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Spencer Cox, Iconic HIV Activist, Through the Eyes of His Mother and His Friend

A Conversation With Beverly Cox and Peter Staley

September 12, 2013

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Terri Wilder: It sounds like he'd already kind of started into what ACT UP is known for, which is knowledge equals power. If you don't know what the other side thinks, then how can you come up with a strategy?

Peter Staley

Peter Staley

Peter, do you remember the first time you met Spencer?

Peter Staley: I don't. I remember definitely getting to know him in '89. I mean, it did not take long. And that's unusual. The ACT UP membership had grown so large by '89 that I was very selective about who I noticed, and who was on my radar. But Spencer got on it very quickly. And it was through the Treatment and Data Committee [T & D], which was easily the most intimidating committee to join within ACT UP. He jumped right in.

Beverly Cox: That would be his forte, is to jump into something he thought was complicated.

Peter Staley: Right. And so, along with Garance, they were by far the youngest members of that committee. But what hit me so quickly was how he seemed almost older than the rest of us. First off, he had more, kind of, classic gay knowledge than anybody in the room, as far as Broadway and movies -- just mind boggling. He would regale us with lines and humor from all of that rich history. So we would always feel like we were naive in that regard, or younger in that regard than he was ... or, of a younger generation. He seemed like he was out of the '60s or '70s, as far as the gay world.

But he was not intimidated by the brainiacs in T & D. He jumped into the debates right away. And he jumped into the science right away. And that was your path into that club. If you had the smarts and you learned the science, you rose quickly in Treatment and Data. You were invited to the meetings in Washington with Tony Fauci [head of the U.S. National Institute of Allergy and Infectious Diseases], and with Frank Young, originally, the head of the U.S. Food and Drug Administration [FDA] -- and he would wow them. I mean, he was just fearless. He was not intimidated by conversations with people older than him.

Beverly Cox: He would not walk into a meeting like that without being thoroughly prepared.

Peter Staley: Exactly.

Terri Wilder: Peter, what do you think was the biggest contribution Spencer made on that committee?

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Peter Staley: By far, the biggest contribution was kind of a pivot that he was definitely a leader in what occurred in treatment activism, in general, around 1990 or '91. It was beginning to dawn on us that the early demands of ACT UP had been naive. The cure was out there. [Of] the hundred-odd compounds that had been floating around in the literature and that may have had a test tube study attached to them, that one of those was the cure; we just had to scream at the system loud enough to get them to approve it -- test it quickly, and get it approved.

As Spencer and others got deeper and deeper into the science, they realized that we had been naive. They started pushing ACT UP and the rest of us -- and I never considered myself in Spencer's class, or in Mark Harrington's class, the ones who became completely comfortable with the underlying science. I was more a strategy guy. But they started pushing us to realize that we had a much harder game in front of us, and that the only path forward was actually using classic scientific method and epidemiology, and biostatistics. They really had an emphasis on the statisticians and what they were saying, in what we needed to do as far as clinical trials.

They said there was no shortcut around going back to the basic science, getting the answers, and figuring out what exactly is going to work. But once you accept that you could speed that whole system up; you could push every pressure point along the regulatory review and the negotiations between companies and the FDA, and between companies and the U.S. National Institutes of Health [NIH], and you could grease the wheels. But there was no getting around that we had a basic science issue, and that we had major scientific roadblocks that we had to work through.

Inspiring stories of people living with HIV.

In this clip, Peter Staley shares a key piece of HIV treatment history of which he and Spencer were part.

The photos are of Peter and Spencer as young men, and of Spencer with renowned activist Larry Kramer.

He became religious about this. And it goes back to what Beverly said: data, data, data.

I remember, late in the game, when TAG took a very, very controversial position of actually opposing Hoffmann-La Roche's attempt to get one of the first protease inhibitors, saquinavir [Invirase], approved using accelerated approval before they had done the clinical trials necessary to really show how we would use that protease inhibitor to save lives. I said, "We're going to have every AIDS activist in the country screaming at us. Are you sure we should be going down this road?"

And, like a debater, Spencer explained it all to me in a way not couched in science; it was half that, but the thrust of his argument was the morality of what we were doing, the ethics of what we were doing, and how we were serving a greater good by the position we were about to adopt. We were abandoning a system that was serving the privileged few who had great HIV doctors, and we were pivoting to a system that advocated for the greater good -- including the single mom in Harlem that was connected to an HIV clinic up there that didn't have the luxury of tailor-making her regimen with an HIV doctor in Chelsea, or in Greenwich Village. So it was a beautiful, ethical argument. And we went with it. I think we were on the right side of history.

Terri Wilder: Beverly, what did you think when Spencer started to become an activist? Did he tell you about the work he was doing?

Beverly Cox: He did. And, actually, I have a cardiologist that's a client of mine; and we were discussing this. He said to me, "Did you realize that Spencer was going to FDA? And did you realize he was going to Congress?" I said I did; he told me about it.

He said, "But you didn't realize the impact?" I said, "Correct." I had no idea of the impact.

Peter Staley: It's a common story: A lot of our families were quite stunned when they saw How to Survive a Plague, at the impact of it all.

Beverly Cox: I had no idea until after he died. I mean, I was stunned at, all of a sudden, his notoriety. And, going back: Spencer was very out in high school as being gay. That was not a time when most people were out, back in the early '80s.

Peter Staley: Right. He came out early.

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