AIDS: Still a Gay Disease in America

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victory-deferred.jpgEven as we make progress toward legal equality in the United States, gay and bisexual men continue to be marginalized and persecuted around the world. It's not surprising to know we also continue to get short shrift in global AIDS conferences and programmatic priorities. The Joint United Nations Programme on HIV/AIDS (UNAIDS) estimates that, worldwide, fewer than one in 20 gay and bisexual men have access to HIV care, prevention, and treatment. Outside the United States, sex between men accounts for as much as 25 percent of all HIV infections in parts of Latin America, with rates nearly as high in Asia, and not as high in Africa where HIV much more strongly affects heterosexuals.

The International Lesbian, Gay, Bisexual, Trans, and Intersex Association (ILGA) in 2010 reported that 77 countries continue to outlaw same-sex relations, including five that impose the death penalty on citizens for being gay (Iran, Mauritania, Saudi Arabia, Sudan, and Yemen, plus some parts of Nigeria and Somalia). According to George Ayala, executive officer for the Global Forum on MSM and HIV (MSMGF), presentations addressing the HIV pandemic disproportionate affect on gay and bisexual men around the world accounted for a minuscule two percent of the entire program at the Eighteenth International AIDS Conference (called AIDS 2010) in Vienna. "That's pitiful for an epidemic that is largely concentrated around men who have sex with men," said Jim Pickett, advocacy director for the AIDS Foundation of Chicago. "We have to do better."

We also have to do better in addressing HIV/AIDS in gay and bisexual men here in the United States. In August 2010, Duncan Osborne reported in Gay City News that New York City health department data indicate MSM in the city continue to have a very high rate of new HIV infection and efforts to get more HIV-positive men onto treatment may be failing. "Gay and bisexual men in New York City are continuing to get infected as the predominant transmission risk," said M. Monica Sweeney, assistant commissioner of the health department's HIV/AIDS bureau. The bureau reported that in 2008, 1,751 of the 4,022 new HIV-positive diagnoses in the city were gay/bi men, further swelling the ranks of the 106,590 New Yorkers (more than 34,000 of them gay and bi men) living with HIV. As for preventing new infections, Sweeney said, "When it comes to the number of partners and how much sex gay men have, that's not something that can be controlled by government. Those are things that community norms should do."

New York physician and Gay Men's Health Crisis co-founder Larry Mass offered his own take on what GMHC is calling "an urgent priority," the worsening HIV epidemic among gay and bisexual men in New York City. "There is no strong leadership voice out there," said Mass in an interview not far from GMHC's now-former home in Chelsea. "We don't have a Larry Kramer out there."

Not long after our interview, Mass published a commentary in Gay City News offering his assessment of the current state of the HIV epidemic in gay America. "Taking a tougher stand on HIV transmission could blunt the re-escalating rates of infection in our community," he wrote. While subway ads should continue showing happy bicyclists living well with HIV after getting tested and treated, Mass said we also need franker ones showing the potentially serious side effects and failures of treatment. He recommended a stronger 'HIV prevention consciousness' and believes regulation, ideally self-regulation, is needed in gay sex venues. 

Mass also suggested that educational posters about post-exposure prophylaxis, or PEP, would let gay men know that a thirty-day course of Highly Active Antiretroviral Therapy (HAART) has been shown to block HIV infection if begun within 72 hours of exposure. Mass said we need more public discussion and educational materials that raise the ethical issues about spreading HIV. "We need our current gay men's health crisis to be out in the open," he wrote, "warts and all, the way it was in the heyday of Larry Kramer's activism, however inconvenient that might seem given our current high-profile battles for equality." He added, "No, we are not dying in the thousands the way we were then, but we are still in real trouble with all this. Trying to stuff it back into the closet will eventually backfire."

For his own part, Larry Kramer, at 75, makes it known he still has a clear mind and "tons of energy." These days, he chooses to focus it on the 2011 multiple Tony Award-nominated Broadway revival, and a forthcoming movie production, of his 1985 play The Normal Heart, about the early years of the AIDS epidemic in New York. As for his AIDS activism? The co-founder of GMHC and father of ACT UP, the man who became the angry voice of a gentle but frightened people in the darkest of the plague years, told me in his Washington Square apartment -- a sacred space in gay American history -- on a sweltering day in July 2010 that he'd recently had "a lot of interaction with Dr. Fauci." Kramer said he pushed his old nemesis, Anthony Fauci, long since a friend, to aim higher in the research he oversees as director of the National Institute of Allergy and Infectious Diseases (NIAID), to go for a cure.

"The numbers make it almost unfeasible to sustain a situation where you have 2.7 million getting newly infected every year."

Words matter for a man like Kramer, who has wielded them like a surgeon's scalpel, able to heal or cut to the quick as needed. He chooses his own words carefully, intentionally, in full consideration of their denotation and connotation. "I've been after him to use the word 'plague,'" said Kramer of Fauci. "It's a useful tool, it scares people." In fact, Kramer dared me to use 'plague' in this book "from beginning to end." A plague, he said, "is out of control, which it is."

When I asked him about it, Fauci said, "I understand what Larry is getting at." He said he has used the word "plague" himself, depending on the audience and the point he wants to make. He said, "Larry wants to use the word plague because he wants to put it into the historical perspective of the handful of diseases throughout the history of mankind that had an enormous impact." Fauci said that when he talks about HIV to the White House or Congress or OMB (Office of Management and Budget) or constituencies, "I always put it in the context that we are living through a historic period from the standpoint of public health. There have only been a couple other periods where there have been such horrendous pandemics against the human population -- bubonic, flu, smallpox."

As for a cure, Fauci said, "The numbers make it almost unfeasible to sustain a situation where you have 2.7 million getting newly infected every year." For every one person that receives HAART, two or three others get newly infected. "More people are getting infected than we are able to put on therapy," said Fauci. He said there are two choices: Do a better job with prevention, or "get to a point where you can get people off therapy." As it is now, he said, we face "an economically unsustainable situation."

There was a renewed push for a cure in the wake of stunning news from Berlin in 2006, that an HIV-positive American man also diagnosed with acute leukemia appears to have been cured of HIV infection. He was the beneficiary of a complex, expensive, and experimental stem cell transplant from a very rare donor with a genetic resistance to HIV infection found in only about one to two percent of white Americans and Western Europeans, about four percent of Scandinavians, and in no Africans, African-Americans, or Asians. The man's leukemia was successfully treated after the donor cells essentially replaced his immune system. To everyone's astonishment, the man also has remained HIV-negative since the procedure.

Underscoring the exceptional nature of the so-called Berlin Patient's experience, Fauci said the total eradication of HIV isn't likely in the foreseeable future. "We have very good drugs that block HIV replication," he said, "but we don't have any drugs that can eliminate the virus from HIV-infected cells." For this reason, he explained, "Getting an eradication cure will require fundamental science and discovery -- which is truly unpredictable."

On the other hand, there is what is called a "functional" cure. It likely would involve a sort of super dose of HAART, or another compound not yet known, to "smoke out" the latent virus that remains in the body. Virus drained from these so-called reservoirs would then be dispatched with existing or adapted medication. Fauci said one of the greatest obstacles, even for a functional cure, is that HIV-positive individuals have to be treated early enough in their infection that they don't yet have reservoirs of virus. "The earlier you start therapy," he said, "the smaller is the reservoir of infection." He explained, "When you start earlier rather than late, you preserve HIV immune function. You bring the viral reservoir to such a small, miniscule segment so if you stop therapy, either with or without enhancing the immune system, you hope the immune system is able to rebound from its reservoir. That is a functional cure, because even though you haven't eliminated the virus from the body, you have a functional cure."

Fighting a global scourge. A special report

In 2010, NIAID announced a new $42.5 million research initiative, dedicated to the memory of Project Inform founder Martin Delaney, who died in 2009 of liver cancer. The "Martin Delaney Collaboratory: Towards an HIV-1 Cure" will support efforts to purge the reservoirs of HIV from the body and provide the functional cure Fauci described.

Of course receiving treatment is predicated on knowing one's HIV status. But in the U.S., with thousands of HIV-positive citizens already waiting to be accepted in the AIDS Drug Assistance Program, and others discouraged even from being tested, there is still a tremendous gap between what would be nice and what is. Fauci is diplomatic. "It's somewhat problematic at the domestic level," he said. "If you can't treat all the people who have advanced disease, how are you going to seek and treat people who don't even know their HIV status?"

Whether we call it a plague or pandemic, there are times it can, and does, seem HIV/AIDS is still out of control, still very much a crisis, even after thirty years. Just ask Lorri Jean, executive director of the Los Angeles Gay and Lesbian Center, the world's largest LGBT service provider. "I still think it feels like a crisis that 50 percent of African-American gay men are infected with HIV," Jean told me. She said it's "shocking and outrageous" that African-American gay and bisexual men in particular are so heavily affected by HIV, and that organizations in the gay community haven't seemed to care, judging by the agendas they set and the priorities they pursue.

Maybe her way of looking at things is shaped by the fact that a couple of floors below her office, the Center's health clinic each month takes care of 2,500 people with HIV, and tests another 1,000 for the virus. Maybe it's the "throwaway" kids -- mostly gay teenage boys, kicked out of or running away from their homes for being gay, at high risk for HIV infection from older men who promise love or pay them to have unprotected sex -- in the center's homeless shelter a short elevator ride down from where she works. Maybe it's the center's HIV prevention programs that Jean said are being "eviscerated" by state and county funders. Or maybe it's that she simply hasn't forgotten the center's proud 40-year commitment to gay equality rooted in its founders' belief that only healthy, strong gay people can create and enjoy true gay liberation. No matter what it is, and no matter how you look at it, Lorri Jean said, simply, "We've reached a tipping point where there is harm to our community by people not realizing AIDS disproportionately affects our community."

TEMPLATEReadMoreBookExcerpts.jpg Excerpted from John-Manuel Andriote's Victory Deferred: How AIDS Changed Gay Life in America

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The author of Victory Deferred, John-Manuel Andriote has specialized in HIV/AIDS reporting since 1986. His research materials, correspondence, and recorded interviews are part of a special collection curated by the Smithsonian.

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