CULTURE, COMMUNITY NETWORKS, AND HIV/AIDS OUTREACH OPPORTUNITIES IN A SOUTH INDIAN SIDDHA ORGANIZATION

1. CULTURE, COMMUNITY NETWORKS, AND HIV/AIDS OUTREACH OPPORTUNITIES IN A SOUTH INDIAN SIDDHA ORGANIZATION Kaylan Baban, Scott Ikeda, Deeangelee Pooran, Nils Hennig MD/PhD, Debbie Indyk PhD, George Carter, Henry Sacks MD/PhD Thomas C. Chalmers Clinical Trials Unit, Mount Sinai School of Medicine, New York, NY 10029 Foundation for Integrative AIDS Research, New York, NY 11217 & Gandeepam Siddha Hospital and Research Center, Tamil Nadu, India. Methods HIV/AIDS Outreach Practices Background • HIV/AIDS education is conducted almost entirely separately from Gandeepam’s established community groups, and appears to fall solely to clinic personnel. • Gandeepam’s official prevention and treatment messages discourage the use of both condoms and allopathic medicines, and promote their herbal treatment as a cure. According to Siddha tradition, sexual intercourse decreases the body’s ability to fight infection; therefore, patients are encouraged to practice abstinence, for therapeutic purposes, while undergoing treatment. • Since adherent patients should be abstinent during treatment and cured after treatment, Gandeepam clinic staff do not counsel on ways to avoid transmission of HIV to others. An herbal oil to prevent HIV transmission has been made at Gandeepam, but is not in use. • The survey of Gandeepam’s partner organizations (members of the GGF) yielded widely varied approaches to HIV/AIDS education and prevention, and no discernible coordination with treatment. • Like Gandeepam, most GGF NGOs neither provide, promote, nor believe in condoms to prevent HIV transmission. • Most GGF NGOs are reluctant to discuss sexual health issues with men or single women. Thus, those that do promote condoms usually target married women. • A small minority of GGF organizations does provide condoms to sex workers. • The gap that keeps HIV/AIDS treatment discrete from education and prevention is a global phenomenon, acknowledged as a major challenge to controlling the spread of HIV/AIDS. • This study focuses on the work of Gandeepam, a non-governmental organization (NGO) in the poor rural region of the south Indian state of Tamil Nadu. Gandeepam practices an affordable traditional healing system known as Siddha medicine. The priority of their three clinics is the curative treatment of HIV/AIDS. In a country with one of the most rapidly increasing rates of HIV infection, the small state of Tamil Nadu contains close to 50% of India’s cases. • Gandeepam is a strong and well-recognized presence in the community. A large portion of Gandeepam’s time and staff are dedicated to education and empowerment programs. Gandeepam’s non-medical efforts have five primary foci, organized into the following Community-Based Organizations: Child Labor Project, Farmers’ Group, Kitchen Herbal Garden Project, Sanjeevini Women’s Group (originally a Gandeepam project; now an autonomous, federated NGO), and Youth Club. (See table.) • Villages in the region establish local chapters of these groups, with help from Gandeepam. Some villages have chapters of all five groups, while some have only one, according to the needs and interest of the villagers. • In addition, Gandeepam heads a network of 60 Tamil Nadu NGOs, known as the Gandeepam Global Foundation (GGF). Thus, Gandeepam has far-ranging influence not just in the immediate community, but in the larger state as well. • Three weeks were spent with Gandeepam staff and patients, assessing Gandeepam’s community programs and regional influence, as well as approach to HIV/AIDS education, treatment, and prevention. • Site visits were made to the headquarters of two Gandeepam partners, members of the GGF, for purposes of better understanding the extent of the GGF’s influence, and making comparison to Gandeepam’s approach to HIV/AIDS in the community. • A qualitative survey on the subject of beliefs and attitudes towards HIV/AIDS education, treatment, and transmission prevention was administered to representatives of 39 GGF NGOs during a quarterly conference in July 2004. Extent of Gandeepam’s Reach • Chapters do operate independently, but a hierarchical network from Gandeepam’s Director to local field staff in the villages serves to ensure that they do not become too isolated from one another, or from Gandeepam. • Through specific goals and target populations, these community-based organizations provide a forum for virtually every member of the village, and can form a net to strengthen the self-reliance of a village as a whole. Conclusions & Looking Forward • Based on time spent with Gandeepam staff, patients, and partner organizations, it appears that Gandeepam has created a very large and influential education and empowerment network in its region. However—although fighting the spread of HIV is one of Gandeepam’s top priorities—neither HIV education, nor treatment, nor prevention is among the goals of its CBOs. Issues concerning HIV/AIDS are dealt with separately by clinic staff treating infected patients and, since patients are considered abstinent during treatment and treatment is considered curative, clinic counseling does not involve discussions of how to prevent HIV transmission. The clinical trial this grant lays the groundwork for could assist Gandeepam in assessing these outreach messages. • Though in a unique position to raise awareness and combat the spread of HIV, it appears that Gandeepam and its partners are missing opportunities to do so, in part due to lack of integration of HIV education into other programs. As indicated in conversation and in survey responses, this approach seems at least partly informed by local belief systems and cultural norms. • In recognition of the different beliefs held by the parties at Gandeepam and Mount Sinai School of Medicine, these small, realistically attainable goals are proposed: • Build upon Gandeepam’s strength—their extensive access to and influence in the community—to reduce local stigma against HIV patients. Proactive education in the villages, conducted as a matter of course and independent of specific individuals, could make life much easier for known HIV positive villagers. • Open a dialogue with Gandeepam to ascertain the nature of their dislike of condoms, which is in part rooted in Siddha’s Hindu tradition. It is not expected that Gandeepam will begin to promote their use, but perhaps they may not continue to discourage it in all circumstances. Location in India of Tamil Nadu Purpose • Part of a planning grant to assess Gandeepam’s capability to conduct future clinical trials of their herbal HIV treatment. See also: posters by Scott Ikeda and Deeangelee Pooran. • This assessment is meant to establish the extent of Gandeepam and the GGF’s influence on their communities, and to determine whether maximum use is made of the opportunities thus provided to promote HIV awareness, prevention, and treatment. Reprint Requests or Correspondence should be directed to: Kaylan Baban, BA, Mount Sinai School of Medicine 600 Columbus Ave, Apt 10J, NY, NY 10024 Kaylan.Baban@mssm.edu