Investing in Community Advocacy For HIV Prevention

Investing in
community
advocacy for
HIV prevention
Showing results
International Council of AIDS
Service Organizations (ICASO)
Acknowledgements
ICASO warmly thanks the many people and organizations that supported,
coordinated and contributed to the Prevention and Treatment Advocacy Project
throughout its five years.
Most importantly, our heartfelt thank you to our partners at country and regional levels
that coordinated the work in the 10 countries and four regions and to those who
made the achievements of this project possible.
Belize: Alliance Against AIDS (AAA)
Botswana: Botswana Network of AIDS Service Organizations(BONASO)
China: Yunnan Daytop Drug Rehabilitation Center
India: Indian Network for People Living with HIV/AIDS (INP+)
Jamaica: Jamaica AIDS Support (JAS)
Kenya: Kenya AIDS NGO Consortium (KANCO)
Nigeria: Network of People Living With HIV and AIDS Nigeria (NEPHWAN) and
Interfaith Coalition against HIV/AIDS in Nigeria (InterFAITH)
Russia: Russian Harm Reduction Network (RHRN)
Rwanda: Rwanda NGO Forum on HIV/AIDS
Ukraine: Coalition of HIV-Service Organizations (the Coalition)
African region: African Council of AIDS Service Organizations (AfriCASO)
Asia Pacific region: Asia and the Pacific Council of AIDS Service Organizations
(APCASO)
Eastern European region: AIDS Action Europe and the Eastern European Harm
Reduction Network (EHRN)
Latin American and the Caribbean region: Latin American and the Caribbean
Council of AIDS Service Organization (LACCASO) and Accin Ciudadana contra el
SIDA (ACCSI).
A special thanks to the donors that supported the project: The Bill and Melinda
Gates Foundation, the Canadian International Development Agency of the
Government of Canada (CIDA), the Danish International Development Agency
(DANIDA), the Ford Foundation, the International AIDS Vaccine Initiative (IAVI),
and Positive Action.
This document is dedicated to the memory of Steve Harvey, our first project
coordinator in Jamaica and an outstanding AIDS activist who was murdered in 2005.
This report was written by Sarah Middleton-Lee.
The contents are the responsibility of ICASO and its partner organizations and do not
necessarily reflect the views of any of the aforementioned donors.
Copyright 2010 by International Council of AIDS Service Organizations (ICASO)
Showing results: Investing in community advocacy for HIV prevention
Prevention and Treatment Advocacy Project

This report by the International Council of AIDS Services Organizations (ICASO) summarizes the
wealth of existing and emerging results, lessons and recommendations of the 5-year Prevention
Treatment Advocacy Project (PTAP) in 10 countries. It demonstrates the value added and impact
of investing in community sector advocacy on HIV.
The full report and country profiles are available in English at www.icaso.org. A summarized
version of the report is also available in French, Russian and Spanish.
Contents
Acknowledgements
Acronyms
iii
Executive summary
iv
Background
Overview of PTAP
Aim and audience of report
PTAP results: Introduction
PTAP results 1: Ensuring strong national plans and resources to scale up HIV prevention
PTAP results 2: Building a supportive legal and social environment for HIV prevention
13
PTAP results 3: Enhancing scale/quality of key HIV prevention strategies
20
PTAP results 4: Involving people living with HIV and building a community movement
28
Challenges to community advocacy
34
Lessons learned
35
Recommendations
39
Case study 1: Promoting community sector involvement in NSPs/NSAs, Rwanda
Case study 2: Involving key populations in NSPs and communities in national budgets, Kenya
11
Case study 3: Reviewing/introducing legislation to address stigma and discrimination, Ukraine
15
Case study 4: Empowering people living with HIV to advocate on stigma and discrimination, Jamaica
18
Case study 5: Using culturally-sensitive strategies to mitigate stigma and discrimination, Botswana
19
Case study 6: Establishing positive prevention as a key strategy, China
21
Case study 7: Scaling up access to voluntary counseling and testing and female condoms, Belize
24
Case study 8: Advocating on harm reduction and substitution therapy, Russia
25
Case study 9: Advocacy by and for people living with HIV to scale up Drop-In Centres, India
29
Case study 10: Establishing a civil society Think Tank to create a movement on prevention, Nigeria
32
ii
Acronyms
AAA
Alliance Against AIDS (Belize)
ARVs
Antiretroviral drugs
ART
Antiretroviral therapy
BONASO
Botswana Network of AIDS Service Organizations
CBO
Community-based organization
CCM
Country Coordinating Mechanism
CDC
Centers for Disease Control
The Coalition
Coalition of HIV Service Organizations (Ukraine)
FBO
Faith-based organization
GHPWG
Global HIV Prevention Working Group
GIPA
Greater involvement of people living with HIV
Global Fund
Global Fund to Fight AIDS, Tuberculosis and Malaria
HCT
HIV Counseling and Testing
ICASO
International Council of AIDS Service Organizations
INP+
Indian Network for People Living with HIV/AIDS
InterFAITH
Interfaith Coalition against HIV/AIDS in Nigeria
JAS
Jamaica AIDS Support
KANCO
Kenya AIDS NGO Consortium
MSM
Men who have sex with men
NAC
National AIDS Committee/Council/Commission
NAP
National AIDS Programme
NEPHWAN
Network of People Living With HIV and AIDS in Nigeria
NGO
Nongovernmental organization
NSA
National Strategy Application
NSP
National Strategic Plan
PMTCT
Prevention of mother-to-child transmission
PTAP
RHRN
Russian Harm Reduction Network
TB
Tuberculosis
UNAIDS
United Nations Joint Programme on AIDS
Figure 1: Global HIV Prevention Working Group recommendations for the community sector
Figure 2: UNAIDS: Essential policy actions for intensifying HIV prevention
Figure 3: PTAP countries, focal point organizations and snapshot of HIV epidemics
Figure 4: Viewpoints on ensuring strong national plans and resources to scale up HIV prevention
12
Figure 5: Viewpoints on building a supportive legal/social environment for HIV prevention
19
Figure 6: Viewpoints on enhancing the scale and quality of key HIV prevention strategies
27
Figure 7: Viewpoints on involving people living with HIV and building a community movement
33
Figure 8: Challenges to community advocacy on scaling up HIV prevention
34
iii
Executive summary
Introduction to the Prevention and Treatment Advocacy Project
This report by the International Council of AIDS Services Organizations
(ICASO) summarizes the wealth of existing and emerging results, lessons and
recommendations of the 5-year Prevention Treatment Advocacy Project (PTAP)
in 10 countries. It demonstrates the value added and impact of investing in
community sector1 advocacy on HIV.
PTAP was developed following the Global HIV Prevention Working Groups report
HIV Prevention in an Era of Expanded Treatment Access. It responded to the call to
scale up an integrated approach to HIV prevention and treatment and focused
on under-addressed issues the role of the community sector and the importance of
a supportive policy environment. PTAP aimed to contribute to a policy and
programming shift by building the knowledge and capacity of communities (in
effective advocacy, networking and communication) and, in turn, mobilizing a broadbased community movement for HIV prevention. It paid particular attention to areas
of strategic importance to achieve scale up, including access to HIV counseling and
testing, positive prevention2, new prevention technologies and the needs of key
populations.
PTAP took place in 2005-9, within a changing HIV world, increasingly influenced
by the economic crisis, the positioning of HIV within wider responses to health and
global targets (including universal access by 2010 and the Millennium Development
Goals by 2015). It was led by ICASOs International and Regional Secretariats
and implemented by national focal point organizations in: Belize (Alliance Against
AIDS - AAA); Botswana (Botswana Network of AIDS Service Organizations BONASO); China (Yunnan Daytop Drug Abuse Treatment and Rehabilitation Center);
India (Indian Network for People Living with HIV/AIDS - INP+), Jamaica (Jamaica
AIDS Support - JASL); Kenya (Kenya AIDS NGO Consortium - KANCO); Nigeria
(Network of People Living With HIV and AIDS in Nigeria and Interfaith Coalition against
HIV/AIDS in Nigeria); Russia (Russian Harm Reduction Network); Rwanda (Rwanda
NGO Forum on HIV/AIDS); and Ukraine (Coalition of HIV Service Organizations).
1 Refers to individuals, groups or associations that are separate from the government and private sector and
who undertake actions and present views in support of community members living with or highly affected by
HIV.
2 Refers to programs that help people living with HIV to: protect their sexual health; avoid new sexually
transmitted infections as well as HIV re-infection; delay HIV/AIDS disease progression; and avoid passing
their infection on to others.
iv
PTAP results 1: Ensuring strong national plans and resources

to scale up HIV prevention
The largest cumulative result of PTAP was the increased contribution by the
community sector to shaping national policies and programs to support the scaling
up of HIV prevention alongside expanded access to treatment. This involved
advocacy within key national processes: from target setting for universal access to the
development of National Strategic Plans (NSPs), with particular attention to mobilizing
action on HIV prevention, promoting the role of the community sector and using
evidence to prioritize people living with HIV and key populations. It also involved
engaging in and influencing countries budgeting processes and allocation
of resources, including the development of proposals to the Global Fund.
For example:
The Rwanda NGO Forum on HIV/AIDS set up a coalition and a Civil Society
Situation Analysis group to provide evidence of gaps in the national response and
catalyze community involvement in shaping the national framework for HIV.
Participation in a Know Your Epidemic, Know Your Response workshop (to
identify key strategies for the NSP 2009-12) was complemented by dialogue with
Members of Parliament in all 30 districts, and meetings with key stakeholders (such
as the Country Coordinating Mechanism). This contributed to a vital shift in
government policy. The role of the community sector and importance of key
populations are now addressed in Rwandas NSP/National Strategy Application
(NSA) for 2009-12. Within the NSA which forms the countrys proposal to the
Global Fund the community sector will implement 50 percent of all activities.
The Kenya AIDS NGO Consortium (KANCO) fully engaged in the process of
national budgeting for health in general and HIV specifically. This involved
influencing national platforms (such as the Association of Media Women in Kenya),
joining campaigns (such as debt2health), doing political advocacy and engaging in
formal budgetary processes (such as the Mid Term Expenditure Review). KANCOs
messages focused on the need for increased resources to HIV, particularly
prevention, and the governments obligation to meet its commitments, as
contained, for example in the Abuja Declaration3. KANCO also built community
sector capacity in budget making and analysis, enabling groups to participate in
budget hearings at the district level. As of 2009, there was indication of sizeable
increases in resources from government and development partners for both HIV
prevention and community sector interventions.
3 The Abuja Declaration on HIV/AIDS, tuberculosis and other related infectious diseases was adopted by
the Heads of State and Government of the Organization of African Unity in 2001.
PTAP results 2: Building a supportive legal and social

environment for HIV prevention
Advocacy to change the legal environment for HIV prevention particularly relating to
stigma and discrimination, criminalization (of behaviours and HIV transmission) and
the rights of people living with HIV and key populations* was a strong focus of
PTAP. In many cases, national-level efforts to change unjust and oppressive
laws and policies were complemented by programs to empower affected
communities to learn about their rights, document violations and take the
lead on advocacy. For example:
In Ukraine, where stigma and discrimination of people living with HIV and key
populations remain high, the Coalition of HIV-Service Organisations participated in
discussions about the drafting of a new law On Protection from Discrimination
and negotiated its submission to Parliament. It collaborated with the government
to set up a working group (including people living with HIV) to review laws relating
to HIV. The Coalition built an anti-discrimination movement and trained its members
in advocacy and policy analysis, including at city levels. This led to amendments to
the Law On AIDS Prevention and Social Security of Population that follow
international standards, avoiding discrimination and addressing issues such as free
access to antiretroviral treatment. This rights-based approach is now reflected in
the NSP 2009-13.
In Jamaica, where HIV-related stigma remains intense and prevalence among key
populations is increasing, the empowerment of people living with HIV was central
to the work of Jamaica AIDS Support. Capacity building in advocacy was provided
to the Jamaican Network of Seropositives, alongside support for the National HIVrelated Discrimination Reporting and Redress System - a mechanism to coordinate
collection/action on cases of discrimination against people living with HIV. Training
of four people living with HIV as field officers led to twice the number of complaints
being reported each month.
The Botswana Network of AIDS Service Organizations used a range of culturespecific strategies to empower communities to advocate against stigma and
discrimination. With the Centre for Youth of Hope, it documented cases through
video production of people living with HIV speaking about their challenges, such as
in accessing services. It also mobilized and built the capacity of tribal leaders
(resulting in them championing local advocacy to address stigma) and supported
Miss HIV Stigma Free and Mr Positive Living pageants, increasing acceptance of
people living with HIV by their families.
* The term key populations refers to groups of people who are key to the dynamics of, and the responses
to, the AIDS response. These populations include: people living with HIV, orphans and vulnerable children,
women and girls, youth, sex workers, people who inject drugs, men who have sex with men, transgenders,
migrants, refugees and prisoners.
vi
PTAP results 3: Enhancing the scale and quality of key HIV

prevention strategies
PTAP partners advocated for the introduction, improvement and/or
expansion of good practice interventions that are critical to the scale and
quality of HIV prevention. These included positive prevention, HIV counseling and
testing, new prevention technologies, prevention of vertical transmission and joint
HIV/TB interventions, alongside population-specific approaches (such as harm
reduction for people who inject drugs). To complement this, PTAP also advocated for
the expansion of access to HIV treatment as a vital strategy towards the scale up of
prevention. For example:
In China, the Yunnan Daytop Drug Abuse Treatment and Rehabilitation Centre
promoted positive prevention as a key strategy to scale up HIV prevention in
Yunnan province. This involved training of trainers (reaching 800 people) and
evidence-based research with the largest network of people living with HIV. Interest
was mobilized via a national e-group and network, plus the first National Positive
Prevention Forum, involving over 100 delegates from 14 provinces. Now, many
NGOs and government bodies include positive prevention in their HIV policies
and the concept has expanded to 13 other provinces.
In Belize, Alliance Against AIDS (AAA) reduced stigma and increased access to
HIV services by advocating for standalone testing and treatment centers to be
integrated into government hospitals. It also successfully advocated on female
condoms, including through the countrys first workshop on new prevention
technologies, training for health workers and dialogue with the Ministry of Health
and United Nations. Now, female condoms are provided by the National AIDS
Programme (using a Global Fund grant) and disseminated through a national
network of community and government distribution points.
In Russia, HIV prevalence among people who inject drugs is estimated at 37

percent. The Russian Harm Reduction Network advocated for substitution therapy
(which remains prohibited) as a critical component of HIV prevention for people
who inject drugs. The work included developing a position paper, supporting a new
website (providing cutting edge information from Russia and elsewhere),
supporting an action group (involving activists, medical specialists, legal experts
and human rights advocates) and highlighting the issue within the first national
conference on Civil Society Against HIV/AIDS in Russia.
vii
PTAP results 4: Involving people living with HIV and building

a community movement
The empowerment and involvement of people living with HIV and key populations was
central to PTAP. In all 10 countries, important results were achieved in mobilizing and
building the capacity of such groups and ensuring their meaningful involvement in
advocacy on HIV prevention. In turn, this was part of the Projects broader
strategy to build a diverse, skilled and powerful community movement to
support the scale up of HIV prevention alongside expanded access to
treatment. Examples include:
The India Network of People Living with HIV worked in Tamil Nadu one of four
southern states accounting for 60 percent of HIV cases and organized a series of
workshops orientating local networks of people living with HIV on the national and
State plans on HIV. These identified that the State only planned to provide six
additional drop-in centres (prevention and treatment hubs for people living with
HIV), bringing the total to 11 within 30 districts (each with its own network).
As a result, the networks advocated to the national and State programs, including
through a meeting with the Director of the National AIDS Control Organisation.
As a result, 19 further centres were resourced.
With HIV prevalence of 4.6 percent among a population of over 150 million, the
Network of People Living with HIV and AIDS in Nigeria and Interfaith Coalition
against HIV/AIDS set up a Civil Society Think Tank on HIV/AIDS Policy. The Think
Tank facilitates broad community sector involvement in decision-making and is
recognized by the government. Its activities have included analyzing the National
HIV/AIDS Policy (2003), leading to recommendations for attention to key
populations, positive prevention and government support for the community sector.
All of these are now reflected in both the draft revised National HIV/AIDS policy
(2009) and the new National Strategic Framework (2010-15).
viii
Challenges and lessons learned

PTAP partners highlighted a number of challenges to community advocacy on
HIV prevention. Examples included those related to the national context (such as
governments not meeting international commitments); national response to HIV (such
as priorities not being matched with resources); legal and social environment (such as
oppressive legal environments); community sector (such as limited capacity for
national policy work); and funding environment (such as the economic crisis.) The
Project also produced an extensive number and range of lessons, with examples
including that:
community advocacy can bring significant impacts on national policies (such as the
prioritization of key populations in NSPs) that, in turn, bring concrete programmatic
benefits and resources;
resource mobilization is challenging for community advocacy as it is an area not

seen as donor friendly and that would benefit from funding that is independent
(from government), flexible and covers core costs;
community advocacy needs to be evidence and capacity-based (responding to

gaps in the national response and the added value of communities), while building
on international commitments;
community advocacy needs to combine capacity building with structural

opportunities for constituencies to develop a shared agenda;
advocacy targets need to be specific to contexts, involve a range of stakeholders

and target institutions, rather than individuals;
people living with HIV and key populations must be at the heart of compelling
advocacy messages; and
HIV prevention programs alone are not enough, without supportive environments
that enable people to fulfill their rights and provide protection from infection.
Recommendations for action

PTAP produced eight key recommendations for action by the community sector
and other key stakeholders:
1. The community sector, including people living with HIV and key
populations, should continue to be passionate advocates for the scaling up of
HIV prevention alongside treatment. Those living with and affected by HIV have a
particularly critical role in convincing others about why prevention still matters and
why it requires a supportive environment and appropriate resources.
2. The community sector should work together to develop the package of
knowledge and, particularly, skills needed to engage effectively in national
advocacy and policy-making on HIV. Alongside policy analysis and
communications, this involves capacity building in non-traditional areas, such
as budget analysis and indicator development.
3. The community sector should work together to build the infrastructure necessary
to gather information, channel input and give feedback on advocacy work to
engage and represent a wide range of constituents and, in turn, make an evidencebased contribution to national advocacy and policy-making. The community sector
should maximize the current opportunities available to them (such as Community
Systems Strengthening grants from the Global Fund) to resource such work.
ix
4. Key national stakeholders including government, donor and multilateral

partners should put the rhetoric of know your epidemic into practice by being
open to evidence-based advocacy by the community sector (for example about key
populations).
5. National governments should welcome the role of community advocacy in
highlighting regional and international agreements and best practices on HIV
prevention. They should honour relevant commitments, such as the Declaration of
Human Rights (1948), the Declaration of Alma Ata (1978), the Paris Declaration
(1994), the Abuja Declaration (2001), the UNGASS Declaration of Commitment
(2001) and the Political Declaration on HIV/AIDS (2006).
6. National governments should treat the community sector as genuinely equal
partners within the national response to HIV, providing them with meaningful
opportunities to influence all stages and aspects of decision-making on programs,
policies and resource allocation.
7. National governments and international donors should provide free and
transparent access to their information, for example on budget allocations, to
enable the community sector to analyze and track prioritization and performance.
This information should be provided in a format that is clear and can be understood
by people who are not technical experts.
8. International public and private donors - including the Global Fund,
bilaterals and other multilaterals should recognize the returns on investing in
community advocacy, in terms of securing supportive environments for effective
responses to HIV and increasing the impact of the services that they fund. They
should include advocacy within their portfolio of support, giving communities
access to resources that are independent of governments.

Background
In June 2004, the Global HIV Prevention Working Group (GHPWG)4 published
HIV Prevention in an Era of Expanded Treatment Access.5 The document
explained how the arrival of HIV treatment also brought opportunities for ongoing
efforts to reduce the incidence of HIV infection. The Group set out a series of
recommendations in support of its call for an integrated approach to HIV prevention
and treatment. Such an approach would ensure that efforts in each area were
balanced and provided synergies achieving a greater overall impact. It would build a
global response that did not repeat the mistakes of the industrialized world, where
HIV prevention was not sufficiently prioritized as HIV treatment was expanded, leading
to an increase in risk behaviour and infection rates.
Later that year, in direct response to the GHPWG report, the International Council of
AIDS Service Organizations (ICASO) developed the Prevention and Treatment
Advocacy Project (PTAP). The Project aimed to address some of the gaps that
were identified, but under-addressed, in the GHPWGs analysis, focusing on the role
and contribution of the community sector6 in advocacy to scale up and integrate HIV
prevention, as well as the policy environment needed to make that happen.
In the 5-year implementation of PTAP, the HIV world has changed dramatically and,
with it, issues related to both the scale-up of prevention and the role of community
advocacy. However, the basic arguments of the GHPWG have remained relevant and
have been further substantiated in its subsequent reports and recommendations
[see Figure 1].
Donors should prioritize increasing civil societys capacity to participate as full

partners in HIV prevention efforts. With such support, civil society should
monitor national progress in bringing HIV prevention to scale, identifying
obstacles to scale-up that need to be addressed. Civil society should forcefully
advocate for a comprehensive response to HIV that moves toward universal
access to HIV prevention, treatment, care and support.
Figure 1:
Global HIV
Prevention
Working Group
recommendations
for the community
sector
Bringing HIV Prevention to Scale: An Urgent Global Priority, 2007
AIDS activists and other civil-society groups should strongly advocate for the
simultaneous scaling up of HIV prevention and treatment. Civil-society groups
should participate in the development of national HIV prevention targets, monitor
national progress toward their achievement, and push for strategies that deliver
evidence-based interventions to those populations most at risk of HIV infection.
Behaviour Change and HIV Prevention: (Re)Considerations for the 21st Century, 2008
4 A panel of nearly 50 leading public health experts, clinicians, biomedical and behavioural researchers and
people affected by HIV convened by the Bill and Melinda Gates Foundation and the Henry J. Kaiser Family
Foundation. The Working Group seeks to inform global policy-making, program planning and donor
decisions on HIV prevention and to advocate for a comprehensive response to HIV that integrates
prevention, treatment and care.
5 HIV Prevention in an Era of Expanded Treatment Access, Global HIV Prevention Working Group,
June 2004.
6 Refers to individuals, groups or associations that are separate from the government and private sector
and who undertake actions and present views in support of community members living with or highly
affected by HIV. Reference: Coordinating with Communities: Guidelines on the Involvement of the
Community Sector in the Coordination of National AIDS Responses, International Council of AIDS
Service Organizations, African Council of AIDS Service Organizations and International HIV/AIDS Alliance,
May 2007.
As PTAP evolved, HIV prevention has remained a critical priority within national and
global responses to HIV. It has benefitted from other calls to action. These have
included the United Nations Joint Programme on AIDS (UNAIDS) position paper
(2005), and subsequent practical guidelines (2007) on Intensifying HIV
Prevention7, which included 12 essential policy actions [see Figure 2]. However,
overall, despite such initiatives, HIV prevention continues to be at risk of being the
poor relation of HIV treatment with comparatively low stakeholder mobilization,
policy action and resource allocation.
Meanwhile, as confirmed by the UNAIDS essential policy actions, community
advocacy the mobilization and influencing of local and national decision-makers by
nongovernmental organizations (NGOs), community based organizations (CBOs) and
affected communities (including people living with HIV and key populations8) has a
critical role to play in creating the supportive environment and functional partnerships
needed to scale-up HIV prevention. However, it is another area that has often been
under-valued and under-resourced. This is particularly due to a lack of evaluation and
evidence to demonstrate its added value and concrete results in strengthening
responses to HIV.
Figure 2:
UNAIDS: Essential
policy actions for
intensifying HIV
prevention
1. Ensure that human rights are promoted, protected and respected and that
measures are taken to eliminate discrimination and combat stigma.
2. Build and maintain leadership from all sections of society, including governments,
affected communities, nongovernmental organizations, faith-based organizations,
the education sector, media, the private sector and trade unions.
3. Involve people living with HIV in the design, implementation and evaluation of
prevention strategies, addressing the distinct prevention needs.
4. Address cultural norms and beliefs, recognizing both the key role they may play in
supporting prevention efforts and the potential they have to fuel HIV transmission.
5. Promote gender equality and address gender norms and relations to reduce the
vulnerability of women and girls, involving men and boys in this effort.
6. Promote widespread knowledge and awareness of how HIV is transmitted and
how infection can be averted.
7. Promote the links between HIV prevention and sexual and reproductive health.
8. Support the mobilization of community-based responses throughout the
continuum of prevention, care and treatment.
9. Promote programs targeted at HIV prevention needs of key affected groups and
populations.
10. Mobilizing and strengthening financial, and human and institutional capacity
across all sectors, particularly in health and education.
11. Review and reform legal frameworks to remove barriers to effective, evidence
based HIV prevention, combat stigma and discrimination and protect the rights of
people living with HIV or vulnerable or at risk to HIV.
12. Ensure that sufficient investments are made in the research and development of,
and advocacy for, new prevention technologies.
7 Intensifying HIV Prevention: UNAIDS Policy Position Paper, UNAIDS, 2005. Practical Guidelines for
Intensifying HIV Prevention, UNAIDS, 2007.
8 Refers to groups of people who are key to the dynamics of, and response to, HIV. These include: people
living with HIV, orphans and vulnerable children, women and girls, youth, sex workers, people who inject
drugs, men who have sex with men, transgender people, migrants, refugees and prisoners. Reference:
Coordinating with Communities: Guidelines on the Involvement of the Community Sector in the
Coordination of National AIDS Responses, International Council of AIDS Service Organizations, African
Council of AIDS Service Organizations and International HIV/AIDS Alliance, May 2007.
Overview of PTAP
PTAP was designed to respond to this context. It aimed to contribute to a policy and
programming shift towards increased access to comprehensive prevention
services alongside expanded treatment services, within effective responses to
HIV. It would achieve this through empowering and building the knowledge/capacity
of communities in effective advocacy, networking and communication, in turn building
a broad-based community movement for prevention.
In line with the 2004 GHPWG report, PTAP focused on areas of critical importance
to the scale-up of HIV prevention. These included: integrated approaches to
prevention and treatment; access to HIV counseling and testing (HCT); prevention for
people living with HIV (positive prevention);9 new prevention technologies (NPTs)10;
and responses to the unique needs of key populations, including sex workers, men
who have sex with men (MSM), people who inject drugs, prisoners and women. The
project was led by ICASOs International and Regional Secretariats (AfriCASO,
AIDS Action Europe (AAE), APCASO and LACCASO/ACCSI) and implemented in 10
countries by national focal points organizations, including NGO coalitions and
networks of people living with HIV [see Figure 3]. Alongside geographical diversity,
the countries represented a broad range of HIV epidemics, national responses,
political and funding environments and capacity/engagement of the community
sector.
Figure 3:
PTAP countries,
focal point
organizations and
snapshot of HIV
epidemics
Country
Snapshot of HIV epidemic11

Adult HIV
prevalence
HIV prevalence
in a key
population
Coverage
of ARVs
2.1%
Prisoners 4.9%12
49%
Botswana Botswana Network

of AIDS Service
Organizations(BONASO)
23.9%
MSM 19.7%13
79%
China
Yunnan Daytop Drug

Abuse Treatment and
Rehabilitation Center
0.1%
Sex workers
10.3%14
19%
India
Indian Network for People

Living with HIV/AIDS (INP+)
0.3%
MSM 7.4%15
Jamaica
Jamaica AIDS Support

(JAS)
1.6%
MSM 33%16
43%
Kenya
Kenya AIDS NGO

Consortium (KANCO)
7.4%17
People who inject

drugs 68-88%18
38-45%19
Nigeria
Network of People Living

With HIV and AIDS in
Nigeria (NEPHWAN) and
Interfaith Coalition against
HIV/AIDS in Nigeria
(InterFAITH)
4.6%20
Sex workers
37.4%21
26%
Russia
Russian Harm Reduction

Network (RHRN)
1.1%
People who inject

drugs 37%22
16%
Rwanda
Rwanda NGO Forum

on HIV/AIDS
2.8%
71%
Ukraine
Coalition of HIV-Service
Organizations (the Coalition)
1.6%
People who inject

8%
drugs 5.5 - 81.9%23
Belize
Focal point
organization
Alliance Against
AIDS (AAA)
Aim and audience of report

As the implementation of PTAP ended in 2009, this report aims to share the projects
actual and emerging results and impact and, in turn, demonstrate the value of
community sector advocacy in influencing policy development, change and
implementation. The report also highlights challenges and lessons identified during
the five-year project and promotes recommendations for action by the community
sector and other key stakeholders.
The information for this report was gathered from the 10 PTAP countries through
questionnaires and end-of-project reports by the national focal points organizations.
Unless specified otherwise, all of the data cited in this report is taken from those
sources.
The primary audience for this report is members of the community sector involved
in responses to HIV, both within PTAPs 10 focus countries (including PTAP project
staff and other community stakeholders) and other countries. The report will also be
informative for the donor community and other stakeholders such as international
NGOs and multilateral organizations that are involved in supporting community
advocacy and integrated approaches to HIV prevention and treatment.
9 Positive prevention - or Positive Health, Dignity and Prevention programs help people living with HIV to:
protect their sexual health; avoid new sexually transmitted infections as well as HIV re-infection; delay
HIV/AIDS disease progression; and avoid passing their infection on to others. For more information, see
www.ippf.org and www.gnpplus.net.
10 With attention to female condoms, microbicides, HIV vaccines, Pre-Exposure Prophylaxis (PrEP) and
male circumcision.
11 Unless stated, all data is from each countrys Epidemiological Fact Sheet on HIV and AIDS: 2008
Update, UNAIDS, 2008.
12 Figure for 2005 cited in HIV Prevention in the Era of Expanded Treatment Access: Lessons from the
Ground: Reflections on the Challenges and Opportunities, Alliance Against AIDS, October 2009.
13 Survey cited in AIDS Epidemic Update 2009, UNAIDS, 2009.
14 Figure for 2007 cited in PTAP: China: Policy Review Report 2009, Yunnan Daytop Drug Abuse
Treatment and Rehabilitation Center, 2009.
15 HIV Sentinel Surveillance and HIV Estimation, National AIDS Control Organization, 2007, cited in PTAP:
India: Policy Review Report 2009, Indian Network of People Living with HIV/AIDS, October 28 2009.
16 Figure for 2008 from Annual Management Workshop, National HIV/STI Programme, 2009, cited in HIV
Prevention in the Era of Expanded Treatment Access, Lessons From the Ground Reflections on the
Challenges and Opportunities, Accin Ciudadana contra el SIDA, September 2009.
17 Kenya AIDS Indicator Survey 2007 cited in HIV Prevention in the Era of Expanded Treatment Access,
Lessons From the Ground Reflections on the Challenges and Opportunities, Kenya AIDS NGO
Consortium, Kenya, 2009.
18 Figures for Nairobi, Malindi and Mobassa, UNODC, 2004 cited in HIV Prevention in the Era of
Expanded Treatment Access, Lessons From the Ground Reflections on the Challenges and
Opportunities, Kenya AIDS NGO Consortium, Kenya, 2009.
19 HIV Prevention in the Era of Expanded Treatment Access, Lessons From the Ground Reflections on
the Challenges and Opportunities, Kenya AIDS NGO Consortium, Kenya, 2009.
20 Nigeria ANC Survey, 2008.
21 Integrated Bio-Behavioural Surveillance Survey, Nigeria, 2007 cited in HIV Prevention in the Era of
Expanded Treatment Access, Lessons from the Ground Reflections on the Challenges and
Opportunities, Network of People Living with HIV and AIDS in Nigeria and Interfaith Coalition against
HIV/AIDS in Nigeria, 2009.
22 Mathers et al., 2008 cited in AIDS Epidemic Update 2009, UNAIDS, 2009.
23 Figure for 2008 cited in HIV Prevention in the Era of Expanded Treatment Access, Lessons from the
Ground Reflections on the Challenges and Opportunities, Coalition of HIV-Service Organizations, 2009.
PTAP results: Introduction

PTAP took place at a critical time in the global response to HIV. This was
characterized by key developments both within the HIV world (such as increased
access to antiretroviral drugs (ARVs), the countdown to the 2010 target for universal
access24 and the 2015 Millennium Development Goals) and externally (such as the
global economic crisis and movement towards funding wider responses to health).
Against this dynamic and changing context, PTAPs partners achieved a wealth of
significant and exciting results within their countries. Sometimes, the results were
linear with a focal point organization coordinating an advocacy initiative that clearly
led to a concrete change, for example to an HIV-related policy. Other times, the
Project contributed to wider mobilization and advocacy efforts, where the precise
influence of individual actors was more difficult to define.
PTAPs results are summarized in the following pages, grouped under the
headings of:
PTAP results 1: Ensuring strong national plans and

resources to scale up HIV prevention
Results relating to: integrated and comprehensive national responses to
HIV prevention; evidence-based priority setting for national policies and
programs; and budgeting and resource allocation for health and HIV.
PTAP results 2: Building a supportive legal and social

environment for HIV prevention
Results relating to: supportive legal frameworks for national responses to
HIV prevention; and addressing stigma and discrimination.
PTAP results 3: Enhancing the scale and quality of key

HIV prevention strategies
Results relating to: introducing/strengthening positive prevention; expanding
access to HIV testing and counseling and harm reduction for people that
inject drugs and promoting new prevention technologies.
PTAP results 4: Involving people living with HIV and

building a community movement
Results relating to: empowerment and involvement of people living with HIV;
and building a community movement on HIV prevention.
24 Universal access to HIV prevention, care, support and treatment. Political Declaration on HIV/AIDS,
United Nations General Assembly, 2006.
PTAP results 1: Ensuring strong national plans

and resources to scale up HIV prevention
The largest cumulative result of PTAP was the increased contribution of the
community sector to shaping national policies and programs to support
the scaling up of HIV prevention alongside expanded access to treatment.
This involved advocacy within key national processes, from target setting for
universal access to the development of National Strategic Plans (NSPs), with
particular attention to mobilizing action on HIV prevention, promoting the role
of the community sector and using evidence to prioritize people living with
HIV and key populations. It also involved engaging in and influencing
countries budgeting processes and allocation of resources.
Integrated and comprehensive national responses to

HIV prevention
In many countries, PTAP partners were key players in ensuring comprehensive and
integrated approaches to prevention and treatment within national policies and plans
on HIV.
In Ukraine, where the Coalition of HIV Service Organizations (the Coalition) was the
PTAP focal point organization, this involved bridging different aspects of the national
response to HIV. Here, social services (prevention, care and support led by NGOs)
and medical services (treatment led by government) had previously been poorly
coordinated and addressed by separate policies. This affected the continuum and
quality of services for community members. The Coalition strengthened the links
between the two areas and pushed for integration to be reflected in all relevant
policies. This changed the political concept of HIV within the country from a
medical problem to an integrated approach that is now the cornerstone of the Road
Map for universal access.
Meanwhile, the Coalition also used its structure to promote integrated HIV prevention
and treatment at more local levels of Ukraines response to HIV. Alongside its own
seat within the National AIDS Council (NAC), its partners collaborated with the AIDS
Councils of Oblasts. Combined, this enabled the community sector to have a
significant impact on shaping the countrys policies, including the design of the
National Strategic Plan (NSP) for 2009-13.
Often, mobilizing an integrated response to HIV prevention and treatment required
the use of a variety of creative advocacy strategies with national stakeholders. For
example, in Belize, Alliance Against AIDS (AAA) coordinated efforts that included
workshops, booklets, stakeholder meetings, guidelines, TV programs and media
packs.
Road to universal access

In many cases, the advocacy of PTAP partners focused on the critical role of
integrated approaches to HIV prevention within their countrys achievement of
universal access. In Jamaica, radio programs advocated for greater government
commitment to achieve the countrys universal access targets that relate to
prevention. In Kenya, a range of advocacy opportunities such as World AIDS Day
and World Tuberculosis (TB) Day were used to draw stakeholders to an advocacy
corner to call for commitment to universal access.
The Kenya National Campaign was set up to unite the sector and hold leaders to
account for the countrys targets. The Kenya AIDS NGO Consortium (KANCO) the
PTAP focal point organization worked with UNAIDS, the National AIDS Council and
other key stakeholders to advocate to fast track all sectors responding to HIV by
examining their interventions against the specific targets for 2010 and 2015.
Meanwhile, in Russia, where the Russian Harm Reduction Network (RHRN) served
as the PTAP focal point organization, the community sector participated in the
national strategy planning process towards universal access.
In Ukraine, PTAP facilitated discussion on the prevention component of the universal
access strategy, including developing a package of services and targets. During the
course of the Project, messages have focused on the need for truly universal access.
This responded to a context of 1.63 percent HIV prevalence (the most severe
epidemic in Eastern Europe and Central Asia) and donors initially only giving resources
to 8 Oblasts. Here, within national target setting for universal access and the
development of the NSP 2009-13, the Coalition advocated for the expansion of
integrated programs to cover the whole country.
In some countries such as Nigeria, PTAP focused on the development of national
plans specifically for HIV prevention and, in turn, their integration within wider national
responses to HIV. Here, PTAP advocacy was coordinated by the Network of People
Living with HIV and AIDS in Nigeria (NEPHWAN) and Interfaith Coalition Against
HIV/AIDS (InterFAITH). It contributed to the setting up of a National HIV/AIDS
Prevention Technical Working Group by the National Agency for the Control of AIDS
(NACA) to provide technical guidance. The Project is represented on the Working
Group and actively participated in the development of the National HIV/AIDS
Prevention Plan for 2007-9, ensuring attention to the needs of key populations,
including sex workers, MSM, people who inject drugs and prisoners.
Since 2005 PTAP

has been a milestone
from which we built
and coordinated
mechanisms in our
policy. Meanwhile all
activities aimed to
expand new services
such as HIV
prevention at the
work place
correlated with
policy. PTAP showed
that well thought-out
policy is a guarantee
of quality service.
The adoption of the Plan was a breakthrough in understanding of the drivers of

Nigerias epidemic. In follow-up, NEPHWAN and InterFAITH also supported
community networks to ensure attention to the evidence-based priorities of key
populations in Nigerias NSP (that previously focused on the general population).
This included using the results of research as an advocacy tool. Examples included
the first Integrated Bio-Behavioural Surveillance Survey of key populations in 2007
(showing HIV prevalence of 37.4 percent among brothel-based sex workers) and a
Mode of Transmission Study in 2008 (showing that, despite being only 3.3 percent of
the adult population, 25 percent of HIV infections were among key populations and
their partners). To complement this, PTAPs partners also used membership of the
National Working Group on Monitoring and Evaluation to promote the role of evidence
in identifying priorities for the response to HIV.
Natalia Pidlisna,
Executive Director,
The Coalition of HIV-Service
Organizations, Ukraine
Evidence-based priority setting for national policies

and programs
PTAP success in ensuring the inclusion of key populations as priorities for national
responses was also seen in a number of other countries. In many contexts, this
process was challenged by a lack of data. For example, in Jamaica and Belize
despite indications of high HIV prevalence (such as 33 percent among MSMs and 4.9
percent among prisoners respectively) - there was little or no data on the size of such
populations and the scale of their vulnerability. In Belize, while the previous NSP
made no mention of key populations, the Plan for 2006-11 commits to information
and education programs for vulnerable populations, including migrants, sex workers,
MSM and prisoners. In Jamaica, civil society organizations were, for the first time,
invited to participate on the design of the NSP.
The Rwanda NGO Forum on HIV/AIDS (the PTAP focal point organization)
responded to the lack of data by supporting a civil society situation analysis to
support the community sectors involvement in the process to inform the NSP 200912. This led to the inclusion of national surveillance surveys of key populations in the
countrys Round 8 proposal to the Global Fund which, although not accepted, went
on to inform the successful National Strategy Application (NSA)25 for 2009-12, [see
Case study 1]. In Kenya, a significant turnaround was achieved, with previously
neglected key populations now involved in national planning processes, the focus of
interventions in the NSP and part of vibrant advocacy platforms [see Case study 2].
Similarly, in Ukraine, the NSP for 2004 failed to prioritize some key populations (such
as sex workers and men who have sex with men) and provided only limited resources
for specific interventions (such as with people who inject drugs and prisoners). This
was replaced with a Plan for 2009-13 that, partly due to community advocacy, is
based on epidemiological trends and targets a comprehensive list of key populations.
Of particular note, the Coalition influenced the inclusion of prisoners/the released
community a population neglected by both the government and donors. This
combined advocacy with the State Corrections Department and Ministry of Social
Policy and Labour with training former prisoners in advocacy. The latter changed
decision-makers attitudes by showing that released people can advocate for their
constituencies needs and demand their rights.
To complement visible advocacy, many PTAP partners also invested in behind the
scenes work to develop the package of position statements and guidelines needed
to put the scale up of HIV prevention into practice in their country. In Kenya, KANCO
supported the NAC to develop and disseminate policy statements and guidelines on
issues such as HIV prevention, voluntary male circumcision, HIV counseling and
testing, behaviour change communication, communication with youth, multiple
concurrent partners, positive prevention, gender mainstreaming, condoms and the
greater involvement of people living with HIV (GIPA).
Inclusion of HIV prevention in Global Fund proposals

In many countries, PTAPs advocacy for comprehensive and integrated HIV
prevention extended to proposal development for the Global Fund to Fight AIDS,
Tuberculosis and Malaria (the Global Fund). In Ukraine, active participation by
partners led to the inclusion of a strong and integrated prevention component in the
framework of the Round 6 application. The Coalition became a Sub Recipient of the
successful grant, responsible for creating an enabling environment for integration,
for example through the harmonization of legislation. In Nigeria, NEPHWAN and
InterFAITH also supported advocacy for increased resources for prevention in Global
Fund proposals. The National Prevention Plan was presented to a prioritization
meeting by the Country Coordinating Mechanism (CCM) to finalize the countrys
application to Round 8. As a result, the proposal included reference to the Plan and
significant prevention interventions. Although not accepted in Round 8, it was
successfully re-submitted to Round 9, with prevention constituting about 22% of the
approved grant total. As seen in Case study 1, this work was particularly important
in Rwanda one of only three countries in the world (including Kenya) in the First
Learning Wave for Global Fund-supported National Strategic Applications, a
potentially significant new approach to planning and resourcing national responses
to HIV.
25 Process whereby countries put forward a national strategy for HIV, TB or malaria for Global Fund
resources, rather than developing a proposal for specific interventions.
Case study 1: Promoting community sector involvement in National Strategic

Plans and National Strategic Applications, Rwanda
As a key aspect of PTAP, the Rwanda NGO Forum on HIV/AIDS carried out
workshops on advocacy, networking and policy analysis, with support from the
African Council for AIDS Service Organizations (AfriCASO) and the UNAIDS country
office. This enabled the Forum to analyze documents and provide critical input to the
government. It also led to a coalition of community sector groups and a Civil Society
Situation Analysis group which provided evidence of the gaps in the national
response and served as a catalyst for the community sectors involvement in shaping
the national framework.
Advocacy by the Forum and its members led to a significant number of them actively
participating in a Know Your Epidemic, Know Your Response workshop which
formed the basis for identifying the key strategies and interventions for the NSP for
2009-12. This was complemented by other initiatives, including discussions with
Members of Parliament in all 30 districts and meetings with key stakeholders (such
as UNAIDS, the CCM and bilateral donors). Overall, this resulted in the buy-in of key
government players and other stakeholders to pursue PTAPs advocacy agenda.
The Forum also acted as the community sectors focal point in the Country Advisory
Team (including the NAC, Network of PLHIV and Ministry of Health). This position
gave the sector a point from which to influence the national planning process. The
Forum contributed to the development of a community sector proposal to Round 8 of
the Global Fund, focusing on strengthening the sectors capacity to deliver technical
and financial support.
Although the Round 8 application was not accepted, PTAPs work contributed to the
role of the community sector - plus key populations (including sex workers, men who
have sex with men and truck drivers) and intensified programmes to support them
being included in Rwandas NSP/NSA for 2009-12. Within the NSA, the community
sector, led by the Forum, will implement activities and benefit from accompanying
funding. Overall, the Forums work has contributed to a vital shift in government policy
with previously overlooked key populations now addressed within the countrys
formal response to HIV. It has also empowered community sector organizations to be
a more vocal and engaged voice one that actively informs government priorities
and policies.
Budgeting and resource allocation for health and HIV

The five years of PTAP witnessed a critical and challenging time within the funding
of national responses to HIV. In many cases, successes were achieved in securing
increased budgets for both health and HIV, but often to then be threatened by insecurity
around overall national budgets (due to the economic crisis) and lack of follow through
(with national budgets for HIV not being translated into funding for agreed priorities).
In many countries, PTAP partners saw improvements in financial allocations, although
governments remained far from agreed targets, such as the Abuja Declarations call for
African countries to allocate 15 percent of national budgets to health. In Rwanda, for
example, the health budget increased from 8.2 percent in 2005 to 9.1 percent in 2008,
with 60 percent allocated to HIV. Meanwhile in Asia, Indias health budget for 2008
increased 15 percent on the previous year, with 6 percent to the NAC. There was also
variety in the proportion of HIV budgets allocated to prevention. Examples included
(from the most recent data available) 39 percent in China and 67 percent in India.
In some countries, PTAP included capacity building and active engagement of the
community sector in the processes and decision-making about national budgeting.
In Kenya, where only 25 percent of HIV funding is allocated to prevention, KANCO
combined capacity building of the community sector with spearheading campaigns to
increase resources for both health and HIV [see Case study 2]. Similarly, in Nigeria,
increasing funding for HIV was one of the community sectors three National
Advocacy Agendas. In 2005, the countrys HIV budget was 3.6 percent of the health
budget, while the health budget was 3.98 percent of the overall national budget. In
2008 the HIV budget was just 0.3 percent of the health budget, even though the latter
had increased to 5.26 percent of the national budget. Although this meant an
increase in the amount of money to HIV, the decrease in proportion was of great
concern to communities. After training in resource tracking, the community sector
formed a budget tracking working group and collected relevant data. PTAP partners
also joined a coalition to advocate for the passing of a Freedom of Information Bill to
get full access to the governments financial records.
In Jamaica, where Jamaica AIDS Support (JAS) was the focal point organization for
PTAP, the community sector also had trouble accessing clear and comparable data
due to general budgets being made by fiscal year, and health/HIV budgets by
calendar year. In Ukraine, HIV activities are not the subject of distinct budget lines
making it difficult to identify allocations to HIV, as opposed to other health areas. Here,
training was provided to the community sector in the development, monitoring and
analysis of national budgets. The Coalitions members used these skills to participate
in the national budgeting process, including a review of the previous NSP and
projections for the NSP for 2009-13. Simultaneously, its partners engaged in budget
development in nine Oblasts, involving advocacy with local government leaders and
municipal authorities and leading to the development of improved action plans and
budgets within the Alliance of Mayors Initiative for Community Action on AIDS.
After intensive negotiations, Ukraines new NSP was allocated a sufficient budget of
nearly $500 million. This would have been a fourfold increase on the previous plan,
but was halved due to the economic crisis. Also, an analysis of the budget showed
a lack of correlation with priorities for HIV whereby, although Global Fund activities
listed in the NSP focused on key populations (especially people who inject drugs),
only 13 percent of related program expenditures were allocated to these groups.
Furthermore, in practice, the $500 million breaks down as only $4 per adult per year a mere 1 percent of annual per capita health spending. This is the subject of on-going
advocacy by the Coalition, in addition to the need to ensure transparency in the
allocation of grants to the community sector and diversify funding for HIV services
(to ensure sustainability).
Finally, PTAP partners across the ten countries witnessed changes in the number
and relevance of sources of funding, both for their own sectors work and the overall
response to HIV. In particular, in countries as diverse as Russia and Rwanda, the
Global Fund became an increasingly critical source for the community sector. For
example, the RHRN gained resources for a 5-year program to scale up HIV
prevention and treatment for people who inject drugs.
10
Case study 2: Involving key populations and communities in national

strategic plans and budgets, Kenya
Kenya has a mixed HIV epidemic that is concentrated among some key populations.
For example, an estimated 6.39 percent of cases are related to injecting drug use.
Sex work, sex between men and drug use are all illegal, often driving such groups
underground and increasing their vulnerability. Here, KANCO and its partners
combined advocacy for the inclusion of priority groups in the NSP with engagement in
national budget making to increase resource allocations.
When PTAP started, key populations were not viewed as important and were missing
from the frameworks of the Kenyas action on HIV. There were few services for such
populations and no formal group articulating their needs. In response, KANCO
championed a know your epidemic approach to HIV, using involvement in national
bodies such as the Joint AIDS Programme Review and the Monitoring and
Coordinating Working Group to argue for the need for evidence. As a result, an
AIDS Indicator Survey and Mode of Transmission Study were commissioned
providing a clear indication of the need to target key populations. Meanwhile, PTAP
also exploited the NACs mandate to coordinate stakeholders under the Three Ones
pushing for a vulnerable group committee. This provided a forum for groups such as
men who have sex with men, sex workers, and people who inject drugs, and served
as a structural means to engage with the NAC. Among other results, it led to
agreement on a minimal package for sex workers. To complement this, KANCO
provided capacity building for key population groups strengthening their direct
involvement in advocacy and their participation in the NSP III. By providing a space for
a wide variety of organizations to meet, previously clandestine groups began to talk
openly, resulting in more voices and issues being heard. Now, the profile of key
populations in Kenya has increased significantly and there are vibrant groups
advocating for their needs. Also, the inclusion of key populations in the NSP is
significant, with an increasing number of stakeholders providing programs for them.
In parallel, KANCO was also fully engaged in the process of national budgeting for
health in general and HIV specifically. Again this involved a range of strategies, from
influencing national platforms (such as the CCM and the Association of Media
Women in Kenya) to joining campaigns (such as debt2health26, with PTAP building
momentum among the community sector, development partners and some donors).
KANCO also carried out political advocacy (such as with newly (re)elected members
of parliament, asking them to honour their pledges to HIV, TB and malaria), and
engaged in formal national budgetary processes (such as the Mid Term Expenditure
Review).
Throughout, KANCOs messages focused on the need for increased resources to
HIV, particularly prevention, and the obligation of the government to meet its
commitments, such as the Abuja Declaration and universal access targets.
KANCO, which has some 950 members, also built the capacity of the community
sector in budget making and analysis. This increased the sectors understanding of
the implications of budgetary policy on health care and of their role in pre and post
26 Cancellation of development grants and loans to least developed countries and transfer of or invest of
premiums to health sector in support of major epidemics.
11
budget procedures. In turn, community groups participated in budget hearings

at the district level, bringing a greater focus on communities and higher
allocation of resources to HIV through decentralized structures. During PTAP,
Kenyas allocation to health (as a proportion of the national budget) increased
from 4.5 percent in 2005 to 10 percent in 2008. Likewise, national spending on
HIV rose by 18 percent between fiscal years 2006-7 and 2007-8. However, only
some 25 percent of the HIV budgets were allocated to HIV prevention, with a
large proportion of that 25 percent earmarked for counseling and testing,
condoms and vertical transmission. This left few resources for areas such as
community mobilization. In 2009, however, there were indications that KANCOs
work had helped to achieve a change with sizeable increases in resources
from government and development partners for HIV prevention, as well as
community sector interventions.
Finally, 2009 also saw the passing of the Budget Monitoring Bill an important
response to community sector advocacy that will now allow the thorough
scrutiny of national budgets by stakeholders before submission.
Nigeria: The Think Tank works to facilitate wider participation of the community in
policy formulation, implementation, review and monitoring in Nigeria. It promises
to be one of the key legacies of PTAP in the country beyond 2009, holding great
opportunity for domestication, full community ownership and sustainability of the
PTAP philosophy in Nigeria. Government officials and development partners have
recognized and praised this initiative that facilitates opportunities for community
involvement in policy dialogue and advocacy.
Figure 4:
Viewpoints by
PTAP focal point
organizations on
ensuring strong
national plans and
resources to scale
up HIV prevention
Rwanda: The Rwanda NGOs Forum on HIV/AIDS through the PTAP project has
played a role in facilitating the engagement of civil society organizations in the
NSA process, and is also contributing to the development of the new National
Strategic Plan 2009-2012, advocating for key population issues as well as for
programs to support the alignment of prevention and treatment to be incorporated
in the Plan.
Ukraine: Within PTAP, the important work of NGOs/CBOs on HIV prevention, and
care and support for key populations was recognized through the Coalitions
active participation in the National Coordination Council and Oblast Coordination
Councils on Overcoming HIV/AIDS. Further, the Coalition took a leading role in
coordinating input into the prevention part in the Road Map on Universal Access
to HIV prevention, treatment, care and support, Global Fund Round 6 and the
National AIDS Program 2009-2013.
12
PTAP results 2: Building a supportive legal

and social environment for HIV prevention
Advocacy to change the legal environment for HIV prevention particularly in
terms of addressing stigma and discrimination and protecting the rights of
people living with HIV and key populations was a strong focus of PTAP. In
many cases, national-level efforts to change unjust and oppressive laws and
policies were complemented by programs to empower affected communities
to learn about their rights, document violations and take the lead on
advocacy.
Addressing criminalization of behaviours

In many countries, PTAP operated within legal contexts that, at best, failed to clearly
and proactively protect the rights of those living with and affected by HIV and, at
worst, criminalized HIV-related behaviours and actions. These scenarios posed an
immense barrier to the scale up of HIV prevention.
In some countries, country partners were challenged to shift powerful national
mindsets on these issues. In Jamaica, for example, JAS encounter severe difficulties
to influence legislation that criminalizes sex work, drug use and acts of gross
indecency (including sex between men), against a background of strong public
opposition to such behaviours and low political support for legal reform. JAS
mobilized community groups to make recommendations to parliament to review the
laws affecting key populations to include the right to health and protection from
discrimination, even though the recommendations were rejected.
PTAP has taught me

what advocacy is
and how to do
advocacy in the
Chinese context. It
turns out that
advocacy is not as
difficult as I thought it
would be.
In India where, once more, sex work, sex between men and drug use were illegal at
the start of PTAP the Indian Network for People Living with HIV/AIDS (INP+) which
coordinated the project met with parliamentarians and mobilized the community
sector against an Amendment Bill that would have changed the policy on sex work
from tolerance to prohibition (including extending detention periods to 7 years). The
Bill eventually lapsed due to the dissolution of the House of the People. INP+ also
contributed to the ground-breaking campaign, led by the Naz Foundation and
Lawyers Collective, to read down Section 377 that had criminalized even
consensual adult same sex behaviour and posed a barrier to HIV prevention work
with men who have sex with men. Its work in Tamil Nadu involved supporting men
who have sex with men and transgender women to participate in advocacy meetings,
and to sensitize village leaders and the media. It also involved bringing together
networks of people living with HIV and organizations of key populations in joint
advocacy helping them to appreciate the importance of working together. In July
2009, the Indias High Court made a landmark verdict to decriminalize consensual
adult same sex relations.
Feng Yu, Deputy Director of

Yunnan Daytop Drug Abuse
Treatment and Rehabilitation
Center. She is also responsible
for a key component of PTAP,
introducing counseling and
testing to detoxification center.
INP+ also supported the formation and strengthening of national and state civil
society advocacy coalitions for an HIV/AIDS Bill and anti-discrimination law.
Concerted work by these coalitions quickened the process of introducing the longpending Bill into the Indian Parliament.
13
In Belize, PTAP partners faced a context whereby homophobia is common, HIV is

often labeled as a gay disease and anal sex is illegal (under Section 53 Unnatural
Crimes of the Criminal Code). As a result, the men who have sex with men
community has been driven underground. Here, AAA used its membership of the
Policy and Legislation Committee of the National AIDS Committee to draw attention
to the anti-sodomy law within the development of a legal framework to enact
legislation to facilitate the implementation of the National AIDS Policy. In part due to
AAAs advocacy, the framework, which was presented to stakeholders and could
eventually lead to the passage/repeal of laws, includes a strong recommendation that
the law be repealed.
There are other instances of PTAP partners making strategic progress, despite
negative legislation. In Russia, although Article 6.9 of the Administrative Code (2001)
penalizes drug use, the Amendment to Article 230 of the Criminal Code (2003) states
that programs to distribute and exchange needles/syringes are not a criminal offence.
Here, RHRN maximized this within its promotion of harm reduction strategies,
including through in-country regional and national meetings that led to the
development of a joint advocacy framework on the subject. Meanwhile, in Kenya
where sex work, homosexuality and drug use are all illegal three key pieces of
legislation (Sexual Offences Law, HIV and AIDS Law and Persons with Disability Law)
have been shaped through community sector advocacy to address barriers to HIV
prevention.
In Ukraine, the Coalition was a key member of a multi-sectoral group that aimed to
modernize and harmonize the countrys policy and legislation on HIV, in line with
international standards, resulting in a rights-based framework for the national
response [see Case study 3]. It also contributed to other specific legal gains,
including the important change from criminal to administrative liability for sex work.
Meanwhile, despite drug use and possession remaining illegal, the Coalitions support
to community awareness raising and advocacy in national, oblast and city level
forums helped to achieve a reduction in the arrest of people who inject drugs.
14
Case study 3: Reviewing legislation to address stigma and discrimination,

Ukraine
In Ukraine, the HIV epidemic is particularly driven by drug use (with prevalence as high
as 81.9 percent among people who inject drugs) and stigma and discrimination (of
both PLHIV and key populations) remains high. Here, the Coalition has been a key
player within a process to modernize the countrys legislation relating to HIV. The work
included initiating the drafting of a new law (On Protection from Discrimination) and
negotiating with the Parliament for its submission and review. It has also involved
collaborating with the government to establish a working group including the
Ministry of Health, UNAIDS and the All-Ukrainian Network of PLHIV to review and
harmonize the laws and policies relating to HIV, in line with international standards.
Throughout the process, the Coalition used its contacts and outreach to build an
anti-discrimination movement. This included, through PTAP, building the capacity of
its constituencies in policy/law analysis and the use of advocacy to influence relevant
processes and achieve change, including within Coordination Councils at Oblast and
city levels.
The Coalitions collaborative efforts led to amendments to the Law on AIDS
Prevention and Social Security of Population that follows international human rights
standards and World Health Organization (WHO) and UNAIDS guidelines. It identifies
the procedure for the legal regulation of an effective response to HIV, and appropriate
legal and social protection of the population. It prevents discriminatory practices
towards people living with HIV and their relatives and includes important amendments
on issue such as free access to ARV treatment, access to prevention and the
definition of at risk population. This good practice is also reflected in Ukraines NSP
for 2009-13 which promotes a rights-based approach within the context of universal
access and evidence-based priority setting.
Addressing criminalization of HIV transmission

During the period that PTAP took place, the criminalization of HIV transmission was
a highly debated issue and one that was addressed directly in some countries.
In Belize, AAA used its membership in the NACs Policy and Legislation Committee
to include repeal of a section of the Criminal Code that criminalized the willful
transmission of HIV within the formal recommendations of a wider review of the
countrys legislation relating to HIV.
In Kenya, KANCO collected viewpoints and joined other community voices in
advocating for a review of the HIV and AIDS Act Prevention and Control Act Section
24, which stated that a person who knows is living with HIV should take all
reasonable measures and precautions to prevent transmission and should inform in
advance anyone with whom they have sexual contact or share needles. As a result of
the advocacy conducted, this Section has not been operationalized. Similarly, the
Coalition collaborated with others in Ukraine to address Article 15 of the Law on
AIDS Prevention and Social Protection, which mandated that people living with HIV
must inform others of their status before sexual contact. The Coalition was part of a
working group that drafted a new version of the law, which was approved by the
Ministry of Health and submitted to other Ministries for review. Article 26 pushes for
further elimination of unreasonable criminalization of HIV transmission.
15
Addressing stigma and discrimination

In all countries, PTAP operated within environments where PLHIV continue to suffer
stigma and discrimination due to their HIV status. Those who are members of key
populations often experience double stigma due also to their social status or
behaviour.
In many countries, advocacy combined legal action on stigma with capacity building
and community empowerment. In Ukraine, the Coalition supported an NGO
(Substance Abuse and AIDS Prevention Fund) to carry out capacity building and
advocacy on stigma and discrimination, including through a series of lectures and
training workshops for government healthcare workers. The results included improved
attitudes among the staff and decreased experiences of discrimination by people
living with HIV at medical facilities.
The Botswana Network of AIDS Service Organizations (BONASO) the PTAP focal
point organization coordinated advocacy with policy-makers to change the Public
Service Act to protect people living with HIV applying to/working in the civil service
from stigma and discrimination, and to subsequently apply its measures to the
countrys Employment Law (to ensure similar protections in other sectors).
In Nigeria, when PTAP started, violations of the rights of people living with HIV were
being reported, but there was no specific law outside of the constitution to protect
them from discrimination. After national advocacy workshops, PTAP partners worked
in collaboration with the NAC and the Federal Ministry of Justice to revive the process
of enacting a draft law prohibiting discrimination against people living with or affected
by HIV. NEPHWAN and InterFAITH mobilized stakeholders from all over the country,
including people living with HIV, to call for the speedy passage of the Bill and provide
input on its content (such as expanding its provision beyond formal workplaces). The
Bill was approved by the Federal Executive Council and was passed through its
second reading in the House of Representatives. PTAP partners are now also leading
advocacy in their respective States to have local laws against HIV-based
discrimination. The initiative also facilitated a partnership between NEPWHAN and the
National Human Rights Commission to provide legal services to people living with HIV
whose rights have been violated.
In Kenya, KANCOs work on the HIV Prevention and Control Act raised awareness
about discrimination against people living with HIV and key populations, with a Task
Force established to collect ideas on the issue from the community sector. The results
included that Part VIII of the Act outlines legal provision for people discriminated
against in workplaces, health facilities, schools and other contexts. Meanwhile,
KANCO also addressed issues of stigma within an advocacy partnership with the
Kenya Medical Association, Kenya Human Rights Commission, Ministry of Medical
Services and others to promote a right to health (and non-discriminatory) approach
to health systems and the dissemination of a health services charter. In addition,
it promoted an anti-stigma campaign by cultural and religious leaders.
Action on stigma and discrimination also involved the use of more innovative
strategies. In China, where the Yunnan Daytop Drug Abuse Treatment and
Rehabilitation Centre was the PTAP focal point organization, advocacy was carried
out through a ground-breaking radio program on Yunnan Radio Station. Co-hosted
by people living with HIV talking about their lives and experiences it won seven
media awards both nationally and internationally, including first prize for
documentaries in the 10th Radio Festival of Iran. The program was the first of its kind
in the country and led to China National Radio, the largest radio station, starting a
similar show at the national level, with assistance from PTAP.
16
Another innovative strategy in China led to an unprecedented achievement of an

NGO-led alliance changing national policy. The work started with capacity building in
HIV and law, and the building of a coalition with private law firms, the media,
academics and the community sector, to advocate for equal legal rights for people
living with HIV. In 2007, a training workshop was organized for more than 30 legal
professionals from across Yunnan Province, while, in 2008, Yunnan Righteous Law
Firm signed up as the key provider of legal aid to people living with HIV, including free
counseling and lawsuits. The cases included supporting a person living with HIV to
take out a lawsuit against a national insurance company that had a discriminatory
clause in its Personal Accident policy. Although the District Court rejected a petition in
June 2009, the plaintiff appealed to the Kunming Intermediate Court and the partners
continued to mobilize support, including through the media and a national survey
(showing that 80 percent of people supported the lawsuit). This attracted the attention
of the China Insurance Regulatory Commission. As a result, the Insurance Association
of China issued a document in July 2009, requiring all of its affiliated companies to
include people living with HIV in their personal insurance policy coverage.
Furthermore, a new insurance law will eliminate the discriminatory clause from the
countrys insurance industry filling a gap in legal protection for people living with HIV.
Media work was also important in Jamaica where a training workshop on stigma
and discrimination held for journalists led to the publication of numerous articles in
national newspapers. JAS also trained PLHIV to collect discrimination reports for
the National HIV-related Discrimination Reporting and Redress System [see Case
study 4]. In Russia, RHRN organized competitions for journalists to produce
materials on stigma and discrimination of people living with HIV and people who inject
drugs, alongside producing a special edition of a journal and a CD of songs. This was
complemented by support to regional forums of people living with HIV and advocacy
training led by people living with HIV, involving AIDS centers and human rights
organizations. Combined, these approaches contributed to a gradual movement
towards more and better programs to address stigma and discrimination. Meanwhile,
in Botswana, the documentation of cases of stigma through video production was
complemented by other strategies tailored to modern culture, including a Miss HIV
Stigma Free Pageant and Mr. Positive Living Pageant [see Case study 5].
In Belize, AAAs advocacy targets in this area combined the government and the
church. Through membership of the NACs Policy and Legislation Committee, it
supported a legal review that recommend changes to the law to ensure complete
protection of the rights of people living with HIV and criminalize stigma and
discrimination in various settings, such as work and the health system. Through
partnership with faith-based organizations (FBOs), it advocated against stigma and
discrimination in the community. Within their advocacy plan the result of a multisectoral effort AAA developed a psycho-social code for health careers at centers
that provide HIV testing, prevention and treatment services, which was adopted by
the NAC and promoted in health centers.
The Rwanda NGO Forum on HIV/AIDS also combined research on stigma and
discrimination with efforts to change legislation. In collaboration with the network of
people living with HIV, it participated in a national survey on stigma and discrimination
that informed the NSP for 2009 onwards. This showed that 74 percent of
respondents cited HIV as the main reason for experiencing discrimination.
Subsequently, the Forum contributed to the Governments development of a Bill on
Stigma and Discrimination and Reproductive Health. It was also an active member of
a Task Force of East African Networks of National AIDS Service Organizations to
advocate for a Stigma and Discrimination Bill to the East African Legislative Assembly.
17
In Nigeria, the community sector took to the streets to support the rights of people
living with HIV. For World AIDS Day 2006, PTAP supported a Walk for Accountability
through Abuja, involving community advocates, UNAIDS and the Nigeria Labour
Congress. With a banner stating Stop Stigma, Stop AIDS, they sent letters to 109
senators, 360 house members and the National Assembly, calling for legislation to
protect people living with HIV from stigma and discrimination. InterFAITH also
collaborated with the Nigerian Network of Religious Leaders Living with or Affected by
HIV to fight stigma through churches and mosques.
As in other countries, INP+ in India complemented legislative advocacy with capacity
building among PLHIV and key populations (including MSM and transgender women).
Following training workshops, they formed a Positive Action Movement to address
stigma and discrimination and human rights violations. Members now intercede when
abuses occur (such as when a government hospital refused to give treatment to a
woman living with HIV) and, in partnership with the State AIDS Control Society in
Tamil Nadu, sensitize senior police officers. The emergence of a new community
advocacy coalition to address stigma and discrimination is an indicator of the National
HIV/AIDS Policy Document (NACP-III).
Case study 4: Empowering people living with HIV to advocate on stigma

and discrimination, Jamaica
In support of GIPA now re-focused as the meaningful involvement of people living
with HIV (MIPA) - principle, the empowerment of people living with HIV has been
central to the work of JAS in Jamaica a country where stigma related to HIV
remains intense, and prevalence among marginalized key populations, such as men
who have sex with men is increasing. Here, capacity building was provided to the
Jamaican Network of Seropositives (JN+), including workshops on MIPA and
advocacy. As a member of the network said: Involvement with PTAP has given me
confidence as an individual and has allowed me to translate some of what I learned in
the workshops to my daily work.
In particular, JAS contributed to the development and broader understanding of the
National HIV-related Discrimination Reporting and Redress System - a mechanism set
up in 2006, with JN+ as the coordinating agency. The System provides a systematic
way to collect discrimination complaints and subsequent action for redress. People
living with HIV have used the system to report a range of experiences - from being
denied health care to being subjected to verbal abuse or physical violence and in a
variety of settings, including the home, workplace and government facilities. JN+
trained members as field officers who informed peers about the System and
encouraged reporting. As a result of this training and follow-up support from JAS,
levels of reporting have increased significantly. While the field officers were deployed,
both the average number of monthly complaint reports and the number of complaints
of discrimination at government healthcare facilities doubled.
18
Case study 5: Using culturally-sensitive strategies to mitigate stigma and

discrimination, Botswana
In Botswana, HIV is often still associated with negative attitudes and abuses of
human rights. Here, BONASO used a range of creative and culturally-specific
advocacy strategies to empower different types of communities to advocate against
stigma and discrimination.
In collaboration with the Centre for Youth of Hope, BONASO supported the
documentation of cases of stigma and discrimination through video production, with
people living with HIV speaking about the challenges they experience, for example in
areas such as access to treatment and partner notification. This provided evidence of
the factors undermining effective HIV prevention for young people and empowered
them to overcome stigma and access services. Meanwhile, BONASO also targeted
tribal leaders who are key community actors in Botswana, being regarded as the
custodians of Tswana Culture and commanding significant respect. The work involved
mobilization, capacity building on stigma and discrimination and the development of a
manual on a Minimum Package for Tribal Leaders. As a result, they became
champions of local advocacy to address stigma and discrimination and promote the
scale up of HIV prevention alongside expanded access to treatment. This enabled the
activities to be both more appropriate for local cultures and more sustainable.
Meanwhile, Miss HIV Stigma Free Pageant was a another BONASO strategy one
that, again, documented and shared evidence of stigma and discrimination. By
empowering people living with HIV and reducing stigma within communities, this led
to improved acceptance of people living with HIV by their families and, in turn,
strengthened positive prevention. In parallel, BONASO also provided technical and
financial support to the Botswana Network of People Living with HIV and AIDS to
organize a Mr Positive Living Pageant to promote male involvement in HIV
prevention and care.
China: Over the last five years, PTAP partners have achieved exceptional
impacts in changing discriminatory policies of Chinas insurance industry toward
PLHIV. They have also played an integral role in institutionalizing positive
prevention services by the Yunnan CDC and its sub provincial affiliates.
Figure 5:
Viewpoints by
PTAP focal point
organizations on
building a
supportive
legal/social
environment for
HIV prevention
Kenya: Results from this initiative included reduction in stigma and

discrimination noted through extensive work in contributing to national GIPA
guidelines development and its consequent dissemination across wide range of
stakeholders in Kenya. Today, PLHIV in Kenya are represented and engaged in
various decision-making platforms and notable is also the presence of vibrant
PLHIV networks and support groups. Unlike before when community
organizations were pre-occupied with product and service delivery interventions,
more community organizations are venturing into advocacy as an integral strategy
in their interventions.
19
PTAP results 3: Enhancing scale/quality of

key HIV prevention strategies
Alongside promoting comprehensive policies and supportive environments,
PTAP advocated for the introduction, improvement and/or expansion of good
practice interventions that are critical to the scale and quality of HIV
prevention. These included positive prevention, HIV counseling and testing
and new prevention technologies, alongside population-specific approaches,
such as harm reduction for people who inject drugs. To complement this,
PTAP also advocated for the expansion of access to HIV treatment as a
vital strategy towards the scale up of prevention.
Strengthening positive prevention**

A particular focus and success of PTAP was the promotion of and mobilization for
positive prevention.
In some countries, this involved first steps. For example, in Belize, while there are still
no national policies on positive prevention, AAA started to mobilize action by
developing a booklet on positive prevention and distributing it to people living with HIV
at testing sites. In other countries, however, PTAP partners placed positive prevention
firmly on the national agenda, as a vital component of an effective policy and program
response to HIV. In Nigeria, positive prevention was identified as a gap in the national
response to HIV, with the strategy absent from both the National HIV/AIDS Policy and
the NSP. Building on community mobilization, NEPWHAN and the CSO Think Tank on
HIV/AIDS Policy [see Case study 10] made submissions to the National AIDS Policy
Review. As a result, the National HIV Prevention Plan now recommends positive
prevention as a key intervention. This advocacy work was complemented by
NEPWHAN and constituency networks working with the Center for Disease Control
(CDC) and implementing partners of the United States Agency for International
Development (USAID) to develop and roll-out a training manual on positive prevention
in health settings. Examples of practical results on the ground include that condoms
are now more widely available at ARV clinics, improving access for people living with
HIV.
Similarly, in India, a significant contribution was made to the inclusion of positive
prevention in the NACP-III. The work started in 2005, with INP+ building on its
ongoing advocacy on the sexual and reproductive rights of people living with HIV.
A three-day state-level consultation meeting was organized, providing an opportunity
to clarify the previously unheard of concept of positive prevention and to mobilize
each state-level network of people living with HIV to develop an action plan. This led
to a series of recommendations being submitted to a Member of the NACP-III Draft
Committee. In turn, the concept of positive prevention was formally introduced into
the NACP-III and, subsequently, the State plan for Tamil Nadu. While positive
prevention still needs further definition and substance in both documents, this
represents a significant step forwards in terms of putting the strategy on the map
of Indias response to HIV prevention.
** Refers to programs that help people living with HIV to: protect their sexual health; avoid new sexually
transmitted infections as well as HIV re-infection; delay HIV/AIDS disease progression; and avoid passing
their infection on to others. It is also referred as Positive Health, Dignity and Prevention, a term coined by
the Global Network of People Living with HIV (GNP+) in 2009.
20
Successes have been achieved in other countries, including Jamaica where people
living with HIV and key populations face intense stigma. Here, training of trainers and
workshops for people living with HIV and the development of a manual by JN+ and
JAS ensured a bottom up approach to positive prevention, and laid the foundations
for advocacy work. This was shared with PTAP partners in Belize as a way of cross
learning. Meanwhile, in China, positive prevention has been promoted through the
first ever National Positive Prevention Forum (involving 108 participants from 14
provinces), a national e-mail group and a network. As a result, many groups of people
living with HIV are integrating the strategy into their operations and the Kunming CDC
has compiled a manual on positive prevention in HIV counseling and testing services,
which has been distributed across the country [see Case study 6].
Case study 6: Establishing positive prevention as a key strategy, China

By the end of 2007, there were at least 700,000 people living with HIV in China, with
prevalence increasing both among the general and key populations. According to the
UNAIDS Country Situation Report for 2008, the barriers to the national response
included limited coverage of the comprehensive prevention packages to address
high-risk behaviours, weak linkage between the identification of HIV status and
referral to different parts of the treatment and care response and no effective support
for people living with HIV and their families.
Here, Yunnan Daytop Drug Abuse Treatment and Rehabilitation Centre, included
particular attention to positive prevention, using a holistic definition of the strategy to
include issues such as HIV knowledge, treatment as prevention, healthy lifestyles and
different approaches to/levels of prevention for people living with HIV. The Centre
combined capacity building with advocacy to promote positive prevention as a critical
strategy within the scale up of comprehensive HIV prevention, both in Yunnan
province and nationally. The work involved a series of training of trainers workshops,
reaching over 800 people, and the implementation of evidence-based research in
partnership with China AIDS Care (the largest network of people living with HIV in the
country). It also involved the development of two key resources - a training manual for
people living with HIV and a manual on positive prevention on HIV counseling and
testing services, in partnership with the Kunming CDC and to be disseminated to
counselors throughout the country.
The approach and tools were promoted via the setting up of a national e-group and
network on positive prevention, alongside the countrys first ever National Positive
Prevention Forum organized in collaboration with the Bill and Melinda Gates
Foundation which involved over 100 delegates from 14 provinces. The results include
that many NGOs and government organizations have now included positive
prevention in their HIV policies and programs. For example, AIDS Care China has
integrated the strategy into all aspects of its work, while the Yunnan CDC has
institutionalized it into its province-wide comprehensive management network for
people living with HIV. Overall, the concept and practice of positive prevention has
now expanded from Yunnan to 13 other provinces in China.
21
Expanding access to HIV counseling and testing

PTAPs advocacy on HIV counseling and testing also produced particularly impressive
results, especially in relation to the role of the community sector and the needs of key
populations.
In Belize, advocacy led by AAA achieved the integration of stand-alone counseling
and testing sites within the governments main hospitals and clinics reducing stigma
and increasing access [see Case study 7]. In Nigeria, access to counseling and
testing was identified as one of the community sectors three advocacy priorities.
PTAP partners mobilized interest among the community sector and participated in a
national task team where they advocated for the role of NGOs as service providers
and for innovative approaches to reach key populations. These messages were
incorporated into an HIV Counseling and Testing Scale Up Strategy (2007), with an
objective to provide 80% of the sexually active population access to services by
2015, using different approaches and models to target various groups; and making
services accessible, available and affordable to all Nigerians. In 2005, at the start of
PTAP, there were 228 counseling and testing centers. By 2003, only 7 percent of the
population had ever been tested. By the end of the Project, there were 897
counseling and testing sites and 2 million people had been tested. In particular,
access had improved for key populations through strategies such as mobile clinics
run by NGOs.
Since 2005 PTAP

has been a milestone
from which we built
and coordinated
mechanisms in our
policy. Meanwhile all
activities aimed to
expand new services
such as HIV
prevention at the
work place
correlated with
policy. PTAP showed
that well thought-out
policy is a guarantee
of quality service.
In Ukraine, the Coalitions attention to HIV counseling and testing also focused on
the needs of key populations. In particular, it sought to address the challenge of
government centers taking two weeks to process HIV tests which resulted in some
40 percent of clients, particularly key population groups, not returning for their results.
The Coalition led a campaign to expand access for key populations through the
provision of rapid tests and community sector-run services. As a result, in 2006, with
the support of the Global Fund, rapid tests for key populations were introduced
through a network of AIDS NGOs, with services provided both in user-friendly
locations (such as community centers) and mobile clinics. While coverage remains
limited, this represents an important development within the overall strategy on
counseling and testing which is one of the most developed components of the
national response to HIV.
Natalia Pidlisna,
Executive Director,
The Coalition of HIV-Service
Organizations, Ukraine
The needs of key populations have also been central in Kenya, where KANCO was
involved in the development and implementation of national testing guidelines to
provide standards for high quality voluntary counseling and testing. Here, while the
government has led on increasing the number of counseling and testing sites (from
three in 2000 to 1,000 in 2007), KANCO helped to advocate for a mix of innovative
approaches, the roll out of positive prevention within counseling and testing services
and for testing centers to be client-friendly, especially for sex workers. Before the
start of PTAP, there was little data, no guidelines and low uptake of HIV testing.
Now although still below national targets there are good practice guidelines and
greater uptake (with 4.5 million people tested by 2007). There is also increased
investment, with three quarters of the national prevention budget allocated to testing
and counseling, vertical transmission, and abstinence, be faithful and condom
approaches.
In China, only government organizations had previously been authorized to provide
HIV counseling and testing services and communications between the government
and NGOs on the subject was very limited. Here, through advocacy and collaboration
with the government, 73 counselors from 16 NGOs undertook training and were
credited with official counseling certificates. As a result, NGO counselors now work at
counseling and testing centers. In addition, a series of workshops involving nearly 600
people, led to the introduction of counseling and testing at two detoxification centers
22
in Kunming. The sharing of this experience at a provincial seminar raised strong

interest to hold a national seminar on the provision of counseling and testing in
custodial settings. All of these actions supported Chinas NSP 2006-10 which
commits to the scaling-up of counseling and testing.
In some countries, general advocacy for scaled-up counseling and testing was
accompanied by attention to specific aspects of it. In Jamaica, for example, a
coalition of advocacy partners issued a press release in response to a government
push to introduce a workplace policy on HIV, with some Parliamentarians supporting
employers right to test the employees. The advocacy focused on how pre-testing was
a contravention of the Code of Practice on HIV and the World of Work by the
International Labour Organization and UNAIDS, stating that: This move is a clear
violation of the human rights of individuals. This effort contributed to the final adoption
of a National Workplace Policy without any language on the right to test on the part of
the employers. Attention to the legal framework for counseling and testing was also
part of advocacy in Russia where training for health care professionals, the
community sector, and people living with HIV, placed particular emphasis on the
importance of pre- and post-testing counseling.
Promoting new prevention technologies

A major achievement of PTAP was catalyzing community advocacy on new prevention
technologies and, in turn, raising the profile of these important technologies within
national responses to HIV.
In Belize, PTAPs lead organization organized the first ever national workshop on new
prevention technologies, which led to the formal endorsement of female condoms and,
in turn, their wider distribution throughout the country [see Case study 7]. Female
condoms were also the subject of advocacy in countries such as Rwanda and India.
In the latter, a womens forum in Tamil Nadu, affiliated to INP+, collaborated with the
Hindustan Latex Family Planning Promotion Trust to advocate to the State AIDS
Control Society for the social marketing of female condoms to women living with HIV.
The initiative, which was the first of its kind in the country, is now being piloted.
In Jamaica and Belize, PTAP partners used a range of advocacy methods to
promote community engagement in issues relating to microbicides. These included
doing radio interviews, developing training modules and facilitating training sessions
with womens and men who have sex with men groups, as well as attempts to
establish a Community Advisory Board for trials. In both countries, training on
microbicides increased the empowerment of women in relation to HIV prevention.
Meanwhile, in Kenya, KANCO collaborated with the International AIDS Vaccine
Initiative (IAVI) and National Research Institute to increase vaccine literacy among
communities and policy-makers. It also played a key role in Vaccine Support Networks
and Community Advisory Boards. Such efforts were pivotal in calling for the
government to be rigorous in its ethical standards, include a range of stakeholders and
commit to funding research trials. The results included increases in community
confidence and participation in trials.
In some cases, PTAP partners raised awareness about the full package of potential
new prevention technologies (NPTs). In Ukraine, the Coalition held workshops on
NPTs for the community sector, focusing on legal and ethical issues and advocating for
community involvement.
These succeeded in introducing the subject of NPTs to the culture of NGOs. Similar
results were achieved in Nigeria, where a forum (involving scientists and community
groups) helped to transform previous low awareness of NPTs into community
engagement in relevant policy-making, as well as to increase communication between
trial sites and communities.
23
Case study 7: Scaling up access to voluntary counseling and testing and

female condoms, Belize
In Belize, an important impact was made on scaling up access to two strategies
counseling and testing and the female condom.
AAA and groups of people living with HIV led national advocacy, including with the
NAC and its Committees, for centers that provide both counseling and testing and
treatment to be integrated into the governments main hospitals and clinics. These
centers were previously stand-alone buildings, labelled with large signs which many
people living with HIV felt increased stigma and reduced access. The advocacy also
provided the opportunity to raise two further critical barriers to access HIV prevention
and treatment services. Firstly, there was a lack of specific initiatives for key
populations, despite high HIV prevalence among groups such as men who have sex
with men who also face severe stigma within a highly religious society. Secondly,
there was a perception of poor confidentiality within the services. The latter had led
some people who could not afford testing in private clinics or abroad to wait to
seek testing until their HIV status became obvious, sometimes when it was too late
for treatment to have an impact.
All elements of the advocacy led to action. The Ministry of Health agreed to integrate
these centers and to start data collection of HIV prevalence among key populations.
Meanwhile, AAA provided tailor made training to the staff and nurses of all of the
countrys centers on stigma and discrimination and human rights-based approaches.
Meanwhile, AAA and its partners also focused advocacy efforts on female condoms
which, prior to PTAP, were not widely available in Belize. This started in 2006, when
AAA ran the countrys first workshop on new prevention technologies involving a
range of government, United Nations agencies and community participants and
providing a platform to promote the use and endorsement of female condoms. This
was followed by training on the proper and consistent use of female condoms,
involving nurses and HIV educators. This complemented an ongoing capacity building
programme on sexual health and sexuality among community-based women
outreach workers. Meanwhile, AAA continued to advocate to the Ministry of Health
and UN agencies on the need to expand the procurement and distribution of female
condoms, while also supporting the NAC to conduct a rapid test of acceptance of the
new technology. The results showed great interest among both women and their
partners.
By the end of 2009, there was widespread distribution of female condoms in Belize.
An informal distribution network was established (involving community and
government points) and the female condoms are integrated into the work of relevant
stakeholders. There are reports of HIV educators showing women how to use female
condoms at health fairs and of nurses doing so within their government clinics. The
Belize Family Life Association (which has clinics in each district) is now distributing
female condoms and counseling clients on their proper use, as has the Belize Red
Cross and UNIBAM (an NGO for lesbian, gay, bisexual and transgender people.) The
NAP is the primary supplier of female condoms, using resources from a successful
proposal to the Global Fund.
24
Harm reduction for people who inject drugs

In some countries, it was critical for PTAPs advocacy to address issues of specific
relevance to people who inject drugs, including harm reduction and substitution
therapy.
In Russia, where some 65 percent of HIV infections have been related to drug use,
the community sector still faces highly negative attitudes of government to harm
reduction. Here, RHRN used a variety of advocacy strategies to push for the
decriminalization of substitution therapy [see Case study 8]. In Ukraine, the Coalition
collaborated with local NGOs in the western region, to organize a round table on
substitution therapy based on a rights-based approach - aiming to eliminate violation
of the rights of people who inject drugs to receive the therapy. This led to the
establishment of a new organization to monitor such violations at public health
facilities.
Case study 8: Advocating on harm reduction and substitution therapy, Russia

In Russia, HIV prevalence among people who inject drugs is estimated at 37 percent.
Despite this, only a small proportion of this community (4.9 percent in 2005) is
reached by HIV prevention programs. According to the law, any drug-related activity
of a non-profit nature and intended for personal use (e.g. acquisition, possession,
transportation, production and use) is illegal and subject to a fine or administrative
arrest. Besides this, the legislation bans any form of propaganda relating to drugs,
including discussions and publications on the use of illegal substances. However,
according to an amendment to Article 230 of the Criminal Code, needle/syringe
exchange and distribution programs do not violate the law if they are part of HIV
prevention interventions.
Substitution therapy, which remains prohibited and cannot be implemented within
harm reduction programs, has been a priority for the advocacy of RHRN. RHRN has
been promoting substitution therapy as a critical component of comprehensive HIV
prevention for people who inject drugs and calling for its immediate legalization.
PTAP-supported activities included the development of an RHRN position paper and
support to a new website where publications on substitution therapy from Russian
and international resources are collected. The site is run by a group of volunteers and
provides access to cutting edge information and catalyze debate. In 2008, RHRN
also supported an action group on substitution therapy, involving activists, medical
specialists, legal experts and human rights advocates. In addition, it promoted
participation in the first national conference on Civil Society Against HIV/AIDS in
Russia: Successes, Challenge, Perspectives where a community sector Position
Statement on substitution therapy was presented. Overall, RHRN has made
significant progress in mobilizing the community sector on substitution therapy.
However, much remains to be done to address the legal and political barriers to
shaping evidence-based policies and approaches to address the needs of people
who inject drugs.
25
Other specific HIV prevention strategies

PTAP also included attention to other specific aspects of HIV prevention, depending
on national contexts.
In Ukraine, the Coalition called for the integration of tuberculosis (TB) into HIV
prevention and care issues, aiming to secure TB as part of the mandate of the
National and Oblast Coordination Councils on AIDS. To support this, it organized
advocacy activities, such as the first national NGO conference on prevention services
for people vulnerable to co-infection. Similarly, in Kenya, KANCO championed
representation of the TB sector in the CCM and contributed to the establishment of
the National Advocacy Strategy to Fight TB and HIV. KANCO was also involved in
advocacy for the mainstreaming of gender into prevention aspects of the NSP in
response to the growing feminization of the epidemic. The NSP now includes gendersensitive targets and indicators for prevention, which will facilitate community sector
tracking of its impact.
In several countries, PTAP partners collaborated with relevant advocacy partners to
ensure the inclusion of HIV prevention within national curriculum or legislation relating
to children and young people. In Belize, AAA worked with FBOs to advocate for the
Health and Family Life Policy and its insertion into the national curriculum for primary
schools. The passing of this law meant that over 90 percent of the countrys school
aged population would receive education on sexual health.
Similarly, in Ukraine, the Coalition built a strong partnership with State Social
Services for Family, Children and Youth to develop a joint approach to information,
education and communication for children and young people at risk of HIV infection.
This was taken to the Cabinet of Ministers for approval at the end of 2009. In Kenya,
KANCO advocated on the Children Act (2001) amendment bill to ensure its provision
for access to HIV prevention and treatment for children.
HIV treatment
In many countries, PTAP partners complemented attention to scaling up HIV
prevention with advocacy to ensure increased and sustainable access to HIV
treatment.
In Ukraine, the Coalition was active on advocating for the quality of treatment for
people living with HIV. For example, it participated in campaigns and roundtables to
protest against a decision on a government tender to purchase HIV drugs not
prequalified by WHO. This successful effort led to the announcement of a new tender
for prequalified ARVs. In Jamaica, advocacy focused on the abolition of user fees for
ARVs. Meanwhile, in Nigeria, scaling up access to ARVs was one of PTAP partners
three national priorities. The work included strong advocacy for the scale up of ARVs
to secondary and primary level health facilities to meet the countrys targets for
universal access. ARVs are now available at secondary level facilities, providing every
eligible PLHIV with access to the drugs. The approved Round 9 proposal to the
Global Fund will facilitate access to ARVs at primary level facilities.
In Kenya, nationwide petitions, press conferences and street events advocated for
the mass rejection of amendments to the Industrial Property Bill (2001) that would
deny the country an opportunity to exploit safeguards provided for in international
patent laws to license local drug manufacturing companies to produce or import
generic and cheaper medicines for HIV. The amendments were not passed.
26
In Belize, 51 percent of people living with HIV in need of ARVs are now receiving
treatment a major improvement from the start of PTAP when few people received
drugs and there was no national network to provide treatment. Here, the project
partners advocated for treatment and mobilized groups of people living with HIV,
leading to additional ARV drugs being available in all districts. AAAs role included
bringing people living with HIV from all over country into a meeting with the Director of
the National AIDS Program. This enabled the Director to meet a range of people living
with HIV and hear their stories, including about lack of confidentiality and inadequate
treatment. Within 2 weeks, they received the ARVs they needed, while the NAP now
has a system of ARV procurement and distribution, with small storage facilities in
each district. Advocacy actions are now directed towards increasing the number of
treatment schemes (there are currently only two) and the procurement of facilities for
viral load and T-cell counts.
Finally, in some countries, PTAP particularly focused on access to ARVs for key
populations. In Russia, for example, training and advocacy targeted harm reduction
project managers and staff of AIDS centers to ensure access to ARVs for people who
inject drugs.
Jamaica: In the words of the Advocacy Officer of JNP+: The project rollout in
2005 was important as it sought to build the advocacy capacity of civil society in
a number of areas as well as increase awareness around significant issues such
as new prevention technologies - thereby filling a major gap in the national
response.
Figure 6:
Viewpoints by
PTAP focal point
organizations on
enhancing the
scale and quality of
key HIV prevention
strategies
Russia: The activities within the project covered such issues as active NGO
involvement in legislative proceedings, decision making and financing policy on
AIDS, prevention of stigma and discrimination; building advocacy skills for people
who inject drugs, staff of harm reduction projects and people living with HIV;
treatment for people who inject drugs; networking of people living with HIV as
means of fighting stigma and discrimination; advocacy and activism in vaccine
and treatment clinical trials; cooperation of NGOs and networks of people living
with HIV in Russia.
In 2005 I was working in the State Social Centers for Family, Children and
Youth and volunteering in the public organization Center of Education
Policy in Kamenets-Podilskiy, the second largest city in the Khmelnitskiy
Region in Western Ukraine. In that time I was invited to participate in a
PTAP advocacy agenda planning meeting. Since then, I have participated
in all PTAP meetings, which enabled me to work with local authorities and
attract additional funding for prevention among vulnerable youth and
information for their parents. I have recognized that HIV prevention can
eventually arrest the HIV epidemic.
Leonid Kinuk, Trainer-educator on vulnerable youth issues, State Service on prevention work,
Public organization Center of Education Policy, Ukraine
27
PTAP results 4: Involving people living with

HIV and building a community movement
The empowerment and involvement of people living with HIV and key
populations has been central to PTAP. In all 10 countries, important results
were achieved in mobilizing and building the capacity of such groups and
ensuring their meaningful involvement in advocacy for HIV prevention. In turn,
this was part of the projects broader strategy to build a diverse, skilled and
powerful community movement to support the scale up of HIV prevention
alongside expanded access to treatment.
Empowerment and involvement of people living with HIV

In support of the Paris AIDS Summit Declaration of 199427, PTAP partners have
advocated for the greater and meaningful involvement of people living with HIV (GIPA
or MIPA) in all levels of action on HIV prevention from the design and management of
programs, to decision-making on policies and resource allocation.
Often, attention to GIPA started through support to the people living with HIV
movement, particularly district and national networks. In Belize, AAA focused on
building a skilled constituency of people living with HIV. As a man living with HIV stated
during a television interview: I am thankful for the education and empowerment that I
received from PTAP and the AAA. A national network of people living with HIV was
established, and the network of women living with HIV had its first national meeting.
In Kenya, KANCO mobilized interest in GIPA among the community sector, the
government and development partners. It participated in a GIPA National Task Force
Committee and informed guidelines for use by all stakeholders. It also organized
training workshops and disseminated the guidelines to the regions. As a result, GIPA is
now fully acknowledged by the NAC and recommended in every intervention. Some
people living with HIV can now articulate sections of the HIV/AIDS Prevention and
Control Act (2007) that support their rights or discriminate against them, enabling them
to advocate for provision in the law.
In Russia, the RHRN trained over 100 people living with HIV and NGOs in advocacy
skills and rights and supported them to take part in local and national decision-making
on the integration of HIV prevention and treatment. The community of people living
with HIV was supported to unite under an independent All-Russian PLHIV Network,
which is now represented on the Tender Commission on ARV Procurement and other
bodies. Similarly, in Nigeria, training in GIPA, advocacy, stigma reduction, networking
and resource mobilization led to the emergence of state-level networks of people living
with HIV, which are increasingly involved in HIV advocacy and program planning.
In Jamaica, JAS implementation served as a model for GIPA, involving groups of
people living with HIV and other partners in all stages of designing and implementing
the advocacy agenda. Its work has used a bottom up approach starting by
empowering people living with HIV through capacity building on GIPA and advocacy
(focusing on skills such as presentation, facilitation and policy analysis). JAS facilitated
a more direct interface between the people living with HIV community and decisionmakers, enabling the former to better use their personal experiences to inform national
advocacy. For example, it coordinated a meeting between people living with HIV and
the Ministry of Health, the National AIDS Program and the Medical and Nurses
27 The Paris AIDS Summit Declaration of 1994 acknowledged the central role of people living with HIV in
AIDS education and care, and in the design and implementation of policies and programs towards a
successful response to HIV.
28
Association. Now, the guiding principles of the NSP commit to the meaningful
involvement of people living with and affected by HIV and AIDS and most vulnerable
groups in the design, implementation and monitoring and evaluation of the national
response to HIV. The National AIDS Program created two positions for people living
with HIV to work on increasing involvement. Also, funds from PTAP supported a
variety of activities led by JN+ and promoted the cooperation processes with the
Caribbean Regional Network of PLHIV (CRN+).
The Rwanda Network of People Living with HIV now has representatives on the
countrys CCM and NAC (as well as its Working Groups). As a result, the needs of
people living with HV are increasingly taken into account in the development of
policies and the planning of interventions. For example, the NSP now includes
provisions for a review of legislation and the institutional strengthening of the Network.
Similarly, in India, representation of INP+ on the Board of the NAC, Steering
Committee of NACP-III and CCM raised the profile of people living with HIV in national
planning and policy-making. Meanwhile, in Tamil Nadu, advocacy by networks of
people living with HIV achieved the creation of additional Drop-In Centers under the
NACP-III [see Case study 9].
Case study 9: Advocacy by people living with HIV to scale up Drop-In

Centers, India
Tamil Nadu is the most urbanized state in India and one of four southern states that
account for 60 percent of HIV cases. Prevalence is particularly high among key
populations, such as people who inject drugs (24.2 percent) and men who have sex
with men (5.6 percent).
Here, soon after the launch of the NACP-III, the Tamil Nadu State AIDS Control
Society (TANSACS) developed its HIV Project Implementation Plan. However, the
process did not include wide consultation with people living with HIV and key
populations. Through INP+, workshops were organized to orientate networks of
people living with HIV and other community groups to both the NACP-III and the
TANSACS Plan. These enabled the participants to critically analyze the gaps in the
two documents. In particular, they identified that only six additional Drop-In Centres
had been sanctioned for Tamil Nadu bringing the total to 11, despite there being 30
districts (each of which has a network of people living with HIV). The Drop-In Centres
provide a hub for people living with HIV where all prevention and treatment efforts are
coordinated. Within a caring and stigma-free environment, they give a range of
services - from psychosocial support to condoms and support groups (covering
issues such as ARVs and positive prevention) as well as referrals.
As a result, the leaders of Tamil Nadus networks of people living with HIV advocated
to the NACO and TANSACS for additional Drop-In Centres. They sent a formal
communication to the Project Director of the NACO, outlining their case and asking to
meet with her. At the subsequent meeting, which also involved TANSACS, they
expressed their concerns about the service delivery gap and succeeded in calling for
an additional 19 Drop-In Centres under NACP-III. As a result, each district now has a
Drop-In Centre, run by the local network of people living with HIV and with a grant for
up to five years. This will not only increase the scale of support for people living with
HIV, but enable the networks to strengthen their management capacities and their
strategic links with the governments clinical services.
29
Building a community movement on HIV prevention

Enhancing the involvement of people living with HIV is an important achievement
within itself. However, as part of PTAP, GIPA was a component of a wider strategy to
build a broad community movement on HIV prevention one that unites a diverse
range of community stakeholders at district and national levels.
In many countries, the period of PTAPs implementation saw an increase in the
number of community sector groups involved in HIV prevention. In Jamaica, the
number rose from 12 in 2006 to 25 in 2008. In Ukraine, the membership of the
Coalition rose from 32 in 2005 to 82 in 2009, with many of them committed to
prevention work. Combined, the Coalition and its members have been active in both
the national and Oblast NACs, promoting a balanced approached to prevention and
treatment. Their major achievements include the Coalition leading the countrys
prevention aspects of the road map for universal access, Round 6 of the Global Fund
and the NSP 2009-13. Meanwhile, in Botswana, BONASO mobilized community
groups in four districts to form District NGO Coalitions for Scaling up HIV Prevention
alongside Treatment to promote and support collective national advocacy.
Each Coalition developed an action plan and engaged with district policy makers.
The results included the Coalitions being involved in Districts annual planning and
budgeting processes, and links being made between key populations and
government services. BONASO also mobilized traditional leaders as key constituents
within community decision-making.
At the heart of PTAPs work was comprehensive mobilization and capacity building
to engage and equip a range of community constituents. In Kenya, for example,
KANCO supported the development of six regional community coalitions and the
Kenya National Campaign to ensure harmonized messages and joint action at all
levels. It also within the context of a penal code that punishes sodomy, sex work,
and drug use achieved remarkable success in increasing the participation of key
populations in advocacy platforms.
In Belize, training was provided to people living with HIV, key populations and other
community sector groups in advocacy skills, policy analysis, advocacy planning,
stigma and discrimination, human rights, ethics and GIPA. Here, AAA proactively
included FBOs as an important part of its prevention movement. While the church
continues to preach in favor of abstinence and, in the case of the Catholic Church,
against the use of condoms, all of the major denominations in Belize have become
PTAP partner agencies. This is a critical strategy within a highly religious country
where the church runs 75 percent of all schools. AAA involved FBOs in training
workshops and advocacy forums, alongside specific collaborative initiatives (such
as developing a Code of Practice Guidelines for Psychosocial Practitioners in
HIV/AIDS Care).
Similar engagement and capacity building enabled the Coalition in Ukraine where
HIV prevention is now delivered by over 150 NGOs in almost all regions to build a
movement based on partnership between medical and non-medical centers. It also
achieved particular success in involving highly stigmatized communities, such as
lesbian, gay, bisexual and transgender people. Likewise, in Russia, RHRN combined
national initiatives with advocacy by its members of 25 Oblast Coordination Councils
on HIV to build a movement that responds to the specificities of the countrys
epidemic. Here, stakeholders (such as people who inject drugs, people living with HIV,
lawyers, activists and doctors) were brought together to advocate for harm reduction
and substitution therapy. RHRN also brought the countrys HIV service NGOs and
networks of people living with HIV together, exchanging information and developing a
joint strategy on HIV.
30
NEPWHAN and InterFAITH led strong and sustained action to mobilize other
networks in Nigeria from the Society for Women and AIDS in Africa (SWAA) to the
National AIDS Research Network to adopt the approach of scaled up HIV
prevention alongside expanded treatment. Each network has at least 250 members
through the countrys 36 states. Outreach also extended to a wide range of other
stakeholders, such as the Nigeria Diversity Network (which coordinates sex worker
and men who have sex with men groups), Nigeria Labour Congress and media
houses. Now, HIV prevention is an increasingly popular subject among the community
sector and policy-makers alike. One specific result of NEPWHAN and InterFAITHs
work is a change from NGOs previous, almost exclusive focus on service provision to
a recognition of advocacy as an important part of their mandate. The projects tools,
such as a list-serve and the Civil Society Think Tank on HIV/AIDS Policy [see Case
study 10] have supported this trend. In particular, capacity building workshops have
provided an opportunity to get key groups (such as men who have sex with men and
people living with HIV) and government officials together in one room, providing a rare
opportunity to share information.
Finally I know
how to work with
government officials
on our problems and
solving issues that
we face.
PTAPs mobilization of an HIV prevention movement has often added to growing

openness towards the involvement of the community sector in national responses to
HIV. In many countries, this has led to the sector having a significantly stronger stake
in key decision-making bodies and processes. For example, community sector
representatives are now Chairs of CCMs (such as in Botswana and Nigeria) and
members of NACs (such as in Ukraine), while community sector groups have
become Principal or Sub Recipients of the Global Fund (such as in Jamaica, Belize,
Nigeria and Russia).
Particpant, advocacy
training for the community
Cooperation with government
structures as the basic element
of the advocacy of HIV
prevention and the integration
of prevention and treatment
services, Russia,
May 30-31, 2009
In China, the work supported by PTAP has been part of a driving force towards
encouraging provincial governments to provide more space to competent NGOs and
community groups, despite the lack of a national policy on the role of the sector in
HIV. In Kenya, KANCO used its membership on the CCM to advise on community
sector representation, and is now, having achieved the involvement of men who have
sex with men, using its membership of the NAC to call for the involvement of lesbian,
bisexual and transgender people. In Nigeria, PTAP started with the countrys CCM
dominated by the government and only one community sector network involved in
Round 1 of the Global Fund. Now, for the first time, the CCM is chaired by an NGO
representative, while a Round 5 grant made two NGOs Principal Recipients and two
Sub Recipients.
31
Case study 10: Establishing a civil society Think Tank to create a movement
on prevention, Nigeria
In Nigeria, a country of over 150 million people, HIV prevalence is 4.6 percent among
the general population and significantly higher among some key populations (such as
37.4 percent and 30.2 percent for brothel-based sex workers and men who have
sex with men). A national survey showed that only 2 percent of people consider
themselves at high risk of HIV infection and 60 percent believe they are at no risk.
In 2007, advocacy by PTAP partners contributed to the establishment of a National
HIV/AIDS Prevention Technical Working Group by the NAC to provide technical
guidance, as recommended by the report of the Global HIV/AIDS Prevention
Technical Working Group. NEPWHAN and others are represented on the Group and
participated actively in developing the National HIV/AIDS Prevention Plan 2007-09.
The plan includes attention to key populations, such as sex workers, men who have
sex with men and people who inject drugs. Then, in 2008, an advocacy skills building
workshop led NEPWHAN and Interfaith to set up a Civil Society Think Tank on
HIV/AIDS Policy. This gives support to Constituency Coordinating Entities networks
that coordinate specific target groups (such as key populations, media and religious
leaders) and are recognized by the NAC and UNAIDS each of which has a
permanent and alternative member on the body. It also facilitates the wider
participation of the community sector, ensuring their voices are heard within the
formulation, implementation, monitoring and review of policies.
The Think Tank has received technical support from UNAIDS and the NAC to
strengthen its structure and operations. Its activities included analyzes of the National
Workplace Policy on HIV/AIDS and National HIV/AIDS Policy. The first resulted in
recommendations to the Federal Ministry of Labour to incorporate GIPA and expand
its scope to cover informal sectors. The second led to recommendations to the NAC
for attention to key populations, positive prevention, and strategies for integrating
STI and HIV prevention and government commitment to supporting the community
sector. The Think Tank also made cross-cutting recommendations, such as that
the policies should be gender-compliant and be produced in a simplified version.
NEPWHAN itself submitted an additional position paper on positive prevention.
The draft of the revised National HIV/AIDS policy (2009) and the new National
Strategic Framework (2010-2015) reflect the recommendations.
Overall, the Think Tank has been instrumental in building a community movement and
brokering community - government relations and achieving a common approach to
scaling up and integrating HIV prevention and treatment.
32
Figure 7:
Viewpoints by
PTAP focal point
organizations on
involving people
living with HIV and
building a
community
movement
Belize: PTAP has created an understanding that the AIDS epidemic is not only
about statistics and numbers of persons infected and dying but issues that make
them vulnerable, that it has to do with human behaviour, it has to do with socioeconomic issues () PTAP was a project that brought fresh air to the national
response and answered a great national concern of capacity building and
networking and the involvement of PLHIV.
Botswana: Advocacy carried out by CBOs has, at different levels, resulted in
linkages between communities in particular key populations (youth, women and
PLHIV residing in remote areas) with clinical services in Ghanzi district ()
Capacity building conducted by BONASO also resulted in increased knowledge
of HIV and AIDS facts amongst tribal leaders ... as well as skills on HIV
prevention. As a consequence, these key community actors have taken the
lead role in being champions of advocacy initiatives as community leaders.
India: PTAP-India has placed community at the fore-front to advocate for their
rights. INP+ believes in community empowerment empowering people to
influence decisions about their communities, and taking responsibility for tackling
their own problems, rather than expecting others to take initiatives. Identifying and
building the leadership capacities of individuals or groups to speak up for their
own communities and strengthening community groups to work together to
achieve the desired goal is what PTAP has done.
33
Challenges to community advocacy

In addition to achieving significant results, PTAP highlighted a number of challenges to
community advocacy on HIV prevention, as experienced in the participating countries.
Examples included:
Figure 8:
Challenges to
community
advocacy on
scaling up HIV
prevention
National
Stakeholders that are territorial and do not want others to get
context and
involved in their issues.
dynamics
Political instability, including changes of governments and civil unrest.
Slow and bureaucratic processes (e.g. for a Bill to be drafted,
reviewed, revised and passed).
Legal and budgetary processes being complicated, highly political
and not community friendly.
High turnover of staff (e.g. within key government Ministries).
Governments not respecting their commitments, for example to
human rights and universal access. Lack of transparency and
access to information from the government and development
partners.
Inadequate detail of information (e.g. on budgets for HIV, rather
than health in general).
National
response
to HIV
National prioritization of HIV prevention not being matched by

appropriate resource allocation.
Governments being unaware of new developments, such as in
relation to new prevention technologies.
Inconsistent definitions (e.g. of what is included in HIV prevention).
Lack of data to substantiate advocacy messages (e.g. about size of
key populations). Lack of strategic skills among key policy-makers
(e.g. to translate data into HIV priorities).
Policy successes not being rapidly substantiated (e.g. counseling
and testing policies not matched by the creation of more sites).
Legal and
Acute and persistent stigma and discrimination related to HIV and
social
key populations.
environment Oppressive legislative environments that criminalize key populations
and do not protect basic rights.
Cultural /religious norms that create strong, negative national
mindsets (e.g. against homosexuality).
34
Community
sector
role and
capacity
Governments that only want token or controlled community sector

involvement.
Limited capacity of the community sector to fully engage in
complex national-level policy-making. Areas such as new prevention
technologies, not being seen as relevant to to the community sector.
AIDS service organizations not seeing advocacy as relevant to
their work.
Logistical limitations of the community sector (e.g. lack of internet
access and language skills). Key decision-making bodies being
closed to genuine community involvement.
Community sector lacking a range and adequate number of skilled
advocacy leaders.
Low level of funding for community advocacy, particularly from
independent sources.
Financial
context
Global economic crisis threatening advocacy gains.

Government dependence on external funding for HIV, with little
domestic funding or innovative financing.
Poor donor harmonization on some policies and funding processes
relating to HIV.
Lessons learned
PTAP produced an extensive number and range of lessons of value to the community
sector and others, both within and beyond the 10 participating countries. Examples of
the lessons include those relating to:
Role of community advocacy within national responses
Community advocacy makes a difference. In the ten countries, PTAP

contributed to concrete changes to policies and plans that will increase access to
comprehensive HIV prevention alongside expanded treatment. These policies bring
programmatic benefits. For example, the inclusion of key populations in national
strategic plans opens the gates to promoting the rights of and providing HIV
services to such groups.
PTAP was a timely initiative mobilizing the community sector to galvanize

national action on the global agenda of scaling up HIV prevention. In some
countries, without PTAP, prevention could have fallen off the map.
PTAP filled a critical, under-funded gap in national responses to HIV. In many

countries, there are few, if any, such initiatives to provide capacity building,
networking and resources specifically for community advocacy work.
Managing and resourcing community advocacy initiatives
35
Existing community networks and coalitions are well placed to coordinate

advocacy as they are used to building consensus and their members can
engage in at the local/provincial level. Lead organizations need to be respected
within both their own sector and others, especially government. But they must also
be prepared to take bold action, where necessary openly disagreeing with official
policies.
Strong community sector directors and delegates are critical to community

advocacy as figureheads with access to decision-making. It is also important,
however, that roles and responsibilities are shared across the sector to avoid
over-dependence on individuals.
Resource mobilization is challenging for community advocacy an area not

traditionally seen donor friendly. Longer-term funding that is independent
(from government), flexible and covers core costs is particularly important as
it gives communities the freedom to target government stakeholders, while also
allowing time to create coalitions, build momentum, etc.
Planning and prioritizing advocacy interventions
Baseline data is critical to community advocacy. By gathering and comparing

data for 2005 and 2009, PTAP focal point organizations were able to analyze shifts
in national responses and demonstrate their results.
Community advocacy must be evidence and capacity-based, responding to the

real needs of communities, gaps in the national response and the added value
that communities can bring.
International commitments agreed by national governments such as the

MDGs and the Abuja Declaration - are key tools for community advocacy work.
Where possible, it is also important to align asks with a countrys NSP as this
provides an official entry point to negotiations. If alignment is not possible, it is
important to articulate why and clearly explain how the NSP needs to change.
The lack of national data on key populations remains a critical barrier to

advocacy work in terms of demonstrating the scale/vulnerability of such groups
and why (even if criminalized) they need services.
Strategies for community sector advocacy must not only address current priorities,
but look forward to emerging issues (such as new prevention technologies).
Proactive engagement in the early stages of policy-making (such as initial

discussions on a new NSP) enables the community sector to increase its impact
on how policies are shaped, rather than having to respond retrospectively.
Building a community movement on HIV prevention
36
The essentials of building a community movement are capacity building and

structural opportunities for constituents to come together to develop a shared
agenda. One will not succeed without the other. Capacity building can serve as a
catalyst for communities, including people living with HIV and key populations, to
organize their own advocacy work. Groups need to build a critical mass of skills
with high quality capacity building in core areas (policy/budget analysis, legal
processes, etc).
It is not necessary for all community organizations to be heavily involved in

advocacy all of the time. But it is necessary to have structures in place to enable
groups to give input/get feedback from national coalitions, representatives on
CCMs, Strategic Plans reviews, etc, when they need to.
Some members of the community sector do not see advocacy as their

business and need to be convinced of its relevance to service delivery.
To support this, it is often necessary to re-package complex issues and
processes into simpler, user-friendly products in local languages.
Concrete advocacy actions, that bring organizations out of their silos to work on
common concerns and within a neutral platform, can unite different aspects of
the community sector.
A place at the table is just one step towards meaningful involvement in decisionmaking. The community representatives that sit in the place need the
knowledge, skills and attitude to work transparently, accountably and effectively,
staying in touch with communities and making a difference.
It is invaluable for national community movements to be plugged into global

advocacy networks and good practice. For example, PTAPs partners benefitted
from ICASOs analyzes of global policy issues and the Global Network of People
Living with HIVs work on Positive Health, Prevention and Dignity.
Selecting and building partnerships for HIV prevention
The targets of community advocacy need to be specific to contexts - in terms

of who can bring concrete change to the issue. The community sector needs to
work with a diverse range of other stakeholders both traditional and
untraditional partners - each of which brings different expertise and influence.
Where possible, it is best to build partnerships with institutions rather than
individuals. In reality, people in key positions, particularly in political bodies, are
likely to change or rotate.
It is vital to target different government Ministries. While NACs can be allies,

they are often powerless to influence the government mindset. It is particularly
critical to work with the Ministry of Finance in order to influence budgeting
decisions.
The provision of technical support for example to government health workers

can increase the credibility of the community sector and create good will, providing
an in-road to advocacy.
Advocacy methods and messages
37
People living with HIV and key populations must be at the heart of effective
methods and compelling messages for community advocacy.
A variety of advocacy methods is often needed to achieve results. Traditional

methods, such as press releases, continue to be effective. But new
technologies, such as list-serves, are increasingly important.
It is important to learn about the methods/protocols that suit each advocacy

partner. For example, to reach the Director of the NAC, it may be necessary to
communicate through State-level directors. It is also important to adapt
messages to changing contexts. For example, the economic crisis requires
groups to articulate why hard-won gains in funding to health and HIV must be
maintained.
Implementation of advocacy agendas can be costly. So, it is important to carefully

plan realistic actions within the financial and human resources available.
Responding to legal and policy environments
Community advocates must maximize formal agreements from the Political

Declaration on HIV/AIDS28 to the Declaration of Alma Ata29 - to which their
government is already committed. These represent agreed, international good
practice and provide an entry point to national advocacy on, for example, the right
to universal access to HIV prevention and treatment for key populations.
In many countries, communities continue to face the fundamental and significant

challenge of legislative environments that criminalize populations and
behaviours. However, even within such contexts, it is still possible to achieve
advocacy successes.
Legislative change is important, but is only part of the battle. For example,
once passed, a law needs to be implemented and enforced by the government
and communicated by NGOs. Similarly, supportive policies need to be translated
into services (requiring financing, infrastructure, training, etc).
The introduction/change of one piece of legislation often has a domino effect

requiring further advocacy and changes. For example, a new law against stigma
and discrimination of people living with HIV may require amendments to existing
laws or by-laws on areas such as employment and insurance.
HIV prevention programs are not enough, without a supportive environment

for individuals to fulfill their rights and protect themselves from infection. The
community sector has an important role in advocating for changes to structural
factors that, in particular, address the articulated needs of key populations and
enable them to sustain safe and healthy behaviours.
28 Political Declaration on HIV/AIDS, United Nations General Assembly, 2006

29 Declaration of Alma-Ata, International Conference on Primary Health Care, Alma-Ata, USSR, 6-12
September 1978.
38
Recommendations
In addition to lessons learned, PTAP produced a number of recommendations for
action by the community sector and other key stakeholders involved in national
responses to HIV. These include that:
1. The community sector, including PLHIV and key populations, should
continue to be passionate advocates for the scaling up of HIV prevention
alongside treatment. Those living with and affected by HIV have a particularly
critical role in convincing others about why prevention still matters and why it
requires a supportive environment and appropriate resources.
2. The community sector should work together to develop the package of
knowledge and, particularly, skills needed to engage effectively in national
advocacy and policy-making on HIV. Alongside policy analysis and
communications, this involves capacity building in non-traditional areas, such
as budget analysis and indicator development.
3. The community sector should work together to build the infrastructure
necessary to gather information, channel input and give feedback on advocacy
work to engage and represent a wide range of constituents and, in turn, make
an evidence-based and representative contribution to national advocacy and
policy-making. The community sector should maximize the current opportunities
available to them (such as Community Systems Strengthening grants from the
Global Fund) to resource such work.
4. Key national stakeholders - including governments, donors and
multilateral partners should put the rhetoric of know your epidemic into
practice by being open to evidence-based advocacy by the community sector
(for example about key populations).
5. National governments should welcome the role of community advocacy in
highlighting regional and international agreements and best practices on HIV
prevention. They should honor relevant commitments, such as the Declaration of
Human Rights (1948), Declaration of Alma Ata (1978), Paris Declaration (1994),
Abuja Declaration (2001) the UNGASS Declaration of Commitment on HIV/AIDS
(2001) and Political Declaration on HIV/AIDS (2006).30
6. National governments should treat the community sector as genuinely equal
partners within the national response to HIV, providing them with meaningful
opportunities to influence all stages and aspects of decision-making on programs,
policies and resource allocation.
7. National governments and international donors should provide free and
transparent access to their information, for example on budget allocations, to
enable the community sector to analyze and track prioritization and performance.
This information should be provided in a format that is clear and can be
understood by people who are not technical experts.
8. International public and private donors, including the Global Fund,
bilaterals and other multilaterals should recognize the returns on investing in
community advocacy - in terms of securing supportive environments for effective
responses to HIV and increasing the impact of the services that they fund. They
should include advocacy within their portfolio of support, giving communities
access to resources that are independent of governments.
30 Universal Declaration of Human Rights, United Nations General Assembly, 1948. Declaration of
Alma-Ata, International Conference on Primary Health Care, 6-12 September 1978. Paris Declaration on
the Greater Involvement of People Living With HIV and AIDS (GIPA), Paris AIDS Summit, 1994. Abuja
Declaration, Africa Union, April 2001. Political Declaration on HIV/AIDS, United Nations General
Assembly, 2006.
39
ICASO 2010
Information contained within this publication may be freely reproduced,
published or otherwise used for non-profit purposes.
International Council of AIDS Service Organizations (ICASO) should
be cited as the source of the information.
Design: Aplin Clark
Printing: Captain Printworks
The images used within the body of the publication are courtesy of ICASO
and PTAP partners cited in the publication.
Special thanks to the donors that supported the project:

The Bill and Melinda Gates Foundation,
the Canadian International Development Agency of the Government of Canada (CIDA),
the Danish International Development Agency (DANIDA),
the Ford Foundation,
the International AIDS Vaccine Initiative (IAVI)
and Positive Action.

Investing in Community Advocacy For HIV Prevention

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Investing in Community Advocacy For HIV Prevention

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Investing in

Showing results: Investing in community advocacy for HIV prevention

Prevention and Treatment Advocacy Project

Aim and audience of report

PTAP results: Introduction

PTAP results 3: Enhancing scale/quality of key HIV prevention strategies

Challenges to community advocacy

Case study 1: Promoting community sector involvement in NSPs/NSAs, Rwanda

Case study 3: Reviewing/introducing legislation to address stigma and discrimination, Ukraine

Case study 6: Establishing positive prevention as a key strategy, China

Case study 8: Advocating on harm reduction and substitution therapy, Russia

Showing results: Investing in community advocacy for HIV prevention

Alliance Against AIDS (Belize)

Botswana Network of AIDS Service Organizations

Country Coordinating Mechanism

Centers for Disease Control

Coalition of HIV Service Organizations (Ukraine)

Global HIV Prevention Working Group

Greater involvement of people living with HIV

Global Fund to Fight AIDS, Tuberculosis and Malaria

HIV Counseling and Testing

International Council of AIDS Service Organizations

Indian Network for People Living with HIV/AIDS

Interfaith Coalition against HIV/AIDS in Nigeria

Jamaica AIDS Support

Kenya AIDS NGO Consortium

Men who have sex with men

National AIDS Committee/Council/Commission

National AIDS Programme

Network of People Living With HIV and AIDS in Nigeria

National Strategy Application

National Strategic Plan

Prevention of mother-to-child transmission

Prevention and Treatment Advocacy Project

Russian Harm Reduction Network

United Nations Joint Programme on AIDS

Figure 2: UNAIDS: Essential policy actions for intensifying HIV prevention

Figure 5: Viewpoints on building a supportive legal/social environment for HIV prevention

Figure 8: Challenges to community advocacy on scaling up HIV prevention

Showing results: Investing in community advocacy for HIV prevention

Showing results: Investing in community advocacy for HIV prevention

PTAP results 1: Ensuring strong national plans and resources

Showing results: Investing in community advocacy for HIV prevention

PTAP results 2: Building a supportive legal and social

Showing results: Investing in community advocacy for HIV prevention

PTAP results 3: Enhancing the scale and quality of key HIV

In Russia, HIV prevalence among people who inject drugs is estimated at 37

Showing results: Investing in community advocacy for HIV prevention

PTAP results 4: Involving people living with HIV and building

Showing results: Investing in community advocacy for HIV prevention

Challenges and lessons learned

resource mobilization is challenging for community advocacy as it is an area not

community advocacy needs to be evidence and capacity-based (responding to

community advocacy needs to combine capacity building with structural

advocacy targets need to be specific to contexts, involve a range of stakeholders

Recommendations for action

Showing results: Investing in community advocacy for HIV prevention

4. Key national stakeholders including government, donor and multilateral

Showing results: Investing in community advocacy for HIV prevention

Prevention and Treatment Advocacy Project

Donors should prioritize increasing civil societys capacity to participate as full

Bringing HIV Prevention to Scale: An Urgent Global Priority, 2007

Showing results: Investing in community advocacy for HIV prevention