The Civil Society Participation & HIV/AIDS in India: Present Condition and Perspectives for Future Maheswar Satpathy AusAID’s Australian Leadership Awards Scholar National Centre in HIV Social Research (NCHSR) The University of New South Wales
Key Figures & Facts India is one of the most populated countries in the world (1.3 billions). It is estimated that around 2.3 million people are currently living with HIV. In a country where illiteracy, poverty and poor health are rife, the spread of HIV presents a daunting challenge. HIV/AIDS is a major concern for developing countries global. Lack of education, poor nutrition and inadequate health care, linked with great poverty, make people in the poorest countries most vulnerable to HIV/AIDS. The HIV/AIDS pandemic is growing quickly every year, resulting in NGOs working across a wide range of issues continuously having to contend with an ever-increasing number of people in need of their assistance. Heterosexual route is the predominant mode of transmission, followed by injecting drug use(UNAIDS/UNICEF/WHO , December, 2006). No. Of NGOs working on HIV/AIDS in India = 104 (26th Apr 2008). NACO Data: 104 Organizations (1998). No updated data available
Key Prominent Organizations Bangalore: ASHA Foundation Chair: Dr. Glory Alexander <firstname.lastname@example.org>. Free clinic and school education. Chennai(Madras): MEDIA Foundation Chair: Dr. Jaya Shreedhar <email@example.com>. Care and prevention of HIV in India. Delhi: NAZ foundation Trust Chair: Ms. Angali Gopalan <firstname.lastname@example.org>. Care and prevention of HIV in India. Lucknow/US: Naz Foundation International (NFI) India-LGBTI Empowerment & Sexual/holistic health Mumbai: Humsafar Trust Mr. Ashok Row Kavi <email@example.com>. Research, prevention and counselling of LGBTI Community.
Key Prominent Organizations Bihar region: Regional AIDS Training Network and Center in India (RATNEI) Contact: Dr. Mohan Saha and Vanessa Melamede <Venessa Melamede>.RATNEI is a project of The International Health Organization, Boston USA. RATNEI brings together the most distinguished AIDS experts from leading U.S. and Indian institutions and agencies to train several thousand health sector personnel in India and other South Asian countries on HIV/AIDS, with a special focus upon eastern and north-eastern states of India. It is based in Patna, India. SAATHI (Hyderabad, Chennai, Kolkata): A major Civil society Organization operating in most parts of India. Lakhshya Trust, Pune & Mumbai: a major HIV-AIDS Organization. Social Activities Integration (SAI), Mumbai
Key Prominent Organizations AIDS Prevention and Control Project A collaboration between Chennai Voluntary Health Services, USAID, and the Indian Government, this organization works to reduce the sexual transmission of HIV, build capacity of NGOs involved in AIDS prevention activities, increase access to condoms and quality STD care services, and build political support for AIDS prevention and care programs. Freedom Foundation Organization opened the first rehabilitation Centre for HIV in India, which has since been used as a model. Heroes Project Partners with media organizations to create ad campaigns that educate the public about HIV and combat stigma. India Network of People Living with HIV/AIDS (INP+) : INP+ aims to improve the quality of life for people living with HIV/AIDS in India .
Key Prominent Organizations Interventions for Sexual Health Project :Sponsored by the Indian Medical Association, Munnar Branch. Lawyers Collective HIV/AIDS Unit: Provides free legal services to persons living with or affected by HIV/AIDS and conducts policy research on legal and human rights issues related to HIV/AIDS. Positive Women Network: Provides counselling, advocacy, and support for women living with HIV and their families. SAATHI: A nongovernmental organization that carries out information dissemination, advocacy, networking, research, capacity building, care, support and treatment services. Tamil Nadu State AIDS Control Society Implements HIV/AIDS prevention and control activities in the state of Tamil Nadu.
Key Prominent Organizations Thoughtshop Foundation: Organization provides counselling services and develops multi-media HIV/AIDS prevention materials. West Bengal Voluntary Health Association In collaboration with local NGOs and the national government, this organization provides support services for community health programs throughout West Bengal. Site offers directory of affiliated NGOs and their respective projects. Y.R. Gaitonde Centre for AIDS Research and Education (YRG CARE) Organization supports HIV/AIDS education, research, and training, while also providing non-coercive, non-stigmatized counselling and testing. INFOSEM - The India Network For Sexual Minorities is a collective national effort by sexual minorities to ensure equality for themselves in all spheres of life, free from discrimination. IPACHA (Indian Peoples Alliance for Combating HIV and AIDS).
Major Concerns of NGOs Coordinating between key state and regional players i.e. Community-based Organizations (CBOs). The task of accessing and allocating funds to small CBOs, and managing and overseeing the activities by providing broader guidelines regarding practice. Identification of glitches at several levels (communication, information, implementation, tracking of resources, users and cost-benefit analysis, deficit and failure analysis, etc.) Optimal Information, Education and Communication including social mobilization through Non-Governmental Organisations (NGOs) as a prevention effort (NACO, 2006). Development of an enabling legal environment which respects and protects the fundamental and human rights of those worst affected (NHRC, 2005). Intensifying Prevention Efforts (sorting out strategies for reaching the maximum, providing care when required, and targeting mass in an engaging fashion).
Challenges for Indian NGOs To provide easy & quick access to the ART to all segments of the population in a vast country. To use Operational Management strategies for drug distribution, fund allocation, and tracking, and efficient resource planning. To alleviate the stigma and discrimination associated with the HIV-AIDS and the sexual practices among the minorities. Create awareness among the large mass in rural and small-towns (illiteracy is a threat). Create well-trained qualified peer mentors, youth workers, Anganwadi workers, social workers. Get to build rapport with the sexual minorities and to involve them to conduct surveys, get support for the prevention and intervention works. Sensitize the stakeholders like Police, Hospital staff, and other Governmental personnel to become more aware and responsive to the needs of the PWLHAS.
Challenges for Indian NGOs Registration and Director of all NGOs, CBOs & SSGs. Clearly it has failed. Issues on the inflow and interaction of the iNGOs. Money Matters! Obtaining and Effective utilization of the Global Fund No clear cut allocation of funds to any issue(s). Lack of proper implementation of the intervention programs. Lack of monitoring, Follow-up and control of the ART and other intervention programs in different parts of India. How to come out with better Intervention manuals, and Training for Trainers (especially the young not so highly educated people). CBOs are the worst hit organizations being a puppets in the hands of bigger, influential NGOs. All Money gone, but nothing came out!!!
Towards Building more sustainable Practices Making more successful collaborations bw. All stakeholders of the society. Targeting the youth at risk via Peer education networks and involving youth in awareness program. Requirement of a shift of the focus on the rural and Small towns than just metropolis. Collaboration with the Academic institutions of India to conduct applied researches to contribute to the policy. Interaction and exchange bw. Governmental and Non-Governmental Agencies. Give Opportunity for small-scale CBOs to serve their community than trying to breed big NGOs. Fund allocation by a competitive procedure than by networking and approach. Governmental agencies to encourage NGOs & CBOs to conduct more intervention-focused researches and impact assessment studies than just epidemiological studies. Proper Implementation of link-worker scheme in rural areas of high risk.
References UNAIDS/UNICEF/WHO (December, 2006): Epidemiological Fact Sheets on HIV/AIDS and Sexually Transmitted Infections. NACO National Aids Prevention and Control Policy Document (2005). National human Rights Commission Document (2005). NACO (1998). List of NGOs working on HIV/AIDS. International HIV/AIDS Alliance: http://aidsallianceindia.net/?q=node/24&cid=1 WHO India : www.whoindia.org. UK Consortium on AIDS & International Development(Dec, 2003). Working Positively: A guide for NGOs managing HIV/AIDS in the workforce. Private NGO websites