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Stigma: The Blindspot of India's HIV Epidemic

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An HIV-positive woman the peels the labels off her medication at the government ART center so that her family members will not discover her HIV status. Image by Adita Kantipuly. India, 2016

The year 2016 marks the 30th anniversary of the first known case of HIV in India. While the number of new HIV infections in India declined by 25 percent from 2005 to 2013, the stigma of the disease remains strong.

Vidya, an HIV-positive sex worker seeking care at a government HIV care center in Madurai, said, “When I go to the doctor, they don’t even touch me. What is the point in going if they can’t do a proper exam?”

When individuals with HIV do not seek proper medical care, their immunity becomes compromised leaving them vulnerable to developing infections such as CMV retinitis, which can lead to irreversible blindness and increase the risk of an AIDS-related death.

In 1981, the first cases of AIDS in the U.S. were discovered in gay men in San Francisco. Many gay men diagnosed with advanced cases were unable to work or afford the growing cost of treatment. Small networks within the gay community created a potent public health response by speaking out across the country.

Ryan White, a 13-year-old boy, also helped change the public perception of HIV. He was a hemophiliac who contracted HIV through a blood transfusion. His testimony made HIV more “acceptable,” leading to stronger and more comprehensive care infrastructures. Today, in the United States, virtually 95 percent of CMV cases have disappeared since the introduction of antiretroviral therapy to treat HIV patients.

In India, however, the situation is different.

Mansi, a widow, had contracted HIV from her husband and was left severely visually impaired from untreated CMV retinitis. After her husband’s death, her in-laws neglected to take care of her. Mansi traveled over 300 kilometers to reach Gujarat, Ahmedabad, to get a second opinion from Dr. Alay Banker, a famous eye surgeon who has treated many patients with CMV retinitis.

“I was so sick, I begged my father-in-law to take me to the doctor,” she said.

Although it is customary in India for women to be accompanied by a member of the husband’s family on visits to the doctor, Mansi’s father-in-law replied, “What does it matter anyway? You are HIV-positive. You are going to die soon. Why should we waste money on you?”

Mansi and her two young children now live with Mansi’s mother, sister and brother-in-law. “Even my mother thinks I am a burden to them because I do not bring any financial income to the house. This is still the better of the two evils.”

HIV has left Mansi a widow not only by her husband but also by society.

From the birth of India’s AIDS response in 1992, the National Control AIDS Organization (NACO) has always prioritized vulnerable populations such as sex workers, injection drug users, and the transgender community. Yet, unlike the gay community in the U.S., they have had little success in negotiating access to care. In India, the stigma of HIV remains fierce. There are no Indian public figures such as Magic Johnson or Charlie Sheen who have made HIV more acceptable. Small “pocket epidemics” continue to emerge and several states in India have disproportionately high prevalence rates, reaching as high as 30 percent in some communities.

Currently, there are no government screening programs for CMV retinitis, but a few such programs have emerged in the private sector at hospitals such as YRG Care, part of the Voluntary Health Systems, in Chennai, as well as through HIV clinics such as one in Manipur run by Doctors Without Borders. Although screening for CMV retinitis usually requires trained eye specialists, the clinic in Manipur has implemented a program in which general physicians are trained to screen all patients for CMV retinitis. YRG Care engages in systematic collaboration with a team of eye specialists, at Sankara Nethralaya, an eye hospital, where all patients with eye problems are referred.

While these programs have undoubtedly saved the sight of many patients, an effective approach to combating the epidemic must integrate social, cultural, economic perspectives. The HIV epidemic cannot be considered solely from a medical perspective.

(Vidya and Mansi's last names have been withheld for to maintain privacy. This article was updated on September 19, 2016)