Awards of Courage
Honoring with Pride 2000 Honoree
Equally at home at ACT UP demonstrations and on scientific panels, Peter Staley changed this country, leading the movement to pressure the pharmaceutical industry and public policy makers to heed the concerns of the communities impacted by their decisions. Mr. Staley was diagnosed with AIDS-related complex in 1985, while working as a bond trader on Wall Street, and he became a member of ACT UP in 1987. While heading the group's fund-raising efforts, he also organized and led many of ACT UP’s historic protest actions and effective policy initiatives. In 1992, he founded Treatment Action Group (TAG), which quickly became an indispensable voice in AIDS treatment research advocacy. Mr. Staley has been an amfAR Board member since 1991, and he was appointed to President Clinton's National Task Force on AIDS Drug Development in 1994. He recently launched AIDSmeds.com, a website providing treatment information for people living with HIV.
In late 1985, when I was 24, closeted, and working on Wall Street, I was diagnosed with AIDS-related complex. This was right after the death of Rock Hudson, and it was a very scary time. There was a real sense of panic about AIDS in this country, and there was talk of quarantine. There were no treatments. I continued working — more to keep my health insurance than anything else — but I also began trying to learn everything I could about this disease. The more I learned, the more clearly I saw that nothing was being done by our government. It was an unbelievable situation, and along with fear, I began to feel anger.
About a year and a half after my diagnosis, on my way to work, I stumbled upon the very first ACT UP demonstration. That night, the demonstration was covered on CBS national news — and there was the FDA, responding immediately. That show of power was stunning. I came to the very next meeting of ACT UP and didn’t miss a meeting from then on, working behind the scenes and ultimately taking charge of fund-raising. In October 1987, the Dow crashed and my T4 cell count went right down with it, and I realized that the tension of Wall Street was literally killing me. I went on disability in March of 1988, just in time for the first anniversary of ACT UP, which we marked with another demonstration on Wall Street. I was in one of the first waves that sat down in the street to block traffic, and there was a local TV station with its cameras right in my face, asking me why I was there. Sure enough, that night on the local news it said, "Peter Staley, AIDS victim." That was it — I was finally out.
From there, I started formulating ideas for demonstrations, and focusing on specific campaigns, the most prominent of which was the campaign to lower the price of AZT. Burroughs Wellcome made a tactical error with its original price on AZT — at $10,000 annually, it was the most expensive pharmaceutical ever. It was shocking and foolhardy, because AZT was the only treatment we had for a new disease that was considered the most serious health crisis in the country. In addition, the company hadn’t spent much bringing it to market. The government financed its initial discovery and conducted most of the clinical research, and it was approved by the FDA in record time.
First, we had a meeting with Burroughs Wellcome, where we laid out our argument and they laid out theirs — and we also used the opportunity to inspect their headquarters for possible "actions." After waiting for two months for a response to our demands for a lower price, I led an action where we bypassed security and sealed ourselves into one of their corporate offices using high-powered drills. They didn’t back down, so we upped the ante by shutting down the New York Stock Exchange, sneaking past security and using foghorns to drown out the opening bell. The company finally lowered the price three days later. AZT continues to be one of the best- selling antiviral drugs on the market, and since most people with HIV in this country are on Medicaid, the reduction in price has saved U.S. taxpayers many hundreds of millions of dollars over the years. And beyond the direct impact on this specific drug, our victory also succeeded in setting a precedent, a tacit ceiling for the pricing of antivirals that has been respected to this day. There has never been an antiviral that has even approached the $10,000 level since AZT.
In 1991, I founded TAG, an affinity group within ACT UP. Originally, the acronym stood for "Treatment Action Guerillas," and our very first action was to throw a gigantic condom over Jesse Helms’ house in Arlington, Virginia. The condom was painted with the message "A CONDOM FOR UNSAFE POLITICS — HELMS IS DEADLIER THAN A VIRUS." For years, Helms led initiatives in the Senate against people with HIV, and the community had only responded verbally. It was time to bring our anger to his front door — literally. Did it work? Only he would know for sure, but he has been a lot quieter on AIDS ever since.
In early 1992, TAG renamed itself the Treatment Action Group and split off from ACT UP in order to concentrate on treatment activism — advocating for more and better AIDS research and treatments, pressuring government and industry. It was what we knew best, and it was where ACT UP’s greatest accomplishments had been: breaking down FDA barriers to approving therapies, opening the gates of the NIH and the doors of pharmaceutical companies to patient advocacy. Those doors were largely open by the time TAG was formed, so we concentrated on constantly going through those doors, advocating strongly for various positions — many, many of which were adopted. Harold Varmus, the former Director of the NIH, has called TAG "the most remarkable organization of disease advocates anywhere." The years of ACT UP and TAG are truly historic in that they created a patient advocacy movement, forever changing the nature of medical research by giving patients a stronger voice in its conduct. More than anything, our work gave us a sense of the power we could have, if we only would summon the nerve to use it. At the same time, AIDS activism introduced our country to a community they had long ignored — gay men and lesbians. It obliterated the stereotyped notion of the "cowardly queer," drowning it out with a loud voice that would not back down.
Obviously, the crisis isn’t over: we still lack a national commitment to effective prevention campaigns, like federally backed needle exchange. But compared to the period before the advent of AIDS activism, we are dealing with a radically different set of circumstances today. Fortunately, huge majorities of Americans believe that AIDS deserves a major commitment of resources. However, on the international level, nobody can claim any victories — there is no way to paint a silver lining. A huge international commitment of resources is long overdue.
Today, I continue to work on AIDS, though from a very different angle. Learning all I could about my treatment options and working as a partner with my doctor in my own health care has probably played no small part in the success I’ve had in continuing to live with this virus. But this is an incredibly complicated disease, and at a certain point I realized that, while there was a lot of information about AIDS on the internet, very little of it was targeted to the beginner, the person who is intimidated by the sheer volume and complexity of the information. This led to the birth of my new venture, AIDSmeds.com, which was launched in March. The response from visitors to the site has been wonderful. It has been a lot of hard work, but it all feels worthwhile every time a thankful e-mail arrives from someone living with, and fighting, HIV.