This is an invited presentation made in the HIV & Law ALA Fellow Program held at NCHSR, UNSW, organized by Shingua Univeristy & UNSW (Sponsored by AusAID, Govt. of Australia)

1. 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

2. 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 NGO's working on HIV/AIDS in India = 104 (26th Apr 2008).
 NACO Data: 104 Organizations (1998). No updated data available

3. Key Prominent Organizations
 Bangalore: ASHA Foundation Chair: Dr. Glory Alexander
<alex@serc.iisc.ernet.in>. Free clinic and school education.
 Chennai(Madras): MEDIA Foundation Chair: Dr. Jaya Shreedhar
<jrajan@md2.vsnl.net.in>. Care and prevention of HIV in India.
 Delhi: NAZ foundation Trust Chair: Ms. Angali Gopalan
<anjali@naz.unv.ernet.in>. 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 <humsafar@vsnl.com>.
Research, prevention and counselling of LGBTI Community.

4. 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

5. 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 .

6. 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.

7. 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).

8. 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).

9. 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.

10. 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!!!

11. 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.

12. 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

13. Thank You!