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Fearing the Stigma of HIV

New America Media, News Report, Viji Sundaram Posted: Dec 01, 2008

Editors Note: The stigma surrounding HIV is so strong in the South Asian community, where the disease is viewed by many as a moral disease, that many people who are infected hide their condition from their friends and families for as long as they can. Today is World AIDS Day. Viji Sundaram is health editor at New America Media.

BOSTON -- Amit Dixit recalls how his friend was so worried about how his parents in India would react if they found out that he was gay and HIV positive, he hid it from them for years until he ended up in the intensive care unit of a Boston hospital. He called them from his hospital bed. Four days later, with his parents by his bedside, the young man was dead of AIDS-related complications.

AMitAfter cremating their son and just before returning to India, the parents told Dixit that they would like that he keep the cause of their son's death under wraps, like they themselves were going to. If their relatives were to ever find out, they told him, they would be stigmatized.

Yet, "this a story that needs to be told because it shows the incredible power of the fear of stigma" that is complicating the coping of an already challenging disease, and perhaps resulting in more AIDS-related deaths, Dixit said, as he sat on a park bench in Copley Square on a warm fall day and talked about his 15 years of activism in the Asian gay communities in Massachusetts.

Dixit, 40, is gay, HIV positive and unashamed of it. He remembered how when he outed himself to his U.S.-based parents nearly 15 years ago, his father's knee-jerk reaction was, "We're not going to tell anyone about this."

Although his parents have grown to be totally accepting of him since then, there are times even now when his dentist father tells him that he wishes Dixit wouldn't be so "public" about his condition.

"But I told myself that at this stage in my life why am I hiding these things," said Dixit, who told his story before 5,000 people at a U.S. Minority AIDS Council meeting in Philadelphia in 1996. "I've done nothing wrong."

Publicly acknowledging you are gay and HIV positive is a "double coming out," he said. Its taboo-filled whispers are what contribute to a deadly stigma, more so in the South Asian community, where the disease is still thought of by many as the comeuppance for "bad behavior."

"HIV as a moral disease plays out more in South Asian communities than in most others," asserted Lina Sheth, director, Community Development and External Affairs of the Asian & Pacific Islander Wellness Center in San Francisco, the oldest and largest non-profit in North America focusing on sexual health and HIV/AIDS in API communities.

In her 15 years of work in the Asian HIV and gay communities, the bulk of them in Boston, Sheth has found that it is just as difficult for an Asian woman who is gay and HIV positive to out herself as it is for a man. Becoming HIV positive is viewed as a dishonor upon a woman's entire family. This is partly because status in Asian families is not individual; it is related to family.

"A woman already has a gender stigma," Sheth said. "To add to this if you have HIV, the first thought is that she is promiscuous. And even if the woman is here, if the news gets out to India, the chances of her cousin getting married get slim."

San Francisco Bay Area resident and AIDS activist "Meena," 30, said she hasn't told her parents about her HIV status that was diagnosed a few years ago because although they are "fairly progressive," she worries they will "feel isolated," if word got out.

Both she and her friend "Rajiv" say that San Francisco is the best city to live in if you are gay and HIV positive because its residents are more accepting. That aside, HIV health care is more abundant in San Francisco than in most other cities.

Discrimination and stigma affect access to HIV testing and treatment, while shame prevents healthy, open discussions about safer-sex choices, said Jacob Smith Yang, executive director of the Massachusetts Asian and Pacific Islanders for Health (MAP), an assertion echoed by Shefali Rowshan, who runs support groups for Asians who are HIV positive at the New York City-based non-profit, Asian and Pacific Islander Coalition on HIV/AIDS (APICHA). Thirty percent of APICHA's clients are South Asian.

Rowshan said that few, if any, South Asians show up for the support group meetings APICHA holds because they are too embarrassed someone they know will see them. "I have around 25 South Asian clients. Whether they are men or women, they are so afraid of the stigma they could face if people found out."

Most of the Asians and Pacific Islanders who are infected with HIV are men who have sex with men (MSM). A cause for concern is research that points to rising levels of risk behaviors among Asian and Pacific Islander MSM in certain areas of the country, according to a Centers for Disease Control (CDC) study. There are indications that an HIV epidemic is emerging among young Asian and Pacific Islanders. In a San Francisco study of 503 Asian and Pacific Islander MSM aged 1829 years, the overall HIV prevalence was nearly 3 percent.

Sadly, in many Asian communities, activists say, the general feeling is that a man who has sex with another man forfeits his rights to sympathy.

Priyadarshi Datta, 48, of Birmingham, Ala., knows this all too well. In 1995, the bisexual man, who believes he contracted the disease from his former male Caucasian partner, wasted no time in calling his parents in India to tell them that he had been diagnosed with full-blown AIDS, and that the doctors had given him no more than a month to live, a prognosis that would prove wrong. Datta, who is living on disability, said that while his parents flew to be with him within days after selling their property in India, some of his other relatives were hardly sympathetic.

Some 87 percent of all the HIV cases in the Asian-American community in the United States are among men, according to MAP's Yang. And while, according to the CDC, Asians and Pacific Islanders account for approximately only 1 percent of the total number of HIV/AIDS cases in the 33 states with long-term, confidential name-based HIV reporting, AIDS activists believe the numbers of HIV/AIDS cases may be larger than reported because of underreporting or misclassification of Asians and Pacific Islanders.

And if you add to that the fact that nearly a quarter million people in the United States living with HIV do not know they are infected, the problem could be even more widespread.

In fact, according to the CDC, in recent years the number of AIDS diagnoses in API communities has been increasing steadily. The findings of other studies support this. In a San Francisco study of 503 Asian and Pacific Islander MSM aged 1829 years, the overall HIV prevalence was nearly 3 percent.

As of 2007, there were 206 documented cases in Boston's API communities, with 14 of them from the South Asian communities, the third largest after the Vietnamese and Cambodian communities, said Ramani Sripada, MAP's deputy director. But because of the rapid growth of the Asian and Pacific Islander population in the United States, official numbers could be very misleading, she said.

That aside, not all states with large Asian and Pacific Islander populations have been conducting HIV surveillance long enough to be included in the CDC's surveillance. For example, California, where a large proportion of Asians and Pacific Islanders live, began HIV surveillance only during the past few years; thus, its HIV data are not included in CDC surveillance reports, according to research.

While the virus remains in Dixit's body and hasn't turned into full-blown AIDS, his face looks jowly, the result of years of antiretroviral drugs to keep his T-cell count high. But he's doing well otherwise. The health insurance he has through the software company he works for takes care of his medical bills. His co-payments are picked up by Boston's unique HIV Drug Assistance Program.

He continues to focus on what's important to him: being an activist and an educator.

He said he looks forward to the day when the stigma associated with HIV disappears, and people like him are no longer treated differently.

"I'm tired of being identified as HIV positive," Dixit said. "I would like to walk into a room and just be me."

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Global AIDS Fight Neglects U.S.

Deportation Linked to Higher Risk of HIV Infection

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