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Enhancing community empowerment: outcomes of a five-year community-led

advocacy project in Tamil Nadu, India

Murali Shunmugam¹, Abraham K Kurian ¹,

Xia Donghua Jenny 2

1Indian Network for People Living with HIV/AIDS (INP+), Chennai, India2Asia Pacific Council of AIDS Service Organizations (APCASO), Kuala Lumpur, Malaysia

Email: murali@inpplus.net

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1. ISSUE

• In India, limited support is available to enhance the policy analysis and advocacy capacity of People Living with HIV (PLHIV) networks and other marginalized communities such as Sex Workers, Men who have Sex with Men (MSM),Transwomen & Drug Users.

• In addition to the routine HIV prevention, care/ support and treatment services capacities of the community groups need to be strengthened to effectively advocate for bringing out desired changes in policies/programs.

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2. Description

Indian Network for People living with HIV/AIDS (INP+), a national network for people living with HIV/AIDS with support from Asia Pacific Council of AIDS Service Organizations implemented a five-year (2005-09) project titled Prevention and Treatment Advocacy Project (PTAP in Short) in Tamil Nadu to enhance the advocacy capacity of PLHIV and marginalized communities.

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3. Focus

PTAP focused on community system strengthening (CSS) with the following strategy:

Enhancing the policy analysis and advocacy capacity of PLHIV networks and community-based organizations working among marginalized communities in Tamil Nadu so as to contribute meaningfully for improved access to HIV-related health services.

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Fig 1. PTAP in Tamil Nadu, India

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Focus areas

Capacity Building - Policy/Program Analysis - National/State HIV/AIDS policy documents

- Advocacy- Stigma & Discrimination- New HIV Prevention Technologies

Community-led Advocacy- Develop/supported the implementation of community-specific advocacy action items

prepared by PLHIV networks and CBOs working withmarginalized communities

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Networking and Linkages

- Strengthening partnerships between various key stakeholders

- Establishment of local/regional/national

and International forums/coalitions

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4. Achievements

Emergence of concrete results in the following areas:

• Capacity building leading to strengthened civil society responses in bringing policy or programmatic changes

• Positive Prevention • Community-led advocacy to improve access to and

quality of services• Reducing stigma and discrimination through

community-led advocacy for supportive legal policies • Creating evidence-informed policies & programs• Promotion of new HIV-prevention technologies

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4.1 Capacity building Policy analysis and advocacy capacity building workshops

organized through PTAP has provided opportunities for PLHIV networks and other marginalized groups in Tamil Nadu to critically analyze the existing service delivery gaps and to devise follow-up advocacy action plan

PLHIV networks succeeded advocating with National AIDS Control Organization (NACO) & State AIDS Control Society (SACS) for supporting Drop-in centers (DICs) in 19 districts in Tamil Nadu.

DIC acts as the point from which all prevention and treatment efforts are coordinated. The overall budget for a DIC/year is Rs. 5,50,000 (USD: 12222 if 1 USD = 45 INR).

DICs will not only provide opportunities for PLHIV networks to offer better prevention, care and support services for PLHIV but will also strengthen the management capacities of CBOs.

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4.2 Positive Prevention

INP+ succeeded advocating with National AIDS Control Organization for the incorporation of Positive Prevention programs into the National HIV/AIDS policy document.

In 2005, PTAP supported INP+ in organizing a national consultation meeting on Positive Prevention. The recommendations from the consultation meeting were used to influence policy makers – Positive Prevention was formally introduced into the National AIDS Control and Prevention Program Phase III (NACP-III).

Year 2009/2010

- Positive Prevention IEC posters in Telugu, Bengali & Hindi- National consultation on Positive Prevention - Developing program implementation plan- Roll-out of Positive Prevention programs through PLHIV networks in India

Year 2008

- Incorporation of Positive Prevention program into the State HIV/AIDS Project Implementation program implementation plan by Tamil Nadu State AIDS Control Society- Positive Prevention IEC posters in English & Tamil

Year 2007

- ToT workshop on Positive Prevention for PLHIV networks - Positive Prevention PLHIV resource manual in Tamil - Inclusion of Positive Prevention into INP+ national strategic objectives

Year 2006

- Research Study: Understanding the sexual and reproductivehealth needs and rights of PLHIIV in India- Positive Prevention PLHIV resource manual in English- Regional workshop on Positive Prevention for PLHIV network leaders

Year 2005

- Poster campaign on Positive Prevention within PLHIV networks- National Consultation on Positive Prevention - Recommendations were presented to National AIDS Control Organization- Incorporation of Positive Prevention component into the National HIV/AIDS policy Document (NACP –III)

INP+ & Positive Prevention

Year 2004- Discussion among INP+ board members on 'Prevention among PLHIV’ - Inclusion of Positive Prevention into the National advocacy strategy of INP+ - National consultation on HIV-positive MSM - Explored prevention needs of HIV-poistive MSM

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4.3 Reducing stigma and discrimination through community-led advocacy for supportive legal policies

HIV/AIDS Bill ‘Anti-discrimination Bill’

– India is one among the few countries in Asia Pacific that has drafted an anti-discrimination law

– This Bill that was drafted in 2007 by NACO, with technical support from Lawyers Collective HIV/AIDS Unit, is yet to become a law.

– In a National Consultation on HIV/AIDS Bill (May 2008) civil society organizations in India have come together and formed the National coalition in support of HIV/AIDS Bill to make the long pending bill an Act.

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• Concerted advocacy by the national/state coalition has quickened the process of introducing the Bill in the Indian Parliament.

• The Bill which was pending with the Indian Law Minister was finally cleared and the same is scheduled to be tabled in the Indian Parliament.

PTAP has supported the formation/strengthening of the various advocacy activities of the National/State Coalition for HIV/AIDS Bill.

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In

Action

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Community Advocates as a catalyst for change

– Through PTAP we have identified and build the leadership capacities of individuals as community advocates – Community empowerment. Taking responsibility for tackling their own problems .

– PTAP has supported individuals and organizations to implement the advocacy action items

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4.4 Creating evidence-informed policies and programs

Through PTAP we attempted to create evidence-informed polices and programs

PTAP research study and policy review documents have provided base for policy makers for designing evidence informed programs in Tamil Nadu

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4.5 New HIV Prevention Technologies

• One of the core indicators of PTAP is promoting community participation in the development of new prevention technologies.

• Through PTAP, we have trained a pool of female condom (FC) community advocates (women living with HIV) in Tamil Nadu - to make them well-informed about the various new approaches/technologies to HIV prevention and also to help them in introducing and advocating for new HIV prevention technologies in their projects.

• As a result of these trainings & advocacy efforts of Tamil Nadu Networking People Living with HIV/AIDS (TNNP+) today for the first time in the state of Tamil Nadu social marketing of female condom was done among women living with HIV.

• FC community advocates have trained more than 300 PLHIV on FC.

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5. Lessons learned Foster collaborations and solidarity among diverse community

groups to achieve common goals

Several challenges were faced in bringing together diverse subgroups of infected and affected communities since there was a mutual distrust among these communities.

PTAP helped in creating a neutral platform for bringing these diverse communities and fostered understanding of one another. Consequently, the combined advocacy actions (example, HIV/AIDS bill) resulted in successful outcomes which would not have been achieved if they did not come together.

Thus, the communities came to understand the importance of working together in solidarity to achieve the common goals – which will be beneficial to all.

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Build advocacy capacity and Support advocacy activities of marginalized communities

PTAP filled that important gap by building the advocacy capacity of PLHIV networks and marginalized communities in understanding how they can effectively advocate with the policymakers – which resulted in successful outcomes (such as getting support for drop-in centres for PLHIV in all the 30 districts in Tamil Nadu).

Thus, when provided the much needed support for advocacy activities, significant contribution towards improving state and national responses to HIV can be made.

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Focus on structural level factors and address the articulated needs of the marginalized communities

In India, HIV prevention programs predominantly focus on behaviour change at individual level. This individual-level approach overlooks both the need for creating an enabling environment (that is, supportive policy environment) for fostering and sustaining healthy behaviours as well as the broader needs and rights of marginalized communities.

For HIV prevention programs to succeed, a holistic approach towards improving the health and rights of PLHIV and marginalized communities is crucial.

PTAP attempted to fill in this important gap by supporting advocacy activities towards creating enabling environment (example, support for HIV/AIDS bill; supporting the implementation of S & D reduction advocacy action items).

We recommend that the government and other donors recognise the importance on focusing on creating enabling environment and to address the articulated and felt needs of the communities, and not just to focus only on HIV-related activities.

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6. Next steps

Through various forums, INP+ plans to widely disseminate the lessons learnt from this project emphasizing the importance of building the advocacy capacity of infected and affected communities in enhancing the responses to HIV epidemic.

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Thanks