1. Treatment 2.0: The Next Phase of HIV Treatment and Prevention Scale-Up
A Community-Based Response
Table of Contents
1. Project Background: Ensuring Communities’ Place at the Heart of the Future Response ....... 3
1.1 Underlying principles and focus areas ................................................................................ 3
2. Opportunities and Challenges for the Next Phase of Treatment and Prevention Scale-up ..... 4
2.1 Innovative models and approaches: Treatment 2.0 ............................................................ 6
3. Role of Affected Communities in HIV Response ...................................................................... 7
3.1 Advocacy roles and engagement ........................................................................................ 7
3.1.1 Human rights and rights-based approaches ................................................................. 8
3.1.2 Accountability and monitoring ..................................................................................... 10
3.1.3 Intellectual property and trade issues ......................................................................... 11
3.2 Service provision roles and engagement .......................................................................... 12
4. Funding Mechanisms: Meeting the Needs for the Next Phase of Scale-up ........................... 14
4.1 Resource development for increased community capacity ............................................... 16
5. Key Issues and Recommendations from Community Consultations ...................................... 17
6. Conclusion .............................................................................................................................. 19
1

2. Acronyms and abbreviations
ART = antiretroviral treatment
ARV = antiretroviral drug
CBO = community-based organisation
CSS = community systems strengthening
Global Fund = Global Fund to Fight AIDS, Tuberculosis and Malaria
ITPC = International Treatment Preparedness Coalition
MSM = men who have sex with men
PEPFAR = U.S. President’s Emergency Plan for AIDS Relief
PLHIV = people living with HIV
TB = tuberculosis
UNAIDS = Joint United Nations Programme on HIV/AIDS
WHO = World Health Organization
Presentations, background materials, agenda and participant lists from the consultations
referred to in this report can be found at: http://itpc.wikispaces.com/Treatment2.0
Acknowledgements
Many people contributed to the development of this project and ITPC would like to thank them
here for their support and hard work, including all those who presented and attended the
meetings. We are grateful to Open Society Foundations and UNAIDS for financial support. We
send a particular note of thanks to Jeff Hoover and Julia Greenberg.
Moises Agosto Rose Kaberia
Joseph Amon James Kayo
Sam Avrett Loide Iipinge
Sylvère Bukiki Sharonann Lynch
Thomas Cai Chris Mallouris
Robert Carr Lillian Mworeko
Michaela Clayton Rolake Odetoyinbo
Jonathan Cohen Shiba Phurailatpam
Karl Lorenz Dehne Bernhard Schwartlander
Cynthia Eyakuze Boniswa Seti
Loon Gangte Mariangela Simao
Gregg Gonsalves Kate Thomson
Rico Gustav Gregory Vergus
Fatima Hassan Pat Zerenga
Jennifer Ho Andrei Zlobin
David Hoos
The following ITPC staff contributed to this project:
Solange Baptiste – Program Director
David Barr – Senior Consultant
Bactrin Killingo – Africa Program Manager
Howard Lee – Administrative Support
Michael Quan – Finance Director
Ed Attapon Ngoksin – Communications Coordinator
Sarah Zaidi – Executive Director
2

3. 1. Project Background: Ensuring Communities’ Place at the Heart of the Future
Response
With support from the Joint UN Programme on HIV/AIDS (UNAIDS) and the Open Society
Foundations (OSF), the International Treatment Preparedness Coalition (ITPC) was asked to
ensure that community mobilization, advocacy and service delivery are supported as a central
strategy of the next phase of HIV treatment and prevention scale-up. To that end, ITPC in
January 2011 convened a Planning Committee of experts in the fields of HIV/AIDS service
delivery, HIV policy, community organizing, and human rights to create a conceptual framework
for a project focusing on such critical issues. This was followed by a series of meetings of
community constituents to develop recommendations on how best to support community
mobilization for the dramatic scale-up of treatment that is required to reach universal access
goals. The initial findings of HPTN 052 noting the prevention benefits of treatment were
released during the planning phase of this project, and the scope was widened to also
incorporate this new evidence and the roles of communities and programs.
This report summarizes some of the main discussion areas and outcomes from the two
meetings1 that had been held as of September 2011. The first, which took place 3-5 May 2011
in Bangkok, Thailand, brought together nearly 50 representatives from Asia and Eastern
Europe. A second community meeting held 1-3 June 2011 in Johannesburg, South Africa
included a similar number of representatives from across Africa. The Asia-Pacific Network of
People Living with HIV (APN+) co-hosted the Bangkok meeting with ITPC, while the AIDS and
Rights Alliance for Southern Africa (ARASA) served as co-host for the Johannesburg meeting.
The overall goals of the community meetings were to:
A. Identify the key roles as advocates and service providers that communities can play in
meeting universal access targets and Treatment 2.0 goals and what types of support
communities will need to fulfil these roles
B. Identify the main challenges that communities face with regards to scaling up HIV
services and maximizing opportunities raised by emerging scientific developments
1.1 Underlying principles and focus areas
The challenges raised at the two community meetings underscore the major unmet needs and
priorities in local and national HIV/AIDS responses. However, participants recognized that they
can and must be drivers of change moving forward. They therefore also focused on identifying
potential solutions and priority activities aimed to overcome some of these challenges. The
recommendations developed at the meetings are described in Section 5 of this report.
Most notably, the meeting participants agreed that the following broad factors are (or should be)
true in all contexts:
• Governments have a responsibility to meet the needs of their people and communities.
• Community-based service provision can provide unique and particular knowledge and
expertise. Community-based service approaches are often better able to build and
sustain trust, which can provide effective ways for people to access and stay in care.
1
A third meeting was initially scheduled for representatives from the Caribbean and Latin America, but
funding was not available. ITPC still plans to hold this third consultation when possible.
3

4. • Community advocates work to ensure that governments meet their responsibilities. Their
input and roles may vary, but in no circumstance are community groups anything less
than essential elements of an effective HIV/AIDS response.
• A ‘rights-based’ approach to policy and service delivery provides the most effective way
for people living with and at risk for HIV to effectively seek and utilize health and support
services.
With these basic principles in mind, participants at the community meetings were asked to
consider some key questions when considering priority engagement areas and solutions.
Among those questions were the following:
• How do we solidify and continue the gains made in access to HIV treatment and
prevention?
• How do we ensure that all of our work is done within the context of human rights?
• What can be done to improve access to services for members of key affected
populations?
• Irrefutable evidence now exists that treatment can be among the most important
elements of comprehensive HIV prevention. How do we incorporate this into our work?
• How do we identify and meet the needs of the large number of people who would benefit
from beginning ART, many of whom are asymptomatic and have less incentive to seek
HIV testing and may have less perceived reasons to remain in HIV care and treatment?
2. Opportunities and Challenges for the Next Phase of Treatment and Prevention
Scale-up
The advent of triple-combination antiretroviral treatment (ART) in the late 1990s changed the
course of the AIDS epidemic. Reductions in morbidity and mortality with the use of ART have
long been demonstrated for people living with HIV (PLHIV) who initiate treatment with fewer
than 200 CD4 cells/mm. The World Health Organization (WHO) and other treatment guidelines
have changed as evidence accumulates that starting treatment earlier provides better health
outcomes for people with fewer than 350 CD4 cells. As a result of the change in WHO
guidelines, which now recommend starting ART at <350 CD4 cells, the number of people
recommended to begin ART by 2015 doubled.
In May 2011, the results of a groundbreaking study begun in 2005 (known as HPTN 052) were
released confirming that successful suppression of HIV viral replication with ARV drugs can
prevent sexually transmitted HIV infection. The HPTN 052 results confirmed indications from
less rigorous trials and observations showing that high rates of ART use by PLHIV cause a
significant drop in subsequent HIV infection rates in certain populations and cohorts.2
Altogether, the findings offer clear proof that population-wide access to treatment with ARV
drugs could be an important new addition to the toolkit of HIV prevention interventions.3 The
2
See UNAIDS Outlook Report 2010; available at
http://data.unaids.org/pub/Outlook/2010/20100713_outlook_report_web_en.pdf.
3
The HPTN 052 study was a prospective, randomized trial (the “gold standard” of clinical trials). It
compared two groups of heterosexual couples (a total of 1,750 couples in all) in which one partner was
living with HIV, with the important caveat that at enrolment the HIV-positive partner was required to have
a CD4 count above 350 cells/mm. In one group, the person living with HIV was immediately provided with
ART; in the other group, treatment was delayed unless and until the CD4 cell level dropped to <250 or
clinical symptoms of AIDS developed. Interim results announced in May 2011 showed a 96 percent
4

5. findings that support the value of “treatment as prevention” are particularly important given the
limitations of current prevention efforts.4
These new findings and their potential implications were discussed at length during the Bangkok
and Johannesburg consultations organised by ITPC. Many participants were not aware of the
HPTN 052 findings. Several expressed concern about a potential shift in resources, moving
away from treating those most in need and towards a primary focus on the prevention-related
use of ART. Currently, there are no known proposals to shift funding for treatment for ART-
related prevention. However, such perceptions indicate that the concept of treatment as
prevention will need to be better and more clearly explained to all actors in national and local
HIV/AIDS responses, from community groups to policymakers.
The impact of ART on prevention can be seen as an important component to provide
combination prevention packages that will lead to reduced HIV transmission and incidence. This
opportunity is further bolstered by other new prevention approaches including male
circumcision; microbicides; and oral pre-exposure prophylaxis, also known as PrEP. Already in
the prevention toolkit and implemented with varying impact were awareness and behaviour-
change programmes; male and female condoms; interventions aimed to prevent mother-to-child
transmission; and access to clean needles and other drug-injecting paraphernalia.
Perhaps most important, the role of treatment as a prevention intervention offers a new way to
conceptualize how AIDS services are delivered. In particular, it provides new opportunities to
integrate HIV treatment and prevention services, which may require significant altering of
current programmes, structures and approaches that consider them distinct and separate HIV
service domains. HIV service delivery can be re-configured with a primary focus on ensuring
that all those who meet current treatment guidelines have access to ART—along with the scale-
up in HIV testing this requires. This will not only maximize the prevention benefit that treatment
provides, but also provide a more efficient framework through which a combination of additional
prevention interventions can be offered to people testing either positive or negative.
In June 2011, at the UN General Assembly High Level Meeting on AIDS, member states
committed to an ambitious set of goals including a 50 percent reduction in new sexual
transmissions, elimination of vertical transmission and a total of 15 million people on ART by
2015.5 That commitment was secured partly in response to the promising new reports and
developments.
The good news and ambitious targets may not necessarily translate into success, however. The
goals agreed to at the UN High Level Meeting are challenged by several longstanding and new
obstacles. Perhaps the biggest one is the willingness of governments to provide sufficient
resources to meet the goals and realize the potential. Billions of dollars have been spent over
the past 10 years in scaling up HIV prevention, treatment, care and support; approximately $20
reduction in risk of HIV transmission in favour of the group receiving ART. The findings were so
overwhelmingly positive and statistically significant that the trial was immediately stopped four years
ahead of schedule. More in-depth information about the results of HPTN 052 may be found online at The
Lancet: www.thelancet.com/journals/lancet/article/PIIS0140-6736%2811%2960713-7/fulltext?rss=yes.
4
Issues regarding ARV pre-exposure prophylaxis (PrEP) are beyond the scope of this document and
were not discussed in detail at the community consultations around which this document is based.
5
As cited in “Political Declaration on HIV/AIDS: Intensifying our Efforts to
Eliminate HIV/AIDS” approved during the meeting. See
www.un.org/ga/search/view_doc.asp?symbol=A/65/L.77.
5

6. billion a year is needed through 2020 to speed up the process and reach all of those in need.
This is a daunting goal in every respect. In terms of HIV treatment access alone, it is estimated
that the number of people receiving ART should more than double from the current 6.5 million.
The financial needs are greater at the very time that HIV/AIDS funding is stagnant and most
traditional donors are reluctant to commit to increased finances. Governments in many high-
burden countries are also not meeting commitments to boost health spending, including for
HIV/AIDS.
In addition to more funding, meeting treatment and prevention targets requires substantially
increased scale-up of service provision and greater flexibility in how services are provided.
Systems, structures, policies and advocacy must be strengthened to increase the availability
and use of HIV testing and prevention services, to
ensure good linkage to care and treatment, and to
support people so that they can remain in care and In the Indian context, if you are
use treatment effectively. HIV-positive, lack of availability
of treatment is not an issue.
People living with and affected by HIV and the There are millions on treatment
organisations that represent them should be at the in India. The issue is that many
forefront of all of these efforts as both advocates people who test are not reaching
for improved access and as critical contributors to ARV centres. Treatment 2.0
service provision. The history and effectiveness of provides an opportunity to talk
about civil society treatment
HIV community-based advocacy for treatment
services and greater
access and stigma reduction is well documented. involvement of
In addition, evidence from around the world PLHIV…including in helping
indicates that community-based service provision— overcome the gap between
for example, services provided in the community by testing and actually getting on
community-based organisations (CBOs) as well as ART.
services provided by community members within —Loon Gangte, president of
health facilities—are crucial components of rights- Delhi Network of Positive
based, high quality HIV services. CBOs have skills People, at community meeting in
and access that can provide comparative Thailand (May 2011)
advantages over services provided by traditional
health care providers. While this is often the case
in generalized epidemics, the community sector is
often a primary source for services and support for members of key affected populations such
as men who have sex with men (MSM), sex workers, and drug users.
The growing recognition of the primary role of community engagement in the next phase of
scale-up is a vital development for millions of people living with and affected by HIV. They
comprise and rely on community groups for advocacy, services and support that other actors
(including governments) are often unwilling or unable to provide effectively, if at all. The timing is
right to make these advantages known and shift priorities accordingly. Community-based AIDS
advocates and service providers understand that the confluence of treatment as prevention, the
new WHO treatment guidelines, and the welcome emphasis on community mobilization among
the HIV/AIDS donors and policymakers is an opportunity to demand a prominent increase in
resources for community-based HIV responses.
2.1 Innovative models and approaches: Treatment 2.0
6

7. Many of these priorities and challenges are carefully considered in the Treatment 2.0 agenda,
which was initiated by UNAIDS and WHO in 2010 as part of an effort to rejuvenate efforts to
achieve universal access to HIV prevention, treatment and care.6
The Treatment 2.0 initiative provides a solid framework for further scale-up of ART access
based on current information and available resources. It aims to radically simplify HIV treatment
in order to deliver the benefits to as many people as possible while reducing costs. To that end,
UNAIDS, WHO and their partners have identified five pillars of Treatment 2.0 (which the
agencies also call “priority work streams”):
• Optimizing drug regimens—making drug regimens less toxic, more effective, and
easier to adhere to
• Providing point of care diagnostics—making viral load, CD4 cell test and other
diagnostic and monitoring tools readily available and easier to use
• Reducing costs— an overarching workstream that comprises more efficient service
delivery including task shifting, increasing access to and use of generic medicines, and
encouraging price competition for drugs
• Adapting delivery systems—decentralizing treatment services and integrating with
primary care services
• Mobilizing communities—scaling up community-based advocacy and service delivery
to promote access to care and protect human rights
3. Role of Affected Communities in HIV Response
Discussion at the ITPC-led community meetings centred around two overarching and
complementary areas where community engagement is essential: advocacy (Section 3.1) and
direct service provision (Section 3.2). Many community groups are already providing invaluable
support and leadership in one or both areas. Yet the sector will need greater and more
consistent resources in order to maximize its impact.
3.1 Advocacy roles and engagement
The role of HIV-affected communities as advocates is well documented, and includes:
• Monitoring and accountability of health systems and government responses
• Ensuring access to high quality and equitable health services
• Protection against stigma, discrimination, and criminalization efforts
• Resource mobilization
• Policy analysis regarding the development and delivery of essential medicines
• Ensuring the meaningful involvement of PLHIV in policy and programme development
6
Other core partners in the Treatment 2.0 agenda include WHO; the world’s two largest sources of
HIV/AIDS assistance—the Global Fund to Fight AIDS, Tuberculosis and Malaria (Global Fund) and the
U.S. President’s Emergency Plan for AIDS Relief (PEPFAR); and numerous not-for-profit entities
including ITPC and the Bill & Melinda Gates Foundation.
7

8. Community advocacy responds to some of the most intractable reasons for gaps in access to
HIV treatment and prevention services. The following challenges (many of which are
interrelated) are common and ongoing in many contexts:
• infrastructure-related problems (especially those associated with transportation),
• drug stock-outs (including for ARVs and medicines to treat opportunistic infections),
• lack of access to diagnostic equipment,
• inadequate nutrition,
• lack of mobile facilities,
• corruption, and
• lack of awareness about HIV in general, which allows myths and misunderstandings to
flourish.
Such challenges are often the result not only of limited financial resources, but also poor
planning and organisation on the part of responsible health systems. Incompetence and
corruption are often intensified by human resource constraints, especially when facilities are
understaffed. Whatever the reason(s), the result is usually low quality or essentially nonexistent
health services, including those related to HIV treatment, care and prevention.
3.1.1 Human rights and rights-based approaches
An environment of safety in which people at risk for HIV can demand and use services without
fear of stigma, discrimination and abuse of their human rights is a necessary prerequisite for
implementation of all HIV treatment services, including those for prevention. Without sufficient
human rights protection, seeking HIV services can often be more immediately dangerous than
HIV itself. Meeting universal access targets requires both top-down programmes including legal
reform and ground-up empowerment and mobilization programmes. Both are essential to
ensuring that the rights of HIV-affected people and communities are protected and to ensuring
the long-term success and sustainability of health services.
What are “rights-based” services? Increasing demand for HIV care in a context that
protects human rights.
Rights-based services constitute services and advocacy activities that seek to strengthen and
protect human rights. They can also refer to the provision of health and social services in ways
that support and respect human rights. For example, a “rights-based” approach to HIV testing is
one that respects confidentiality, provides appropriate information about the test and its
consequences, and provides linkage to care and other support services. Mandatory testing, the
release of test results to others without permission, and the failure to link testing to care lead to
further stigma and discrimination and make it difficult if not impossible for patients to utilize HIV
testing services effectively.
Some basic principles were outlined at the meetings:
• Guidelines determining the optimal time to start ART must be based on what is best for
the individual patient. People living with HIV should not be expected to begin therapy for
the primary purpose of preventing HIV transmission; the primary purpose of treatment is
treatment. Patients should not be compelled to risk earlier development of ARV
resistance and/or suffer drug-related side effects unless there is clear evidence that
8

9. earlier use of ART can be beneficial for the patient in prolonging life and improving the
quality of life.
• If resources are limited, decisions about who should receive ART must be based on the
need to treat the sickest patients first and not based on perceived opportunities to
prevent new infections. The best way to address this is to ensure that all those meeting
current treatment guidelines have adequate access to ART and other health care
services.
• The choice to use ART remains a personal choice. Patients have the right to decide not
to take ART.
• The availability of second- and third-line treatment combinations is essential to long-term
use of ART. This will be especially important as earlier treatment is considered to
maximize both treatment and prevention benefits of ART.
• Access to HIV testing and linkage to care are human rights. A reframing of the global
discussion about testing is needed in which early initiation of treatment, and thus testing,
is recognized as a right. The role of communities is to remove the barriers that act as
impediments to realizing that right.
• Access to information about the benefits and availability of treatment is also a human
right. There has been reluctance in many countries to raise awareness about the
availability and benefits of treatment. Meeting participants speculated that this is
because governments do not want to increase demand that they do not have the
resources to meet. However, increased awareness about the benefits of treatment
should be seen not only as a right to information, but also as an important incentive to
increase the use of testing and health services.
We talk a lot but don’t really act, including regarding stigma and discrimination and human
rights violations. In most of West Africa for example, there is no treatment in prisons and we
have reports showing high rates of HIV (around 30 percent) in prisons…but nothing is done.
—Sylvère Bukiki, coordinator of ITPC’s West Africa region (based in Côte d’Ivoire), at
community meeting in Johannesburg (June 2011)
The following are recommendations from the consultations of advocacy-oriented human rights
interventions for community organisations to take on that contribute to the realization of
universal access treatment and prevention targets:
• Address factors outside the health system that impede access to care such as police
violence, violence in the home, pervasive stigma, and fear and discrimination in
employment
• Educate police, health care workers, local and religious leaders, and business leaders in
order to change attitudes about living with HIV and about the people most vulnerable to
HIV infection
• Hold global funding institutions like PEPFAR and the Global Fund accountable for their
roles in funding governments whose HIV/AIDS policies violate human rights
• Document rights violations against PLHIV and key populations
• Mobilize demand for the right to health
9

10. One of the most important human rights-related advocacy roles that communities can play is to
combat HIV-related stigma and discrimination on the part of health care workers. Meeting
participants considered this one of the biggest challenges to effective scale-up of
comprehensive HIV services. Examples range from judgmental attitudes to breaches of
confidentiality to outright denial of services. Such rights violations are seen as a key reason
many people are reluctant to be tested for HIV or to seek care if needed.
Key affected populations—e.g., men who have sex with men, sex workers, drug users,
prisoners and migrants—often have insufficient access to essential HIV services, from
prevention information to treatment. This happens in countries with generalized epidemics
where the needs of key populations are often ignored, as well as in countries with concentrated
epidemics, where key populations are most in need of services but discrimination against them
is rife. Rights-based HIV programming often does not exist, or is only interpreted to extend to
“regular” or “responsible” people who do not engage in controversial or criminalized behaviours.
Resources are often not targeted toward those populations that most require services.
The lack of women’s rights and gender equity is an equally massive barrier and thus an
essential advocacy priority. Women bear the brunt of HIV epidemics in many countries. Their
vulnerability is particularly intense in Africa, where women comprise about 60 percent of all
people living with HIV. Rapid scale-up of comprehensive HIV services will never succeed
without addressing directly the issues that create and sustain this vulnerability.
Community representatives acknowledge that women’s lack of power and rights is particularly
pronounced in rural areas of many countries where traditional customs hold sway. Some of
those customs cited during the community meetings, such as widow inheritance and wife
cleansing, are not only violations of women’s rights but also pose major HIV transmission risks.
Women are often forced or coerced into other risky situations by economic necessity. In some
countries, such as South Africa, intergenerational sex is relatively common; young women often
have little choice but to accept support from (and consequently have sex with) older men simply
in order to survive. Women have fewer legal rights in many countries as well, a situation that
further limits their ability to make independent choices for themselves and their families. When
faced with gender-based violence and abuse they may have little or no realistic recourse due to
social and legal conditions that isolate and shame them, even though they are victims.
Stubbornly high levels of mother-to-child transmission of HIV in some countries also underscore
the need for better advocacy and services for women. This persistent occurrence is especially
outrageous because such transmission is easily and cheaply prevented when women and their
families have access to even a basic level of services. The only excuse for continued high rates
of vertical transmission—or, really, any vertical transmission at all—is lack of political will and
prioritization by, in most instances, governments.
3.1.2 Accountability and monitoring
Monitoring is a role of civil society groups everywhere. It promotes accountability—within
government and within civil society itself—to expose corruption, rights violations, and poor
performance. Independent monitoring also helps citizens recognize the recipients of public
funds and priorities; increased transparency in this regard can help force allocations more in line
with social needs, such as health.
Monitoring is difficult and time-consuming. As many meeting representatives stressed, they and
their counterparts often lack the capacity or understanding of how to do it efficiently (e.g.,
10

11. monitoring expenditures and deciphering government budgets). They need adequate training
and financial support to conduct this role adequately. Only a handful of governments in Africa,
for example, have ever met their Abuja Declaration commitment (agreed to in 2001) to allocate
at least 15 percent of their national budgets to health. Community advocates are already railing
against their leaders for this failure, but they need additional support to make the campaigns
more effective.
Similarly, community groups need sufficient capacity to monitor the quality of services provided
at all levels. This, along with systematic efforts to identify rights violations, is a role that only
community groups can be expected to play effectively. No other sector has the requisite
independence or trust among people living with and affected by HIV.
3.1.3 Intellectual property and trade issues
One of the most important trends in recent years has been the steep reduction—in some cases
by more than 90 percent—in the price of many individual ARVs (at least those for first-line
regimens). This trend stemmed from two complementary developments: strong and relentless
community-based advocacy, and the growing availability of generic, lower-cost ARVs.
Generic ARVs currently comprise some 90 percent of all HIV drugs procured and distributed in
Africa; their lower costs are critical for the financial viability of many countries’ treatment
programmes. Continued and improved access to generic ARVs is under threat, however. Many
manufacturers of originator-brand medicines are strong supporters of proposed trade
agreements between developed and emerging economies that require the latter to tighten
patent laws. The European Union, for example, for many years sought to include provisions in a
trade agreement being negotiated with India that would have crippled Indian generic drug
manufacturers and severely constrained access to cheaper ARVs worldwide. The government
refused to accept such demands, a decision it made at least partly in response to pressure from
community-based activists in India and around the region.
Another threat to access to generic ARVs is coming from national governments in some
developing countries themselves. Most notably, the Kenyan government passed a law in 2009
that takes aim at “counterfeit” medicines. While these are usually defined as “fake” drugs, an
unintended potential consequence of this new legislation and its poorly worded language is that
generic medicines (including ARVs) can be considered “fake” and can be seized and prevented
from distribution if charged with being counterfeit. This possibility has prompted some Indian
drug companies to threaten to halt shipments to Kenya. If this happens, the Kenyan HIV
programme would probably collapse: more than 300,000 Kenyans are now on ART regimens
that are nearly exclusively composed of Indian-made generics.
Activists in Kenya filed petitions against the new law and have secured a public hearing for later
in 2011.7 If the petitioners succeed, their efforts will lead to amendments that clearly state that
“generic” does not equal “counterfeit”. This potential outcome may only represent an initial
victory in a much longer series of battles. The Kenya law has unfortunately spawned copycat
bills in neighbouring Tanzania and Uganda, and officials in those two countries are so far
impervious to opponents’ complaints.
7
The hearing at the High Court was originally scheduled for July 2011, but was subsequently delayed for
at least two months. See www.anticounterfeitconcerns.info/news/123-new-dates-set-for-hearing-of-the-
anti-counterfeit-court-case.
11

12. Global and national advocates are increasingly worried that this trend will spread elsewhere.
The EU-India dispute regarding patents and intellectual property issues, efforts by the United
States to negotiate bilateral free trade agreements that sidestep international treaties, and the
efforts to pass misguided anti-counterfeiting laws highlight the importance of ensuring that
community groups have the knowledge and ability to conduct advocacy in complex areas such
as international trade laws, intellectual property and patent protection. They are far more likely
than national governments to approach such issues from the perspective of PLHIV and those in
need of essential services, including affordable and accessible essential medicines.
3.2 Service provision roles and engagement
Despite the tremendous success over the past eight years in both increasing use of ART and
reducing new infection rates, HIV testing rates are low, millions of people still need access to
treatment, and new infection rates are unconscionably high. Meeting the UN High Level Meeting
goals—by 2015: 15 million on ART, a 50 percent reduction in sexual transmission and
elimination of vertical transmission—will require a large increase in service delivery. Figure 2
below illustrates the difficulties encountered in initiating and retaining people on ART. It provides
an example from Mozambique that shows the attrition along the “cascade” of care from testing
from HIV to being adherent on ART. The challenges presented here must be addressed if the
High Level Meeting goals are to be met.
Figure 2. Example of attrition in “cascade” of care
12

13. Community-based providers can play a central role in efforts to increase demand for and use of
HIV testing, prevention, treatment, care, and support services, including services to support
retention in care and adherence to treatment. There is no single model applicable for every
context or country; communities have different strengths and responsibilities depending on the
nature of both the epidemic and the government response in their country or region. For
example, some communities may prioritize community-based services through independent
organisations reaching populations that cannot access government services, while others may
prioritize strengthening community-based responses within the capacities of government health
services through utilization of community health workers.
Yet in general, community-based providers in all countries and regions have skills and reach
that can augment those of traditional health care providers. Some of the more important of
those advantages were identified by meeting participants and are highlighted in Table 1.
Many of the treatment and prevention services listed in Table 1 are currently provided (if at all)
exclusively by a specific type or level of health care worker within the formal health system.
Often this stems from policies and traditions that may once have made sense, but are
increasingly obstacles to improved access.
For example, there is little rationale for
mandating that only doctors can administer
Testing…is key for underpinning the
and monitor ART. Such policies create
success of treatment scale-up. In Africa,
bottlenecks and delays nearly everywhere,
we see that only perhaps 1 in 10 people
and the negative impact is especially
know their status. But if people don’t know problematic in places with shortages of health
their status, there’s not much that can be care personnel. The situation is exacerbated
done. This points to the need for greater by the fact that such places tend to be where
treatment understanding and awareness. HIV is particularly burdensome across
—Bactrin Killingo, ITPC’s Africa society.
coordinator (based in South Africa), at
community meeting in Johannesburg
Task-shifting is therefore an essential priority.
(June 2011)
The shifting need not be only within formal
health structures, but can be expanded to
utilize the capacities, energy and knowledge
Table 1. HIV services and activities that community-based providers are uniquely placed
to deliver
Treatment Prevention Advocacy
• Adherence support • Prevention of vertical • Monitoring and accountability
• Testing and counselling transmission (health systems, government
• Treatment literacy • Harm reduction services (syringe responses, rights abuses,
• Linkage to care/support services exchange, opioid substitution quality of services)
• Linkages to harm reduction therapy [OST], etc.) • Quality assurance of health
services • Sexuality education services
• Management of health and • Sexual and reproductive health • Anti-stigma, anti- discrimination,
psycho-social needs following and rights awareness and decriminalization
testing • Condom distribution efforts(legal support, law reform,
• Disclosure support • PrEP (pre-exposure prophylaxis) lobbying)
• Treatment delivery (a treatment education • Policy analysis around access to
extension role for community • Education on TB infection control and development of essential
organisations) • Contact tracing/partner medicines
• Case management notification support • Ensuring the meaningful
• Nutritional support • Client negotiation, involvement of people living with
collectivization, peer outreach HIV in policy and programme
skills for sex workers development.
•
13
Promotion of male circumcision
• Post-exposure prophylaxis (PEP)
for sexual assault survivors

14. available throughout society, especially among people directly affected by HIV. In regards to the
ART example mentioned in the previous paragraph, with proper training and supervision, nurses
and peer counsellors in health facilities and CBOs can prepare patients for treatment, dispense
drugs regularly, and monitor their use (e.g., through diagnostic tests and regular follow-ups).
More broadly, communities are well-placed to play more extensive roles in facilitating the initial
engagement of patients into prevention and testing; assisting in the linkage from testing to
health care and treatment; and providing support services to ensure sustainability and retention
on treatment. They can also be directly involved in improving all aspects of a combination
prevention approach, including the design and roll out of targeted behaviour-change support
programmes, raising awareness about and providing linkage to male circumcision programmes,
implementing syringe exchange and harm reduction programmes, and (ideally) explaining the
rationale for and effectiveness of the treatment as prevention approach to patients.
(The Web annex to this report contains numerous examples of community-based service
delivery approaches, including several of the sort that are currently undertaken by participants
at the ITPC-led community meetings.)
Box 1. Study highlights benefits of community-based services to increase HIV testing
uptake
Recent findings from an ongoing study (HPTN 043) underscore the benefits of community-based
intervention to increase HIV testing and case detection. The randomised trial compared clinic-based
versus community-based voluntary counselling and testing (VCT) in different communities in three
countries, Tanzania, Thailand and Zimbabwe. Over a three-year period (2006-2009), the number of
people having a first ever test for HIV was significantly higher at community-based sites (many of
which included mobile services) compared with fixed site clinics in hospitals and health centres in all
three countries. The difference was major in all three places: 10 times as many first HIV tests through
community-based sites in Zimbabwe and four times and three times as many in Tanzania and
Thailand, respectively. Researchers concluded that in all three settings, people were far more likely to
be tested when such services were convenient and offered by providers not associated with formal
health facilities. It is also notable that the findings focused only on clients aged 16-32, an age group
particularly susceptible to HIV.
(The results were reported in the July 2011 issue of The Lancet. For an abstract, see
www.ncbi.nlm.nih.gov/pubmed/21546309.)
With adequate support, communities are often the best resource for monitoring and addressing
the gaps in services for prevention, treatment and care such as low testing rates; lack of
sustained prevention interventions; lack of appropriate pre-ART care, including TB screening
and management of opportunistic infections; and lack of follow up for those for whom ART is
indicated. The results of a recent study, for example, clearly indicate the benefits of community-
based services to increase testing uptake (see Box 1.)
4. Funding Mechanisms: Meeting the Needs for the Next Phase of Scale-up
Unfortunately money (notably, lack thereof) is a major concern both globally and locally vis-à-vis
the HIV/AIDS response. Collectively, major donors have failed to fulfil promises to continue
increasing HIV funding in order to achieve universal access. Flat funding and cutbacks are
occurring at the very moment when greater resources are needed to sustain recent
14

15. developments and begin the process of implementing programmes aimed at maximizing the
potential of treatment as prevention and putting the Treatment 2.0 agenda into place.
The slowdown in donor spending is not being compensated for by increases in government
spending, even in countries that could clearly afford to allocate more for health in general and
for HIV specifically. The failures are particularly pronounced in sub-Saharan Africa, as
community representatives from that region regularly pointed out during the ITPC consultations.
As noted in Section 3.1.2, governments across Africa in 2001 signed the Abuja Declaration, one
key provision of which committed them to allocate at least 15 percent of their national budgets
to health every year. Of the more than 50 signatories, fewer than 10 have met that commitment
even once since 2001.
The funding challenges are critical not only in regards to scaling up further, but just to maintain
current levels. In the most dire cases, donors’ funding decisions can devastate poor countries
that have long been reliant on external support for health and HIV programming. Recent
strategic decisions by the UK Department for International Development (DFID), for example,
are likely to prove catastrophic for people in need in Malawi and Nepal. After years of providing
hundreds of millions of dollars in aid, the agency is withdrawing most support from those two
countries. Ninety percent of Malawi’s health budget is provided by external donors, principally
DFID, and in the current funding climate the government is unlikely to cover even a reasonable
portion of the gap in the short- and medium-term. Comments from two consultation participants
illustrate the concerns:
Once donors leave, what happens to programmes on the ground? In most cases,
they will probably just die. This is a major concern. The question is whether
governments have the willingness and capacity to take control of these
programmes.
—Boniswa Seti, TB/HIV training and advocacy officer of the AIDS and Rights
Alliance for Southern Africa (ARASA), at community meeting in Johannesburg
(June 2011)
In Nepal there were over 150 support groups across the country…but most were
shut down due to a lack of funding after DFID withdrew its support. There are
many other examples across the region demonstrating that little attention is being
paid to the sustainability of these services.
—Shiba Phurailatpam, director of the Asia-Pacific Network of People Living with
HIV/AIDS (APN+), at community meeting in Thailand (May 2011)
Increasing financial resources for HIV treatment, prevention and other services may be the best
way to not only improve health outcomes, but also make resource investments cost-effective
and reduce costs over time. A recently published model proposing new approaches to HIV
investments, Towards an Improved Investment Approach for an Effective Response to HIV,
provides an important framework for reallocation of HIV investments on evidence-based,
epidemic-specific interventions coupled with a shift toward more community-based service
delivery and support for advocacy and community systems strengthening.8 By increasing
funding in the short term (2015) by one third, and in the medium term with annual funding 15
percent higher than current annual funding levels, considerable gains could be realized in
8
The full text of the model, which appeared in The Lancet in June 2011, is available at
www.pepfar.gov/documents/organization/166859.pdf.
15

16. infections averted and life years gained. The UNAIDS-sponsored model also concludes that
these investments would also be remarkably cost-effective. This strategic investment framework
provides an important for advocates as they seek to mobilize resources and re-prioritize
spending.
4.1 Resource development for increased community capacity
The impact of the global funding gap at local levels represents a clear obstacle to communities
engaged in service provision and advocacy. Community representatives at the consultations
stressed the need for additional financial and human resources not only to scale up to meet
future needs (including as part of the Treatment 2.0 agenda), but also just to sustain current
activities. If communities are to follow through on their roles as advocates and service providers,
they need support to scale up their capacity. Following is a list of some of the main capacity
building and funding needs of CBOs, as noted by meeting participants:
• Organizational development to strengthen administration and governance
• Leadership renewal and development, including mentorship programmes
• Support for relationship building, especially with human rights organisations
• Network and communications infrastructure
• Advocacy and research training, including on how international organisations and
funding mechanisms work
• Treatment and research literacy
• Fundraising and donor relations support
• Quality assurance mechanisms for service delivery
• Access to information about government policies and processes on issues such as
procurement, partnership agreements with donors, etc.
• Capacity building on gender transformative approaches
Efforts have been made by some donor entities to support community-based work on HIV/AIDS.
Most notably, the Global Fund has increased opportunities for funding to support community-
based services, advocacy and capacity building through its community systems strengthening
(CSS) framework9 as well as other structural and organisational mechanisms such as dual-track
financing, targeted pool proposals, regional proposals, and non-CCM proposals.10 However, all
these mechanisms have been under-utilized to date—and, where CSS activities have been
proposed, they often end up strengthening the government sector instead.11
Global Fund support is potentially promising yet still imperfect. Community representatives
involved in the ITPC-led process highlighted other needs and solutions to financing constraints,
many of which are still in development, including:
9
Information about the Global Fund’s work in community systems strengthening is available at
www.theglobalfund.org/en/civilsociety/reports/. An overview of its efforts and opportunities in this regard
may be found in a document at that Web site called “Community Systems Strengthening Framework”.
10
Information about all of these mechanisms may be found at the Global Fund’s Web site:
www.theglobalfund.org.
11
For example, see the Global Fund’s analysis of the amounts requested and types of CSS activities that
were proposed by applicants in Round 10:
www.theglobalfund.org/documents/civil_society/CivilSociety_Round10CommunitySystemsStrengthening_
Analysis_en/.
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17. • Community groups need core funding to build and sustain their organisations. Project-
specific funding is useful only when organisations have the ability to ability to maintain staff,
have the flexibility to respond to emerging situations, and advocate for change. A
combination of core and project funding is needed to build strong community organisations.
• Community groups need access to more funding from local and national sources, including
governments and Global Fund grants. This would represent an important step away from
dependence on often-fickle international donors. Many community representatives argue
that there is plenty of money available in their own countries, including within the private
sector, and that CBOs should focus more on such potential sources.
• Community groups need more information about what funds are available and how they are
spent. Many multilateral and bilateral donors provide little or no information about where
their money goes. This raises the likelihood that some is poorly spent or allocated, thereby
reducing funding for community groups doing effective, efficient work. Community groups
should insist on improved and transparent tracking of funds provided in-country by
multilateral and bilateral entities. The Global Fund, for example, currently tracks funding only
to the level of the Principal Recipient in most countries. There is no information easily
available as to how much goes to individual sub-recipients or sub-sub-recipients; what types
of activities these lower-level recipients spend it on; and whether these activities have any
useful impact.
• Easier means of legal registration is an essential need for building strong and well-
resourced community organisations.
5. Key Issues and Recommendations from Community Consultations
We do everything in Bangladesh because our government is doing nothing….The government
does not understand PLHIV needs or programmes, and it is difficult to teach them the issues
every time.
—Habiba Akter, Founder and Executive Director of Ashar Alo Society (AAS) in Bangladesh, at
community meeting in Thailand (May 2011)
Many of the key recommended priority focus areas and activities noted by participants at the
Bangkok and Johannesburg community meetings are listed below. All were considered
important in terms of the successful eventual adoption of the Treatment 2.0 agenda, including
treatment as prevention approaches.
1. Gather and disseminate more and improved evidence to:
a) highlight current gaps in HIV/AIDS programming, and
b) demonstrate the impact of community-based advocacy and service delivery.
Participants were particularly interested in spotlighting and perhaps replicating data from
Mozambique showing the extent of “losses” from testing to care to ART (see Figure 2).
Anecdotal evidence shows how and why greater community engagement can improve such
poor outcomes, and for relatively small investments; more rigorous efforts can be made to
show this impact. National and global advocates should therefore identify ways to design,
fund and implement studies showing such impact.
17

18. 2. Develop improved tools to “know your epidemic” and identify effective interventions.
Improved data collection is needed to better understand who is at risk of infection; the
environment that creates HIV risk; and which interventions are most effective in reducing
morbidity and mortality, improving quality of life and reducing HIV incidence. Resource
allocations should then be prioritized based on the results of this information. Community
groups are well placed to advocate for such evidence-gathering and participate in those
efforts.
3. Increase investment now to save money in the long-term.
As the UNAIDS-sponsored strategic investment framework concluded (see Section 4), the
most expensive thing a government can do is fail to scale-up HIV treatment and limit HIV
funding. Failure to scale up services now will only increase costs for treatment, care and
prevention in the long term. Advocates can and should make this case in their own countries
as part of an effort to reorient global HIV/AIDS responses.
4. Develop and implement effective strategies and policies to address human rights
abuses and other violations perpetrated by health care workers.
Most community representatives agree that these discriminatory attitudes and actions stem
from lack of knowledge about HIV and the people who live with it. Models and approaches
exist to deal with this problem. A consultation participant from Kenya noted that in Nairobi, it
has been addressed by having fellow health workers educate other health workers. Other
suggested approaches include mandatory classes on human rights in all medical schools;
introducing courses on human rights in all primary and secondary school curriculums, and
reinforcing the need for health care workers to abide by the core pillars of medical ethics
(i.e., “do no harm” and respect the rights and privacy of all patients).
Whatever the approach, CBOs can play important roles in designing, implementing and
monitoring impact. Their engagement is perhaps even more important earlier on, as they
advocate with officials and authorities to recognize the need for such approaches.
5. Increase funding for research, testing and treatment for hepatitis C.
Hepatitis C rates are especially high among people living with HIV in many regions. Testing
is often unavailable. Hepatitis C treatment should be considered a high priority in those
regions and linked to HIV service delivery. Given the high costs of most current treatment
options, community groups should collaborate regionally and internationally to advocate for
lower prices for key therapies and greater access.
6. Health systems should prioritize task-shifting to meet universal access targets.
Increasing the use of nurses, community health workers, peer educators and CBOs to
provide HIV prevention, treatment and care is an essential component in meeting the
universal access targets by 2015. UNAIDS and WHO should immediately develop a plan of
action to fund, train, implement and support these efforts.
7. Integrate HIV services with other health services including TB, hepatitis C, maternal
and child health, drug treatment and mental health services.
The lack of integrated health services increases costs and redundancy. It also makes it
considerably more difficult for people with HIV to engage in health care successfully. “One-
stop shopping” models should be developed, and community members engaged to assist in
navigating health services for patients.
8. Microbicides should be made available to women as soon as possible.
18

19. In 2010, the results of the Caprisa 004 trial showed the benefits of tenofovir gel applied as a
microbicide in prevention HIV transmission. This represents a vital breakthrough in
longstanding efforts to identify a women-controlled preventive mechanism. Now that there is
a viable product, getting effective microbicides into the hands of those who need them
should be considered a high priority in the response to HIV.
9. Map and evaluate current capacity in the national NGO sector.
If communities and their organisations are going to fulfil their roles as advocates and service
providers, they and their donors need a clearer picture of current capacity levels, gaps and
redundancies
10. Train and support community advocates and organisations to better understand trade
and intellectual property issues. The continued and growing efforts to undermine
protections of essential drugs in order to increase prices requires increased advocacy from
affected communities. This is a complex area that requires training and support to ensure
sophisticated advocacy approaches at country levels.
6. Conclusion
The opportunity to drastically reduce deaths from AIDS and the further spread of HIV is within
our grasp as never before. It is the lack of political will that is our greatest challenge. More than
ever, people living with and directly affected by HIV will seek to overcome that challenge and
stand at the forefront in responding to the AIDS epidemic. It is through their leadership that we
can overcome stigma and discrimination, government neglect and corruption, and best meet the
needs of the individuals and communities challenged by AIDS. Given the tools and resources
they need to meet the challenge, these communities can lead toward an end to AIDS.
In December 2010, the UNAIDS adopted its new five-year strategy to realize its “Getting to
Zero” goals. That strategy relies on the scale up of community mobilization, advocacy and
service delivery for its success. Six months later, the UN General Assembly agreed on specific
and ambitious goals to reduce HIV infections and AIDS deaths by 2015. Again, the success of
these goals is dependent on community affected by HIV to mobilize, advocate and scale up
service delivery. ITPC and the community participants involved in the development of this
report call on UNAIDS to provide the coordination and leadership necessary to mobilize
resources and implement policies that will allow communities to meet these challenges.
19