During the worst years of the AIDS crisis, from 1981 to the advent of effective medications in 1996, the gay community forged a new definition of love: It encompassed traditional romantic love, but it went beyond the love between two people. Often shunned by our biological families, we created our own, complete with brothers and sisters who cared and fought for one another and elders who mentored the young. You only had to be at the 1987 meeting when ACT UP was formed — as the 52-year-old playwright Larry Kramer looked down on a packed hall of people half his age, exhorting us to fight for our lives — to know that we were about to embark on a remarkable journey together.
Today, though, we’re so caught up in the giddiness of the marriage-equality movement that we’ve abandoned the collective fight against HIV and AIDS.
And yes, it’s still a fight. HIV remains the largest health issue facing the gay community. From 2008 to 2010, according to the Centers for Disease Control and Prevention (CDC), new HIV infections remained steady overall but rose a startling 22 percent in young gay men. At the current rates, more than half of college-aged gay men will become HIV-positive by the age of 50.
The fact that effective HIV treatment now exists doesn’t resolve the problem. In 2012, the CDC reported that of the more than 1 million Americans infected with HIV, only 25 percent were able to access and adhere to treatment. Nearly 6,000 gay men with AIDS die each year in the United States. Moreover, even well-treated HIV demands a lifetime of daily medication. Between that burden and the social stigma that unfortunately accompanies an HIV diagnosis, living with this disease can be difficult.
Yet these community health concerns have been eclipsed by advocacy and fundraising around marriage. The nation’s largest gay rights groups do almost no programmatic work on HIV/AIDS. The words “HIV” and “AIDS” don’t even appear in the most recent annual reports from the big three: the Human Rights Campaign (HRC), the Gay and Lesbian Alliance Against Defamation (GLAAD) and the National Gay and Lesbian Task Force (NGLTF). By contrast, the Cornell University Library’s collection includes 23 boxes of NGLTF documents from the 1980s and ’90s outlining the group’s AIDS work.
“HIV/AIDS policy was the gay movement’s top priority then, and we fought it on multiple fronts,” said Urvashi Vaid, the NGLTF’s executive director from 1989 to 1992 and then again in the late ’90s. “There is no denying that HIV issues have been less a focus of the LGBT movement.”
Groups that remain dedicated to HIV/AIDS have struggled to attract contributions. In the early 1990s, ACT UP New York’s budget was more than $1 million a year, but it now fights AIDS with a budget of less than $20,000. Meanwhile, HRC, having thrown its full weight behind the marriage push, operates with a budget of more than $45 million.
In some ways, the shift in attention is understandable. Causing untold sickness and death, AIDS consumed gay activism from the early 1980s to the mid-1990s. By the time effective antivirals started bringing down the death rates, we were all so emotionally spent by the plague years that many of us wanted to believe that our job there was finished.
I was no exception. I’d been an AIDS activist since shortly after my HIV diagnosis in 1985 at the age of 24. In my mid-30s, I wanted to get as far away from AIDS as I could. Many of my friends had died, and as a survivor, I struggled to adjust to a future I never thought I’d have. I was eventually drawn back to activism by evidence of rising rates of infection. But I can understand why many gay activists and their allies pivoted — and never turned back.
After all, who wants to relive sadness while a happy story is in progress? Same-sex marriage is about love, acceptance and, recently, a stream of political victories, while AIDS is one of the biggest downers of our time.
I have to wonder if race plays a role, too. Is there more empathy within the white gay community for the (mostly white) gay couples we see on TV seeking marriage equality than there is for the young, gay black men who account for many of the new HIV infections?
Now, as the leading gay organizations and foundations regroup after the successes at the Supreme Court, it’s time to find our voice again against HIV and AIDS.
I’m not saying we should let up on same-sex marriage. It’s a worthy cause. I hardly imagined that I’d live to see the day when my partner of 19 years and I might enjoy not only the full rights and privileges of married straight couples but the incredible sense of social affirmation and inclusion that comes with that. Yet with gay marriage legal in only 12 states and the District of Columbia, the fight is far from over.
Given the strength of the marriage movement, though, surely the major gay rights organizations could reappropriate just 10 percent of their budgets to fighting HIV and AIDS.
Contrary to the prevailing skepticism, that battle is not a lost cause. Treating people with antivirals both keeps them alive and prevents them from infecting others. Massachusetts saw its HIV infection rates drop 45 percent between 2000 and 2009, largely because it expanded Medicaid to include people with HIV, not just AIDS; because its universal health-care system got more people onto treatment regimens; and because it launched targeted testing, prevention and treatment programs. With Obamacare, we have the potential to replicate those gains nationally, but only if there’s a concerted push.
On Wednesday morning, when the Supreme Court released its gay-marriage opinions, I was attending an HIV working group session at a hotel off Dupont Circle. We took a break to follow the coverage on SCOTUSblog: cheering for the majority opinions, cringing at Justice Antonin Scalia’s dissent. And then it was back to work.
As we continue to see gay love enshrined in law, we shouldn’t forget the broader form of love — of our entire community — that has sustained us and brought us this far.
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