Twenty-five years ago, when ACT UP began fighting for better health care and drugs to halt the virus decimating the gay community, I was studying journalism at New York University. It was the late 1980s, and Randy Shilts' book And the Band Played On had just been published. I read his investigative narrative on the people and politics of the AIDS epidemic while ACT UP was fighting steps away from my classroom.
I was naïve about it all. But as I was learning from Shilts, ACT UP changed the course of the AIDS epidemic through anger, fearlessness, relentlessness, and a comprehensive understanding of the drug discovery process. Many of those youthful warriors felt they had nothing to lose because they didn't expect to reach the age of 40 -- or even 30, says Jay Blotcher, ACT UP's media coordinator for nearly a year during the peak of the group's power, from the late 1980s to the early 1990s. In fact, many did not.
"There was a youthful naïveté -- the world seemed black-and-white then. But we needed that perspective to believe we could incite change," says Jay, a media consultant and writer.
Members were united in an effort to overcome the governmental and institutional silence about AIDS. For ACT UP, silence equaled death, a message that became the one of the most identifiable brands ever created by a grassroots organization.
ACT UP drew on members' public-relations savvy and female activists' tactics learned in the women's movement of the previous decades. And ACT UP's self-taught ability to conduct due diligence on drug discovery and health care policy brought results, Jay says. Days after an ACT UP protest at Burroughs Wellcome's headquarters, the pharmaceutical company slashed the price of one of the first AIDS drugs. In addition, the Centers for Disease Control in Atlanta changed its definition of AIDS as a gay men's disease and began to address those symptoms experienced by women.
"We were able to mobilize hundreds of people at a moment's notice, with only telephones and fax machines," recalls Jay. That intensity and urgency, however, took its toll on members. "The anger was keeping people alive. It was impossible to go on living that way."
It wasn't until the mid 1990s that protease inhibitors came to market. These anti-retroviral meds, used in combination with existing anti-HIV drugs, proved effective in controlling the virus. By that time, Jay and other long-time members had moved on -- creating an unexpected void in some of the former activists' lives. Some, like Jay, found themselves in a "destructive freefall," binging on sex and booze. Others, like Robert Vazquez Pacheco, who had worked on issues affecting people of color, found it hard to go back to his career as an interior and lighting designer.
"Many of us couldn't return to what we had been doing, because it seemed so meaningless," says Robert, who was an ACT UP member from 1987 to 1990. "People were saying, 'You were part of history.' What could you possibly do after that?"
For Robert, who is HIV-positive and now lives on disability, it meant remaining an activist. "You continue to do good in ways that you can," he says. "We awakened and trained a bunch of people to engage with the world in a way that could effect change."
HIV infection rates are on the rise again, especially among black and Latino gay men. "Now that doctors are pushing the AIDS version of the morning-after pill," Robert says, referring to post-exposure prophylaxis (PEP), a drug cocktail that can prevent infection if taken soon enough after exposure, "people think they can have unprotected sex. What they don't understand is that the meds are still expensive -- and toxic."
After so many years of separation, which for some was the only way to heal from their tremendous losses, the reunion will be a way to reconnect with old comrades -- and to move beyond the issues of military service and marriage equality, which some ACT UP members believe have eclipsed the issue of AIDS at many LGBT organizations.
"There are people suffering from post-traumatic stress, HIV infection rates are continuing to rise, and people with HIV are aging," says Debra Levine, who worked on women's health care issues in ACT UP from 1988 to 1993. "There isn't a strong community that exists for older activists."
Whatever comes of this reunion (humorously billed as the "Just-Don't-Call-It-a-Reunion Reunion," a nod to ACT UP's existing incarnation), people have a need to get together again -- and they need a support system, Debra says. "That became clear after the way Spencer died last December."
ACT UP member Spencer Cox, who was HIV-positive, was featured in the recent film How to Survive a Plague, in part because of his important contributions to the drug trials that ultimately resulted in the first effective anti-HIV drugs. "Folks were unsettled by Spencer because of the way he died. He was not taking his HIV medication, and he had problems with addiction," says Robert. "Folks may see some of themselves in Spencer."
His death triggered an awareness that remaining unconnected (and silent) was no longer effective in dealing with the trauma and sorrow. So former members will converge on a Greenwich Village club this Saturday to reconnect -- and, in doing so, perhaps settle on a strategy and new tactics, angry or otherwise, for addressing what comes next.
Is this expectation unrealistic, considering the emotional and physical toll taken on many of its members? Will the same anger and tactics that made headlines and provoked change, such as dumping cremated remains on the White House lawn, emerge as a result of the reunion? ACT UP's signature anger may indeed reemerge after the reunion. Their former activism seems even more necessary in today's turbulent times. But at least for one evening, more than 200 former members from around the country will reconnect without the anger.