HIV/AIDS: What Happened To Silence = Death?

HIV/AIDS: What Happened To Silence = Death?
By David Mixner
Copyright By David Mixne
Apr 2 2010
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Silence_equals_death1 If you listen to gay rights discussions these days, you’d think that marriage equality and “Don’t Ask, Don’t Tell” are the only issues that matter. And they do matter — for our dignity and our fundamental civil rights. But there is a fire in our house that we are no longer talking about, that we pretend no longer exists: the unchecked spread of HIV.

Not only did HIV never leave the gay community, it’s getting worse. New HIV infections among gay men have doubled in the last 15 years. Last week, the Centers for Disease Control & Prevention reported that gay and bisexual men are more than 44 times as likely as straight men to test positive for HIV. But instead of increasing funding in response, states are slashing their prevention budgets.

Amid this crisis, the silence from our community is deafening. Where’s the outrage? Where’s the protest? Understandably, after decades of coping with AIDS, we’ve been eager to change the subject. But in our impatience to move on, we’ve overshot the mark. Our silence is fueling the spread of HIV.

Recently, I was at a large dinner party, and the conversation turned to AIDS. Most people seated at the table said that they didn’t know anyone who was HIV positive. I knew for a fact that two had recently become infected. They sat quietly and chose not to reveal their status. My heart broke for them. They were closeted about HIV in a room full of out gay men.

In the early days of AIDS, silence equaled death. We had to come out of the closet to confront the disease. With illness and death all around us, we had a powerful motivation to stay safe. As a community, there was a shared sense of responsibility to help protect our friends.

Mercifully, younger gay men never had to experience that era. And with our community largely silent about the disease, it’s all too easy to think of it as a thing of the past. Who can blame young men for thinking that they’re not really at risk, that they don’t need to be tested, or even that getting infected isn’t all that bad given effective antiretroviral therapy? But many younger men may not realize that even when treatment works, the side effects can be terrible and long-term. New research is finding that more than half of people with long-term HIV have early senility or another cognitive problem, not to mention a host of premature geriatric illnesses such as bone loss, arthritis, and organ failure, as well as insulin and cholesterol problems. You wouldn’t choose to get diabetes or emphysema. Why HIV?

The struggle to stay safe is hard for older gay men too. The fight against AIDS has been exhausting and long. I lost nearly 300 friends to the disease. Many of us feel isolated and alone, depressed, guilty and tired. For more than 25 years we have been expected to have safe sex, every time. That is not easy to sustain, even with the powerful memories of those we have lost.

Recent studies underscore just how hard it is for us to confront the reality of HIV. One major study found that nearly half of HIV-positive gay men don’t know their status — a sign that many of us are afraid to be tested or in denial about our risk. Studies also find that half of HIV-negative gay men don’t know the HIV status of their casual partners.

It’s time to end our collective silence about HIV.

Gay rights organizations need to put it back on the agenda. Over the past year, just 2 percent of press releases from some of the top national organizations were about HIV, and two major gay organizations didn’t issue a single release on the topic. I know that many gay organizations have HIV/AIDS programs, but what’s gone is the advocacy. When AIDS organizations became well funded and well established in the 1990s, gay groups largely abdicated responsibility for the disease to them. But today, the major AIDS organizations rightly serve a very diverse group of people — gay and straight men, women, IV drug users. If the CDC’s numbers tell us anything, it’s that gay men are still far more affected by this disease than anyone. Our leaders have a responsibility to speak out more forcefully and more often.

We need to demand more of Congress and the administration. HIV prevention works, but just 20 percent of gay men have access to effective prevention programs. Prevention funding is just a tiny sliver of the federal AIDS budget, and has been largely flat for 6 years. Last year, California, which has been a leader in fighting HIV, cut its prevention budget from $54 million to $18 million, and many other states cut their budgets as well. And HIV prevention campaigns often don’t resonate with gay men. We need new approaches that are relevant to gay men today — young and old, black, Latino and white.

But real change won’t come from the government or big organizations. It will come from each of us. Ask yourself: Have I been tested for HIV in the last year? Have I talked about HIV with my partners? Have I reached out to friends that I’m worried about, who may be at risk?

As tragic as this disease has been, AIDS galvanized a generation of gay men, and it showed that we are a force to be reckoned with. Today, a new generation is taking gay rights to a place that was inconceivable just a decade ago — fighting for our right to marry and to serve our country openly and with honor.

But taking care of ourselves and each other is just as important to our future. Every one of us needs to confront the resurgence of HIV. The first step is ending our silence.