PTAP

10-country Prevention and Treatment Advocacy Project International Council of AIDS Service Organizations (ICASO)

Community Advocacy for Policy Change: Scaling Up Prevention Alongside Treatment

An Impact Report

PTAP is a 10-country project being implemented by the International Council of AIDS Service Organizations (ICASO) in partnership with its Regional Secretariats through in-country focal point organizations.
PTAP Country Focal Point Organizations:
Botswana Belize China India Jamaica Kenya Nigeria Russia Rwanda Ukraine Botswana Network of AIDS Service Organizations (BONASO) Alliance Against AIDS (AAA) Yunnan Daytop Drug Abuse Treatment & Rehabilitation Center Indian Network of People Living with HIV/AIDS (INP+) Jamaica AIDS Support (JAS) Kenya AIDS NGO Consortium Network of People Living With HIV and AIDS in Nigeria (NEPHWAN) and Interfaith Coalition against HIV/AIDS in Nigeria (InterFAITH) Russian Harm reduction Network (RHRN) Rwanda NGO Forum on HIV/AIDS Coalition of HIV-Service Organizations

Acknowledgements
This global report is a summary of the PTAP country reports prepared by in-country consultants and supported by the Regional Secretariats and Focal Point organizations. We are grateful for the financial support from donors which have supported this project: the Bill and Melinda Gates Foundation, the Government of Canada through the Canadian International Development Agency (CIDA), Danish International Development Agency (DANIDA) and GlaxoSmithKline Positive Action Programme.

In-country consultants: Martin Cuellar (Belize), Zhai Wen (China), Aiswarya Rajyalaxmi (India), Ava Gail Gardiner (Jamaica), Paul Kuria (Kenya), Oluwatoyin Afachung (Nigeria), Helene Balisanga Nyiramazaire (Rwanda) and Nikolko Marianna Victorivan (Ukraine).

Written by Tim Thomas and Sumita Banerjee Regional Secretariat partners for PTAP:
African Council of AIDS Service Organizations, AIDS Action Europe, Asia Pacific Council of AIDS Service Organizations, and the Latin American and the Caribbean Council of AIDS Service Organizations.

Latin American and the Caribbean Council of AIDS Service Organizations

LACCASO

Table of Contents

Executive Summary Introduction & Methodology

2 3 4 19 25

Section 1: Government Policies Informed by PTAP Advocacy Section 2: Mobilization of Community Advocates by PTAP Section 3: Future Opportunities for PTAP to Inform Policy Section 4: Conclusions and Next Steps
Abbreviations

26

Images: Page 2: Russian Harm Reduction Network; Page 3: Yunnan Daytop; Page 4, 19: ICASO; Page 19: Richard Lord; Page 28: Sean Hawkey

Executive Summary
In 2005, ICASO began its implementation of a global five-year community mobilization and advocacy project in ten countries: Belize, Botswana, China, India, Jamaica, Kenya, Nigeria, Russia, Rwanda and Ukraine. This project, the Community-Based Advocacy and Networking to Scale-Up HIV Prevention in an Era of Expanded Treatment, is better known as the Prevention and Treatment Advocacy Project (PTAP).

PTAP is contributing to national and state policy and programming shifts to increase access to comprehensive HIV prevention alongside expanded treatment for HIV and AIDS. The project has done this by mobilizing the national community sector and creating a pool of dynamic and skilled advocates.

In 2007, ICASO undertook a study to document the country-level achievements and challenges of PTAP. This impact review has demonstrated how PTAPs structure, based on national focal point organizations working with local community networks and supported by regional and global organizations, has built a strong mechanism for effective national community sector advocacy on AIDS. Examples contained in this report of PTAP partners impact include: In all countries, built skills and capacities of community advocates to assess and analyze national AIDS policies, and to coordinate and undertake civil society advocacy. Successfully advocated for the involvement of civil society in drafting, implementing and monitoring national AIDS strategies (e.g. Kenya, Ukraine, Russia and Jamaica.) Identified gaps in national AIDS strategies and successfully advocated for the development of more comprehensive and effective polices (e.g. India, Nigeria, Ukraine and Kenya.) Successfully advocated for improvements in policy and service delivery on specific issues, for example, on Positive Prevention (China) and voluntary counseling and testing (Belize.)

The study has also highlighted key advocacy issues emerging out of PTAP that need continued and urgent community advocacy action. These include promoting policies: that support Positive Prevention, which address, systematically, HIV-related stigma and discrimination; that mainstream gender and human rights; that support effective harm reduction strategies; and that ensure HIV testing and counseling scale-up meets and protects the needs of those who know their HIV status and those who do not. It is also clear that to be able to implement PTAP to its fullest and to document project activities comprehensively (including valid monitoring and evaluation), will require significantly higher financial and human resource investments. This impact report shows that community mobilization and advocacy are powerful tools for bringing about policy change. Continued and sustainable support for national community advocates is essential if the gains are to be maintained and if we are to ensure continued monitoring of AIDS policy implementation.

2 PTAP Impact Report: Community Advocacy for Policy Change

Introduction & Methodology

The 2007 UNAIDS Global Epidemic Update Report showed declines in HIV incidence, partly due to the success of prevention programs that have resulted in behavioral change in different contexts. Consensus is emerging that prevention programs must continue to evolve and expand, because treatment initiatives will never be able to keep pace with new infections. In 2005, ICASO launched an ambitious global five-year project entitled Community based Advocacy and Networking to Scale up HIV Prevention in an era of Expanded Treatment (or PTAP, the Prevention and Treatment Advocacy Project). The project was rolled out in ten countries Belize, Botswana, China, India, Jamaica, Kenya, Nigeria, Russia, Rwanda and Ukraineat a time when donors, policy-makers and programmers were prioritizing the expansion of treatment programs over prevention initiatives. ICASO recognized that expanded and improved prevention programs alongside new and existing treatment programs could have a profound impact on reducing HIV infection rates. PTAP was designed to contribute to policy and programming shifts to increase access to comprehensive HIV prevention alongside expanded treatment for HIV and AIDS. The project does this by mobilizing the community sector and creating a pool of dynamic advocates. Currently in its fourth year, PTAP has demonstrated some tangible results, which were documented in a recent impact study undertaken in the countries. The impact study, summarized below, highlights the emerging lessons and policy impact of the project relevant to community advocates and their supporters around the world, interested in undertaking a similar initiative. This global impact report highlights some of PTAPs successes in bringing about policy change to enable the scaling up of prevention alongside treatment. It also highlights some challenges that PTAP has faced in its implementation, as well as opportunities emerging out of the project for future involvement and attention.

Methodology: For this study, ICASO undertook a comprehensive documentation process of the project at country-level. In-country consultants were provided with study guidelines. The consultants reviewed the project documentation and also conducted in-depth interviews with the respective country project coordinators, the implementing partners in each country and other relevant stakeholders, including representatives from NGOs and CBOs, National AIDS bodies, and government representatives amongst others. The findings from the country reports form the basis of this global impact report. Structure of the Report: This global impact report is divided into four sections. Section 1 examines some of the successes of the PTAP-related advocacy and how this has informed and shaped national policies and programs. Section 2 looks at the key roles played by the project partners in mobilizing and convening communities around strategic policy issues, and developing their advocacy skills to create an active pool of national advocates and community leaders. Section 3 focuses on future opportunities to inform policy in PTAP countries. And finally, Section 4 summarizes key conclusions, with the need for continued human and financial investments to guarantee sustainability of actions initiated through PTAP.

PTAP Impact Report: Community Advocacy for Policy Change 3

Section 1
Government Policies Informed by PTAP Advocacy
The policies that governments around the world formulate to address their national HIV epidemics must be in line with and responsive to the evolving needs of the most vulnerable and affected communities. Unfortunately, most governments have not kept pace with the rapid changes this epidemic demands. A key function of PTAP is to assess, analyze and represent the challenges faced by the people who are most affected by HIV and AIDS to their governments, at both the national and local levels, and advocate to governments to adopt new policies commensurate with these challenges. The following is a brief outline of PTAPs key advocacy achievements to date in different countries. These achievements help demonstrate how PTAPs structure, based on national focal point organizations working with local community networks and supported by regional and global organizations, has built a strong mechanism for effective national community sector advocacy on AIDS.

Belize Alliance Against AIDS (AAA)

Advocating for effective Voluntary Counseling and Testing (VCT) services: An initiative of the Alliance Against AIDS, through the PTAP project, focused on advocating for changes in the way VCT Clinics are being managed by the National AIDS Commission and Ministry of Health. When established, the clinics were constructed as stand-alone buildings outside the various district hospitals with obvious signs to the clinic. Clients complained that they felt uncomfortable visiting these clinics, due to the possibility that observers may assume that they are HIV+, merely by going there to take a test, or even more so if they return repeatedly. Through advocacy, AAA recommended the re-integration of the VCT clinics into the mainstream health centers and hospitals throughout the country. The Ministry of Healths AIDS program has agreed to implement a management plan for such re-integration.

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China (Yunnan Province) Yunnan Daytop Drug Abuse Treatment & Rehabilitation Center(Daytop)
Government-Civil Society Collaboration on VCT. Voluntary counseling and testing has emerged as a priority issue in China and as an important gateway to prevention, treatment and care services. In China, only government organizations are officially authorized to give full VCT services, i.e. both counseling and testing. Other social sectors, including NGOs and CBOs, are only allowed to provide voluntary counseling and refer their clients to the official HIV testing centers. Communication and cooperation between government and NGOs is very limited, with little information being shared. A consultation on VCT was held in Kunming in September 2006. It was jointly organized with the Yunnan Association for AIDS/STI Prevention and Control. This was the first time that the public health authority and NGOs were brought together to have an in-depth discussion on VCT in Yunnan province. The meeting garnered support from different levels of the government, including participation from high level officials of the Yunnan Provincial Center for Disease Control and Prevention (CDC), the Kunming Municipal AIDS Office and the National CDC. The consultation helped to promote communication, understanding and appreciation between government VCT providers and NGOs. The consultation reviewed the achievements and gaps in VCT services in Yunnan. Key issues identified at the consultation included the need for on-going capacity building for VCT counselors, strengthening VCT service management, monitoring VCT delivery, better communication between government and NGOs, and the setting up of a referral resource network for VCT. As an example of the cross-country learning facilitated by PTAP, the consultation also included a resource person from the Y.R Gaitonde Center for AIDS Research and Education (YRG CARE) in Chennai, India. They shared the VCT experience in India and the collaboration between the government and community sector in the delivery of VCT in that country. A press release about this meeting was prepared in both English and Chinese and posted on the most popular AIDS websites in China as a means to reaching out to a wider group.

Following the consultation, both the Provincial and Municipal CDC expressed an interest in jointly organizing VCT-related PTAP activities, and the Kunming Municipal CDC formed agreements to include NGO counselors in its official counseling centers. Other subsequent activities in 2007, included ethics training for VCT counselors addressing issues of stigma and discrimination at VCT centers, with reported improvements in attitudes to clients. Another related outcome of this advocacy work within PTAP, is that while there is still some resistance in offering HIV testing for the residents within the Guandu Detoxification Center for people who use drugs, the Center recently agreed to have HIV pre-test counseling available from May 2008.

PTAP Impact Report: Community Advocacy for Policy Change 5

Positive Prevention: Turning Policy into Practice. In a 2007 report on PTAPs progress in China, an analysis of the governments HIV and AIDS-related policies revealed a disconnect between policies that have been documented and the implementation of these policies.
There is general global consensus that Positive Prevention1 is critical to reducing HIV transmission rates within vulnerable populations, and also enables people living with HIV (PLHIV) to protect and promote their own sexual health. When PTAP was initiated in the Yunnan Province, there were no concrete plans to implement Positive Prevention by the Yunnan Provincial Center for Disease Control and Prevention (CDC). As part of PTAP, APCASO and Daytop organized a series of workshops on Positive Prevention for community and government representatives. Subsequently a systematic advocacy initiative on the importance of Positive Prevention was developed by PTAP. As a result, by the end of November 2007, four training workshops were held for over 240 voluntary counseling and testing (VCT) counselors from the prefectures of Honghe, Dehong, Wenshan and Anning. Positive Prevention is now a vital component of all VCT counseling throughout Yunnan and has been officially incorporated in the training curriculum of VCT counselors.

Government Collaboration with Civil Society. Situational analysis within PTAP found that there was insufficient collaboration between the Chinese government service delivery structures and the NGO/CBO community working in locations and with groups that the government does not reach.

Public products and services are still considered to be under the monopoly of government and could only be provided through centralized bureaucratic structure. Business, civil society and individuals are not recognized as important part of the solution ICASO country documentation report, 2007
In response to this, within PTAP, APCASO and Daytop undertook an advocacy initiative to promote the inclusion of NGO services in government facilities. A recent agreement with the Kunming Guandu District Detoxification Center that now allows NGO counselors to work within its Drug Detoxification Center is a demonstrable result of these advocacy efforts. A further demonstration of this collaboration, is the involvement of government personnel in a workshop on Positive Prevention, VCT and Addressing Stigma and Discrimination, which was held in November 2007, for police personnel, IDU peer educators and patients. If this breakthrough results in setting up a model that can be replicated, further cooperation is expected to be established between Daytop and Kunming Detoxification Center, South East Asias largest detoxification site.

6 PTAP Impact Report: Community Advocacy for Policy Change

CHINA

Many documents to a large extent have focused on the technical aspect(s). Some researchers have argued that substantial challenges are from non-technical aspects such as officials attitudes and public moral perceptions. One (non-Chinese) informant observed: The only way you have any influence on the government (in China) is working with them, letting them know what you are doing, providing added value to what the government is doing on HIV then they are much more likely to listen.

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Positive Prevention encompasses activities to allow PLHIV to protect their sexual and reproductive health and rights, avoid new sexually transmitted infections as well as HIV re-infection, delay HIV/AIDS disease progression, and avoid passing their infection on to others.

India (Tamil Nadu State) Indian Network of People Living with HIV/AIDS (INP+)

Civil Society Consultation on the HIV/AIDS Bill: The Constitution of India recognizes a range of fundamental rights for all persons. However, attempts to support and protect the constitutional rights of PLHIV in India have not been entirely successful. The absence of a federal statute specific to PLHIV allows broad and inconsistent judicial rulings on cases involving the discrimination of PLHIV. In addition, the ability for PLHIV and other marginalized communities in India to access services is hampered by the continued HIV-related stigma and discrimination. Therefore, there is a movement to pass legislation called the HIV/AIDS Bill.
A unique government and civil society partnership has formed to conduct the intensive research required to draft and introduce the HIV/AIDS Bill to Parliament. The National AIDS Control Organization (NACO), with technical support from the Lawyers Collective HIV/AIDS unit, drafted the HIV/AIDS Bill, which proposes legitimizing and legalizing initiatives aimed at: preventing discrimination; guaranteeing the protection of the rights of individuals in relation to HIV and AIDS; prohibiting discrimination based on a persons HIV status or their association with HIV; and promoting prevention, care, support and treatment programs. The proposed HIV/AIDS Bill was to have been tabled in the 2007 budget session, but it was delayed. Following the drafting of the bill, the Indian Network of People Living with HIV/AIDS (INP+) and the Lawyers Collective, supported through PTAP, has mobilized support for and awareness of the proposed legislation. At a meeting in New Delhi in February 2008, representatives from PLHIV networks and civil society organizations (CSOs) articulated the need for a broad coalition among CSOs in India, to inform them of the bill and strengthen civil societys response to the delay in tabling of the bill in the current parliamentary agenda. Media attention to this advocacy initiative has been intense, and government involvement (including Members of Parliament and judges, amongst others) is notable at all levels. The consultation was one of the first of its kind that brought together key government representatives, civil society, funding agencies and the media. Similar consultations were held at the state level (Tamil Nadu) with support from PTAP: to inform stakeholders and create a coalition movement to have the bill tabled in Parliament as early as possible. Tamil Nadu is the first state in India to establish a state advocacy steering committee for the HIV/AIDS Bill a loose coalition of PLHIV networks, CBOs and NGOs that leads all state level advocacy activities to quicken the introduction of the HIV/AIDS Bill in the Indian Parliament. INP+ and its partners will attempt to replicate this advocacy model in other states.

Civil Society Consultations on the National AIDS Control Program. The third phase of the National AIDS Control Program (NACP III) was rolled out in the middle of 2007. It called for packaging prevention, support and treatment programs at different levels of health care, to ensure a complete spectrum of HIV-related services. Stress is placed on Positive Prevention for those accessing care and support, particularly ART services.

8 PTAP Impact Report: Community Advocacy for Policy Change

The NACP III is a key strategic policy document that will determine how HIV programs are to be implemented over the next five years, including guiding the State HIV Implementation Plans. Consequently, through PTAP, INP+ began a process of mobilizing and informing NGOs, CBOs and other stakeholders on the draft content of the policy document. They organized a series of consultations involving key stakeholders, including representatives from the National AIDS Control Organization and State AIDS Control Societies. NGOs successfully advocated for key interventions to be included in NACP III. Among these were prevention programs for transgender persons.

Yesterday, we didnt have any concrete evidence to show to others what we have achieved as a result of our advocacy efforts. But today we have solid evidence.today others learn from our experience. Thanks to INP+ and PTAP for enhancing the policy analysis advocacy capacity of PLHIV networks in Tamil Nadu. Mr. Karunanidhi, Advocacy Officer, Tamil Nadu Networking People Living with HIV/AIDS (TNNP+)

The clear acknowledgement of Positive Prevention in NACP III can be linked directly to the National Consultation on Positive Prevention held in September 2005, under the aegis of PTAP. Dr. Sudhakar, the chief architect of NACP III, was a part of that PTAP consultation and has played a pivotal role in the inclusion of Positive Prevention principles in NACP III. In addition, PTAP initiated civil society consultations were undertaken with the Tamil Nadu State AIDS Control Society. This resulted in the provision of an additional 19 drop-in centers (DICs) for PLHIV networks under the NACP III in Tamil Nadu, and is an good example of successful community-led advocacy by PLHIV networks in this state.

PTAP Impact Report: Community Advocacy for Policy Change 9

Jamaica Jamaica AIDS Support (JAS)

Involving PLHIV in Policy-making and Programming. When PTAP implementation began in Latin America and the Caribbean, a major emphasis was placed on expanding the involvement and inclusion of PLHIV in all aspects of HIV policy-making and programming. The opinions and participation of PLHIV have been routinely neglected and PTAP partners identified this as a major gap for the scaling up of prevention programs alongside treatment.
In Jamaica, PLHIV documented a range of human rights violations. JAS helped them organize themselves to deliver a presentation to government officials at a meeting held in Kingston in October 2007. The meeting participants comprised 26 persons living with HIV, two representatives from the Ministry of Health, and representatives from the Medical Association of Jamaica and the Nurses Association of Jamaica. The Jamaica Observer covered the meeting as news. Representatives of the PLHIV network presented government officials with 32 reported cases of stigma and discrimination, 14 of which had according to evidence occurred in a government health facility. They spoke of routine breaches of confidentiality reported via the National Stigma and Discrimination Redress System, and incidences of PLHIV being denied the free ARV treatment guaranteed by the government. The government officials promised to step up its actions aimed at reducing stigma and discrimination, ensuring access to treatment, and to including PLHIV more regularly in policy-making discussions and program design. An immediate step will be taken to consult with PLHIV when Jamaicas current Global Fund grant is renewed. Subsequent to this meeting, a working group comprising 15 PLHIV was set up to continue its advocacy work with the government. An outcome of this is that since April 2008, PLHIV have access to free health care that includes diagnostic tests, registration fees, ARV, and medication for opportunistic infections.

Kenya Kenya AIDS NGO Consortium (KANCO)

Civil Society Involvement in Government Policy-Making and Implementation. Like many developing countries, Kenya has been hard pressed to meaningfully involve CSOs in the drafting and implementation of the governments national AIDS strategy. Logistical, political and economic hurdles exist preventing meaningful involvement of a representative crosssection of civil society in policy-making and programming. Initial analysis within PTAP in Kenya identified that such involvement is critical to ensure sound policies and programs.
Through PTAP implementation, and with persistence and determination, KANCO has helped to forge strong and productive partnerships between CSOs and government agencies, especially the National AIDS/STI Control Program (NASCOP) and the National AIDS Control Council (NACC). As a result, the government has come to appreciate the role of CSOs within the context of the national AIDS response. KANCO was invited to participate in the

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development of the Kenya National HIV/AIDS Strategic Plan (KNASP) 2005-2010, and helped to define the role of CSOs in programs that provide home-based care, behavior change communications, ARV promotion and utilization, and HIV testing services. Through Joint AIDS Progress Review meetings at district, provincial and national levels, CSOs contribute to the monitoring and evaluations of the national AIDS program using the KNASP Results Framework, which is the governments mechanism for assessing progress based on key indicators. KANCO, PTAPs focal point agency, participated in the review and testing of the Community-based Partner Monitoring and Reporting tools (COBPAR), developed by the NACC to collate data on civil society activities throughout the country, in order to aggregate CSOs contributions in HIV/AIDS programming. KANCOs Executive Director is a member of the Task Force for the implementation of the HIV and AIDS Bill. The Task Force is charged with harmonizing the definitions, terms and penalties in both the Sexual Offences Act and the HIV and AIDS Prevention and Control Bill. These achievements indicate an impressive level of influence by civil society in the Kenyan governments policy making, implementation and evaluation of its response to HIV and AIDS.

Civil Society Consultation on the HIV Prevention and Control Act: Advocacy for this federal legislation began when civil society called for creating awareness about certain actions including discrimination of marginalized populations and PLHIV that fuel the spread of HIV. PTAP, through the Kenya AIDS NGO Consortium (KANCO), its focal point in Kenya, formed task forces to collect and collate ideas from civil society on this issue. They ensured that PLHIV participated in consultative meetings and workshops, and guided the drafting of the bills sections related to: information and education; access to health care services; testing procedures; and confidentiality and disclosure. Other groups that KANCO advocated for in terms of participating in the consultations, included disabled persons, pastoralists, youth, and women.
The Bill received the presidential assent on 30 December 2006. It is a legal framework that promotes public awareness of the causes, modes of transmission, consequences, means of prevention, and control of HIV and AIDS. CSOs also successfully advocated for the protection of human rights and civil liberties for individuals infected and affected by HIV and AIDS. The Act has not been implemented as of yet, as it requires the Minister in charge of the countrys response to HIV/AIDS to give it a commencement date, and other relevant Ministries to provide rules and regulations for its implementation. KANCO, through PTAP, is dedicating its time, funds, and advocacy expertise to support the implementation of the Act. Close collaboration is underway with major stakeholders such as Action Aid, Kenya Human Rights Commission (KHRC), Kenya National Human Rights Commission (KNHRC), and Compassion International (CI), amongst others, in urging the government to implement the Act immediately.

Involvement of PLHIV in National AIDS Committees and Plans. Until recently, the principles of the Greater Involvement of People Living with HIV (GIPA) had not been officially integrated into Kenyas response to HIV and AIDS at any level. Through PTAP, KANCO has undertaken an extensive advocacy initiative to build support within government, development partners and CSOs, on the importance of committing to GIPA, and to developing guidelines for

PTAP Impact Report: Community Advocacy for Policy Change 11

applying GIPA in the Kenyan context. KANCO developed a GIPA handbook that gives CSOs and other users an orientation to GIPA, within which it: outlines the role of GIPA in accessing HIV prevention and treatment; defines the need for mainstreaming GIPA in all HIV programs; and recommends different ways for increasing participation of PLHIV in decisionmaking, policy analysis, advocacy, project management and implementation. As a result of KANCOs training and advocacy, the GIPA principles are now fully acknowledged by the National AIDS Control Council (NACC) as key components for combating HIV, and are recommended in every sector and area of intervention. CSOs, under the PTAP umbrella, are intensifying advocacy efforts for the full acknowledgement, integration and implementation of GIPA principles in the Kenya National AIDS Strategic Plan 2005-2010. The mainstreaming of GIPA in CSO programming is confirmed by the meaningful engagement of PLHIV in HIV programming and management of grassroots-funding for HIV and AIDS activities. Local leaders, CSOs and communities have increasingly supported the inclusion of PLHIV in Constituency AIDS Control Committees, Constituency Development Funds, and other community-based associations.

Involvement of marginalized communities in AIDS Policies. Kenya does not have antidiscrimination laws or regulations, which specify protection for certain groups of people identified as being vulnerable to HIV-related discrimination. In fact, there are still laws in Kenya that present obstacles to effective HIV prevention and care for most at risk populations. Homosexuality and sex work are criminal offences in Kenya, and this makes it difficult to effectively engage with these key populations for prevention or supportive service provision.
This was identified as an area that impedes access to prevention services during the baseline study for PTAP in Kenya. Consensus was clear among major stakeholders that there is a critical need for KANCO, through PTAP, to lead an assertive effort to address the exclusion of men who have sex with men (MSM) and sex worker groups from HIV and AIDS policymaking and programming. A major achievement thus far for PTAP has been the success associated with advocacy initiatives aimed at ensuring the inclusion of MSM and sex worker groups in NACC and the strategic plan, KNASP. The advocacy was carried out through participation in the development of KNASP (2005-2010) and 12 sensitization workshops attended by over 400 participants, representing community-based organizations, faith-based and religious institutions, local and international NGOs, and development partners. PTAP, through KANCO, is further advocating for the inclusion of more vulnerable and marginalized groups, such as transgender persons. It is expected that through these advocacy efforts, NACC will acquire new strategies for increased HIV prevention, for gay, lesbian, transgender and bisexual communities, as well as identify the powerful roles that these groups can play in halting the spread of HIV.

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Nigeria Network of People Living With HIV and AIDS in Nigeria (NEPHWAN) and, Interfaith Coalition against HIV/AIDS in Nigeria (InterFAITH)

Consultation and Awareness for an Anti-Stigma and Discrimination Bill on HIV/AIDS.

A PTAP-sponsored National Advocacy Agenda-setting workshop was held with 33 key participants from CBOs, NGOs, government ministries and development partners. They identified that the delay in the passing of pending legislation prohibiting HIV-related discrimination, was a major advocacy issue that PTAP should mobilize civil society around. The pending bill, if passed, will protect PLHIV in the workplace, schools, hospitals, places of worship, and other social institutions, and allow for offenders to be prosecuted. The bill will support the increase in participation of PLHIV in Voluntary Counseling and Testing programs, and Positive Prevention initiatives. NEPWHAN, as part of PTAP, working with National Agency for the Control of AIDS (NACA), ENHANCE Project (Enabling HIV and AIDS, TB and Social Sector Environment Project) and Federal Ministry of Justice has coordinated a thorough review by civil society of the bill, with inputs from PLHIV, representatives of human rights organizations and lawyers. It also held a series of meetings with representatives of the National Assembly on issues faced by PLHIV and the urgent need for the passage of the bill. PTAP has mobilized the support of all relevant stakeholders, including NGOs and the electronic and print media, and has organized public debates to generate more awareness and support for the legislation. This work has been part of a long-term advocacy initiative. On World AIDS Day in 2006, PTAP supported the Constituency Coordinating Entities (CCEs) on HIV and AIDS in Nigeria in a Walk for Accountability. A parade of advocates led by the leadership of the CCEs, the Joint United Nations Programme on HIV/AIDS (UNAIDS) and the Nigeria Labor Congress, marched through the nations capital city, Abuja. At the National Assembly, the procession was received by a representative of the Office of the Clerk of the National Assembly, on behalf of the leadership of the National Assembly. Participants carried a banner with the message: STOP STIGMA! STOP AIDS! The march was held to sensitize the leadership and members of the National Assembly to the stigma and discrimination suffered by PLHIV. The highpoint of the event was the display of a pop-up banner (containing a letter from the CCEs) by the Coordinator of NEPHWAN, which was placed inside the lobby of the National Assembly complex. Letters were addressed to the 109 senators and 360 House Members highlighting the forms and contexts of stigma and discrimination throughout Nigerian society. In addition, the president of the National Labor Congress sent a letter to the leadership of the National Assembly, asking them to legislate against stigma and discrimination in the workplace. The bill is currently with the National Assembly.

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NIGERIA

One workshop participant commented: There was a training the project did on advocacy it was great. It made a lot of participants to go back to their states [and challenged their leadership]. People left this place charged. The National Agency for the Control of AIDS [NACA] bill alone was a huge success. (Note: This law converted NACA into an agency. It was
supported by PTAP.)

One government official observed, I think the project has contributed to capacity building across the board. You can see that because there is a lot more interaction between those groups and the SACAs (State Agencies for the Control of AIDS) a lot more demand for negotiating space. We get reports here that groups are demanding the undemandable a good sign, that groups are waking up and now have the strength to demand. Another informant noted that networking at state level was strengthen by the GIPA workshop. I know that for the capacity building for GIPA, at the time the workshop was done, we had only 2 state networks (of NEPWHAN) in Nigeria. We now have up to 30 State networks in the making. Seventy five percent of them are being formed by people who attended the workshop and are now coordinators of these state networks. Networking is now becoming easier because when each state is administering and monitoring the other groups in the state, information sharing is easier.

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Advocacy for Increasing the Status of NACA within Government: The PTAP advocacy partnership mobilized CSOs to push for the elevation of NACA, from that of a government committee to that of a government agency. This advocacy initiative brought about legislation, changing the committee to an agency, which now, within the National Assembly, coordinates HIV funding allocations and serves as an advocacy body within government for more intensive and strategic responses to HIV and AIDS throughout the country. Advocacy for Scaling-up HIV Counseling and Testing. A baseline study done at the inception of the project in Nigeria indicated that there was a significant shortage of VCT centers, which impeded individuals accessing testing and knowing their HIV status. This posed a significant barrier to the uptake of prevention and treatment services in the country, which NEPWHAN identified as a priority for their PTAP advocacy. As a follow up, they convened a series of consultations with the Ministry of Health, NACA, NGOs, CBOs and electronic and print media, to initiate a discussion about the inaccessibility of the majority of Nigerians to prevention and treatment services, due to inadequate VCT and ARV centers in the country. The consultations contributed to reviews of the VCT trainers manual, national VCT guidelines, and the VCT Standards of Practice that was developed by the National AIDS and STD Control Programme (NASCP), of the Federal Ministry of Health. All the partners worked together at various Ministry of Health coordinated meetings, to design a VCT scale-up plan for the country. The plan recommends that the federal government establish at least one functional VCT in each of the 774 local government areas, while also scaling up services in existing VCT and ARV sites across the country by the end of 2008.
Tremendous progress is being made as the government has given approval to NACA to scale up the number of VCT centers in the country. This is being implemented in phases: one VCT center per Local Government Area (LGA) has been established through this action and a standards manual has been produced by the PTAP sponsored advocacy committee. It is being distributed to all sites to ensure uniformity and quality in the services being provided.

Advocacy and Involvement in Government Policy Making on Prevention: PTAP mobilized key networks, NGOs and government agencies to use every opportunity to advocate for the scale-up of prevention services in Nigeria. As a result of these demands and continued prevention advocacy, NACA created the National Prevention Technical Working Group (NPTWG) in May 2007, with a PTAP representative as a member of the working group, in addition to representation from NEPWHAN.
While inaugurating the group, the NACA Director General stated that the national response will prioritize HIV prevention from 2007 to 2009, and mandated the group to produce a National HIV/AIDS Prevention Plan (2007-2009) for Nigeria before the end of 2007. A very high political commitment in support of this policy shift was demonstrated, when the Vice President of Nigeria launched the National HIV/AIDS Prevention Plan at the World AIDS Day celebration in December 2007. The plan serves as a national tool for resource mobilization and a guiding framework for evidence-informed prevention interventions in the country, targeting key populations including sex workers, MSM, people who inject drugs and prisoners.

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Russia Russian Harm Reduction Network (RHRN)

Coordinated Civil Society Recommendations. As PTAP was being formed in Russia, it became clear that a major obstacle to an effective civil society response to the countrys epidemic, was the lack of coordination among the many NGOs, CBOs and other civil society actors in their advocacy strategies and information dissemination. Donors, government agencies and the general public had varying perceptions of civil society, and were receiving mixed messages.
In November 2006, RHRN and its partners convened a working meeting entitled The Coordination of Efforts of Civil Society of the Russian Federation towards the Provision of Universal Access to Prevention, Treatment for HIV, Care and Support. The three major AIDS networks in the country (the RHRN, the Russian Network of People Living with HIV/AIDS, and the National Forum of the Non-Profit AIDS Service Organizations) were integral players in the planning and facilitation of the meeting. UNAIDS and key government representatives attended. The meeting was a unique opportunity for civil society to join forces, harmonize messages, and advocate for their role as collaborators with government in setting national goals for universal access to prevention and treatment programs. Following the meeting, the major civil society networks discussed the goals in on-line forums, and submitted joint recommendations to government, some of which were included in the National Targets for Universal Access, which were announced in 2007.

Ukraine Coalition of HIV-Service Organizations

Civil Society Involvement in National Coordination. The Coalition of HIV-Service Organizations is a network of Ukrainian NGOs and CBOs that are committed to advocating on behalf of those who are most vulnerable to HIV and marginalized from public services.
Prior to 2005, the Governmental Commission on HIV Infection and AIDS Prevention consisted predominantly of government representatives; only one CSO had a seat on the Commission. In 2005, the Coalition seized an opportunity to assist in re-shaping the Governmental Commission and influencing the formation of the National Coordination Council on Counteraction to the Spread of HIV/AIDS (NCC). In a transparent and consultative process, a cross-section of Government and civil society representatives were chosen to make up the NCC: 49 percent from civil society and 51 percent from Government. The aim of the NCC is the coordination of all HIV and AIDS-related activities and policies in government ministries, the executive branch, and throughout Ukraines civil society. PLHIV are actively consulted. The NCC is responsible for drafting the governments AIDS strategy, it functions as the Country Coordinating Mechanism that proposes and implements Global Fund grants, and it functions as the national body working with the World Bank on its HIV/AIDS programmatic loan to the nation.

16 PTAP Impact Report: Community Advocacy for Policy Change

The Coalition and its partners successfully advocated for the inclusion of TB as an equal and important aspect in the response to HIV within the NCCs mandate, through a series of meetings and consultations. The Coalition is continuing advocacy work related to the implementation of this policy.

Advocating for Quality HIV and AIDS Service Standards. One of the challenges in Ukraine has been the provision of HIV-related services for PLHIV. None of these services was systemized in the governments strategy, and the quality of services that were available, varied significantly.
The Coalition of HIV-Service Organizations developed a comprehensive package of social services needed by PLHIV that include medical and non-medical care, and psychological and legal support. These were distributed to government agencies. Following the Coalitions advocacy efforts, the NCC commissioned government agencies to develop standards for social services provided to PLHIV through both public and private sector agencies. Tapping into the expertise of a range of partners, under the umbrella of the Coalition, the NCC published the Standards of Social Services in the Field of Counteraction to HIV/AIDS in Ukraine, which establishes regulatory mechanisms and licensing for all HIV and AIDS social services in the country. Covered in the Standards are the quality of medications allowed, regulation of syringe exchange programs, and pre- and post-HIV testing counseling protocols. Over 1,000 copies of the Standards have been distributed throughout the country.

Civil Society Leadership in Global Fund Grant Development and Implementation. The Coalition of HIV-Service Organizations and the International HIV/AIDS Alliance, are the NGO/CBO representatives to Ukraines Global Fund Country Coordinating Mechanism. The Coalition played a pivotal role in Ukraines successful application for a Global Fund grant in Round 6 (2006) which required a great deal of both qualitative and quantitative data gathering among high risk populations throughout the country. The Coalition ensured that the Global Fund project proposal included work in the most neglected regions of the country, that allocations for prevention and treatment activities would be balanced, and that the project would involve MSM.
When the project was approved, the Coalition was invited to be an implementing partner with three distinct programmatic responsibilities: 1) increasing access to comprehensive prevention services within prisons; 2) strengthening the coordination of HIV and AIDS service provision at the local level; and 3) working with vulnerable youth communities to develop and coordinate national policies. After some difficult first steps, Ukraines Global Fund project is now well organized, and as a result of the Coalition and those involved in PTAP, it is being implemented with broad community-based involvement and support.

PTAP Impact Report: Community Advocacy for Policy Change 17

UKRAINE

An NGO representative observed the better skills and confidence of NGO representatives participating in government forums, Another achievement from the training in the project is that representatives from the NGOs became members of coordination councils at rayon level, oblast level, national level now they are skilled to represent their organizations on these councils.
(Note: a rayon is an administrative district larger than a city, but smaller than an oblast.)

The Coalition role in advocating for HIV prevention for vulnerable groups, including IDU (substitution therapy) and MSM, is also considered important. Substitution therapy with methadone the government has finally approved this. Also, Ministry of Health (MOH) ordered the implementation of substitution therapy for 3000 users. The NGOs The Coalition and the Alliance played an enormous role in this change. Substitution therapy is key to adherence and prevention.

Advocacy for expansion of rapid HIV tests: In 2006 the Coalition, as part of PTAP, in partnership with UNAIDS, World Health Organization (WHO), International HIV/AIDS Alliance, and the Clinton Foundation, organized a workshop on Strategies to Expand HIV Rapid Testing for Scaling Up Towards Universal Access to Prevention, Treatment, Care and Support in Ukraine. At the workshop it was agreed that the use of rapid HIV tests will facilitate prevention scale-up in many settings. These include TB, detoxification and STI clinics; services linked to Preventing Mother-to-Child Transmission (PMTCT) of HIV; penitentiary facilities; and youth, outreach and drop-in centers for key populations such as MSM, sex workers and people who use drugs, along with others. It was agreed during the workshop that an action plan should be developed by the government, highlighting key strategies with clear timelines for the expansion of rapid tests. The Coalition, along with key NGO partners, such as Constella Futures/USAID Project, the Clinton Foundation; International HIV/AIDS Alliance, PATH, WHO and UNAIDS, developed an integrated plan for the expansion of rapid testing. This was subsequently approved by the Ministry of Health as a policy document for implementation.

18 PTAP Impact Report: Community Advocacy for Policy Change

Section 2
Mobilization of Community Advocates by PTAP
PTAP is rooted in the NGO/CBO sector, with a primary aim to galvanize efforts, reduce redundancy and build consensus among like-minded actors. The following are examples of how PTAP partners are mobilizing coalitions and building skills and capacities within their own sector to develop effective community AIDS advocates.

Belize Alliance Against AIDS (AAA)

From Workshop to Coalitions: Building Advocacy Capacity. The techniques and tactics required for successful advocacy have not been exercised in any systematic way throughout Belizes civil society response to HIV and AIDS. In February 2006, PTAP convened a workshop entitled Advocacy for Civil Society Organizations, specifically for representatives of NGOs and CBOs, individual activists/advocates, and nascent advocacy coalitions. The workshop provided basic advocacy skills education, self-identification of existing advocacy skill sets, and shared advocacy plans and strategies and explanations of monitoring and evaluation including development of impact indicators.
Two new advocacy initiatives evolved from the workshop. The first came from an embryonic movement involving a group of young activists who had been trying to organize a response to the increasing discrimination in the media against gay communities and same-sex behaviors. As a result of the advocacy workshop, these young activists formed the United Belize Advocacy Movement (UNIBAM)the first Belizean advocacy organization dedicated to fighting stigma and discrimination. They have taken their fight against discrimination to popular radio talk shows, they have written rebuttals to discriminatory articles published in the mainstream media and they are producing an anti-discrimination documentary film. They advocated for the chairpersons of the National AIDS Commission and the Red Cross to speak out publicly against all discriminatory media coverage, and they demanded participation in the review of the National Health Act, where they argued for inclusion of sexual health interventions specifically for MSM. UNIBAM has also used the information it received from PTAPs stigma and discrimination workshop to add to its larger stigma/discrimination and human rights training, which it is currently conducting mostly for teachers, uniformed populations and the MSM community. The second advocacy initiative resulting from the Advocacy for Civil Society Organizations workshops was the formation of a coalition of existing organizations dedicated to galvanizing their advocacy capacity and activities. However, due to a lack of resources, The HIV/AIDS Anti-Stigma and Discrimination Advocacy Committee has not been able to sustain its membership long enough to enact its advocacy plan.

PTAP Impact Report: Community Advocacy for Policy Change 19

Botswana Botswana Network of AIDS Service Organizations (BONASO)

Tribal Leaders for HIV Prevention. When the Botswana Network of AIDS Services Organizations began work as the PTAP focal point, their baseline study identified community leadership as a critical gap in HIV prevention activities throughout the country. There was limited knowledge among remote and rural communities about HIV transmission and the treatment of AIDS. To bridge this gap, BONASO collaborated with the Gantsi District NGO Coalition and Tribal Administration to engage tribal leaders to become advocates for HIV prevention in the various roles they play. Tribal leaders, known as Chiefs, are regarded as custodians of Tswana Culture in Botswana and command significant respect, and have great power to influence behavior change. But they had not been fully engaged in their communities responses to HIV and AIDS, and BONASO through PTAP set out to change that.
Two workshops were convened for 40 tribal leaders (20 in each session), where the leaders defined their duties and responsibilities within their communities. They were able to identify opportunities stemming from their roles to speak out on HIV prevention. They agreed to discourage stigma and discrimination and help their communities dispel the myths, while learning about the realities of HIV and AIDS.

China (Yunnan Province) Yunnan Daytop Drug Abuse Treatment & Rehabilitation Center(Daytop)

Community-Based Positive Prevention Advocacy. Positive Prevention was identified as one of the key entry points for scaling up prevention efforts within China. This is a relatively new concept for community-based HIV and AIDS programs in Yunnan Province where PTAP is working. A series of workshops to promote Positive Prevention were conducted in 2006 and 2007 for representatives of local NGOs/CBOs, CDCs, HIV-designated hospitals, and the media. Among the participants, many were PLHIV.
Trainers for the workshop received extensive training from INP+ (the PTAP partner in India) at a two-day seminar. Resources for the workshop were also developed in consultation with INP+, which has significant expertise in this area. Based on proceedings of this workshop, a Positive Prevention Trainers Manual is in development in collaboration with AIDS Care China, a grassroots community organization covering four provinces in China. The manual reflects the Chinese context, with a focus on the challenges faced by local trainers in introducing this new concept at the community level. A draft was distributed to all participants at the workshop who have contributed valuable suggestions. The Positive Prevention concept has been adopted by AIDS Care China, one of the largest grassroots PLHIV community organizations in the country covering Yunnan and three other provinces in China. The ACC Director attended the workshop as both a participant and facilitator and ACC has since agreed to incorporate Positive Prevention into its existing treatment education. Many of the CBOs in the PTAP network also showed great interest in adopting Positive Prevention in their training or counseling programs.

20 PTAP Impact Report: Community Advocacy for Policy Change

Perhaps the most important outcome from this workshop was the development of ten follow-up Positive Prevention training programs in three sites throughout Yunnan. All of the proposed plans are jointly developed and will be implemented by NGOs/CBOs, CDCs and hospitals.

India (Tamil Nadu State) Indian Network of People Living with HIV/AIDS (INP+)

Organizing to Fight Stigma and Discrimination in Tamil Nadu. Early in the development of PTAP in India, stigma and discrimination were identified as key obstacles in both prevention and treatment interventions throughout the country. Efforts to address such discrimination through legislation and legal enforcement had been stymied, because incidences of HIV-based stigma and discrimination had not been documented in any systematic or comprehensive way.
In 2006 and 2007, PTAP convened a series of workshops addressing issues of stigma and discrimination, which particularly highlighted issues of PLHIV and other marginalized populations such as MSM, sex workers and Aravanis (transgender women). This ultimately resulted in the formation of a Positive Action Movement (PAM), which is a coalition of representatives from NGOs/CBOs working with key populations in Tamil Nadu to monitor and document HIV-related human rights violations. Members of the PAM who represent key populations came together to intercede whenever and wherever an incident of stigma and discrimination came to their attention. The PAM mobilized on two notable occasions: first at the Kasturba Gandhi Hospital in Chennai, where a woman living with HIV facing an emergency situation was mistreated: and secondly, in Thiruvarur where an HIV/AIDS outreach worker was severely beaten by neighbors who objected to the presence of a person living with HIV and his family in the community. Both cases were documented in great detail for use in advocacy initiatives. The PAM is one of the most successful outcomes of PTAP in India. In addition to email updates and information sharing, the PAM meets once a month to share experiences, stories, and strategies. To date, eight PLHIV and four advocates from marginalized communities have agreed to be PAM spokespersons. They meet with their communities to deliver HIV prevention messages, informing them of their rights, as well as to advocate for the dignified care of PLHIV. The PAM is also partnering with the Tamil Nadu State AIDS Control Society in the sensitization of senior police officers on preventing HIV-related stigma and discrimination. Recently, the PAM was re-named the Joint Action Committee (JAC) and is spearheading advocacy on the proposed HIV/AIDS Bill as critical towards reducing stigma and discrimination.

Prevention Technologies for Communities. As the world invests more and more in prevention technologies, community-based advocates struggle to stay abreast of their development. It is vital that these front-line groups know of new technologies available and receive updates on the progress underway in the research and development of future technologies.

PTAP Impact Report: Community Advocacy for Policy Change 21

An information and training workshop in Tamil Nadu convened by PTAP was an opportunity to introduce local networks, CBOs and NGOs to new developments in HIV prevention technologies. Participants learned about progress on developing vaccines and microbicides, new data on the efficacy of male circumcision, how to access and use the female condom, the importance of water-based lubricants, and the prevention of mother-to-child transmission. This knowledge-sharing has contributed to building a common prevention advocacy agenda amongst civil society stakeholders, which they will draw on to call on national policy-makers to expand access to viable new technologies for Indias most vulnerable and marginalized communities. As a result of these trainings, the state forum for women living with HIV in Tamil Nadu in collaboration with the Hindustan Latex Family Planning Promotion trust (HLFPPT) has begun to promote female condoms among its network members.

Jamaica Jamaica AIDS Support (JAS)

Mobilizing Communities around Microbicides. The development of female-controlled microbicides holds great promise for preventing new infections in women and girls. As clinical trials on candidate microbicides expand throughout the world, it is essential that the end-users (i.e. the women and girls) fully understand what microbicides are, why they are being developed, what the clinical trials are intended to prove and how they should be run responsibly. It is also important for the researchers and developers working on microbicides to hear from the women and girls who will use them, as their input on formulation, packaging, and accessibility is invaluable in ensuring the greatest possible use of microbicides.
PTAP Jamaica formed one of the few Microbicides Working Groups in the Caribbean, to provide a forum for discussion and information dissemination about the introduction of microbicides in the region. The Working Group consists of PLHIV, at-risk women, AIDS service organizations and microbicides researchers. An initial two-day workshop was convened to discuss various aspects of the introduction of microbicides including the relationship between microbicides and womens social status, the importance of science and research dedicated to improving the health of women, and the relationship of barrier methods to reducing overall STI rates among women. Although the Working Group has had some difficulty in sustaining itself due to logistical and financial obstacles, its members continue to attest to its vital role in Jamaicas communitybased response to the HIV/AIDS epidemic.

22 PTAP Impact Report: Community Advocacy for Policy Change

Kenya Kenya AIDS NGO Consortium (KANCO)

Teaching the Teachers: HIV and AIDS education is perhaps the most effective social vaccine to preventing HIV from spreading. In Kenya, the topic of HIV has been integrated into all existing primary and secondary state curriculums. AIDS education in Kenya is based on a life skills approach, which focuses on relationship issues and how HIV prevention and transmission fit into students socialization. The science of HIV transmission is also addressed in the curriculum.
A recent survey carried out by the Kenya National Union of Teachers (KNUT) showed that teachers are not sufficiently prepared or informed to teach about HIV and AIDS in public schools. Although students are eager to learn about HIV and AIDS, teachers are ill-equipped to addressing the difficult issues surrounding HIV and AIDS according to the study. The study also showed that HIV positive teachers in Kenya have reported discrimination by school administrators and other members of staff; also that HIV positive teachers are less likely to get promoted, with many claiming that they do not feel secure in their jobs. To address the knowledge gaps and the endemic stigma and discrimination in Kenyas schools, KANCO, through PTAP, designed a comprehensive school-based HIV prevention program for peer educators. A select group of teachers from ten schools were trained in peer education and drafted actionable work plans to help establish peer clubs in their respective schools. To increase levels of ownership and government support, KANCO worked closely with KNUT, the Ministry of Education, and the Teachers Service Commission, to allow selected schools to integrate a peer education program into the regular HIV curriculum. The program was diversified to target not only students and teachers, but also administration and workers. The Kenya Network of HIV Positive Teachers helped facilitate the stigma and discrimination sessions. The Kenya Institute of Education, the body mandated to develop and review schools curricula, approved the new peer education curriculum. The early results from the new curriculum are impressive: it has been adopted by at least five other schools; peer education on HIV has expanded to include income generating activities; government at all levels are supporting and promoting it; and it has reached marginalized students from informal schools and schools for disabled.

Russia Russian Harm Reduction Network (RHRN)

Mobilizing the PLHIV community: In 2005, the national PLHIV community in Russia, with only a few groups scattered throughout the country, was not well organized. In order to better organize PLHIV organizations and to enable them to identify and advocate better for their needs, PTAP was used by NGOs to help convene a series of regional forums during 2005 and 2006.
Five regional forums were convened to build and galvanize advocacy networks of PLHIV who are willing and able to address the stigma and discrimination they and their peers experience in their communities.

PTAP Impact Report: Community Advocacy for Policy Change 23

City-level groups and independent activist coalitions were invited to each regional forum to pool their resources, build consensus and establish both regional and national links with other like-minded advocacy groups. Most forums ended with the decision to formalize their regional networks and elect representatives to the Board of the All-Russian Association of PLHIV. The regional forums proved to be valuable opportunities to raise community concerns about the obstacles PLHIV encountered in their efforts to access treatment programs and conduct prevention advocacy. Cross regional consensus was that the obstacles were direct results of HIV-based stigma and discrimination emanating from the broadly held bias within Russian society that injecting drug users (who comprise the vast majority of Russias PLHIV) were not deserving of medical and psychological care. The national network of PLHIV that was created by these forums through PTAP, is considered a major step forward in advocating for strategies to combat HIV-based stigma and discrimination in Russia.

Ukraine Coalition of HIV-Service Organizations

HIV Prevention and Rights for Prisoners. In November 2007, in Ivano-Frankivsk (Western Ukraine), a three-day advocacy meeting was organized to mobilize key NGOs working with prison populations on Rights and HIV Prevention in Prisons. Participants shared experiences and observations about the need to advocate for HIV prevention services throughout the penitentiary system, as well as the need for human rights monitoring among prison populations and among released prisoners. Former prisoners used the chance to share their experience on human rights violations in prisons, particularly regarding access to HIV prevention (condoms) and treatment services, and the stigma and discrimination they have experienced after their release. Plans were developed to organize advocacy training based on the experiences of well-developed organizations with further mentoring, and strategic planning for constituencies of Former Prisoners Association.

24 PTAP Impact Report: Community Advocacy for Policy Change

Section 3
Opportunities for PTAP to Inform Policy
Through the implementation of PTAP, partners have identified numerous advocacy issues that need urgent attention from the HIV community to ensure success of prevention programs and broader responses to AIDS. These include issues such as Positive Prevention, stigma and discrimination of PLHIV and marginalized communities, gender and human rights mainstreaming, harm reduction, and HIV testing and counseling. The following is a synopsis of specific policy opportunities emerging from each of the ten PTAP countries:

Belize
The Documentation Study of PTAP in Belize identified 36 detailed opportunities for further policy analysis and advocacy initiatives that will easily fit within PTAP parameters. At the top of the list are the development of a mechanism to document and report discrimination and human rights violations, and the strengthening of the new HIV, AIDS, Anti-Stigma and Discrimination Advocacy Committee with leadership and organizational skills, as well as a funding source of its own.

Botswana
PTAP can continue to be used in the work with leadership to inform policies at various local and regional forums, such as the Millennium Development Goals Technical Working Group meetings, the PEPFAR 2008 Implementers Meeting, Womens Affairs Department, and the Global Fund Southern Africa Regional Meeting.

China
PTAP is recognized by the Yunnan Government and the provincial Center for Disease Control and Prevention (CDC), which is crucial for civil society advocacy in China. The government has collaborated in organizing PTAP activities and has responded positively to some of the outcomes from the project. The project will continue to strengthen its institutional collaborations with the Government of China. Given the gains in Yunnan province and its ground breaking work on VCT and Positive Prevention in that country, PTAP has an opportunity to be expanded to other regions of China beyond Yunnan Province.

India
There are particular opportunities for PTAP partners to inform key policy areas in relation to stigma and discrimination of key population groups. This includes advocacy for the removal of Section 377 of the Indian Penal Code (which criminalizes homosexuality) and amending the

PTAP Impact Report: Community Advocacy for Policy Change 25

Immoral Trafficking Prevention Act, which undermines safer sex practices, while obstructing targeted interventions, because it criminalizes brothels. In addition, there is scope for INP+ to further build and expand its work on positive prevention and expand to other states in India beyond Tamil Nadu. With more human and financial resources, strengthened mobilization of advocates for HIV policy change, as well as national policy change, is possible.

Jamaica
The PTAP partnership in Jamaica has identified the need for public leadership to bring credibility and security to NGO-led HIV prevention activities in Jamaicas stigmatizing environment. Politicians and celebrities should be involved in raising awareness of HIV prevention, reduction of stigma and discrimination, and the particular challenges confronting Jamaicas vulnerable and marginalized populations.

Kenya
NGOs and CBOs in Kenya need technical support in identifying locations in which stigma and discrimination are prevalent, to enable the development of appropriate interventions. Some of these identified by KANCO and partners include VCT sites, health facilities and providers, education institutions, middle level informal employment sector, and credit and insurance industries. The project also needs to undertake stronger advocacy against stigma and discrimination affecting marginalized populations, particularly MSM. In the Kenyan context, these groups depend heavily on civil society to speak on their behalf and highlight their issues as well advocate for their inclusion in HIV and AIDS mitigation efforts.

Nigeria
NEPWHAN has secured strong support for PTAP activities from the national government through NACA, the Federal Ministry of Justice, the Ministry of Health and the National AIDS and STD Control Programme (NASCP). PTAP is also represented on the NACA National Prevention Technical Working Group, separately from NEPWHAN. These relationships need to be sustained, expanded and deepened along with PTAPs aim to facilitate and inform advocacy work. Positive prevention, stigma and discrimination from a gender perspective, the perspective of PLHIV, and marginalized communities, are areas that should be urgently addressed in the future.

Russia
The PTAP partnership in Russia continues to work to find its common policy advocacy objectives and tactics. PTAPs role in the vast network of Russian NGOs working on various aspects of HIV and AIDS is still being defined and the projects infrastructure struggles to be stabilized. Meanwhile, the unmet needs of those most vulnerable to HIV in Russia remain clear: harm reduction for people who inject drugs; prevention counseling and services for PLHIV, MSM and sex workers, and; a concerted effort to raise the level of urgency for action by the national government.

26 PTAP Impact Report: Community Advocacy for Policy Change

Rwanda
The advocacy agenda developed within PTAP requires that the government reinforce measures of preventing HIV transmission; ensuring that the national response to HIV and AIDS is adapted to Rwandas evolving socio-economic and health conditions by using surveillance and research results; improving HIV and AIDS-related treatment for PLHIV; and coordinating the multi-sector response to increasing cost-effectiveness of interventions. PTAP should build on its policy advocacy work to date to realize this vast agenda.

Ukraine
There are future opportunities for PTAP partners to influence Ukraines Global Fund proposals and project implementation. With available funding, they will ensure that MSM, people who inject drugs (IDU), sex workers and other routinely marginalized populations will have a voice in how Ukraines Global Fund grant money is programmed and allocated.

PTAP Impact Report: Community Advocacy for Policy Change 27

Section 4
Conclusions and Next Steps

The ten country reports show that the three-tiered PTAP model works: by using an established national NGO, with technical support from the International and Regional Secretariats, as an implementing partner that mobilizes other NGOs around prevention scale-up alongside treatment. Although the country impact reports range in terms of comprehensiveness and quality, they have in common; that for PTAP to attain its goals, the project requires more human and financial resources on the ground. Much progress has been made to integrate the project into existing organizations work plans, and redundancy of efforts and capital investments is decreasing. Still, operationalizing PTAP to its fullest and documenting project activities comprehensively (including valid monitoring and evaluation) will require significantly higher financial and human resource investments. Significant investments have been made in PTAP partners, and strategies need to be developed to ensure sustainability of actions and issues emerging from the project. This will be necessary for a long-term scaling up of prevention efforts within PTAP countries. Furthermore, the PTAP model and lessons learned provide valuable information that lends itself to being replicated by civil society in other countries. Community mobilization and advocacy are powerful tools for bringing about policy and programming shifts and should be used as strategies for engaging in efforts to improve the AIDS response globally.

28 PTAP Impact Report: Community Advocacy for Policy Change

Abbreviations
AIDS ART ARV CBO CCE CDC CSO GIPA HIV KNASP KNUT MSM MTCT NACA Immuno Deficiency Syndrome Anti Retroviral Therapy Anti Retro Viral Community Based Organizations Constituency Coordinating Entities Center for Disease Control Civil Society Organization Greater Involvement of People Living with HIV/AIDS Human Immunodeficiency Virus Kenya National HIV/AIDS Strategic Plan Kenya National Union of Teachers Men who have Sex with Men Mother to Child Transmission National Agency for the Control of AIDS (Nigeria) NACO NACP NACC National AIDS Control Council National AIDS Control Organization (India) National AIDS Control Program

NASCOP National AIDS and Sexually Transmitted Infection Control Program NGO PAC PAM PLHIV PSB PTAP STI STD VCT Non Government Organization Project Advisory Committee Positive Action Movement People Living with HIV Public Security Bureau Prevention Treatment Advocacy Project Sexually Transmitted Infection Sexually Transmitted Disease Voluntary Counseling and Testing

Latin American and the Caribbean Council of AIDS Service Organizations

LACCASO

Sumita Banerjee
Senior Program Manager ICASO - International Secretariat

Joe Mahase
Director of Programs ICASO - International Secretariat

65 Wellesley Street E., Suite 403 Toronto, Ontario, Canada, M4Y 1G7 Tel: +1 416 921 0018 Fax: +1 416 921 9979 Email: sumitab@icaso.org

65 Wellesley Street E., Suite 403 Toronto, Ontario, Canada, M4Y 1G7 Tel: +1 416 921 0018 Fax: +1 416 921 9979 Email: joem@icaso.org

PTAP Impact Report: Community Advocacy for Policy Change 4

In 2005, International Council of AIDS Service Organizations (ICASO) began its implementation of a global five-year community mobilization and advocacy project in ten countries: Belize, Botswana, China, India, Jamaica, Kenya, Nigeria, Russia, Rwanda and Ukraine. This project, the Community-Based Advocacy and Networking to Scale-Up HIV Prevention in an Era of Expanded Treatment, is better known as the Prevention and Treatment Advocacy Project (PTAP). In 2007, ICASO undertook a study to document the country-level achievements and challenges of PTAP. This impact review has demonstrated how PTAPs structure, based on national focal point organizations working with local community networks and supported by regional and global organizations, has built a strong mechanism for effective national community sector advocacy on AIDS.

ICASO International Council of AIDS Service Organizations

International Secretariat 65 Wellesley Street E., Suite 403 Toronto, Ontario, Canada M4Y 1G7 t: +1 416 921 0018 f: +1 416 921 9979 icaso@icaso.org www.icaso.org

2008 International Council of AIDS Service Organizations (ICASO)