Q&A with Peter Staley

Peter Staley at HSPH during his talk on AIDS, ACT UP, and Birth of Patient Advocacy
Peter Staley at HSPH during his talk on AIDS, ACT UP, and Birth of Patient Advocacy

“I’ve always admitted my activism was a very selfish form of activism.
I wanted to live.” – Peter Staley

When he tested positive for HIV in 1985, Peter Staley was a 24-year-old closeted gay bond trader. He joined ACT UP (AIDS Coalition to Unleash Power) shortly after its founding in 1987. A year later, he left his job on Wall Street to become a full-time AIDS activist and a member of ACT UP’s Treatment & Data Committee.

In 1989, Staley ran ACT UP’s campaign to pressure Burroughs Wellcome to lower the price of AZT. He led a demonstration on the floor of the New York Stock Exchange, disrupting trading and resulting in a price reduction of AZT days later.

After internal conflicts and power struggles within ACT UP, several members of the Treatment & Data Committee split off in 1992 to form the Treatment Action Group (TAG). Staley was TAG’s founding director. He is featured in the Oscar-nominated documentary How to Survive a Plague.

While visiting Harvard in April 2013, Staley sat down for a Q&A with Martha Henry, HAI’s Director of Communications.

What do you imagine your life would have been like if you hadn’t become infected with HIV in 1985? Would you still be working on Wall Street?

No. I had this lifetime plan sketched out in my head during my college years. I was going to do my penance on Wall Street to build a nest egg, work there for most of my 20s. The goal was to get out by the age of 30 with enough money that I didn’t have to worry about employment for a while and then start running for office. I wanted to get into politics. I was very political in college. It was my passion. I did an internship in D.C. the summer of ’82 for the Democratic Congressional Campaign Committee and the bug just bit deeper. So that was the game plan. I didn’t rule out President Staley in my head.

As an AIDS activist, what achievement are you most proud of?

Definitely the advent of HAART [Highly Active Antiretroviral Therapy]. That 10-year battle from the birth of ACT UP to the protease inhibitors coming out was relentless and a roller coaster of emotion. We stuck to it and didn’t give up and used every tool available—our smarts and our street smarts.

Obviously we weren’t in the labs creating these drugs, but we did significant work to grease the wheels of that process. In my mind, more importantly, we created the political environment that flooded the system with research dollars. What I love to point to is the NIH [National Institutes of Health] research budget prior to ACT UP and then how it starts climbing really rapidly in ’87 and in a few years reaches a billion dollars and climbs from there. Money matters in research. All that money eventually paid off. That wasn’t happening prior to ACT UP.

Looking back, do you regret anything you did at ACT UP?

Yes, plenty. I think we made lots of mistakes. I don’t think any of our mistakes cost lives. The thing I regret the most is that we weren’t able to keep it together as an organization. I regret the split [when the Treatment Action Group split off from ACT UP].

ACT UP LogoIn the ACT UP Oral History Project, you described the years 1987-88 as the best period of your life. Given the fact that you were HIV positive and there was no treatment at the time, what made those years good?

I found out I was positive in late ’85. I didn’t know another person with HIV at the time. I was closeted and my only knowledge of the gay community was through the bars and the clubs on the weekends. I didn’t know what organizations were out there. I went looking for that community.

And then ACT UP was born and I started going to these Monday night meetings. From the earliest meeting, it was over 100 people. We started big and just grew kind of exponentially from there.

I like to say ACT UP became my church; it became my family; it became my sex life, my love life. I started going through a series of boyfriends at the time, all found in ACT UP. I had shut down sexually after the diagnosis. I was able to reawaken because there was this beautiful and smart and very progressive way of living in ACT UP, where we knew that safe sex worked. So that was liberating as well.

And you could see the early successes of ACT UP as a movement, at least from media attention. We were fascinating to the public right from the get-go. It was just a beautiful, heady time.

How did your perception of who the enemy was change over time?

There were different kinds of activists. I was not one of the ones that frothed at the mouth with hatred at those we were trying to change, with the exception of the Moral Majority members in the Reagan administration.

I always felt that I was dealing with other human beings. And if we made their lives hell because they were stuck in some bureaucratic mindset or something, that was a price that had to be paid. But I felt it hard to work up hatred or personal animus or anger towards people.

I had fear and frustration. The clock was ticking and I always thought we were running out of time. And I didn’t know how we were going to be able to get the job done to save me and my friends in time. I thought radical politics were necessary to completely push that envelope.

Peter Staley hanging a banner over the entrance to the FDA main headquarters, October 1988
Peter Staley hanging a banner over the entrance to the FDA main headquarters, October 1988

Was ACT UP initially a completely white group? How diverse was it?

It was a pretty homogeneous movement. It was 80% gay white men at the beginning and not much different from that five years in. We slowly got more diverse over time. There’s no doubt that if the female proportion was below 20%, their influence was close to 50%. (Laughs)

The fact that the bulk of the membership was male and white—did that actually feed the movement? Did we have a higher sense of entitlement? Did that make us more indignant? It’s worth debating. There’s kind of a shock when you’re a bond trader on top of the world and all of a sudden your government says, go off and die. That same level of shock may not be felt by someone who grew up feeling ignored by their government.

If not for AIDS activism and ACT UP, do you think gay marriage would be a front-page issue in American politics today?

No. I definitely think ACT UP was the Stonewall of modern Gay rights. It’s where the community discovered it had power and a voice. We had to be listened to, period, from then on out.

What AIDS means to people depends a lot on where they live in the world. In southern Africa, AIDS is largely a heterosexual epidemic. Some countries have a prevalence rate above 20%. In the U.S., the epidemic is less than 1% in the general population and the U.S. epidemic is concentrated primarily among men who have sex with men (MSM) and injection drug users. Does AIDS in Africa seem like an entirely different epidemic to you?

Yes. I think these are all different epidemics. You have different epidemics in this country. So each of them has to be attacked with different tools and different strategies. The strategy you would use for middle-aged gay men is completely different from the one you would use for young African-American gay men. It can get very different as far as the dynamics that play out that lead to a transmission. So, I wouldn’t presume to be an expert on how to change behaviors in rural sub-Saharan Africa when I can barely figure out how to help younger gay men in the U.S. these days.

What frustrates you most about HIV/AIDS in America today?

The fact that nobody cares and everybody thinks that it’s either solved or not much of an issue anymore. That complacency is actually feeding a new spread of the virus, especially among young gay men. What I find that’s exceedingly depressing is that the fastest growing group of HIV infections in the U.S. is young gay men, specifically young gay men of color. At their current rates of infection, which I believe is over 2.5 % a year of college-aged students, over half of them will be positive by the time they’re 50. And not all of them will live, even with these great drugs. 7,000 gay men die of AIDS every year in this country. Over 15,000 each year in total in the U.S., but 7,000 of them are gay men.

You’ve been HIV positive for 30 years. May I ask about your health today?

Oh, yeah, sure. It’s good. Knock on wood. I’m on something like my fourth regimen. I eventually moved away from some of the earlier drugs, what are called the nucleoside analogues, which remain a backbone of initial therapy for people with HIV. I’m resistant to most of those, plus they have a higher degree of toxicity. So, I constructed with my doctor, a regimen that avoided that entire class and uses some of the newer drugs that hit the market over the last decade. So now I’m on Merck’s amazing integrase inhibitor, Isentress. And I’m on Selzentry, which is one of the first entry inhibitors. I’m on only one old school drug—one of the non-nucleoside analogues called Viramune. And that’s probably the last regimen I’ll ever have to take. I can’t find any toxicities on this regimen. There are very few actually that doctors are finding in general for those drugs. It’s only twice a day and I’m pretty anal about my meds, so I generally don’t miss them.

I’m undetectable. My CD4 count has been in the 600s and stuck right around there. I should probably live until I’m pretty old, although the brain will probably go first. The only frightening thing I’m living with now is that there’s a healthy body of research showing that long term survivors of HIV, even if they’re undetectable, their brains age faster. The regimens are not completely protective of how the virus is interacting in the brain.

But I’m just amazed that I’m over 50 to begin with. So I’ll take that. You know, I’ll just adjust.