AIDS Activism: More Than a Walk in the Park


On a beautiful Sunday in May, Chris de la Torre, 31, a comedian wearing a “Kool AIDS” T-shirt, and his partner, dancer Edwin Figueroa, 30, his tee proudly proclaiming “POZ LOVER,” marched through Central Park with 45,000 others in the Gay Men’s Health Crisis’s main fundraiser, the annual AIDS Walk. Although Figueroa is HIV-negative, de la Torre was infected at age 19 as a recent graduate of a New York City high school (where, he said, he never received the mandated AIDS education).

De la Torre began his first HIV drug “cocktail” five years ago; he’s now on his third regimen. “On the first, I felt sick. On the second, I got jaundiced all the time,” he says. “Now I’m on one pill a day, and I get a little nauseous.” Although like so many since the advent of protease inhibitors in 1995, he has managed to keep the virus from exploding into full-blown AIDS, dealing with HIV is a lot more fraught than those smiling Big Pharma ads would have you believe. The fit, handsome couple is unique in their openness about their serostatus. They raise money through the AIDS Walk because “people are complacent, and there is still stigma,” de la Torre says.

Today, 31 years into dealing with AIDS, 50,000 Americans a year manage to become infected with HIV. In the ’80s, a diagnosis was so terrifying that many committed suicide rather than face a rapid decline and early death. In 1987, with 40,000 dead, Larry Kramer, who had co-founded GMHC and left the group in a wave of recriminations because he saw the AIDS service organization as only a caretaker of the sick, gave a speech that became the spark that ignited ACT UP. These in-your-face protesters pushed for—and helped win—expedited approval of treatment drugs. Their struggles with government agencies became a template for other patient-driven movements—as well as rights groups in places including Ramala and Moscow.

ACT UP, however, eventually became a victim of its own success. Those who were saved by its efforts quit protesting to savor their reprieve from illness and early death. Here in New York, the disease becomes ever more marginalized, with people of color—straight and gay, male and female—making up most of the recent infections. As John Hellman, director of advocacy for the Latino Commission on AIDS, notes, many Latinos are “late testers”: 42 percent develop full-blown AIDS within 12 months of testing positive.

“What is needed is a public-health advocacy that takes into account the challenges around health disparities,” says Marjorie Hill, the head of GMHC. “But that’s not sexy.”

Many of those who were on the barricades are now sitting at desks heading the patchwork of AIDS-service organizations or deciding U.S. AIDS policy. For Kramer, “advocacy isn’t activism. It is at best education. It is not out to change the power structure.”

Today’s much more muted response reflects the unique place AIDS activism holds as the first widespread response to a major public-health crisis that was created, formulated, and executed by those with the disease. As waves of protesters succumbed, the newly infected rose to take their place. But when the drug cocktail took away a sense of urgency, many began to reflect the attitude of a middle-age man infected 10 years ago who told me, “This disease is not going to be what my life is about.” Instead of street activism, he prefers to work behind the scenes. He believes using his access to the powerful is a better way to influence public policy. On a personal level, he’s educating younger gay men, like the trick who, knowing his partner was positive, nevertheless wanted to fuck bareback. He ended up being on the receiving end all right—of an hour-long lecture about safer sex.

You’re more likely to witness public AIDS activism these days on a stage or movie screen. Last year, Kramer’s angry polemic The Normal Heart won a Tony and is finally, after decades of delays, in early production as a feature film. Sarah Schulman, who co-founded the ACT UP Oral History Project with Jim Hubbard, hopes their new documentary, United in Anger, “shows people how to make change regardless of what movement you’re in.” She adds: “AIDS activism in itself has very little future until it takes on the prevention crisis, Global Pharma, and its hold on medications.” David France sees his Sundance documentary hit How To Survive a Plague as a tribute to “the triumph of AIDS activism, something we haven’t celebrated before this.”

Such nostalgia tinged April’s ACT UP 25th anniversary Wall Street protest to press for a Financial Speculation Tax to pay for AIDS treatment and prevention. But the general feeling among the thousand or so protesters was more Old Home Week than the start of a new initiative. ACT UP veteran Tony Arena, 46, once “lived, breathed, and slept ACT UP.” The April demonstration, he says, was probably “not the kind of elegant action everyone could understand and get behind.”

Perhaps such a falloff is inevitable. Every movement, from the French Revolution to Occupy Wall Street, eventually peters out or exhausts its forces. “I’ve never seen any hyperactive activism in any movement sustained for more than seven to 10 years,” says Bill Bahlman, 60, an early gay rights and AIDS activist.

Terri Smith-Caronia is employed at Housing Works, an offshoot of ACT UP that agitates for improved housing for people with AIDS. In her 18 years there, she notes, “the ones we can get out on the frontlines and go yell with me are the ones who are hungriest and the homeless. Clients we help to a more comfortable life want to live that comfortable life. Isn’t that what we fought for?”

In a telling symbol of the way memories of the Plague Years have faded, the former St. Vincent’s Hospital in Greenwich Village, the epicenter of early treatment of AIDS patients, is going under the wrecker’s ball. Across the street, an AIDS memorial park will arise. The biggest enduring public show of concern about AIDS these days is GMHC’s celebrity-studded mass walk in the park.

Young people today grew up with AIDS as a given in their lives. Maybe that explains the rate of new infections among U.S. men ages 13 to 29 who have sex with men increasing by 34 percent and a staggering 48 percent among young black men having sex with men. If those numbers don’t shock us into more radical action, we are writing off a generation.