How to Survive a Plague: Q&A with Act-Up’s Peter Staley on Effective Activism

The AIDS advocacy group Act-Up sped up the FDA's drug approval process, improved patients' access to drugs and changed the course of an epidemic. How did they do it?

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Courtesy of IFC Films

When Act-Up was formed in 1987 to fight AIDS, its founders had no idea how successful they would be. As the brilliant new documentary, How to Survive a Plague, recounts, they would soon become the most effective health activists in history, pressuring drug companies, government agencies and other powers that stood in their way to find better treatments for people with AIDS — and, in the process, improving the way drugs are tested and approved in the U.S.

But Act-Up didn’t win just by sheer political stagecraft; indeed, the group often worked together with the same drug companies and regulators it targeted in the streets — strategies that hold important lessons for anyone who wants to change government policy, particularly in health care.

Healthland recently spoke with Peter Staley, one of the key activists featured in the film, which opened nationwide last week. A former bond trader, Staley quit his job to become one of Act-Up’s most effective strategists.

(MORE: AIDS at 30: Medical Milestones in the Battle Against a Modern Plague)

As someone who covered Act-Up in the 1990s, one of the things that amazed me was how you moved from getting “drugs into bodies” — the idea that AIDS patients need something, anything, now — to a much more sophisticated understanding of the science of AIDS treatment. You even moved the FDA and the NIH along with you.
The NIH got [the first drugs, including AZT] out quickly, and we wanted them out quickly, and no one regarded them coming out quickly [as a problem]. [But] it took us a while before we got answers to ‘Do these really drugs prolong lives the way we’re using them?’ and we ended up being sorely disappointed. And, so, when a new class of drugs came out, we really wanted people to know what worked and how to use them. We thought, instead of just opening the floodgates and allowing expanded access [which Act-Up had pushed for] with no information gathering, we would expand access, but gather information from it and find out how to use the drugs in the real world.

What was it like when the first AIDS drug cocktail was introduced and you could see that the drugs were really working?
It was wild. It was amazing, because the viral load test had come out a year or two before, and to watch those number go to undetectable, it was mind-boggling. And then instantly, we went into struggle mode: Now what? None of us ever thought beyond two years.

(MORE: Act V: A New AIDS Advocacy Group Focuses on Treatment as Prevention)

You’ve had a complicated relationship with the pharmaceutical industry, and you never shied away from working with them or attacking them. How did you manage not avoid becoming shills who took their money or outsiders who never got heard?
The quick answer is Burroughs-Wellcome [the company that made AZT, the first AIDS drug]. AZT and Act-Up were born in same month. When they announced the $10,000 price for the drug, [it] shocked not only us but the New York Times. At the time, it was the highest price of any drug in history.

That quickly became one of the planks in Act-Up’s first demonstration. It was a persistent fight against [the company] to lower the price. In 1989, Mark Harrington [a fellow Act-Up member] and I decided to up the pressure on that campaign because [AZT] was in wider and wider use. So we requested a meeting, they granted it, and we met with the father of AZT, Dr. David Barry. He was head of research at Burroughs-Wellcome and he was one those guys who is too brilliant for his own good and looked down on everybody. Mark and I went to their headquarters and laid out our case why the price was unjustified and he pushed back very hard.

The whole time I was scoping out their headquarters and figuring out how we can get in. It was down in Research Triangle Park in North Carolina. They ignored us, so we did an invasion of their headquarters a few months later. It was a shot across the bow of their corporate culture. I was very aware of how corporations try to make employees happy to work there; I had been part of the team at JP Morgan. It’s very important to corporations. So I wanted to make everyone at Burroughs-Wellcome feel guilty about working there. I think we accomplished it that day.

We started getting inside intelligence from employees telling us [what was going on] — because gays are everywhere — and we said, ‘This is only Round One. Lower the price or we’ll escalate.’ The whole industry was watching and were horrified. It wasn’t until a major study came out showing that AZT not only helped the sickest but those [who were not yet that ill] and the government recommended that more people be put on it and the stock price shot up, that we said, O.K., let’s do a stock exchange action.

And the New York Times editorialized against [Burroughs-Wellcome], and there were Congressional hearings. Forty-eight hours after [the demonstration], they buckled and lowered the price by 20%. From then on, the industry said it’s probably smarter to try to talk to [activists] and placate them as much as we can.

(MORE: Should We Be Trying Harder to Find a Cure for AIDS?)

With all the anti-terrorism security that’s around now, do you think an organization like Act-Up could still be successful today?
Yes, of course! The risks are higher because of the Department of Homeland Security, but we had some of that too. When we invaded the headquarters at Burroughs-Wellcome, we did it in coats and ties. And we put in the press release that we issued at the time that we had the money to pay for any and all damage we about to cause. We paid Burroughs-Wellcome $10,000 for the damage we caused and that the cops caused.

That was meant to blunt any attempt to brand us as vandals or terrorists. You can be smart about your demonstrations in this day and age to separate yourself from that label and still be effective.  There are situations where I think property damage is O.K. during demonstrations, if you’re wiling to make good on it. [You’re basically telling them], ‘This is all just part of today’s drama and we’ll clean it up.’

Act-Up was remarkably successful at speeding up FDA approvals, changing clinical trials, getting attention and money devoted to HIV/AIDS and pushing prevention efforts like needle exchange and condom programs. What made it work so well, and how important is it to have specific, attainable goals?
Sometimes you’re just raising larger issues and trying to push [your issue] into public consciousness and that happens by default even if you’re doing a narrowly-focused demonstration. I think it always helps to have something you can actually accomplish in some sort of short time horizon or you won’t look like a movement with momentum. Act-Up started racking up successes really early on.

I think a lot of our early success was [attributable to] how easy it was to guilt-trip the country; it was shocking to the national conscience to see gay men with AIDS going public like that and putting their bodies on the line. That instantly got huge public support. With the FDA, if you asked the country, 80% to 90% said, Speed up drug development. So, we were instantly winning the argument in the national mind.

I think Occupy had that going for them too, but they didn’t have things they could win in the first six months. [Also], organizational structure matters. As far as sustaining a movement, I think voting by consensus was a huge error [made by Occupy]. Act-Up was majority vote from Day One. Our general membership meetings were generally productive, and from what I heard about Occupy, theirs were not that constructive.

(MORE: Online Gamers Solve a Tricky AIDS Puzzle)

Act-Up also had highly efficient subgroups, such as the Treatment and Data Committee, which you were a big part of.
We’re seeing that now with Occupy. There’s a group called Occupy the SEC and it’s just like Treatment and Data. They’re doing brilliant work. They’ve had lots of business journal press, but the general public doesn’t really know about them. They put out one of most thorough and remarkable 60-plus-page analyses of the Volcker rules during the public comment period. They have ex-Wall Street [executives] as members. That’s a very hopeful sign and it’s a side of Occupy people haven’t really heard about.

Do you think your activism helped you survive?
That’s very hard to suss out. I get that asked a lot. Every single individual thing, whether having my family support me rather than throw me out, not having to worry about money, having a really good AIDS doc — every one of those individual factors [probably helped], but there were plenty of people who had each [or all] of those and died. The Number One reason I’m alive today is luck and whether the other stuff helped on the margins, sure.

How are you now?
Undetectable [viral load]. I’m on, like, my third or fourth regimen.

MORE: How the Global War on Drugs Drives HIV and AIDS

Maia Szalavitz is a health writer at TIME.com. Find her on Twitter at @maiasz. You can also continue the discussion on TIME Healthland’s Facebook page and on Twitter at @TIMEHealthland.

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