Peter Staley never meant to become an activist—but be glad he did. Because of early AIDS activists like him, scientists were driven to develop life-saving HIV/AIDS drugs, and clinical trials and drug approvals were streamlined to get new treatments in the hands of those who need them most. And in exam rooms across the country, people learned to advocate for their own health and well-being.
Thanks to Staley and fellow members of the early activist group AIDS Coalition to Unleash Power, the relationship between doctor and patient was forever changed. “Patient advocacy was born in ACT UP,” Staley says. “People really don't remember that there was such a divide between the ‘ivory tower’ and the white lab coats, and those who suffered—the patients. AIDS activism changed all that.”
In addition to holding protests, storming medical conferences, and taking over pharmaceutical company offices to force government and industry to take action on AIDS, ACT UP members helped educate the community on the science of HIV and treatment options for this new disease. Individuals headed to medical appointments equipped with community-produced publications on experimental treatments.
“We brought in John James's AIDS Treatment News; in San Francisco, they brought in BETA,” Staley remembers. “Sometimes, that was the first time the doctor would see this research. So these relationships became much more like partnerships, rather than one side talking and the other listening.” It’s a change that endures today.
Fresh out of college in the early 1980s, when the mysterious new illness was beginning to make headlines, Staley wasn’t overly concerned. “As a closeted gay man, it really wasn't on my radar. It wasn't a big deal yet,” he says. “When I arrived in New York in 1983, there was a sense that it was only happening to hyper-sexually active, older gay men”—not young guys like himself.
But just two years later, in the fall of 1985, Staley learned he had AIDS-related complex, a diagnosis given early on to people who did not yet have full-blown AIDS.
The diagnosis floored him. “It came out of the blue, just a total stunner,” he recalls. “The HIV test had just come out earlier that year—and I didn't even go in for an HIV test. I went in to see my doctor with a cold.”
Staley was fortunate to have a doctor, Dan William, who was paying attention: “He was one of the first docs in the country to notice AIDS. If any of Dan's patients came in with the slightest issue, including a cold, he would run a complete blood count.” Staley’s labwork showed a low white blood cell count—indicative of weakened immune function—and follow-up testing yielded an HIV diagnosis.
“The day I found out, I felt frightened and clueless. I wanted to learn as much as I could about the latest science,” he recalls. Reading an AIDS feature in a popular science magazine didn’t reassure him: “It confirmed the feeling that I was screwed.” The article gave Staley his first glimpse of how HIV integrates its own genetic code into CD4 cells, key cells in the immune system, which then go on to produce new copies of the virus.
“This was something science had never figured out how to reverse. And the field of immunology was so young; the CD4 test itself was brand new. It was all at the basic-science level, with a more complex kind of virus than humankind had ever had to deal with before. I thought, ‘Oh my God, we're decades away from anything that's going to help me.’”
In fact, it took roughly 12 years—and the tireless work of the Treatment Action Group, launched in 1992 by Staley and other ACT UP members—to develop effective combination therapies for HIV disease.
“Early in ACT UP’s history, there was a feeling that the cure was probably out there already, that the treatments that would cure us were already being tested in labs, and we just had to push researchers to test them fast enough,” Staley recalls. “But it turned out to be, as I had worried early on, much more of a basic-science issue: We had to find new compounds against HIV, and define the targets that those compounds would hit. And that's what ultimately led to protease inhibitors.”
The discovery of protease inhibitors—a novel drug class that rapidly suppressed HIV replication when taken along with the first AIDS drug, AZT, or other drugs like it—revolutionized treatment almost overnight. Whereas earlier treatments bought time for people with AIDS, adding a protease inhibitor staved off deadly drug resistance and gave the immune system a chance to recover.
The first protease inhibitor, saquinavir, reached the market in 1995 after a Food and Drug Administration review period of just 97 days—a testament to the work of Staley and fellow activists to accelerate HIV drug development and approval.
In retrospect, Staley can see how the immaturity of the immunology and virology fields may have helped people with AIDS grasp the science around the new disease and advocate for their own treatment. “One of the key tenets of the AIDS activist movement is that knowledge equals power. Self-education was key—and because the field was relatively new, you could climb that learning curve fairly quickly so long as you were motivated and not intimidated by the information,” he observes. “And it wasn't that hard to do, given that even the scientists were on a steep learning curve.”
Today, he believes, knowledge still equals power—and it’s the key to reversing trends in new HIV cases among young gay men, who bear the greatest burden of HIV infection nationwide.
“The first thing we've got to do is define the problem, recognize it, and start talking about it,” Staley says, citing an understandable sense of “HIV fatigue” in the gay community three decades into the epidemic. “How are young gay men going to protect themselves if they don't own up that this is their crisis now?”
“Younger gay men are living in an optimistic period when they're gaining gay rights and marriage equality right and left. That’s a very uplifting story of successful civil rights activism and I don't want to diminish it in the least, but it has crowded out any desire to look at some of the issues our community still faces,” Staley adds. “And if there's one thing HIV has taught us, it's that if you ignore it, it kills you.”
Today Staley is working with national gay rights groups to re-engage in the fight against HIV/AIDS after focusing their efforts on marriage equality. “I'm seeing some very promising signs that it's happening,” he says.
Another change he’s pushing for? Helping young gay men gain leadership positions, “so they are the ones crafting messages about HIV prevention." Staley envisions a mentoring relationship between older and younger generations of gay men, one that takes into account the different reality of today’s epidemic: “I really think the prevention messages that are ultimately going to work among younger gay men today need to take a very different approach from what we did in the mid-80s, when we were dying in droves. It can't all be finger-wagging from my generation; it's got to come from them.”
In Staley’s view, advocating for your own right to health is as vital to modern HIV prevention as it was to AIDS treatment, more than three decades ago.
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