FILLING THE GAPS: Saluting those making life with HIV in India an accessible reality

By Rajesh Ramanathan

Published on March 2009

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The Prayas-Amrita clinic, a local nonprofit that delivers HIV healthcare, was our third stop on a journey that uncovered a world of grassroots support systems that were offsetting the resource limitations and social taboos hindering the provision of effective HIV care in Pune, India.

At the clinic, we met Geeta (name changed), a ten year old girl whose rural upbringing and socioeconomic status magnified the challenges that confront India’s 70,000 HIV positive children - late diagnosis and poor penetration of prevention of mother to child transmission (PMTCT) programs; inadequate educational, financial, and social support for families caring for children with HIV; and social stigma that discourages HIV status disclosure. Geeta, following the death of her parents to AIDS-related conditions, had recently moved to Pune to live with her uncle. She was also infected with HIV and had begun antiretroviral therapy (ART) last year to bolster her immune system. Her uncle’s financial situation had already forced him to place Geeta’s HIV negative sister in an orphanage, and in the clinic he discussed having to enroll Geeta in one as well. As the doctor and Geeta’s uncle made plans for her continued treatment and monitoring at her next home, it became apparent that her HIV status disclosure to prospective orphanages was not a realistic option.

Amidst these challenges, the growing number of HIV/AIDS related non-profit and governmental organizations embody hope for these children. One such organization is Manavya - a residential care program and orphanage for destitute women and children with HIV. Currently, the Manavya orphanage houses and cares for 55 HIV positive children, ranging from 20 months to 16 years of age. The orphanage, located about half an hour away from the bustle of Pune, is a modest two-storey building run by eight HIV positive housemothers. The children share 5-6 large bedrooms and receive special high-protein meals aimed at supporting their immune system. Monthly, they have a field trip to a government clinic to measure their CD4 levels (markers of the immune system) in order to determine if they need antiretroviral therapy. Mr. Lawate, the son of the founder, proudly attributes the children’s cooperation with blood-draws and medications to the culture of acceptance fostered at Manavya.

While Manavya has succeeded in providing their children with shelter, health care, and opportunity, it is sad that they have had to overcome the most social stigma in trying to provide education for the children. The fears of teachers and parents at the nearby public school over “catching” HIV from the Manavya children had resulted in the school prohibiting the children from attending, forcing Manavya to hire a teacher and bring education to the children. The children also receive vocational training, as Mr. Lawate privately fears that their immune systems will not tolerate the rigors of the rigid, competitive Indian higher education system. Unspoken, however, is the resignation to the reality of intense stigma and discrimination that exists against those living with HIV at higher academic and professional institutions.

Changing the attitudes of medical professionals towards HIV positive patients, and educating the public have been the missions of Dr. Madhu Oswal, an inspirational young HIV doctor working in Pune. Several years ago, with the help of a local HIV expert, she conducted private continuing medical education seminars to dispel fears among local physicians over treating HIV positive patients. To circumvent the public taboos around HIV and sexuality, she participated in the creation of an HIV/AIDS helpline, Mukta, which allows callers to anonymously ask questions and connect with other HIV-related NGOs in Pune. Mukta has reportedly fielded more than 15,000 calls in 3 years and has grown from being a service that was staffed part-time by doctors to being staffed daily by trained counselors.

Like Mukta, other groups are striving to address the many gaps that exist for HIV positive individuals within the overextended governmental support structure. In response to the strong pressure on young adults in Indian society to get married, marriage bureaus run by HIV positive individuals are steadily growing in popularity in India’s urban centers. These bureaus serve the dual purpose of providing HIV positive individuals with a low-risk way to find partners, as well as enabling many widows and widowers to overcome the traditional stigma associated with widowhood and step-children.

In Pune, we encountered numerous physicians, social workers and other philanthropists who had devoted their time and energy towards providing dignified health care to HIV positive patients. In between the figures and tables of HIV statistics, and away from the laments about climbing HIV incidence rates by international experts, we discovered unsung stories of exceptional individuals toiling within a porous system to ensure that a wholesome life with HIV in India is not a dream, but an accessible reality.

Rajesh Ramanathan, a Dartmouth medical student, traveled to Pune with two close friends and colleagues, Shailvi Gupta and Rajendra Aldis, to study the delivery of healthcare to persons living with HIV. Their experience was truly rewarding, providing a glimpse into the systemic supports and barriers faced by the millions of men, women and children living with HIV.

More details regarding Manavya can be found at: www.manavya.org, the Prayas-Amrita clinic at www.prayas-pune.org, and the Mukta helpline at http://www.muktaahivhelpline.org

Rajesh can be contacted at rajesh.x.ramanathan@gmail.com

Article downloaded from http://www.globalpulsejournal.com/2009_ramanathan_rajesh_filling_the_gaps.html