate number of doctors. For example, at the
Government Hospital of Thoracic Medicine, only three doctors are available to see
an average of 800 outpatients daily, of whom about 350 are PLWHA. Sometimes
waiting lists grow because of inadequate stock of ARVs. In mid-2005, there was an
ARV stock crisis in Manipur that interrupted the enrollment of PLWHA. Consequently
29
INDIA
the number of PLWHA in the waiting list of JN Hospital (an ART centre) rose to some
600 patients at the end of July 2005.7
Practical challenges faced by PLWHA
People living with HIV in India should be able to get ARVs wherever
they live. NACO should not discriminate against PLWHA living in
certain states of India by establishing ARV centers only in "high
[HIV] prevalence states" .... Is it my fault if I happen to live in a
"low prevalence state"?
— Daxa Patel, Gujarat State Network of People living with HIV/AIDS (GSNP+)
NACO and all providers also need to address the practical issues faced by PLWHA.
First-line drugs are now provided primarily through hospitals attached to medical
colleges; many people thus must travel long distances to get ART. People who are
traveling from one state to another often have difficulty getting ART because proof
of local residence is required by many national ART rollout centres. Many centres
close at 2 p.m., forcing PLWHA coming from other districts to stay overnight. At
many treatment centres, CD4 testing is only done on certain days.
No treatment education materials are available for PLWHA and there are no
government programmes that explicitly focus on treatment education. Though
national ART guidelines mention treatment adherence, they are silent on how
patients should be educated about ART and helped to make informed decisions
about their treatment options. In India, it is primarily the INP4--affiliated networks
that are providing treatment education programmes, often establishing treatment
counseling centres on the campuses of ART centres in high prevalence states. So far,
neither NACO nor the State AIDS Control Societies (SACS) has produced treatment
educational materials for PLWHA.
Patient interaction with doctors and counselors is usually very limited because there
are a large number of patients and limited human resources. This situation limits
the ability of health professionals to fully discuss treatment adherence.
One of the eligibility criteria for enrolling PLWHA into the national ART programme
is that the "patient understands the implications of the ARV therapy." This requirement
could be used by some physicians to withhold medicines from otherwise clinically
eligible patients (particularly PLWHA who are IDUs). One of the interview participants
mentioned that a patient was denied ART because the doctor thought he would
become sexually active if he started feeling healthier. Another interviewee said that
there seemed to be some hesitancy in prescribing ART to PLWHA who are middleaged or older. He reported an incident in which a doctor asked, "Why do you need
this [ART] at this age?" Though this patient finally received treatment, the incident
clearly shows the doctor's insensitivity and also the humiliation that some people
living with HIV continue to face.
30
ill
INDIA
Active referrals to PLWHA networks at the district and state level should be done
in all ART centres. In the GFATM-supported project, INP+-affiliated networks are
supposed to develop linkages with government ART centres to provide treatment
adherence support to PLWHA. However, there are significant bureaucratic obstacles
in getting approval from government hospitals to allow network personnel to contact
PLWHA receiving ART through public centres. For example, the PLWHA network is
required to get permission to undertake this activity from the dean of the government
hospital, a project director from the State AIDS Control Society (a government
body), and government officials in the state department of medical services. In
addition, some government health care providers are reluctant to refer their
patients to the networks under the pretext of preserving patient confidentiality.
Threats to access to generic drugs
For decades, India has been a leading producer and exporter of generic medicines
because the government excluded medicines from patent protection. However,
World Trade Organization (WTO) rules required India to grant patents and other
forms of intellectual property rights on medicines as of 1 January 2005. WTOmandated 20-year patent terms will prevent Indian generic companies from making
cheaper generic versions of second generation and second-line ARVs not only for
local consumption, but also for export to developing countries that depend on
Indian generic industry. The price cuts resulting from generic competition of pre
January 2005 medicines will be impossible to duplicate without changes to Indian
law. Public health and HIV organizations are pressing the government to make
production of generic versions of medicines without the consent of the patent holder
streamlined and straightforward.
In addition, the government is now considering amending the provisions of the
Drugs and Cosmetics Act to provide protection of test data submitted to the Drug
Controller of India for marketing approval in the form of an exclusive marketing
right. Public interest groups are concerned that amendments to the brugs and
Cosmetics Act will include "data exclusivity" measures that will impact access to
generic drugs as they are designed to limit generic competition and the ability of
the government to make use of safeguards in their patent laws to protect public
health. Data exclusivity is not required by the WTO, but lobbies representing the
originator companies, as well as the U.S. government, are lobbying the Indian
government to accept it.
TB and HIV
In India, the Revised National Tuberculosis Control Programme (RNTCP) and NACO
come under the Ministry of Health and Family Welfare. Even in the wake of the
successful Round 3 GFATM proposal to address HIV and TB co-infection (with a total
five-year funding request of $14.8 million and a two-year approved grant funding
31
09781
INDIA
of $2.6 million), there are still many unmet needs and gaps in the coordination of
the national TB and HIV programmes. The gaps are summarized below:
■ No effective implementation of the 'Joint Action Plan' of NACO and RNTCP.
The RNTCR's TB status report (2004) mentions coordination between NACP
and RNTCR Similarly, NACO's annual report (2002-04) mentions a "joint
action plan" between NACP and RNTCP, including joint training activities.
However, there is no widely available public document that outlines a joint
TB/HIV plan. It appears that the coordinated activities outlined in NACO and
RNTCP plans are not being scaled up even though funds were made available
for this purpose.
■ No meaningful involvement of PLWHA in TB/HIV coordination activities.
RNTCP's TB status report (2004) mentions the presence of TB/HIV coordination
activities in 14 states. While the exact level of coordination between the TB
and HIV programmes in these states is not clear, PLWHA do not appear to be
involved in the TB/HIV coordination activities in a majority (if not all) of these
states.
■ Lack of articulation of internationally recommended TB/HIV
collaborative policy and programme guidelines. The National TB
Control Policy (from RNTCP) and the National HIV/AIDS Policy (from NACO)
do include references to TB/HIV programme coordination, but there remain
many important gaps in these policies. Some of the major policies that are
not articulated and have a great impact on the lives of PLWHA co-infected
with TB include: 1) no strong recommendation with regard to the WHOrecommended isoniazid preventive therapy for PLWHA with latent TB
infection; 2) no articulation with regard to the WHO-recommended
cotrimoxazole preventive therapy for TB-infected PLWHA; and 3) no
articulation with regard’to how a TB-infected PLWHA will be connected to
the NACO's national ART roll-out programme.
■ No joint plans with regard to achieving the global targets for TB control.
NACO and RNTCP do not specifically mention action steps in their individual
or joint plans with regard to how their programmes will achieve the following
global targets: G8 Okinawa 2010 targets ("to reduce TB deaths and
prevalence of the disease by 50% by 2010") and the Millennium Development
Goals ("to have halted by 2015, and begun to reverse, the incidence of
priority communicable diseases, including TB").
Major players in AIDS treatment in India
UNAIDS and WHO are providing technical assistance to NACO in various areas
of treatment scale up. An "ARV consultant" has been appointed by WHO to assist
NACO in its ART programme. WHO and UNAIDS offices in India also provide
technical assistance to NACO;’this includes, among other things, assistance in
32
Ira
drafting and finalizing the NACO ART guidelines and policy. It is not clear how
the technical assistance tasks are divided between the UNAIDS secretariat office
in Delhi and WHO's Delhi office. Since NACO does not seem to take seriously the
"3 by 5" targets articulated for India by WHO and has instead set its own targets
(which are grossly inadequate), it seems that the level of coordination between
WHO/UNAIDS and NACO in relation to ART scale up is quite limited.
GFATM and Country Coordinating Mechanism (CCM). India has received
GFATM grants in Rounds 1 through 4 for HIV/AIDS, TB and Malaria. Except for one
NGO principal recipient in Round 4, the Indian government itself has been the
principal recipient of all GFATM grants. So far, India has been promised a total of
$389 million for the lifetime of all its GFATM grants. However, our information is
that of the $107 million approved for Phase 1 grants (initial two years of each
agreement), only $23.8 million has been disbursed. For HIV/AIDS, a funding
request of $241 million over five years has been accepted by the GFATM, with
$48 million approved for Phase 1. Funds disbursed to date for HIV/AIDS total just
$12.5 million.8
GFATM approved a proposal for $100 million over five years and granted $26.1
million over two years in Round 2 with a focus on preventing mother-to-child
transmission, implementing a comprehensive care package for mothers living with
HIV/AIDS and their infants and partners, and enhancing access to antiretroviral
therapy through public-private partnerships. About 4,500 women (and their partners
and children) will be receiving ART through this grant support.9
India also submitted a successful Round 4 proposal to GFATM for $140.8 million
over five years. The proposal, with $21 million granted for two years, focuses on
launching a large-scale, phased initiative on ART access closely linked to expanded
prevention and support as well as increasing the engagement of the private sector
and civil society, including PLWHA.10 About $4.3 million has been disbursed so far.11
The objective of the GFATM Round 4 proposal is to provide 180,000 people with
ART in the public sector by 2010. There were two principal recipients in the GFATM
Round 4 agreement: the Indian government and Population Founddlion of India
(PFI), the leading agency in the NGO consortium.12
Initially there was considerable delay in approving money from GFATM to be used
for these programmes because of stalling by the government's Department of
Economic Affairs. During that period, INP+ wrote to the health minister, asking him
to speed up the process (a reasonable request since the minister once mentioned,
"I would like all the bureaucratic red tape to be cut and converted into red
ribbon").13 The vice chairman of the Indian CCM is K.K. Abraham, president of
INP+. Many reforms are being considered for the CCM, including the establishment
of a CCM Secretariat in Delhi.
33
USAID/PEPFAR: India has been chosen as the one of the countries to be provided
funds through the PEPFAR program. It is not clear how much money will be allocated
for India through PEPFAR.
The government of India as well as NGOs are very concerned about the policies of
USAID/PEPFAR in relation to HIV prevention and care programmes for marginalized
populations like sex workers. Recently, Sangram, an NGO working with the female
sex workers, decided not to accept USAID money because it refused to comply with
the conditions imposed by the U.S. government's Leadership Against Global
HIV/AIDS Act of 2003. Sangram explicitly stated that it z/oppose[d] the conditions
and moral strings that the U.S. conservatives attach to foreign funding."14
*
Earlier this year, even the Brazilian government refused a grant of $40 million from
the United States. Pedro Chequer, director of Brazil's AIDS programme and chair
of the national commission that decided to refuse the grants, viewed the Bush
administration policy as "interference that harms the Brazilian policy regarding
diversity, ethical principles and human rights."15 It would not be surprising if the
Indian government also refuses to accept the U.S. government's money since the
NACP-III draft strategic plan explicitly articulates a "rights based approach" and
states: HRGs [high risk groups] continue to face legal and structural impediments
to adopting safe behaviors such as criminalization and violence. Unless these
constraints are removed at local, state and national levels they will find it difficult
to adopt and sustain safe behaviors."
The Clinton Foundation HIV/AIDS Initiative signed an agreement with NACO in
September 2004 to support scaling up of care and support programs of government
of India. The Foundation will assist the government through training, of medical
professionals and upgrading laboratories administered by the ART program.16
The Bill & Melinda Gates Foundation's India AIDS initiative ("Avahan") focuses
primarily on prevention among vulnerable groups (notably mobile populations and
sex workers) and not on ART delivery or care. Some PLWHA networks are supported
through Avahan projects.
The expanded UN Theme group in India usually invites all the major partners for
its meetings, including USAID, the UK Department for International Development
(DFID), and the Bill & Melinda Gates Foundation. This forum should be utilized for
joint planning to scale-up ART in the National AIDS Control Programmed new
strategy (NACP-III) and beyond.
WHO estimates that between $290 million and $307 million is required to support
scale up of ART delivery to reach the WHO "3 by 5" treatment target of 355,000
people on treatment in India by the end of 2005. The Indian government had
committed $85 million (including funds from a repayable World Bank loan) to
scaling up ART during 2004-2005; taking this and other funds committed to date
34
____ INDIA
into account, WHO estimated that India would face a funding gap of between
$178 million and $196 million to reach the "3 by 5" target.
Five million dollars is the total amount allocated by the Indian government for the
2005-2006 fiscal year for ART provision and service expansion. The World Bank
has provided a loan of $57 million to the government for further ARV scale up and
expansion. DFID is the largest bilateral donor agency in India and provided $44
million to National AIDS Control Program in the current fiscal year (2005-2006).
USAID provided additional funds of $7.95 million this year. USAID supports two
umbrella agencies (Nodal NGOs): AIDS Prevention and Control Project (APAC),
Tamil Nadu; and AVERT, Maharashtra.17 (GFATM-allocated funds for ART initiatives
amount to $12.1 million during the current fiscal year.)
What is needed now
^>7;
4, JJ-
-p
«
• Direct public ART centres to enroll PLWHA even if they satisfy only one of the
eligibility criteria
• Be flexible in eligibility criteria with regard to PLWHA who are already on
first-line ART using their own money
• Develop a plan to provide second-line regimens
• Provide paediatric formulations for ART
• Develop a policy to ensure equity in ART access
• Develop a plan for universal access to ART across the country
• Multilateral and bilateral agencies and donors should provide increased
support and technical assistance for treatment delivery.
• Linkages to care, support and treatment programs should become an
essential component of all prevention programs, including those supported
NACO and outside agencies and donors.
35
|||:|||||.|
INDIA
Recommendations to NACO
1. NACO must direct all public ART centres to enroll PLWHA even if they
satisfy only one of the various eligibility criteria (rather than solely
depending on the criterion of CD4 count less than 200). This is necessary
because even those PLWHA who have had or who currently have an AIDS-defining
illness are not enrolled in the programme if their CD4 count is more than 200
(irrespective of whether they are currently on ART). NACO should strongly advise
public ART centres to follow NACO's implementation guidelines in relation to the
enrollment criteria. An order should be issued to the ART centres by the end of
January 2006.
2. NACO needs to be flexible in its eligibility criteria with regard to PLWHA
who are already on first-line ART on their own money. Since PLWHA who are
personally paying for first-line ART often have CD4 counts higher thbn 200, they
are not eligible to be enrolled in the government programme. Many of these
PLWHA may not be able to continue to afford even first-line ART out of their own
pocket, however. It is therefore important that the eligibility criteria for this
subpopulation of PLWHA be flexible, allowing them to access ART at government
centres even it their CD4 counts are above 200.
3. NACO must develop a plan and mobilize resources for providing secondline regimens in addition to uninterrupted supply of first-line regimens.
Because of viral resistance and side effects, many PLWHA who are currently on
first-line regimens may eventually need second-line ones. Also, those PLWHA who
are currently on second-line ART regimens (using their own money) may not be
able to continue to afford paying for these drugs. It is crucial that a plan to provide
second-line ART in public health centres be developed at least by the end of
February 2006 and that second-line regimens be made available by April 2006.
NACO can consider the formation of a dedicated "treatment fund" to pool
resources from the Indian government and various donors towards ensuring an
uninterrupted supply of first-line ARVs and purchasing second-line ARVs.
4. NACO must place high priority on providing paediatric ARV formulations
in national ART centres. Currently, children living with HIV who need ART are
given adult tablets that are split or powdered; this can result in over- or under
dosage. NACO must develop mechanisms to supply paediatric formulations of
ARVs in public ART centres. The agency should issue a plan to achieve this goal by
February 2006, and the paediatric formulation should be made available at the
centres by April 2006.
5. NACO should develop a policy to ensure equity in ART access. This will
require reaching out to marginalized populations who have difficulty accessing
government ART services. At present, more men than women are enrolled in the
government ART programme—according to NACO, at the end of August 2005,
36
IN D
some 7,660 men and 3,790 women were on ART through public centres. Also,
only 523 children were receiving ARVs at the end of August 2005, even though
the estimated number of children living with HIV in India is 150,000 to 200,000.
Marginalized populations including sex workers, MSM, hijras (transgender women),
and IDUs often have difficulty accessing government ART services. As one doctor at
an ART centre noted, "We are seeing only the clients of [female] sex workers in ARV
centres. Where are the sex workers?" NACO must make a greater effort to achieve
equity in terms of gender, urban-rural residential status, and access to ART for
marginalized populations. A plan for ensuring and monitoring equity should be
available by February 2006.
6. NACO must develop a plan for universal access to ART in India, in
collaboration with multilateral agencies including UNAIDS, WHO and
development partners. The NACP-III draft strategic plan mentions that
approximately 200,000 PLWHA will be provided with ART through the public
sector by 2011. This target is far too low given the size and scope of the epidemic
and the number of those likely to need treatment over the next six years. In
collaboration with multilateral/bilateral agencies and PLWHA networks, NACO
needs to develop a plan for universal access to ART by July 2006.
Recommendations to the multilateral/bilateral agencies
and other major funders
■ UNAIDS and WHO should provide technical assistance to prepare a plan
for universal, access to ART in India by July 2006.
Bilateral agencies should allocate specific funds to support ART delivery in
India in their developmental aid budgets.
M Major funders should donate money for ART delivery (in government or
nongovernmental programs) in addition to supporting prevention
programmes in India.
■
Referrals to and strong linkages with existing care, support and treatment
programs should become an essential component of all prevention
intervention programs, including those supported by NACO, the Gates
Foundation, DFID, USAID, AusAID and others.
37
INDIA
ENDNOTES
1
WHO. Country profile fact sheet. June 2005
*
http://health.groups.yahoo.com/group/AIDS-INDIA/message/3162
3
E-mail communication between NACO and INP +
4
Colebunders R et al. "Free antiretrovirals must not be restricted only to
treatment-naive patients." PloS Medicine 2 (10): e276, 2005.
5
http://www.pharmabiz.com/article/detnews.asp2articleid = 29346
6
Kulshreshtha R, et al. "HIV-2 prevalence in Uttar Pradesh." Indian J Med Res.
1996 Mar;l03:131-3; Rubsamen-Waigmann H, et al. "High proportion of HIV-2
and HIV-1/2 double-reactive sera in two Indian states, Maharashtra and Goa:
first appearance of an HIV-2 epidemic along with an HIV-1 epidemic outside of
Africa." Zentralbl Bakteriol. 1994 Jan;280(3):398-402.
7
Information directly collected from the JN Hospital by Ratan Singh, Manipur
Network of People living with HIV (MNP+)
8
From the presentation of Anandi Yuvaraj, board member of GFATM, in the
national meeting, "Access to ARVs in India: NACP-III and Beyond." Oct. 28, 2005,
Delhi, India.
9
Summary of the proposal submitted by India to round 4 GFATM g*ant.
10
WHO, Country Profile Fact Sheet. June 2005
11
http://www.theglobalfund.org/search/portfolio.aspx2countrylD = IDA - Accessed
on Nov 15, 2005
12
In an application to Round 4 of the Global Fund, a group of NGOs including
INP+ formed a consortium and submitted a joint proposal to the Fund with PFI as
the lead agency.
13 NACO newsletter, Vol-1, Jan 2005
14
http://health.groups.yahoo.com/group/AIDS-INDIA/message/5059
15
Phillips, M., et al. "Brazil Refuses U.S. AIDS Funds Due to Antiprostitution
Pledge." The Wall Street Journal, May 2, 2005.
16 NACO Newsletter. March 2005. Vol-3. P-2. Available online at www.nacoonline.org
17 From the presentation of Sherry Joseph, Futures Group, entitled Allocation under
GOI’s health budget1 in the meeting - Access to ARVs in India: NACO-3 and
Beyond', New Delhi, Oct 28-29, 2005
2
38
A
KENYA
By Elizabeth Owifi,
Healthpartners, Kenya;
I James Kamau,
y Kenya Treatment Access
Movement (KETAM);
Dr. Bactrin Killingo,
Meru Hospice and KETAM
In the world out there people will not be very
kind to you once they find out that you're
HIV-positive.
— Kenyan living with HIV
The Kenyan government declared HIV/AIDS a
national disaster and a public health emergency
in 1999. Five years later, in 2004, it instituted
guidelines for HIV testing in clinical sites. Today,
between 820,000 and 1.7 million people are
thought to be living with HIV/AIDS in Kenya, and
at least 180,000 die from HIV/AIDS each year.
There are more than 1.2 million children under
15 who have been orphaned because of the
AIDS-related death of parents.
Approximately 220,000 Kenyans need ART as of
2005, and the WHO "3 by 5" target was 110,000
people (based on 50% of need). The country's
own national treatment target for 2005 is to
reach 95,000 people. In 2003, the government
provided ART to an estimated 1,000 people,
and an additional 10,000 individuals received
treatment from other sources. Disbursements from
a Round 2 GFATM grant are expected to enable
treatment of 4,000 more people over two years
and will fund the training of 1,800 health workers.
PEPFAR has said it plans to provide 45,000
Kenyans with ART treatment by the end of 2005.
Other sources may support treatment of an
additional 7,000 people.1
1 Based on WHO and Global Fund documents.
39
1
How the research was conducted
• 113 confidential survey
forms filled in by PLWHA
and their direct service
providers in several regions
• Review of key documents,
including GFATM proposals
and reports as well as
PEPFAR and WHO
documents
Major barriers to treatment
delivery:
• Stigma and discrimination
• Inadequate treatment
literacy programs
• Food and nutritional issues
• High poverty levels
• Delays in releasing funds
• Poor infrastructure
KENYA
Research methodology
The Kenya report emphasizes the collection of information and opinion from
a relatively large number of PLWHA and people who interact with them
directly, including their doctors, nurses, and community group leaders.
Three researchers were identified, recruited, and trained as to the objectives of the
study and the data collection tools. Training lasted one day and principally consisted
of discussion of the survey tools and adjustments to the instrument where needed.
The data was collected using structured questionnaires, which were filled out by
each survey participant. Several literature sources were also reviewed durinq the
study.
Over 100 people were interviewed. These included PLWHA (78 individuals), health
care workers (23), and staff from the National AIDS Programme team, PEPFAR,
faith-based organizations, community-based organizations and other institutions
involved in treatment scale up (14). There were three researchers and three
research assistants on the Kenyan country team. The survey was carried out among
more than 20 organizations.
It is important to note that some individuals in key government agencies declined
requests to participate in the survey. Although it was not possible to’collect
information from them and from some other relevant sources, the size and scope
of the research offer a unique perspective on the barriers to treatment access.
Moreover, the recommendations are derived in large part from comments and
insight from individuals directly involved in service delivery: PLWHA and front-line
health care workers. This is in sharp contrast to the fact that even some supposedly
qualified doctors were not well versed in HIV/AIDS care and treatment, ART issues,
and the barriers to treatment scale up.
Key barriers
Stigma and discrimination
Research indicated that stigma and discrimination are the most significant barriers
to treatment scale-up. Even when ART is available and financially viable, the social
barriers remain strong.
Patriarchal cultures in almost all communities have caused gender inequalities. In
one community, women needed permission from their husbands to enroll in an ART
programme. Neglect, abandonment and, in one of the communities, "mercy" killing
are persistent practices.
Myths and misconceptions are significant barriers to HIV treatment. In some areas
HIV infection is still seen as a curse, which therefore means there is no need for
40
■
KENYA
medical intervention. No cure exists, hence there is no need to take medication;
death is inevitable.
Some religious groups encourage faith healing in place of conventional medical
intervention. Although some traditional healers have played an important role in
helping PLWHA get access to ART, many others have discouraged HIV-positive
people from seeking proper, acceptable and well-researched modes of therapy.
Nomadic life causes difficulty in initiating and following up with treatment. Few if
any programmes focus on the needs of the large number of refugees and internally
displaced people in Kenya. There are no fora to address the specific treatment
needs of women.
The study found that many of the PLWHA surveyed had resisted seeking HIV/AIDS
care and treatment because of fear of how their own immediate family members
would react if they discovered their HIV-positive status. Some respondents also
expressed concern about how they would be treated by care providers themselves
once their HIV status was revealed. HIV-related discrimination is common in the
workplace, with PLWHA at high risk of being fired if their status is known to an
employer. Factors such as this mean that many PLWHA do not seek out care even
when they really need it.
Among the specific instances of discrimination against PLWHA described in the
research were the following:
■
Some treatment sites have rooms specifically named "HIV clinic", which
dissuade some people from seeking assistance because they fear being
identified.
■
Medical records such as enrollment cards have different colors for PLWHA,
making them distinct from others.
■
HIV-positive in-patients do not get the same quality
(Tare thatjs
quality of
of fare
thatjs given
given to
to
others. This is common in government-run hospitals.
Those with advanced AIDS are often neglected and/or abandoned in hospitals
and left to die.
The following comments from survey respondents provide examples of how
extensive discrimination and fear regarding HIV/AIDS are in Kenya.
I disclosed my HIV status to some health workers at a dispensary.
They refused to treat me, and referred me to Kenyatta National
Hospital instead.
— Kenyan living with HIV
41
KENYA
The discrimination I experienced from the nurses was serious.
Once I revealed I was HIV-positive, no one wanted to assist me at
delivery.
— Kenyan living with HIV
In the world out there people will not be very kind to you once they
find out that you re HIV-positive. Even though the disease has been
around for a long time and awareness is greater, people are still
scared to seek treatment or even testing when they suspect they are
infected.
— Kenyan living with HIV
The stigma associated with ART drugs and HIV/AIDS is another big
barrier,; as people would rather not be seen with the drugs.
— An ART co-coordinator at a district hospital
Young girls like me have not accessed treatment because we are
afraid of what people like nurses will say, and we are even scared
of being recognized as HIV positive.
— Young Kenyan living with HIV
Inadequate treatment literacy programming and resources
There are no comprehensive treatment literacy programmes in place at most of
the sites visited. ART awareness campaigns are often passive, uncoordinated,
inappropriate, irregular, and ineffective—and appear to have little effect on '
eliminating misinformation among both HIV-positive and negative people about the
disease and ART. Consequently, many PLWHA are not visiting health care centres or
following recommended ART regimens. Since many PLWHA do not know about or
understand when they should seek care or why, they often wait until they are too
sick for treatment to help.
Many PLWHAs surveyed also pointed to a lack of comprehensive literacy programmes
in most care and support centres they visit. They added that where there is
information, it is incomplete or confusing and may not even be available in local
languages.
These issues are highlighted in the following comment from a survey respondent:
Most people here are still ignorant about treatment. They do not
understand the advantages and benefits of treatment.
— An ART treatment co-coordinator at a district hospital
42
w
Food and nutritional issues
Many PLWHA are unable to afford enough food/ let alone d balanced diet. Some
respondents expressed concern that without good nutrition ART could not be
effective since some PLWHA were already very weak—and that this was not due
to their HIV status but to lack of adequate food.
Without proper nutrition, it's pointless to take drugs as they are
absorbed into the blood stream faster and hence their action is
short lived as compared to when you eat and absorption is
systematic and very little drug goes to waste through excretion.
Food will also build the body and make one stronger, without
which drugs may overpower the PLWHA.
— Kenyan nurse
Truly speaking, the food you eat will have a direct effect on your
progress.
Kenyan living with HIV
High poverty levels
Poverty was also highlighted as a major barrier to treatment scale up. Some of the
respondents indicated that they were unable to afford some or all of the following:
transport to health care centres; payment for even the most basic tests that were
necessary before treatment could begin; nutritious food for themselves and family
members; or medications for opportunistic infections even when ART was provided
for free.
These issues are highlighted in the following comments from survey respondents:
Poor people do not have the money to be able to access health
care, even those provided free of charge such as VCT.
— Nurse
Sometimes I do not have bus fare to come here for my drugs so /
miss out while others get them.
— Kenyan living with HIV
People in rural areas and even here in Nairobi are finding it very
costly and tiring to go to concentrated health centres for services
even though they are free. Sometimes one is too sick to go to the
hospitals, which are often too far away. There is no energy to walk
those long distances.
— Kenyan living with HIV
43
KENYA
Delays in releasing funds
Many respondents identified bureaucratic delays in releasing GFATM money and
other promised aid as a major barrier to scale-up. The GFATM process on its own
seems unnecessarily cumbersome. The Ministry of Finance is the principal recipient
of the lion's share of GFATM assistance in Kenya, and from there the funds must be
transferred to the Ministry of Health. We have been told that from there, funds are
supposed to flow to the National AIDS Control Council (NACC) for disbursement to
NGOs and health care facilities that actually provide treatment and service.
Poor infrastructure
Many health centres are not well equipped for treatment scale up. The number of
centres devoted specifically to HIV/AIDS treatment has increased as PEPFAR and
other programmes have scaled up their efforts, but many PLWHA are still far away
from the nearest ART centre and thus have problems accessing care. Recent figures
on the type and number of facilities providing ART in Kenya are noted below:
Type of facility
Public hospitals
Mission hospitals
Private hospitals
NGOs
Researchinstitutions
; J:
■:
■'
?
_____________
:/■
<
Total
I
No. of Sites
94
61
10
5
24
194
In general, the health sector does not have sufficient experience or capacity to
handle rapid ART scale up. Nearly all partners are earmarking money and other
resources toward capacity building and training to address this situation. These
shortfalls persist even though Kenya has a large number of trained health care
workers currently unemployed because the government cannot afford to pay them.
Accountability: the major players
It is important to note that most of the PLWHA interviewed did not understand the
role of most multilateral or bilateral organizations involved in Kenya's HIV/AIDS
response. A significant number did not even know that such institutions exist.
GFATM
The Kenya GFATM programme aims to greatly expand voluntary counseling and
testing (VCT) so that it is available to one million Kenyans within five years. GFATM
44
KENYA
monies will also be used to provide care services, including ART. Furthermore, the
grant includes funds to build institutional capacity in government and civil society
structures.
Many respondents agreed that GFATM assistance has been quite successful to date
in two notable areas: funding key CBOs and NGOs, and coordinating activities with
those of the government's National AIDS Strategic Plan.
GFATM administrators need to find a way to improve monitoring and evaluation of
activities to ensure proper programme implementation. They should also increase
the rate at which funds are disbursed so that implementation delays are reduced.
GFATM should also mobilize more funds to increase treatment scale up in especially
resource-constrained settings.
UNAIDS
Most respondents were not aware of the roles and responsibilities of UNAIDS in
Kenya. Those who were aware said they see it as a provider of up-to-date
information and evidence-based documentation on HIV/AIDS.
World Health Organization
If WHO is known at all (and it was not by most respondents), it is recognized as the
world health governing body with a mandate to respond to diseases at a global
level. Respondents said that more attention should be given to Africa, the continent
hardest hit by the HIV/AIDS pandemic.
WHO needs to interact more closely with individuals (such as PLWHA) and
organizations (such as advocacy groups and NGOs) involved in responding to
HIV/AIDS outside of government structures such as the Ministry of Health. One
respondent, a doctor, said that WHO should offer revised guidelines for rural
versus urban situations.
PEPFAR
Only respondents working in PEPFAR-sponsored facilities seemed to know about
PEPFAR. To them, its main role appeared to be to provide funds for prevention as
well as care, treatment and support of PLWHA.
PEPFAR funds entities at the local level directly and has helped put many Kenyans
on ART. The few respondents who know and work with PEPFAR said they found it
more effective than the government in getting funds to treatment providers and ART
to PLWHA. A few said that PEPFAR needs to link up with other bodies, but they were
not specific in how this might work.
45
KENYA
National AIDS Control Council (NACC)
NACC, the main government agency focusing on HIV/AIDS, coordinates all HIVrelated activities in Kenya, including provision of HIV/AIDS treatment guidelines.
It also funds treatment, care and support programmes through grants to NGOs,
FBOs, and CBOs working in HIV/AIDS field. Concerns about corruption have been
raised in the past, but the agency now seems to be addressing them. Respondents'
main concern was the length of time it takes funds to flow from other layers of the
government to NACC for disbursement to those providing direct services.
What is needed now?
•
Address stigma and discrimination issues through anti-stigma programmes
and other efforts
•
Launch major treatment literacy campaign
♦
•
Coordinate with the World Food Programme and other organizations to
address food and nutritional issues
•
Provide free drugs and stipends for transportation for PLWHA
•
Cut down delays in releasing funds
•
Work with donors to hire and train more health care workers
46
KENYA
Recommendations
Systematically address stigma and discrimination issues
■ Establish national policies on discrimination
■
a
Develop specifically targeted social marketing campaigns to combat
discrimination
Establish more fora and programmes to address cultural issues of
discrimination against women
Establish a commission to identify and remove obstacles refugees face
in access to ART
Launch a major treatment literacy campaign
B
B
Set up fully funded comprehensive literacy programmes
Ensure the comprehensive involvement of PLWHA in literacy programmes,
formulation of information, education, and communication (IEC)
strategies, and aggressive awareness campaigns
8 Translate materials into local languages so that trainers and counselors
are able to communicate more effectively with all people
Coordinate with the World Food Programme and other relevant
organizations to address food and nutritional issues
B Set up a coordinated national project to address food shortages and
nutritional inadequacies
B Work more closely with international agencies on these iss*ues
B Explore providing supplements and food as part of an ART package
of essential interventions
Provide free drugs, stipends for transportation, and other assistance for PLWHA
B
B
B
B
Make testing and Ol drugs free for people receiving ART
Provide income-generating projects for PLWHA
Provide transportation stipends for PLWHA
Obtain more mobile units to bring ARVs and supporting treatments closer
to PLWHA's homes
Cut down delays in releasing funds
B Streamline how funds flow through the government bureaucracy
B Reduce the steps needed to get funds from GFATM to primary treatment
providers
47
KENYA
■ Conduct fund flow process audits to ensure that all funds that should be
■
■
going to provide treatment are indeed getting there. Analyze overhead
costs at each level of bureaucratic transfer and seek to ensure that corrupt
"skimming" practices are eliminated
Set a specific deadline (e.g. 10 days) for time froiti release, of GFATM
monies to Ministry of Finance to their disbursement to treatment centres
Determine process so that more funds can go directly to providers (rather
than through multiple layers of government)
Ensure that all recipient health care facilities, NGOs, FBOs, and CBOs
operate transparently and efficiently—and are free from corruption.
Develop policies, processes, grading and punitive measures to enforce
Hire and train more health care workers
■ The Kenyan government, donors, and international agencies should put
■
■
■
specific plans in place to ensure that there is very little health care worker
unemployment in Kenya—thus reducing the strain on the health sector
caused by human capacity shortfalls
The macroeconomic policies of the International Monetary Fund and
World Bank tend to discourage increased public spending, therefore
restricting expansion in the health sector. These institutions should
acknowledge their role in perpetuating ongoing shortfalls in the supply
of health care workers. Furthermore, they should be lobbied to reverse
constricting policies and to work closely with the Kenyan government to
provide sufficient resources to boost health sector capacity and expertise
Implement subsidies and enhanced compensation plans to decrease
"brain drain" of doctors
Work with donors to hire and train more health care workers (PLWHA
should be trained to be peer adherence counselors and educators)
48
►
NIGERIA
How the research
was
conducted
1
..
By Olayide Akanni, Journalists Against AIDS Nigeria;
Bede Eziefule, Centre for the Right to Health;
Tobias Luppe, Medecins Sans Frontieres
• 14 key informant interviews
with representatives from
the government, multilaterals,
service providers, NGOs
and FBOs, and PLWHA
support groups
There must be a willingness on the part of
government to channel resources to the
programme. Political will must drive the
process of policy implementation.
— NGO care provider
• Literature review, including
national treatment plan,
policies and guidelines on
ART, and media reports
Background: HIV/AIDS in Nigeria
Major barriers to treatment
delivery:
HIV/AIDS is a leading health problem and
developmental challenge in Nigeria. An estimated
3.5 million Nigerians are living with the virus,
and about 500,000 currently require ART. The
government's decision to initiate a subsidized
ART programme was announced by President
Olusegun Obasanjo in 2001 at the African Heads
of State Summit. At that time the target was to
provide treatment to 10,000 adults and 5,000
children. Now, four years down the line, the stakes
are much higher. More PLWHA need treatment,
and enormous resources are required.
In June 2005, the president set a new target,
aiming to place 250,000 PLWHA on ART by the
end of 2006. Currently, with additional funding
from GFATM and PEPFAR, over 30,000 people
are receiving ART While efforts are ongoing to
rapidly scale up treatment to meet the new targets,
several limitations pose significant challenges.
49
• Inequitable distribution of
treatment centres in the
country
• Lack of financial, human,
and” infrastructure
resources
• High cost of treatment and
CD4 and viral load tests
• Inadequate coordination
among providers, the
government, outside
agencies, and TB programmes
• Bureaucratic delays
• Stigma against people
living with HIV
• Lack of treatment literacy
programmes
a®
Primary barriers to treatment scale up include insufficient resources (financial,
human and infrastructure); poor decentralization and uneven distribution of t
reatment centres by government and development partners; poverty; high costs
associated with treatment; stigma; lack of youth-friendly services; and bureaucratic
delays.
Research methodology
Information for this report was gathered primarily through interviews with 14
individuals working in different areas of the response to HIV/AIDS. The research
team interviewed representatives of the National Action Committee on AIDS
(NACA), multilateral and bilateral organizations, public and private ARV service
providers, international NGOs^ and PLWHA receiving ART at treatment centres
across the country.
Key barriers
Five years ago, accessing ART in many parts of sub-Saharan Africa was a rather
expensive venture, prohibitively so, for most PLWHA in the region. The situation
was the same for PLWHA in Nigeria. Access to treatment was very limited and
when available it costs as much as N 15,000 ($120) a month. However, the launch
of a subsidized national ARV treatment programme in January 2002, as well as
initiatives by private NGOs and PEPFAR, have contributed to expanding the number
on treatment to some 30,000 people. This is an important development, but a
daunting challenge lies ahead to increase that to 250,000 people by the end of
2006. As 2006 draws near, several hurdles stand in the way of making expanded
treatment access a viable possibility.
The stress of having to- travel a long distance to access ARVs is
almost unbearable for people living with HIV. Donor agencies
concentrate too much of their activities in the cities leaving the
communities.
— Coordinator of a PLWHA group in Ekiti state
Inequitable distribution of treatment centres
I
In 2002, the national treatment programme commenced in 25 centres across the
country. These 25 centres are located in only 17 of Nigeria's 36 states, with seven
centres situated in the Federal Capital Territory alone. Donor preferences contribute
to the uneven distribution of centres, as funders tend to concentrate’their activities
and service provision in specific states. For instance, the PEPFAR programme
currently operates predominantly in the same states where the federal government
is implementing its treatment programme, although PEPFAR also plans to expand
services to other states soon. »
1
50
NIGERIA
IWl
Several PLWHA who are not residents in any of these "fortunate" states have to
travel distances of up to 300 kilometers (in some cases mote) in order to access
ART. PLWHA spend an average of four to five hours traveling between their home
and treatment centres, and the travel costs are significant.
As one care provider based in the southeastern part of the country observed, "The
sites are not enough. People travel days and miles before they can have access to
the sites. Clients pay heavily on transport and accommodation."
Insufficient resources (financial, human, and infrastructure)
Available resources are not sufficient to treat the number requiring
treatment.
— Official of the National Action Committee on AIDS (NACA)
There are simply not enough resources available as yet to meet
the need. Capacity to deliver services at all levels is seriously
constrained by the lack of skilled human resources.
— Staff member of an international NGO providing HIV/AIDS
services
Although African heads of state at the Abuja Summit had committed to spending
15% of their annual budgets on health, this commitment is still not being fulfilled in
Nigeria. Today, less than 7% of the annual budget is devoted to the health sector
Scaling up to provide ART for 250,000 PLWHA will require enormous financial,
human, and infrastructure resources. The funding at hand is grossly insufficient. In
2004, the government allocated N1.5 billion ($11.58 million) for procurement of
ARVs. This excludes other associated costs such as staff salaries, monitoring tests,
and laboratory equipment. As a result, scaling up to 250,000 people will require
about 12 times more money than what was budgeted in 2004.
Nigeria has received some funding from GFATM to scale up its ART programme.
More recently, with the commencement of the PEPFAR programme, additional
support is now available for treatment scale up. But pumping financial resources
into health care facilities is just one of the many interventions required for making
a change the existing health care system needs to be strengthened as well. "Poor
health infrastructure for scaling up of ART is a major limitation that also needs to be
addressed," one interviewee said.
Additional burdens are being placed on the heath sector as a result of new and
emerging diseases, brain drain, and poor working conditions. Health care
personnel are overburdened and underpaid, a situation that has resulted in
frequent strikes by health care workers in government facilities in recent years.
51
'pro 32^-^
09781
NIGERIA
As a care provider in one of the treatment sites observed, "There is a heavy work
load on health care workers. This has reduced the contact time we spend with our
patients. Manpower should be increased all over the country so that patients need
not crowd a particular centre."
In addition, most of the ART centres still lack facilities for
preparatory training and
counseling of patients prior to commencing treatment as well
—I as adherence support.
A PLWHA who is also a care provider noted that "proper education
- i or counseling is
generally not done in our hospital settings."
Poverty and affordability of treatment
Fees for sen/ices constitute a major barrier to access and utilization.
— Service provider in Nigeria
Several respondents said that cost remains an important barrier to treatment for
many PLWHA. Although beneficiaries on the federal government and PEPFAR
programmes must pay N 1,000 monthly ($8) a month for ART, the total out-ofpocket expenses (an estimated $300 annually) incurred by clients on ART is
burdensome to many who are barely making ends meet. These costs are even higher
when drugs are obtained from private foundations or NGOs offering treatment.
(One international NGO currently offers treatment free to PLWHA in Lagos.)
Most clients still have to pay for the associated costs of diagnostic tests, transportation,
and treatment of opportunistic infections. Those who are able to access treatment at
the federal ART centres still pay about $50 every quarter to undergo CD4 and viral
load tests. This cost represents a major impediment to care’for many. Although the
PEPFAR treatment sites now offer free CD4 count and viral load tests for clients,
these sites are not located in all the states.
Many PLWHA still need to travel long distances to access any services, regardless of
the provider. Good nutrition is’essential to achieving the maximum benefits of ART,
yet many PLWHA are poor and unable to purchase nutritious food.
The federal government is not putting in enough money for the
comprehensive treatment of patients. Patients bear 35% of the cost
of ART. They have to pay for costly monitoring tests and drugs for
opportunistic infections.
Member of the National ART Committee
52
NIGERIA
Stigma
Stigma discourages people from coming out and getting tested.
Nobody wants to test positive because of negative societal attitude
to those who are HIV-positive.
Nigerian living with HIV
The fear of stigmatization causes some PLWHA to go to remote
areas in search of treatment.
Nigerian living with HIV
Late presentation of patients due to the stigma is a major concern.
Health workers in both public and private sectors need to be more
compassionate and receptive towards PLWHA.
— Care provider
A number of PLWHA interviewed reported that some of their colleagues do not
access services in certain centres because of the discriminatory attitudes of care
providers. This situation is even worse if a client also suffers from TB/yiV co-infection.
One respondent observed, "Hospital personnel tend to stigmatize patients that are
coughing.' Several respondents also noted that some of the existing sites are not
youth-friendly.
In tandem with concerns about affordability, stigma most likely represents the main
reason that treatment uptake remains rather slow in some areas of the country As
a clinician in one of the "concentrated" states observed, "We do not have any major
barriers so to speak, except that we need more people to be enrolled in our scheme
because we have capacity for more."
Also notable is that accessing treatment from the public programmes is a distasteful
option for the few PLWHA who can afford to purchase their medications privately
from pharmaceutical companies, at a cost of about $40 per month.
Some individuals who are not yet on the treatment do not want
to enroll in government sites because of their non-friendly*
dispositions. Many on treatment are opting out.
— NGO representative
53
W!
I
NIGERIA
ill!
Poor coordination among actors
Donors tend to run parallel programmes rather than support the
national programme. '
— NACA representative
Several respondents emphasized the need for better coordination among the key
players providing treatment, stressing the need for the government "to demonstrate
firm leadership and ownership of programmes, particularly with respect to funding,
structures, and implementation of activities in order to guarantee programme
sustainability."
Respondents also highlighted the importance of buying into the government
programme rather than creating parallel structures, which is what PEPFAR is
frequently accused of doing. A unified structure is consistent with what is being
advocated under UNAIDS' "three ones" principle.
At the international level, donor agencies should respect, identify
with and submit to the.good directions of countries and play down
their own agenda.
— Member of an international NGO providing HIV/AIDS services
Insufficient treatment literacy
The lack of proper knowledge and treatment possibilities creates a
vacuum, and provides the opportunity for religious groups and all
kind of charlatans to lure PLWHA into spending their meager
resources on their alternative treatment options instead of aoina
for ARVs.
— Service provider
Accessing treatment is only the first step for PLWHA on ARVs. Often, those who
access ART are not adequately, counseled at the point of service provision about
adherence, compliance, and issues relating to making treatment work. Some
PLWHA have reported stopping treatment without consulting their physicians
because they felt better or developed side effects. Although a number of PLWHA
support groups and other NGOs have commenced treatment literacy workshops/
training programmes for PLWHA and care providers, scale up of such interventions
is needed in order to enable PLWHA to make informed decisions about their own
health.
54
Bureaucratic delays
It takes time to implement even accelerated
accelerated directives
directives by
by policy
policy
makers. The civil service procedures are slower than is needed for
rapid responses to the epidemic
— UN agency representative
There are too many hurdles and protocols in government activities
leading to delays in releasing funds for HIV/AIDS activities. The
purchase of drugs and disbursement to centres as well as scale up
are slow.
•
— Nigerian living with HIV
Treatment scale up efforts in Nigeria have been plagued with several delays.
After the ART programme commenced in January 2002, it was expected to scale
up from 25 to 100 treatment centres within a year. Scale up has indeed moved
forward, although quite slowly. The paediatric arm of the programme, which was
supposed to begin in 2002, only started operating in early 2005. At the initial
stages, managing the existing National ARV programme proved problematic. In
2003, delays in purchasing new drug supplies, coupled with over-enrollment of
clients, led to ARV stock outs for up to two months in many centres, thus forcing
some PLWHA to share medications or interrupt their treatment.
TB and HIV
Mechanisms exist for linkage between TB and HIV; however, they
are not well established.
— Care provider
There is no intensified effort presently to screen for TB among all
HIV patients. However, those patients with a chronic cough are
screened for TB.
— Care provider
Other than the clinicians interviewed, very few respondents working in the field
of HIV/AIDS were able to provide information on the incidence of TB, treatment
of the disease among PLWHA, or the roles of the National TB and Leprosy Control
Programme. This in itself indicates a troubling lack of coordination among the HIV
and TB programmes in Nigeria. Information on TB-related activities is still limited to
policymakers and health care providers, and PLWHA do not appear to be widely
aware of TB services.
55
NIGERIA
There is a draft national strategic plan for TB/HIV collaborative activities, and
intensified screening for TB among PLWHA is listed as a priority. Guidelines developed
for the administration of ART recommend the administration of isonFazid preventive
therapy in PLWHA who are infected with latent TB. It also recommends coi
preventive therapy for HIV-infected TB patients. However, only one of the
care
providers interviewed for this report said he administered isoniazid.
Cotrimoxazole administration is not being routinely provided in existing centres.
Clearly there is still limited awareness about the policies on TB and HIV and
discordances between policies and practice still exist.
The work of the key players
Several respondents said that there was poor coordination among many of the
multilateral, bilateral, and national partners working on ART delivery, and that
each of these organizations seemed to be pursuing its own separate agenda.
Other respondents had only vague ideas of the roles and responsibilities of the
various domestic and international organizations involved in scale up.
PEPFAR and GFATM were both repeatedly identified as organizations that were
doing their "own thing" and failing to align their work with partners. Many
respondents emphasized the need for the organizations to recognize the national
coordinating authority as well ns respect its views in the response to HIV/AIDS.
WHO and UNAIDS
Several ^respondents highlighted the fact that WHO is responsible for meeting the
3 by 5" target. A few felt that WHO had not been particularly visible in Nigeria;
others said that WHO works largely with the government but should expand its
interaction with and support for NGOs.
Respondents noted that UNAIDS had been quite successful in its coordination with
other partners, particularly with regard to promoting the implementation of the
Three Ones principles, its support of the national response, and its provision of
technical assistance to the government in the formulation and implementation of
HIV/AIDS policies.
Interviewees urged UNAIDS to_ play a more supportive role with civil society groups,
improve networking with people at the grassroots level, and expand its presence to
every state. Several interviewees said that UNAIDS and WHO need to improve their
coordination with PEPFAR and other organizations involved in scale up.
GFATM
GFATM's important role in supporting the implementation of HIV/AIDS (particularly
in expanding access to treatment) and malaria programmes in the country was
56
NIGERIA
recognized by the majority of the respondents. A few said they did not think that
the work of the Fund was welFcoordinated with other partners.
Some respondents also stressed that the CCM must be more effective in order to
foster greater collaboration. According to one interviewee, "The CCM needs to work
more closely with all partners at all times, and not only for proposal writing. The
Global Fund needs to be less bureaucratic."
Particularly worrying is the fact that GFATM has judged both of Nigeria's two main
Round 1 GFATM grants for HIV/AIDS—for the expansion of the national PMTCT
and ART programmes—to be non-performing. This means that they are at risk for
termination rather than Phase 2 renewal.
GFATM administrators are concerned that Nigeria has not demonstrated sufficient
capacity to achieve the grants' goals because of slow disbursement of funds,
insufficient and unreliable data, and late and insufficient reporting. Both the
Principal Recipient, the National Action Committee on AIDS (NACA), and the
sub-recipient, the National AIDS and STD Control Programme (NASCP), have
been specifically criticized by GFATM for limiting the grants' effectiveness.
Failure to secure Phase 2 renewal grants could have devastating consequences for
the thousands of Nigerians who benefit from the GFATM-supported services now
or would likely do so in the future. It would also mean that the country would fall
further behind in its efforts to reach the target of treating 250,000 PLWHA by 2006.
Several civil society representatives have created a pressure group to address the
GFATM-related challenges, including lobbying to strengthen the grants'
implementation and ensuring renewal.
PEPFAR
The PEPFAR programme currently supports both prevention and treatment services
in Nigeria and operates in different locations across the country. There is a general
understanding that the programme aims to support the national treatment
programme. It is responsible for "provision of drugs and laboratory services at
subsidized rates."
A number of respondents felt that PEPFAR should do a better job of working with
other treatment programmers in the country. It "must align more towards other
programmes," according to one respondent. Others called for the programme to
expand services beyond the current "cluster areas", strengthen treatment education
services, engage more closely with communities, and ensure youth-friendly services.
One respondent suggested PEPFAR provide free access to ART, and another urged
the programme to use fixed-dose combination (FDC) therapies. "PEPFAR needs to
consider use of FDCs instead of branded drugs in the first line," he said.
57
NIGERIA
National AIDS programme
In recognition of the need to scale up a multisectoral response from,all sectors of
government and civil society, the federal government established key institutions
including NACA and the President's Committee on AIDS. One of NACA's key
responsibilities is coordination of the national response to HIV/AIDS. As outlined
by one respondent, NACA is responsible for "setting national priorities; ensuring
coordination; and effective utilization of resources for greatest impact."
Respondents said that NACA needs to work to strengthen human capacity
(particularly programming capacity) and increase its engagement with civil society.
NACA should play the leading role in the implementation of the national ARV
programme. "Its role needs to be acknowledged by partners," one person said.
National AIDS and STD Control Programme (NASCP)
A division of the Federal Ministry of Health's Department of Public Health, NASCP
manages the health sector's response to HIV/AIDS. NASCP is responsible for
•
•
•
formulating and disseminating national health sector HIV/AIDS policies
and guidelines;
providing training and technical support to state and local government
control programmes^ health care facilities, and development partners; and
facilitating the procurement of ARVs for the government's plan of action
for broad access to ART.
NASCP provides technical oversight for the government's ART programme. However,
none of the respondents referred to its role in the course of the interviews, probably
because the interview template did not ask about the organization. (Interviews with
a member of the NASCP staff were slated and a questionnaire provided for his
perusal. However, despite several follow-up calls and visits, no response had been
obtained by the time this report was prepared.)
Civil society: Civil Society Network on HIV/AIDS in Nigeria (CISNHAN)
*
Several civil groups exist in Nigeria. CISNHAN serves as the umbrella body
comprising PLWHA support groups and diverse HIV/AIDS service organizations
focusing on prevention, care and treatment. Many survey respondents observed
that the group is still evolving., One respondent commented that the civil society
network has "an important, but yet unrealized role to play." Respondents pointed
out that CISNHAN needs reorganization and refocusing and requires significant
outside investment.
58
NIGERIA
National TB Control Programme
The National TB and Leprosy Control Programme (NTBLCP), under the Federal
Ministry of Health, is responsible for controlling the spread of TB as well as planning
and implementation of TB control activities in Nigeria. The country ranks fourth out
of the 22 high TB-burdened countries in Africa.
Most respondents had no comment on the activities of the programme, explaining
that they did not have sufficient information.
Although the incidence of HIV has contributed to a resurgence of TB in the country,
many of the respondents observed that the linkage between TB/HIV programmes is
still weak and needs to be strengthened. This would, they said, improve the capacity
of the NTBLCP to achieve its mission.
• Expand geographic reach of services beyond cluster zones
• Include more NGOs in service provision
• Live up to resource commitments
• Make treatment and CD4 and viral load testing free
• Work with donors to strengthen the overall health system
59
■
NIGERIA
Recommendations
Several actions, listed below, should be undertaken immediately to facilitate ART
scale up in Nigeria.
1. Expand geographic reach of services and partner with NGO providers
Government and key actors need to work together to ensure that services are
equitably distributed and placed within the reach of those who need them. Donors
should support creation of new treatment sites and move away from concentrating
services in cluster zones". Credible NGOs should be supported in providing services
at more sites. As one interviewee said, "Decentralize the centres! Donors should
work with more organizations and not necessarily concentrate on those they have
worked with previously. In negotiating with the government, donors should encourage
work with NGOs and community-based groups that are closer to the people."
2. Live up to resource commitments
The simple truth is that greater resources are needed from both donors and the
national government to significantly expand, and sustain, the reach of ART. The
national government should fulfill its commitment to the Abuja Declaration and
invest 15% of the national budget in health care. As one interviewee said, "The
government needs to properly budget for the ART programme and release the
funds when due. There must be transparency and accountability in the use of the
drugs from the top to the bottom." Another urged the Nigerian government to
"considerably beef up its financial and human investment in the primary healthcare
sector in order to make HIV/AlDS care possible."
3. Make treatment free
When AIDS treatment and associated tests cost money, poor people are denied life
saving care. ART roll out so far in Nigeria demonstrates that ART and other HIVrelated services must be provided free if the poor are to benefit, and the government
needs to take the lead in making free care a reality. One respondent put it simply:
Drop the user fees and provide free and comprehensive care."
4. Strengthen the health system
The government, with support from its international partners, needs to place greater
emphasis on health systems strengthening—providing the necessary infrastructure
for efficient scale up as well as hiring and equipping health care workers with the
required skills to carry out their duties. Remuneration of health care providers
should also be reviewed appropriately.
60
H II ■
How the research was conducted
By Shona Schonning,
Community of People Living with HIV/AIDS
With assistance from:
Irina Diabaldt,
Community of People Living with HIV/AIDS
Daniel Novichkov,
Community of People Living with HIV/AIDS
Dmitry Samiolov,
Community of People Living with HIV/AIDS
Ilya Kondtatiav,
Positive Initiative
Timur Islamov,
Doverie
Slava Tsunik,
• 13 confidential interviews
with representatives of
government, activist, NGO,
and PLWHA organizations
in several regions
• Review of key documents,
including GFATM proposals
Major barriers to treatment
delivery:
__
• Faulty drug procurement
system
Kovchek Antispid
If we fail, our shame will be infinite.
• Lack of communication and
collaboration among
providers
— Anonymous representative from the Russian
Ministry of Health and Social Development
• No national treatment
protocol
Russia, home to Europe's largest—and the world's
fastest-growing—HIV epidemic, is entering an era
of rapid preparation for ART scale up. Because the
HIV epidemic started later in Russia than in most
other countries, there is a unique opportunity to
scale up ART before HIV-related morbidity and
mortality rise sharply. Of an estimated 50,000
people currently in need of ART, only around
3,000 currently receive it. But within a few years,
two major GFATM projects, together with
governmentally funded programmes, are aiming
to make ART accessible to up to 75,000 people.
Though it now appears that adequate financial
resources will be available, major barriers stand in
61
• Stigma against IDUs
• Inadequate support for
adherence
• Limited connection
between TB and HIV
services
• Inadequate responsiveness
from the Ministry of Health
and the AIDS Centre system
• Ineffective CCM
RUSSIA
ISlil
the way of efficient, equitable and sustainable treatment scale up. These include
weak health care infrastructure, pervasive stigma, and lack of support services for
the most vulnerable groups (especially IDUs).
Research methodology
Information for this report was gathered through interviews with 13 people who
work in various regions and sectors in the field of HIV/AID3 in Russia. The research
team interviewed representatives of the federal Ministry of Health and Social
Development, international organizations, regional governmental service providers
and activists from federal and regional PLWHA organizations. The research team felt
it important to gather information from both the federal level and Russia's regions,
as distance and differing settings can yield quite different perspectives. The research
process was managed by the Community of People Living with HIV/AIDS an
organization comprising HIV-positive people in Russia. Organization staff conducted
interviews in Moscow with, among others, representatives of federal governmental
institutions and international organizations. During a conference in Moscow,
Community of PLWHA staff interviewed PLWHA activists from three regions; those
activists subsequently interviewed regional governmental health authorities in their
own regions. Audio recorders were purchased for regional activists, and they were
given a small honorarium for conducting and typing up the interviews.
Key barriers
For many countries, one of the primary barriers to adequately scaling up access to
treatment is a lack of financial resources. This is no longer a key constraint in
Russia. Two large GFATM grants have been approved for Russia: one, for which
$34 million has been approved for Phase 1 (the initial two years) beginning in
September 2005, is focused mostly on AIDS treatment, care and support, including
ART provision. Also in September, the Russian presidential administration
announced that $107 million would be released from the governmental
Stabilization Fund for use in the year 2006, mostly for HIV/AIDS treatment
In the coming few years, the success of AIDS treatment delivery will depend on
how well these funds are spent.
Drug pricing, procurement and distribution
onnnkS|.in larse part tO the dru9 Pricin9 requirements established by GFATM, in
2004 the yearly cost of a first-line ART regimen in Russia fell to $1,800 per patient
from $12,000 the year before. Although the price reduction is significant, it does
not bring drug costs down far enough to make treatment access sustainable in the
lon9 term in Russia. In governmental tenders, drugs are still purchased for as much
as $8,000 per patient per year.
62
RUSSIA
Drug procurement in Russia is not done through a centralized procurement
mechanism; instead, public sector drug purchases are made by both the federal
and regional authorities. Russia has 89 administrative regions, and each regional
purchase is made through a separate tender. Generic ARV drugs have still not been
registered in Russia, even though attempts have been made to register them. There
have been discussions regarding local production of ARVs—which would be less
difficult than in many other countries, given Russia's relatively developed capacity
tor pharmaceutical production—but no concrete steps in this direction have been
taken. Some off-patent drugs have been produced locally, including, for example
an AZT analogue.
'
Russia is likely to face serious problems with maintaining an uninterrupted supply
of ARVs. Already, in fact, interruptions in ART due to stock outs have become a
frequent reality. The country has limited experience in dealing with medicines that
require such precise supply-chain maintenance. Russia does not have a central store
and centralized system for managing storage and distribution. Moreover, personnel
at local AIDS centres have limited training in how to accurately estimate the
quantifies of drugs to be purchased.
Another important drug pricing and access issue is availability of medicines for
hepatitis. There are high rates of co-infection with hepatitis B, C, and D among
PLWHA in Russia. Since health care providers often recommend that hepatitis be
treated prior to initiation of ART, access to hepatitis treatment will have a direct
impact on ART delivery. Treatment for hepatitis in Russia is available, but is
extremely expensive, making it inaccessible for the overwhelming maioritv of
PLWHA in need.
Infrastructure
We have to change the whole structure.
—Anonymous respondent from the Ministry of Health and Social
Development
They need to stop painting the situation in bright colors. [T+iey need
to] report the existing problems and demand their solutions.
—Activist living with HIV
In the late 1980s, after the first case of HIV was detected in the Soviet Union,
the government responded by setting up a vertical structure of AIDS centres and
delegated responsibility for dealing with the epidemic to these institutions. This
strategy prompted staff members at other public institutions to view HIV/AIDS as
not my problem. As a result, referral services and coordination among medical
services are very weak. One person interviewed for this report commented, "Why
63
RUSSIA
can't we establish communication? Well, the first thing is because only one
organization is authorized to deal with treatment of people living with HIV."
The vertical AIDS centre structure continues to use a very "soviet" system of
management: information and statistics flow upward and directives flow downward.
Too often, information has not been used for decision making and quality
improvement. Most NGOs, especially those working on social issues that have an
impact on the epidemic, also report within their donor-driven command economies.
Thus, the information and experience they generate is often reported only to their
donors and rarely used to alter the HIV care system as a whole; this is a particular
shame given that NGOs often develop and employ some of the most innovative
approaches to health promotion.
Interaction among governmental and non-governmental structures remains weak,
though there are recent signs of improvement. At the same time, though, recent '
restructuring in the Ministry of Health has made the lines of command within AIDS
centres even more unclear. In general, the reforms have maintained many of the
disadvantages of the vertical structure while eliminating one of its few advantages—
the ability to integrate learning, identify model programmes, and direct programme
and policy changes from the centre. That kind of centralized leadership could be
extremely valuable as disparate treatment centres work to rapidly scale up AIDS
treatment.
Since its establishment, the AIDS centre system has used most of its resources to
support an extensive mass testing programme. Nearly 20 million HIV tests per year
have been conducted since testing began in the late 1980s, even as prevention,
treatment, care and support were neglected. Since HIV transmission began to grow
rapidly in Russia only in 1996 (considerably later than in many other countries),
AIDS cases are only beginning to be seen, and medical professionals have little
experience treating AIDS patients. Russia now faces the challenge of rapidly
equipping these AIDS centres and training personnel. This effort is hampered by
the fact that the country still does not have a standard ART protocol—in many parts
of the country, monotherapy or bi-therapy are common.
Stigma, inertia and lack of support for treatment uptake and adherence
Let them all die, it's their problem—that's what many doctors think!
— Anonymous respondent
Even the best lab equipment in the world, a seamless system of delivering pills,
and thoroughly trained clinicians will not provide the kind of psychosocial support
necessary to promote adequate treatment uptake and adherence to therapy.
Herein lies Russia's major barrier to treatment access. As one respondent
commented, "I believe that this problem is more of a sociaf than medical problem."
64
RUSSIA
The degree to which drug users are stigmatized in Russian society cannot be
overestimated. The impact of this stigma is seen at every level—from national
policy to interactions between patients and doctors. At every stage, stigma creates
barriers to successful ARV treatment.
It is all a matter of stigma, no really, because the general public
attitude up to this day is very simple: HIV-positive people, all of
them, society believes, are drug addicts, prostitutes, homosexuals,
or whoever else. In other words, they are not decent folk. And the
worst thing about it is that health professionals generally share this
attitude
it is terrible to observe many of them being happy that
their patients don't come to see them/! Let them all die; it's their
problem—that's what many doctors think! And believe it or not,
many people actually agree with this attitude, they find it very
appropriate. From their heart they agree with it. They feel, "What
the heck! Why should anybody bother with them? These sick
people, they were given money, there are doctors to help them,
there are resources allocated, what else do they need? Let them
all die! Good riddance!"
— Anonymous respondent
Lack of support for treatment uptake
In neighboring Ukraine, ART scale up started earlier than in Russia, but treatment
uptake has been disappointing. The same can be expected in Russia. In regions
where ART is available through the Round 3 GFATM project there are still no
information campaigns to promote awareness that treatment is available. Most
people do not even know that HIV can be treated at all. Aggravating the problem iIS
the profound lack of good quality post-test counseling. Though mandated by laIW,
appropriate counseling rarely occurs and most health care workers are not
adequately trained in its importance and practice.
Even if good counseling and mass information campaigns provided information
about the availability of treatment, special attention would need to be given to the
needs of the most affected groups. It is estimated that in Russia more than 80% of
those in need of ART are IDUs. This highly stigmatized, vulnerable group often does
not have access to even basic medical care. Even possession of small amounts of an
illegal narcotic is criminalized, a fact that serves to drive drug users underground.
If a drug user seeks help for addiction, he/she will be registered in the system
officially. Once registered, the person is guaranteed a lifetime of difficulty. For
example, many employers require job applicants to present proof that they are not
registered drug users. Fear of being registered seriously inhibits access to care
among IDUs.
65
RUSSIA
The attitudes of many medical professionals towards drug users alsa are strongly
negative, further d.scouraging service uptake. Many health care workers believe
DLJs are n°! capable of adhering to treatment and providers often deny access
to life-saving ART based on this erroneous and discriminatory assumption—even
though evidence shows that with the appropriate support drug users can achieve
adequate levels of adherence.
Evidence from around the world proves that harm reduction services serve as
effective points of entry to health care and other services for drug users. They are
far more likely to come forward when contacted by tolerant and caring outreach
workers. But in Russia, persistent opposition by many policymakers to harm
reduction services and inadequate financing
j means
means that coverage is woefully
adequate. Stigma and discrimination against drua
inadequate.
drug users at all levels of society
limits the expansion
of
harm
reduction
services
to meet
meet national
national needs.
needs. Recently,
Recently
■
------------- 1 services to
though, GFATM approved a 5th Round proposal that would allocate funds to sca'le
up harm reduction services in Russia. This application for critically needed
I services
had to be submitted to GFATM <as a non-CCM proposal—even though
“ Russia has a
CCM— due to the lack of governmental support for harm reduction^ctivities and
-
inadequate governance procedures for Russia's CCM.
._.,J
Another factor inhibiting service uptake is the propiska system through which a
person can access state-funded medical services only in the region where he/she is
registered to live. This barrier is especially significant for vulnerable groups such as
sex workers and migrant workers. Since treatment is available only through AIDS
centres, many patients (even those who live in the districts where they are
registered) have to travel a significant distance to receive care; this travel proves
too costly, time-consuming, or exhausting for many of those in need.
Programmes that reach out to other vulnerable groups, including sex workers,
MSM, and former prisoners, are also underdeveloped and often not linked with
services that provide ART access.
Lack of adequate adherence support
Those patients who do enter ART programmes need extensive support to adhere to
their regimens. Unfortunately, most AIDS centres are not yet able to offer this kind
of support. Medications that were recently added to the WHO Essential Drug List
can play an important role in promoting ART adherence among IDUs, but these
medicines are not legal in Russia. Political will to change this situation is absent, to
a large extent due to strong resistance within Russia's drug control agency and drug
treatment service structure. Without adequate drug treatment and rehabilitation
services and, for some, substitution therapy, many Russian PLWHA who are drug
users are practically condemned to death.
Providing the psychological and social support that patients need to adhere to
potentially life-long ART will be a new and challenging undertaking for AIDS
66
RUSSIA
litres, NGOs and PLWHA community organizations. Evidence from around the
wor d has shown that a trusting relationship between the patient and health care
worker is a crucial factor in promotion of treatment adherence. Russian doctors
and PLWHA generally belong to different social groups in Russia, so building this
trusting relationship will be a particular challenge requiring ongoing efforts to
reduce stigma aimed at IDUs. Anti-stigma programmes run by community-based
NGOs, as well as the work of peer educators, can help build this trust. To date,
though, these kinds of programmes remain underdeveloped in Russia.
HIV/TB
In Russia, there are very high rates of HIV/TB co-infection, and TB is the most
common cause of death among PLWHA in Russia. Inadequate integration of services
sometimes leaves patients without adequate care for co-infection. TB and HIV are
managed by two separate cenTralized "vertical" systems that are remnants of the
Soviet system. Horizontal cooperation and information flow at both the regional and
federal levels remain substandard. Recently some efforts have been made at both
levels to encourage cooperation and information sharing, but the results are not yet
clearly visible. TB and HIV advisory committees have been established at the federal
and regional levels, but several people interviewed for this report mentioned that
they have yet to see any progress in cooperation. As one respondent noted, "On
paper they do cooperate, but people receive no real interdepartmental assistance."
In general, TB patients are tested for HIV and HIV-positive patients are tested for TB.
Isoniazid and cotrimoxazole prophylaxis seem to be availabje at the pilot level, but
not universally throughout the health care system. A doctor interviewed said that
the mam barrier to broad application of the TB prophylaxis is not the cost—the
medicines are relatively inexpensive, he said—but difficulties in setting up
comprehensive and accessible services. One activist said that it was not uncommon
for TB clinics to try to send HIV-positive patients to the AIDS centre and for AIDS
centres to try to send their HIV-positive patients with TB to the TB service—just to try
to "get rid of" them.
Accountability: the major players
Ministry of Health and the AIDS centres
For years the Ministry of Health and the AIDS centre system were not particularly
responsive to calls from the international community and the country's civil society
organizations to utilize a human rights and evidence-based scientific approach to
public health. Now there is increasing attention from the federal government to
change the situation. After years of mostly silence, President Putin mentioned AIDS
four times in a six-week period in 2005, and in September he released $107
million for HIV programmes from the Stabilization Fund, a 20-fold increase in the
government's HIV/AIDS budget.
67
RUSSIA
As a result, the Ministry of Health will be under more pressure than ever to show
tangible resu ts. Though the response is still far from ideal, some positive steps
have been taken recently. To an increasing degree, governmental structures at the
federal and local leve (in some localities) are showing more willingness to interact
constructively with civil society organizations and strategically share with them the
burden of work. There are recent indications that governmental funds may become
available to NGOs, which up to now have
have been
been essentially
essentially dependent
dependent on foreign
funds.
WHO and UNAIDS
Many respondents interviewed for this report were not aware of the activities of
WHO and UNAIDS in Russia, perhaps because these agencies are focused on
”
wciuubu inet>e agencies are rocused on
working with federal level NGOs and government partners. Both agencies have
seen an increase in funding and staff size in
in their
their Russian
Russian offices,
offices, allowing
allowing them
them to
to
expand their roles. Within the last year, both WHO and UNAIDS have been
increasingly able to help establishi more solid links among civil society organizations
and governmental entities.
WHO's "3 by 5" targets for Russia were not clear. Regardless, though, Russia's late
start toward scaling up treatment access means that significant
o
increases ...
in the
number of people receiving treatment likely will not be seen by the end of 2005.
GFATM
We noticed that they [the Global Fund] don't just provide the
financing. The very process of preparing a grant application
according to their requirements affects the national HIV/AIDS policy
development process in some way.
— Ministry of Health official
GFATM played an important role in lowering pharmaceutical prices and in pressuring
recipients to use evidence-based, sound practices in delivery of care. This pressure
has had some interesting and fruitful results. The Fund's communication strategy
seems to be a problem, however. Many people remain unaware of GFATM's
accomplishments. Its drive to report output indicators may overshadow the need to
produce useful information about programme approaches and outcomes. A more
significant problem is that Russia's CCM is not perceived as credible or effective, at
least in part because it currently lacks concrete rules for decision making. Recently
GFATM has taken initiative to facilitate the improvement of CCM governance but
considerable work is still needed to ensure a fair mechanism that can adequately
respond to both civil society and governmental initiatives.
68
RUSSIA
What is needed now
_____
;
; . > ISIS
• Develop treatment protocols
• Build collaborations between civil society and government
• Provide training and support for human resources
• Promote treatment uptake among vulnerable populations
• Tap expertise of PLWHA and vulnerable communities
Use monitoring to improve programs
• Advocate for appropriate services for IDUs
• Provide adherence support
• Improve drug procurement
• Work against stigma
Recommendations
■ Develop treatment protocols. The establishment of treatment and other
protocols for the management HIV-related services should be of highest
priority. The Federal Scientific Methodological Centre for Prevention and
Combating HIV/AIDS should cooperate with WHO to design these
protocols, which have been promised for years. As one participant at the
recent Russian National AIDS Conference said, "It is unbelievable that we
are 15 years into the epidemic in this country and we still don't even have
treatment protocols."
■ Build collaborations between civil society and government.
Cooperation between governmental and civil society organizations will be
vital for developing programmes that provide comprehensive services.
At the federal level, UN bodies have begun and should continue to take
an active role in promoting communication and cooperation among
governmental entities and their non-governmental counterparts. National
level networking organizations such as the NGO Forum, the Network of
PLWHA and the Harm Reduction Network, as well as the AIDS centre
system, should take an active role in encouraging local organizations in
their networks to cooperate at the local level.
■ Provide training and support for human resources. Throughout the
country, and in both the NGO and governmental sectors, human
resources development is critical. More extensive HIV/AIDS education for
employees in the health care system, NGOs, and PLWHA community
organizations is needed on a grand scale. Guidance from UN agencies
on appropriate (evidence-based) content and approaches would be
instrumental in this regard.
69
RUSSIA
■ Promote treatment uptake. A strategic approach has to be taken to
promoting treatment uptake, which was neglected in the original GFATM
proposals (an omission that could prove to be a major pitfall for treatment
programmes). Government, NGO, and PLWHA cooperation will be necessary.
Treatment literacy of PLWHA and other community based initiatives should
be improved, as should their capacity to engage in community outreach
for treatment uptake. Also essential will be improving VCT efforts,
launching mass media campaigns, and scaling up' of harm reduction and
NGO and governmental referral services. If treatment indicators for
GFATM are not met, the Fund should insist on strengthening the above
strategies for improved treatment uptake rather than simply allowing
revision of the indicators.
■ Tap expertise of people living with HIV/A1DS and vulnerable
communities. The mobilization of PLWHA and vulnerable communities
and the promotion of their constructive interaction with governmental
services are needed. The capacity of these groups to promote treatment
literacy, build awareness of human rights, provide services, and advocate
for necessary changes must be acknowledged, developed and supported.
Both the Russian government and international donors should recognize
the importance of civil society's role and provide support. This support
should be not only financial, but also come in the form of capacity
building services that these young structures need to thrive.
B
Use monitoring to improve programmes. A strong and unified
monitoring and evaluation system is desperately needed. It is vital for
decision makers to know what does and does not work. UNAIDS' focus on
these systems within the Three Ones model may prove to be a good
catalyst for change. Monitoring should not just be performed for the sake
of reporting to a funding source—it also should be used to learn lessons
and improve programme functioning. Greater involvement of PLWHA and
other vulnerable communities in the evaluation of treatment scale-up
efforts sponsored by donors and governmental organizations would be
quite beneficial.
■ Advocate for treatment, harm reduction and other services for IDUs.
Major advocacy efforts need to be taken to promote effective treatment
and rehabilitation services for drug users and to increase the availability
of harm reduction and substitution therapy at the-local, national and
international levels. Efforts should target some of the most*intractable
opponents of these programmes: the Narcology Service and the State
Drug Control Service. UN agencies and other international organizations
could potentially be quite helpful, because Ministry of Health officials
often find it difficult and professionally risky to promote such unpopular
approaches.
7Q
RUSSIA
■
Provide adherence support. A considerable investment is needed in
developing effective approaches to adherence support, notably through
peer counseling, case management, and provision of psychological,
social and material support. Peer educators are known to be particularly
effective among groups facing dual stigma, such as drug-using PLWHA.
Peer educators are employed by a few of Russia's AIDS centres (mostly in
those funded by the GFATM Round 3 project), but this approach is still
utilized rarely in Russia. The Ministry of Health does not yet recognize that
peer educators have an essential role to play in the AIDS centres. PLWHA
community organizations and WHO should provide evidence of the
effectiveness of this approach and advocate its employment on a broad
scale in Russia.
■
Improve and centralize drug procurement. The government should be
pressured to develop a drug management system based on international
best practices and on local needs. Training in methodologies for drug
quantification, storage and distribution will be critical. The government
should be pressured to procure pharmaceuticals centrally, register generics
and consider expanding local production. The UN structures, community
advocacy groups and NGOs should continue to pressure the government
to ensure that it is allocating resources rationally. Appropriate UN agencies
should offer technical assistance in drug procurement, storage and
distribution methodology.
■ Work against stigma. Reducing stigma is one of the most important and
challenging activities in the effort to promote and increase ART access.
Individuals who need treatment are far more likely to seek it out when
they do not face such overwhelming stigma and discrimination on the part
of many medical professionals as well as within society at large. Among
the ways that stigma can be reduced are to raise awareness that treatment
is available, encourage openness about serostatus, and support PLWHA to
become educated equal partners in the treatment preparedness effort.
71
RUSSIA
One activist's TB story
I can only list several examples. Bad examples, for that matter. We have a
rehabilitation centre, and it's a bit "chaotic." It is located on the former premises
o a military detachment, the troops having left five years ago. They created a
Nazareth Centre, with no legal registration. Some 60-80 people are in there all
the time. The work is quite effective. Well, perhaps not 1 00 percent. They have no
electricity, no heating, no water, and it is somewhere in the steppe. But they do
work, although they have no funding. They do get some support from a Christian
organization, people get food three times a day, so people keep coming to this
centre. The centre was created to work with the poorest part of the population
people who don't have documents, people who are lost in life. They come to this
centre, get some spiritual support, get help in acquiring new documents. Some
people call it "a nest of disease
We tried to involve the Ministry of Health. Well, not really involve...! got a phone
call, they asked me to help a person dying from TB, a really heavy case. I said I
would try to help, went to the TB dispensary, to the chief doctor, and told him
about the dying man. It turned out this man had been registered as a TB patient
since his very childhood at this TB clinic. The chief doctor said that in half a year
he would have a place in his clinic. Well, a place in half a year! He is dying now.
He s in that centre and it s dangerous to have him around for other people who
live there. I had to do something.
For two days I tried to reach several other organizations - no effect. Then I called
to Vesti Dona—the head of the TV programme is a friend of mine. I told her,
Let s write a shocking story about this." She said, "I would love to, but you know
it's fraught with consequence, this TB story, so I can't help you. But I can advise
you. A new minister of health has just been appointed, why don't you call her
personally and mention my name." Well, I'm a frequent visitor of this pro
gramme; they all know me and often broadcast controversial stories with my
participation. I went to the Ministry of Health, could not get the minister, but did
get acquainted with the deputy minister. As a result there was a line-of-duty
investigation. In four hours this dying man was admitted to hospital by the chief
TB doctor of the Rostov region. All important tests were taken in 15 minutes. The
man had active TB, HIV, and late stage syphilis. The chief doctor asked me to
bring him the next day. I told him that I would of course come the next day but
this guy stays here, right in front of your door. Buy him some pancakes, or bury
him at least—if he dies. So they found a place. Had an official investigation. This
is how it works here.
The first step was taken—with so much crap along the way, though! So what kind
of opinion can I have—having seen all that? When a homeless bum with HIV and
active TB can o nly be hospitalized if a deputy minister of health personally orders
it?
— Activist living with HIV
72
1
SOUTH
,
AFRICA F
By Fatima Hassan,
AIDS Law Project
"Without Greater Vigour
Since 1998, the Treatment Action Campaign (TAG)
and its allies have led a lengthy public campaign
for access to ART through the public health sector.
Eventually, on 8 August 2003, the Cabinet made
a commitment to provide ART treatment, and two
months later the government published the
Operational Plan on Comprehensive HIV and AIDS
Care, Management and Treatment for South Africa
(the Operational Plan).
By the beginning of 2004, several of the nine
provinces in South Africa had started implementing
the Operational Plan. At that time, fewer than
5,000 people were on ART in the public sector in
the whole country. By the end of 2004, all nine
provinces had fully commenced with implementation.1
Nearly one year later, according to the National
Department of Health (NDoH), there were 192
public health facilities providing HIV/AIDS-related
services, including ART.2
The estimated total number of people who need
treatment in South Africa is between 500,0003
and 700,000. Preliminary unconfirmed actuarial
estimates indicate that only about 18% of all those
in need of treatment in the public sector are
accessing it.4 Given the need, patient numbers in
the public sector are significantly lower than what
the demand actually requires. A more aggressive
approach to scaling up is needed to avoid falling
further behind as the AIDS epidemic matures.5
73
How the research was conducted
• 1 5 confidential interviews
with representatives of
public, not for profit and
private sector providers and
organisations (Staff from
the National Department of
Health and the HIV/AIDS
Directorate did not respond
to repeated interview requests)
• Review of key policy
documents
Major barriers to treatment
delivery:
• Lack of effective national
political leadership
• Denialism and pseudo
science
• Shortage of human
resources, especially nurses
• Inadequate access to VCT
• Inadequate drug supplies
and formulations
• Lack of integration of TB, HIV
and PMTCT programmes
• Inadequate donor co
ordination and concerns
about sustainability of
funding
• Dysfunctional GFATM CCM
• Invisibility of multilateral
agencies
• Inadequate response from
the private sector
SOUTH AFRICA
By August 2005, the total number of people on treatment in both the public and
private sector stood at about 150,000: some 70,000 people were accessing ART in
the public sector, with an additional 70,000-80,000 receiving it in the private sector.6
Several reports of good outcomes are available.
The majority of the approximately 70,000 patients (both adults and children)
receiving public sector care are concentrated in three provinces (Gauteng, Western
Cape, and KwaZulu Natal). Most of the patients are women and about 10% are
children. Paediatricians and children's rights activists are particularly concerned that
very few children are accessing treatment. They estimate that at least 50,000
children need ART now, but that currently only about 10,000 are receiving it.
The total public sector figure also hides huge inter- and intra-provincial disparities
in patient numbers. It is also worrying that very few men are accessing treatment in
the public sector.
Several donors partially or fully fund patients accessing ART in the p’ublic sector and
contribute towards the costs of staff or medical equipment. For example, many
provinces have entered into partnerships with donors such as Medecins Sans
Frontieres, Absolute Return for Kids, One2One Kids, Catholic Relief Services, the
South African Medical Association, and PEPFAR. Without this support, the public
sector patient figures would be even lower.7
The private sector figures include treatment provided by NGOs (community
treatment programmes funded by internal and external donors),8 workplace
treatment programmes (funded by employers), medical insurance and aid schemes
to which the employer and employee contributes)910 and the unfunded private
sector (self-paying patients).
While the total public and private numbers of patients on treatment are a step forward,
the public sector numbers indicate that treatment is far off for many adults and
children who need it urgently. In many cases where patients’have received treatment,
it has arrived too late. This means that many PLWHA are suffering needlessly and
that we will continue to witness the premature deaths of thousands of people.
Therefore, unless the pace of implementation is substantially improved, thousands
of people who are in need of treatment will either suffer or die prematurely.
Against this backdrop, the South African government has come under severe
criticism from local advocacy and trade union organisations. In particular, most
recently, Zwelinzima Vavi, the secretary general of COSATU, the country^ largest
trade union federation, publicly stated that President Mbeki and his health minister,
Manto Tshabalala-Msimang, had betrayed "our people and our struggle" because
of the lack of government leadership on HIV. As noted in this case study, people
interviewed for this report unanimously agreed with Vavi and some expressed even
stronger rebukes. President Mbeki, in his State of National Address on 11 February
74
SOUTH AFRICA
2005 said that the national government would respond to the AIDS epidemic with
great vigour." The sentiment of all participants was that the programme is not
being led "with great vigour ."
Background
From July through October 2005, a total of 15 confidential interviews were
conducted among individuals representing public, not for profit and private sector
organisations and providers. Regrettably, the NDoH and, in particular, the head
of the HIV/AIDS directorate, did not respond to repeated telephone’and e-mail
requests for an interview. The NDoH's views are, therefore, not included in this
report.
Limitations
Many of the respondents were unfamiliar with the TB programme, and therefore
were not in a position to comment on the TB section of the interview (section 3).
This is because they had not heard of the TB programme, felt that they had
insufficient knowledge or information about it, or believed that the TB programme
and response to the TB/HIV epidemic was inadequate and lacking. Due to the
paucity of responses on the national TB programme, the summary below contains
limited information about TB.11 This is in itself telling.
Key barriers
Participants identified the following barriers, which they felt were affecting the
speedy implementation of the Operational Plan. They are not ranked in any order
of importance. However, the first two barriers listed below were the most frequently
identified. These barriers are dealt with in detail in the recommendations section.
■ Lack of effective national political leadership coupled with denialism and
a flirtation with pseudo-science
Operational issues, including:
• Shortage of human resources, in particular nurses
• Inadequate access to VCT
• Inadequate drug supplies and formulations
• Lack of integration of TB, HIV and PMTCT programmes
■ Inadequate donor coordination, including concerns about the
sustainability of donor-funded programmes
■ Ineffective functioning of GFATM's Country Coordinating Mechanism (CCM)
■ Invisibility of multilateral agencies
■ Inadequate response from the private sector
75
SOUTH AFRICA
What is needed now?
• Create a true national AIDS program
■
• Tram nurses and other health care workers to provide treatment consistent with
international standards, and develop programmes to retain them once trained
Greatly expanded access to voluntary counseling and testing services
Develop a new, more effective CCM—or initiate a new process for soliciting and
overseeing the implementation of GFATM grants
• Establish true civil society representation on the CCM
• Demand fewer restrictions and more collaboration from PEPFAR
• Assure the ability to use generics through PEPFAR-funded programs
• Increased visibility and leadership from UNAIDS and WHO
• Expanded involvement from civil society in treatment expansion
Recommendations
The following recommendations emerged from the interviews.
The ma/or obstacles are political—so we need a political
solution—and we need to address the silence.
—Staff member from leading legal research and advocacy group
Most participants felt that the political impasse created by the president and the
health minister is hampering the country's overall ability to effectively respond to
the epidemic. Many participants felt that a strategic international campaign should
be directed at the South African government to hold the health minister accountable
and/or remove her from office on the basis that she is showing no leadership and
continues to undermine the international, regional and local struggle against
HIV/AIDS.
South Africa needs to get to the point where the AIDS programme has its own
momentum and it is willingly implemented. It should not require ongoing vigilance
from civil society. No one is championing the programme. More groups and
people should be less complacent and less reliant on TAG and the ALP to do the
dirty work.
76
SOUTH AFRICA
The following specific concerns on leadership were identified:
■ First, the health minister refuses to act in a transparent and open manner,
thus limiting access to information about the HIV/AIDS programme. It was
felt that multilaterals should be more critical and vocal about the lack of
leadership of the AIDS programme and the deep levels of mistrust and
secrecy that characterize the minister's actions. As one participant
observed, "There is no programme driver."
a Second, ambiguous messages issued by the health minister about ARVs
have led to confusion among many PLWHA. For example, many
respondents held the minister responsible for creating a false dichotomy
between nutrition and HIV/AIDS. They argued that this is because, in
addition to issuing ambiguous statements about nutrition and ARVs, she
has refused to act against false claims by persons who are associated with
AIDS denialists and with the minister herself. Most participants felt that
international organisations and agencies should consider the minister's
inaction to be not only scandalous, but deadly—and to directly confront
her and the government as part of an effort to cease discouraging
patients from taking ART. The interviews noted that in some parts of the
country, the health minister's open opposition to ART has prompted many
patients to hold off on seeking treatment until a very late stage in their
infection, thus endangering their lives and creating additional burdens on
the health care system.12
H Third, the minister's attempt to centralise key decision making powers
(such as accreditation of treatment sites) makes politically weaker
provinces dependent on the national department for leadership and
support. Most participants felt that the minister simply has too much
power. Again, this is an issue of leadership.
*
Almost all respondents questioned the effectiveness of the National AIDS
Programme (NAP). Most stated that in their view the programme is inefficient,
non-existent and even "an embarrassment
For example, paediatric treatment
guidelines were <only
’ publicly available in October 2005, nearly two years after the
Operational Plani was adopted. The government's National HIV /AIDS Strategic Plan
expires at the end of 2005, butI a plan for 2006 and beyond is not yet available.
Positive comments
The Khomanani programme (government communications component of the AIDS
programme, which includes TV, print, radio advertisements and information
materials) was considered by one participant to be a worthwhile component of the
NAP In addition, at the provincial government level, progress seems to be made in
fostering a better working relationship with the NDoH. Aside from this, there were
no other positive comments about the NAP
17
SOUTH AFRICA
What should the NAP do?
People are afraid to do anything or to say anything. National and
provincial should be honest about what they need help with and do
so regularly. They have created this tension between nutrition and
ARVs, which is just ridiculous. They should be accountable
and report to the country about treatment, participate in the
programme, encourage testing and CD4 tests—or else why would
people volunteer to get tested?
— Staff member from nonprofit treatment funder
Given that most participants agreed that for all intents and purposes there is no
existing NAFJ it is useful to list what they identified as the crucial components of an
effective NAP:
■ Lead, coordinate and deliver on the Operational Plan by assisting weaker
■
■
■
■
■
provinces and ensuring that monitoring and evaluation is regularly
carried out
Ensure that the programme is not exclusively hospital-based.
Monitor and improve policies, guidelines and systems that will ensure that
the health and well-being of poor people are promoted and protected as
mandated in the Constitution
Act in a transparent manner, provide access to information, include civil
society in deliberations, provide leadership, act with a sense of speed and
increase the pace of rollout
Appoint suitable people with the right skills to run the programme.
Issue unambiguous messages
Publicize outcomes
2. Expand human resources
We have large numbers (truckloads) of patients who need help,
but not enough qualified staff to measure their blood pressure,
take their medical history and check for Ols and TB, which is a
huge problem in this area. We just need to train them to listen to
a patient's chest. We have very few staff and they are unskilled.
We have in our province the highest prevalence of MDR-TB in the
world— 80%. What do we do?
— Non-profit treatment provider
Many participants identified inadequate human resources as a major barrier to
scaling up treatment. According to them, the pace of implementation is being
hampered by a lack of trained doctors, nurses, pharmacists and other health care
78
SOUTH AFRICA
providers. Therefore, attracting, retaining and training health care workers is critical.
The ongoing crisis in human resources is a result of poor working conditions, low
salaries, lack of incentives, and the international poaching of health workers.
Without a reasonable, flexible human resources plan that addresses short, medium
and long term needs, the Operational Plan will continue to be undermined.
In particular, most participants regarded nurses as the backbone to scaling up
treatment in South Africa, especially in primary health care settings. In addition,
participants believed that nurses must be trained to administer ART with appropriate
doctor supervision. Incentives to attract, retain and professionally develop nurses
are also urgently needed. This^requires the intervention of multilateral agencies to
ensure that foreign governments and the private sector do not poach nurses who
are needed in the public sector.
One interviewee argued that given the prevalence of HIV among health care
workers, government, trade unions and international agencies have to embark on
a national campaign to assist nurses who are living with HIV to access VCT, early
diagnosis and timely access to treatment. That respondent suggested that if such an
effort were not undertaken and made successful, the health care system would
collapse in the next few years because of the direct burden of HIV/AIDS on health
care workers.
3. Expand VCT access
Many participants felt that the current model of VCT was not working. In order to
scale up more speedily, they felt that a new VCT model was necessary—one where
counseling and testing is available routinely, more widely and before treatment
becomes necessary. This would allow health care workers to better manage patients
during the initial stage of infection and provide them with treatment at an appropriate
time. Some participants suggested introducing the routine offer of testing at all
health points, mass counseling, and self-testing. Others felt that a new model could
include the aggressive marketing of testing at all public places, including schools,
universities, shopping centres, places of worship, TB clinics, PMTCT clinics, general
health wards and clinics, workplaces and places of recreation and leisure.
Some recommended that CD4 testing should be routinely available with VCT, a
development that would assist health care workers with patient tracking and
management, reduce unnecessary waiting lists and lengthy delays ip treatment
commencement, and in many cases limit loss related to patients' failure to follow
up. In terms of the Operational Plan, a CD4 test result is a prerequisite for
commencing treatment. Participants therefore suggested that it would make
practical sense to couple CD4 testing with VCT.
In addition, many participants suggested that children should be tested much earlier
after birth. They felt that it is vital that PCR testing is available at all health facilities
79
SOUTH AFRICA
to diagnose children early enough and avoid losing them later in the system. As
with adults, early testing assists with patient tracking and management.
The role of multilaterals
Varied responses were received from participants regarding the role of UNAIDS,
WHO, GFATM and PEPFAR. Responses differed according to the proximity of the
participant to the relevant organisation. Some bias in responses is therefore evident
and should be acknowledged.
GFATM
There are two key issues in regard to GFATM. The first concerns GFATM itself, and
the second is the appropriateness of the South African National AIDS Council
(SANAC) as the CCM. Most participants agreed that the role of GFATM is mainly to
be a financing mechanism. Some felt that GFATM operates as a willjng listener and
acts from the ground up"—that it respects local priorities, is transparent and flexible,
and provides incentives for meeting targets. Others argued that it is inefficient,
bureaucratic, and has not met its mandate. Some could not comment on GFATM
given that they had no dealings with it or felt that GFATM had "no impact on [their]
work. Some participants considered GFATM's accounting requirements too rigid.
Questions were also raised about who the key contact person for GFATM is in South
Africa and to what extent GFATM has attempted to truly identify local needs and
fund smaller community based organisations.
SANAC is invisible.
It is not meeting, it is not transparent, it is not
working. Who is heading it now?
— Staff member from nonprofit treatment provider
Many participants contended that SANAC is not a fit CCM and is instead undermining
and hampering grant applications. Given the political complexities in South Africa,
respondents suggested that either GFATM should allow direct applications or actively
insist on a new CCM that is not under the control of the NDoH. One participant
suggested that GFATM should invest resources in training and for the appointment
of a full time secretary.13 An external evaluation of SANAC was also suggested.
Given that Provincial AIDS Councils are all represented on SANAC, one of the
recommendations was that more resources should be spent on strengthening
weaker councils to ensure that their representation at SANAC is more meaningful. 14
In October 2005, it was learned that South Africa's Round 5 proposal to GFATM
had been rejected, a development that most observers attributed to the failure of
SANAC to function as a proper CCM. This means that an important organisation
like Soul City has been deprived of funding from GFATM. South Africa's proposals
to all three of the most recent GFATM rounds have now been rejected, primarily
80
SOUTH AFRICA
due to the substandard performance of SANAC and the health minister's lack of
leadership. These rejections have deprived the country of as much as 2 billion rand
($297 million) in funding for HIV, TB and malaria. As such, GFATM has referred the
issue of future funding for the Lovelife prevention program (they were successful in
Round 1) back to SANAC, which has been asked to revise the original Round 5
proposal and resubmit it. The GFATM board decision requires that the revised
request also address the issue of an effective governance structure and CCM
oversight. The problem is there has been absolutely no CCM oversight of any of the
grants to date. This is despite the fact that over the last two years repeated requests
have been made to SANAC for better reporting on the status of grant applications,
the amount of money received by GFATM beneficiaries, and how funds have been
spent.15
While some participants recommended bypassing SANAC and submitting applications
directly to GFATM, two respondents warned against that step because they felt that
a single and central coordination body is necessary so that country applications are
based on a country's real, overall needs. Allowing direct applications to GFATM
would lead, they said, to a situation in which only strongly written proposals were
accepted, regardless of overall impact. Most participants felt that GFATM should
follow PEPFAR's lead and award smaller, more targeted grants to key community
organisations. They noted that as things stand now, reliance on the CCM to prepare
and submit country applications means that GFATM money mainly benefits larger
community organisations to the detriment of smaller ones.
Other recommendations for GFATM include the following:
■ Improve GFATM's local profile so that people in South Africa are aware of
■
■
■
■
■
its role, its funding successes and limitations, etc.
Provide easily available access to information about where, how, and when
to apply, including details of the main GFATM contact people in the country
Ensure that GFATM has enough money to continue to fund the 128
countries that it is currently supporting (i.e. ensure sustainability)
Fund smaller treatment projects—but not through the current CCM
Address the current failings of the CCM, including its ongoing exclusion of
effective civil society participation in decision-making processes regarding
grant applications
Replace the current CCM in its entirety with a new one that is more
consultative
Coordinate regularly with other treatment providers in the country
81
SOUTH AFRICA
PEPFAR
So far PEPFAR funds the
big fish"—but it needs to target smaller
groups. PEPFAR is unclear about what it is NOT doing. It has major
resources but it is politically tip toeing with the South African gov
ernment.
— Staff member from nonprofit treatment funder
PEPFAR has been a lightning rod for controversy since it first began operating in
South Africa in 2004. It is undeniably providing substantial assistance in the
HIV/AIDS area, but its methods remain questionable.
Most participants regard PEPFAR as a parallel funding mechanism that is
inappropriately taking resources away from GFATM. One participant disagreed and
argued that PEPFAR is investing huge resources and providing intensive technical
assistance for treatment purposes. While several participants recognised that some
elements of PEPFAR are providing necessary and useful support for public sector
treatment efforts that are as yet unfunded, others criticized PEPFAR administrators
for taking credit for treating patients who are not receiving PEPFAR-funded care.
There is also some concern about how national PEPFAR patient numbers are calculated.
Mainly, though, participants were worried about the conditions attached by PEPFAR
regarding the procurement of drugs as well as the Bush administration's policies
regarding condom use, termination of pregnancy and contraception—all of which
have implications for reproductive health rights and access to appropriate prevention
programmes.
Some participants contended that PEPFAR is part of a broader political agenda of
the U.S. government to boost his credibility in the face of anti-Bush sentiments—
i.e., to make him appear human. It was recognized, however, that PEPFAR may be
creating a solid foundation to improve access to treatment for many people and
that it could become a critically important program if certain political and ideological
barriers were removed. Having said this, several respondents argued that PEPFAR
very often does not meet local needs and is contributing to turf wars within
provinces because PEPFAR does not allow two different organisation’s to work at the
same,site. One of the main concerns about PEPFAR is that it "simply does its own
thing (in Western Cape, for example) without due regard for what is happening at
a national or provincial level.
According to the US health attache, not for profit providers must meet two conditions
in order to receive PEPFAR funds: they must only use U.S. Food and Drug
Administration (FDA) approved drugs, and they must sign a declaration that the
organization will not promote sex work. However, PEPFAR-funded programmes and
partners indicated that the only condition that is strictly applied and observed is the
one requiring that ARVs be approved by the FDA.
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SOUTH AFRICA
It should be noted that SA's own medicine regulatory system requires a drug to be
approved or authorized by its Medicine's Control Council (MCC). In other words,
drugs used by a provider funded by PEPFAR will require both FDA and MCC
approval.
Ironically, at government facilities that are PEPFAR funded, PEPFAR cannot impose
the FDA registration requirement because the SA government is only obliged to use
drugs that are registered and approved by the SA MCC. The FDA requirement is '
therefore not imposed at government facilities. It is unclear if the SA government
has been asked to sign the declaration on sex work.
Many participants argued that more patients could be treated if PEPFAR-funded ART
projects were allowed to buy lower-cost generic drugs that have not been approved
by the FDA; many of them, they point out, have been cleared for us’e by WHO and
South Africa's MCC.
As noted above, many respondents were concerned about official PEPFAR prevention
policies that place higher priority on abstinence and being faithful than on encouraging
condom use. Some participants noted that because of such policies, organisations
in the developing world that are dependent on U.S. money are no longer able to
promote condoms directly. In Uganda, for example, this has resulted in a number
of community organisations closing down. Most respondents were aware of PEPFAR
and its international implications; few, however, were aware of the potential long
term implications of its programmes for prevention and treatment in South Africa.
A significant and positive aspect of PEPFAR reported by participants is its
regular (every three months) monitoring and evaluation of site and programme
implementation. PEPFAR was also commended for its efficiency and speed in
paying laboratory and other bills. Many participants were also of th§ view that it
is easier to apply for funding from PEPFAR than from GFATM.
The programmes funded by PEPFAR are concerned about how the government
plans to "take over" (fully fund) patients that PEPFAR has begun treating, especially
after PEPFAR funding ends (perhaps as soon as 2008). In other words, while in the
short term patients are benefiting from PEPFAR, there are concerns as to whether
sufficient attention and thought has been given to exit strategies in the medium and
long terms.
Other recommendations for PEPFAR include the following:
■
Drop the "global gag rule": money for treatment should be de-linked from
prevention. Either PEPFAR should support prevention separately or simply
drop its "anti-choice" conditions.
■ Drop the rule that requires all PEPFAR-funded ARVs to be approved by the
FDA. If poor countries have to get FDA approval to use generics, it
83
■l
0
increases the costs of putting patients on treatment and takes more time
for products to enter the market. Respondents noted that if more generics
were used, many more patients could be put on treatment. Until this
provision is dropped, treatment advocates should lobby the FDA to fast
track the registration of generic ARVs
■ PEPFAR should be clearer about what it does and does not fund, and how
it will ensure sustainability
■ Ensure that PEPFAR reporting requirements are not cumbersome at a
project level. Participants felt that too much detail about programme
activities was required too often
■ Ensure easier application processes for small grants and fund smaller
NGOs
■ Stop political tiptoeing with the health minister and demand certain
assurances from the government. (Still, it was suggested that PEPFAR is
more sensitive to the political complexities than UNAIDS and WHO.)
■ PEPFAR should be part of a centrally coordinated treatment programme in
the country, and not be allowed to operate independently
■ The programme should be more transparent in its leadership and
decision-making processes regarding grant applications
UNAIDS
Most participants viewed UNAIDS as a facilitator yet at the same time they were
unaware of its activities South Africa; it was thought to be "invisible" and had "no
presence. According to local UNAIDS staff, this perception is due to a number of
factors: for one thing, until recently the country coordinator was the only technical
person employed in the South Africa office (at the end of 2004 a monitoring and
evaluation officer was appointed, and in October 2005 a partnership officer was
appointed).'6 Also, according to UNAIDS staff, much of its work supports the
programmes developed and implemented by co-sponsors and thus is largely
"behind the scenes ."17
This to some extent explains why participants felt that UNAIDS has been silent
during crucial campaigns for treatment in the last few years. However, with respect
to the Geneva offices, participants recognised and were supportive of the role that
UNAIDS plays in providing annual analytical and epidemiological information, as
well as its significant contribution in making information available, particularly on
the global epidemic.
Other recommendations for UNAIDS include the following:
H
Increase its profile and presence in South Africa and in each country
where it operates by conducting awareness campaigns to let people know
its roles and functions
Increase or start consultation with key partners in South Africa18
84
SOUTH AFRICA
■ Act more forcefully as an (advocate for PLWHA, which would include being
willing to criticize government policy in South Africa
■ Be more supportive of civil society and advocacy efforts in South Africa
■
Talk more openly, directly and supportively about ART and the government's
Operational Plan
Influence strategy direction of GFATM and assist with raising money for it
Scale up and increase pressure to support the treatment and care of
children and adolescents in South Africa and elsewhere (working with
UNICEF)
WHO — including "3 by 5" staff
There is no WHO office in South Africa or dedicated WHO staff person for the
country; instead, the Southern African office is based in Zimbabwe. This may be
part of the reason that of all the multilaterals surveyed, WHO received the worst
assessment from participants. Most participants asked, "Who is the WHO?" in South
Africa and questioned whether it plays any constructive role in the country. Save for
its work on preparing and issuing international treatment guidelines’and facilitating
the WHO drug pre-qualification process, participants were hard pressed to comment
positively about WHO.
One participant lamented that the organization has "lost its focus
However, this is
difficult to assess given that at the time of writing this report, the WHO did not have
senior staff in the country. It is possible to imagine the government has not been
welcoming of a WHO presence. Recently, UN Special Envoy to Africa Stephen Lewis
said he had been banned from carrying out his duties in South Africa for the past
year.19
It is therefore recommended that WHO and the South African government should
work together to ensure that senior WHO staff are stationed in South Africa. Given
the magnitude of the AIDS epidemic in the country, this is now extremely urgent.
Other recommendations for WHO include the following:
■ Like UNAIDS, WHO should increase its profile and presence in South
Africa and the region
■ Actively support the work of GFATM in South Africa and elsewhere
■ Consider developing and issuing guidelines on health systems and human
■
resources, as well as’guidelines on using and improving existing health
systems to provide essential health services. In addition, develop
recommendations on addressing the human resource crisis in Africa:
this could include scope of practice, retention strategies, incentives,
training and professional development
Engage in South Africa (not just the international community) on essential
medicines
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SOUTH AFRICA
H The WHO pre-qualification programme should be more aggressive; for
instance, it should put pressure on generic manufacturers to submit their
products for inclusion in the review. While most participants believed that
the WHO pre-qualification programme was a good concept, many felt
that it is under-resourced and lacked a consistent plan of action
H Consult with local stakeholders and providers and be more inclusive of
African health care workers
Civil society
Most participants felt that the health minister was excluding civil society from
deliberations about the Operational Plan, with channels of information being
deliberately closed and monitored. For this reason, many health care workers said
they were afraid to speak out for fear of losing their jobs.
Many participants acknowledged the role that the Treatment Action Campaign (TAG)
in particular has played in challenging the government's HIV/AIDS policies. Most
argued that aside from TAG, AIDS Law Project and Medecins Sans Frontieres, very
few organisations have directly and consistently challenged the South African
government. All of the participants were supportive of the newly established Joint
Civil Society Monitoring Forum (JCSMF) and felt that it was doing work that should
be done by the government.20
Some participants suggested that the current relationship between TAG and the
health minister is too antagonistic, and that therefore solutions must be sought
to reduce tensions. However, others felt that the confrontation posed by TAG is
appropriate and timely. Some respondents recommended that TAG and other civil
society organisations concentrate on treatment preparedness and literacy at
community and clinic levels. In addition, several participants said that all members
of civil society in South Africa (and not just TAG) should collectively address
denialism and the lack of proper, rational leadership in the country.
Other recommendations for civil society include the following:
H
Identify additional resources to carry out community mobilisation and
treatment preparedness programmes
■ Find a coordinated and less fragmented voice and be more critical about
■
■
■
the existing political barriers that hinder ART scale up
Create partnerships at different levels, especially with smaller community
organizations
Focus on good outcomes in treatment scale up, and not just on the
negative outcomes
Get more involved in addressing the operational issues of’the national
programme by improving clinic level advocacy, by helping the government
move away from a hospital-based programme, and by ensuring that
primary health facilities offer treatment
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SOUTH AFRICA
ENDNOTES
1
The 2005 budget shows an ongoing financial commitment by the government to
address HIV/AIDS. With respect to resources set aside for the procurement of
ARVs, more than 3.4 billion rand ($504 million) has been allocated for the period
up to the end of 2007. But the award of the drug tender was only announced on
2 March 2005, some 1 3 months after the drug procurement process commenced
and more than 1 6 months after the Operational Plan was adopted.
2
These facilities are spread across all the 53 districts in the country and cover at
least 62% of local municipalities.
3
There are about 5.5 million people living with HIV/AIDS in South Africa. Of these,
approximately 200,000 are children.
4
Information compiled by the AIDS Law Project, September 2005.
5
The Operational Plan set its first patient targets at 53,000 for the first year of its
implementation. The target was then shifted twice: first by the health minister and
then by the president in his 2004 State of Nation address. In her 2005 Budget
Speech, the health minister refused to engage in any debate about patient tar
gets and argued that the initial targets were estimates—and nothing more. She
stated that patient targets are not important and that instead the debate should
be about quality of care. See here Hassan F. Joint ALP/TAC Report issued in June
2005: "Let them eat cake" - A short assessment of provision of care and
treatment 18 months after the adoption of the Operational Plan. Available at
www.alp.org.za and www.tac.org.za.
6
By the end of August 2005, the government estimated that at least 78,000
people had been initiated on ART in these facilities.
7
Medicins Sans Frontieres supports four public sector sites in the country; Absolute
Return for Kids supports 17-19 sites in the Western Cape; One2One Kids through
Kidz Positive supports two sites in the Western Cape, and PEPFAR supports 112
primary sites. Of these, about 30 are in the public sector and the rest are in the
not for profit (private) sector or are public-private partnerships. Catholic Relief
Services supports three sites in the Free State.
8
Some of the community projects run by international donors and local donors,
faith-based organisations or local communities include the South African
Catholics Bishops Conference (which runs treatment projects at 20 sites with
funding from PEPFAR and one site through non-PEPFAR funding); the TAC
Treatment Project (which started in May 2003, is currently funding, over 100
patients nationally); ACTS Mpumalanga (which started in 1996, is funded by Right
to Care and PEPFAR and receives some money for operating costs from the
NDoH); Ndlovu HAART programme (which started in 2001, and is the only
community project in the country with its own HIV monitoring laboratory).
9
Many private sector programmes are administered by disease management
programmes (DMPs).
10
Some of the larger companies that provide HIV/AIDS treatment for workers who
cannot afford to belong to a medical scheme include: Eskom; Anglo American;
Ford Motor; Daimler Chrysler; BP and Engen; Sasol; Tiger brands; Cape Town ’
Municipality; Mtel; BMW; and Unilever.
87
SOUTH AFRICA
11
Zackie Achmat and Reid Roberts in Steering the Storm: TB and HIV in South
Africa, a policy paper for the Treatment Action Campaign. Available at
www.tac.org.za.
12
Recently, the WHO Consultation on Nutrition and HIV/AIDS in Africa (co-hosted
by the national department of health) confirmed that everyone requires good
nutrition, including PLWHA. But the WHO Consultation Statement also noted that
there is no scientific evidence to suggest that good nutrition alone can treat HIV.
This is in accordance with official government policy as articulated in the nutrition
chapter in the Operational Plan.
13
The national budget has not allocated any money to SANAC since 2001-2002,
despite the fact that international protocols such as UNAIDS's Three Ones
Principles call for strengthening of national coordinating bodies accompanied by
allocation of sufficient resources. The Three Ones Principles aim to ensure that
national governments and their partners develop strong coordinating
mechanisms, partnerships and funding mechanisms that would urgently respond
to and reduce the impact of HIV and AIDS. SANAC's location within the health
department in its first term actually undermined its authority to oversee and
encourage HIV and AIDS activities in all government sectors. Strode and Grant
(2004: 26) reported that SANAC has finally managed to move its secretariat out
of the NDoH to offices outside of any government department. For SANAC's
second term of office, a trust fund has been set up and all its finances will be
managed by the trustees." The Trust was established in 2002. According to the
auditor general, "inadequate progress was made in achieving the objective of the
Trust due to failure to submit budgets to the Board of Trustees as is required by
SA law; not submitting monthly and quarterly reports on income and revenue;
and lack of monitoring and involvement by the Trustees. The auditor general also
found evidence of "fruitless and wasteful expenditure, to an amount of 571 114
rand."
14
Similarly, it was suggested that the PLWHA, children and women sector in SANAC
must'be strengthened so that it operates effectively within and outside of SANAC.
15
SANAC minutes of 17 March 2004; 19 June 2004; 7 October 2004.
16
Because UNAIDS technically is not a UN agency but is instead a collective of 10
co-sponsors (other UN agencies) it regards itself as a "supporter" as opposed to
an implementer. As such, its country level role is determined by the programme
activities of the co-sponsors*(e.g. WHO, UNICEF). At present, each country office
(globally) including the South Africa office has been tasked with working on five
core areas, identified as: supporting existing leadership for an effective national
response; supporting partnerships between public/private and civil society actors;
promoting and strengthening country management of strategic information;
capacity building to track, monitor and evaluate the national response; and
facilitating access to financial and technical resources.
For example, UNAIDS has assisted in supporting the continued functioning of the
AIDS Consortium, an umbrella body of AIDS service organizations in South Africa,
after it almost closed down. It is supporting programmes currently being carried
out by the South African National Defence Force with a view to replicating the
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SOUTH AFRICA
model with UN peacekeeping forces; it acts as the secretariat for the SA Donor
coordinating forum which meets every two months and is made up of
government, the UN and bilateral funding agencies; it assisted SANAC with
putting together proposals to the GFATM; in 2005 it assisted Soul City to put
together its GFATM proposal; and in 2004 it assisted provinces that had
previously not applied to GFATM for funding to submit proposals to the CCM.
18
This is now possible given that the UNAIDS office in South Africa has appointed a
full time "partnership" officer.
19
In his book Race against Time, Lewis singles out the South African government
and President Thabo Mbeki for what he calls bewildering policies and a
lackadaisical approach to treatment of millions of people living with HIV.
According to Lewis, "Virtually every other nation in eastern and southern Africa is
working harder at treatment than is South Africa with relatively fewer resources,
and in most cases nowhere near the infrastructure or human capacity of South
Africa." See LaFraniere, S. "U.N. Envoy Sharply Criticizes South Africa's AIDS
Program." New York Times. 25 October 2005.
The JCSMF is currently composed of the following civil society organisations: AIDS
Law Project (ALP); Health Systems Trust (HST); Centre for Health Policy (CHP);
Medecins Sans Frontieres (MSF); Public Service Accountability Monitor (PSAM);
Institute for Democracy in South Africa (IDASA); Open Democracy Advice Centre
(ODAC); Anglo American; Southern African HIV Clinicians Society (SAHCS); UCT
School of Public Health and Family Medicine; and Treatment Action Campaign
(TAC). The JCSMF aims to assist with the monitoring and assessment of the
implementation of the Operational Plan from a public health and.human rights
perspective. Its objective is to provide government and the public generally with
an ongoing and accurate assessment of the programme's implementation, to act
as an early warning system for problems, and to help communicate successes. To
date, the JCSMF has met on five separate occasions and has accordingly issued
five reports, which contain the findings of each meeting. These reports are
publicly accessible.
89
INTERNATIONAL TREATMENT PREPAREDNESS COALITION (ITPC)
Fact Sheet
What is the ITPC?
The international Treatment Preparedness Coalition (ITPC) is a worldwide coalition
of people living with HIV/AIDSand their advocates. The ITPC advocates for
universal and free access to treatment for AIDS for all HIV+ people and greater
input from HIV+ people in decisions that affect their lives. We work to achieve
these goals at the local, regional and international level.
History of the ITPC
In 2002, a group of treatment activists from around the world identified the need
for a stronger international response to address the need to provide HIV/AIDS t
reatment to millions of people who require it around the world. In March 2003,
one hundred and twenty five people with HIV/AIDS and their advocates from sixty
seven countries gathered in Cape Town, South Africa at the International Treatment
Preparedness Summit to discuss strategies to establish and strengthen:
Local and regional efforts to educate communities about treatment and
mobilize them to demand access to these drugs and;
■ local, regional and international efforts to secure the commitment and
policy changes needed from governments, multilateral institutions and
the private sector to expedite access to treatment for HIV/AIDS.
H
The ITPC grew out of this meeting as activists from around the world sought to join
forces to advance these strategies.
What Makes the ITPC Unique?
ITPC is the only international coalition of people living with HIV/AIDS and their
supporters solely devoted to advocacy on HIV/AIDS treatment access. It is a broad
coalition of people from all affected regions comprised of people working in and
for the community in their own countries and with strong expertise in HIV/AIDS
treatment and related issues. As a community voice, it combines the knowledge of
the grassroots with technical expertise, and has been successful in communicating
the concerns of people living ^ith HIV/AIDS who need treatment to governments,
United Nations agencies, the large pharmaceutical manufacturers among other
public and private bodies that influence the progress of the establishment, scale-up
and sustainability of HIV/AIDS treatment programs.
90
Collaborative Fund for HIV Treatment Preparedness
Currently, the ITPC has embarked on a partnership with the Tides Foundation, to
form the Collaborative Fund for HIV Treatment Preparedness to directly fund local
and regional treatment literacy and advocacy efforts. The Collaborative Fund has
set up Community Review Panels in each region to locally define funding priorities
and make funding decisions on specific projects. Treatment advocacy and literacy
workshops have been held or are scheduled in every region and a grant-making
program has been initiated to support local organizations' work on these topics. So
far, the ITPC and Tides Foundation have raised over US $5 million for Collaborative
Fund activities from various donors some of which include the World Health
Organization (WHO), the Rockefeller Foundation, and the Open Society Institute.
Other Activities & Accomplishments
S
Solidarity Day in Support of Treatment Access in South Africa. In April
2003, ITPC members joined in demonstrations in their own countries to
urge the South African government to sign and implement a national
treatment and prevention plan that includes antiretroviral treatment for
people living with HIV/AIDS.
■ Solidarity Day in Support of Thai Drug Users Network. In June 2003 ITPC
members joined in demonstrations in their own countries to protest the
extra-judicial killing of Thai drug users and to press for HIV/AIDS
treatment for Intravenous Drug Users.
■
First meeting of people with HIV/AIDS with the Director General of WHO.
In November 2003, a delegation of eight people with HIV/AIDS and their
advocates from ITPC travelled to Geneva for the first meeting between a
Director General of the WHO and people living with HIV/AIDS from
around the world. The group discussed the WHO's 3X5 initiative to scaleup antiretroviral therapy to 3 million by 2005. The group also met with
senior staff at UNAIDS and the Global Fund to fight HIV/AIDS,
Tuberculosis and Malaria to discuss access to treatment.
■ Inclusion of active drug users in the WHO 3X5 initiative. In February
2004, ITPC members, supported by over two hundred people which
included drug users, HIV-positive people and their advocates from around
the globe, called on the Director General of the WHO to ensure the equal
involvement of active drug users in the scale-up of antiretroviral therapy
proposed by the WHO and take a leading role in recommending
governments to make healthcare principles a priority over the law
enforcement approach to illicit drug use.
91
■ Inclusion of Methadone on the WHO's List of Essential Drugs and
Medicines. In collaboration with harm reduction advocates across the
world. ITPC members pushed for the inclusion of methadone on the
WHO's list of essential drugs and medicines as a part of a comprehensive
approach to HIV/AIDS care. Methadone was approved for inclusion on the
list in March 2005. This issue was first raised in the ITPC meeting with the
WHO Director General in November 2003.
■ World Community Advisory Board Meetings with Brand-Name and
Generic Pharmaceutical Companies. In February 2004, ITPC members
met with Boehringer Ingelheim, Glaxo Smith Kline and Roche to discuss
concerns about drug pricing and research practices. In particular, ITPC
advocated for new policies by multinational companies on pricing for
middle-income countries. In January 2005, ITPC members met with
generic drug makers, Cipla, Ranbaxy, Hetero and Strides, to discuss
quality control over generic manufacturing, paediatric formulations,
second-line regimens and pricing policies.
■ Solidarity Day with FrontAIDS in Russia. In December 2004, ITPC
members sent faxes to protest to the police station in Kaliningrad Russia,
where dozens of activists from FrontAIDS were being held after staging a
demonstration to demand access to treatment and human rights for drug
users. All activists were promptly released from custody.
Advocacy for the revision of the antiretroviral procurement list in Moldova.
In 2003, ITPC members in the Newly Independent States discovered that
Moldova was procuring an expensive, sub-optimal antiretroviral regimen
with its grant from the Global Fund. Through advocacy with the Global
Fund, the WHO and others, ITPC was instrumental in rectifying this situation.
■ Protest on Health Sector Spending Caps by the International Monetary
Fund and the World Bank. In September 2003, ITPC members sent a letter
to the Managing Director of the IMF and the President of the World Bank
to urge them to modify macroeconomic policies that keep health sectors
from growing to meet the needs of the AIDS epidemic.
Governance & Structure of the ITPC
The ITPC is a social movement, a coalition of individuals committed to treatment
access, not a non-governmental organization or a network with a secretariat. This
loose structure allows us to invest our energies and resources in our treatment
advocacy and literacy work instead of having to sustain an organizational structure
and move quickly to adapt and evolve to the changing realities of the epidemic. A
Code of Governance for the ITPC is available at:
http://health.groups.yahoo.com/group/internationaltreatment preparedness
92
International Steering Group, Regional Advisory Committees gnd Thematic
Working Groups
An International Steering Group (ISG) provides strategic guidance to the movement
and deals with critical operational issues. The ISG is comprised of 30 treatment
activists, 15 men and 15 women, from the following regions:
■ Central & Western Africa;
Eastern Africa;
■ North Africa & the Middle East;
Southern Africa;
■ East Asia & the Pacific;
South Asia;
■ South East Asia;
Caribbean;
■ Central America;
■ South America;
■ The Baltic's & the Newly Independent States;
Eastern Europe;
■ Australia, New Zealand & Japan;
■ Western Europe;
B The United States & Canada
Regional Advisory Committees (RACs) have been established to foster treatment
literacy and advocacy efforts in their respective regions and identify issues to be
addressed in the international setting.
Funding
The ITPC does not raise funds for day-to-day activities. Members donate their time
voluntarily. Funds have been raised for certain projects initiated under the aegis of
ITPC (e.g. meeting with generic antiretroviral drug manufacturers), but allied
organizations act as the fiscal sponsor and provide financial management for these
activities.
Membership
As of December, ITPC had over 600 members from over 100 countries. Membership
is invited from all those individuals, people living with HIV/AIDS and their advocates,
who are committed to fight foe HIV/AIDS treatment access. Members are expected
to participate and contribute to the best of their ability. While members are free
to act under the name of the movement, they may only act in capabilities that
enhance access to treatment, but may not act in formal capabilities such as
fundraising without the approval of the International Steering Group. There is no
fee or other requirements for membership in ITPC. The ITPC is a coalition of
individuals, although members may be active participants or leaders in other local,
regional or international networks, NGOs or other groups. Membership in the ITPC
is initiated by joining the ITPC email group at
http://health.groups.yahoo.com/group/internationaltreatmentpreparedness.
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