How to demand a medical breakthrough: lessons from the AIDS fight

In the summer of 1985, Mike Petrelis was savoring life as young, openly gay man in New York City. He'd landed a cool job working for a film publicist who mostly handled foreign art films. He'd found an affordable apartment — not far from the gay mecca of Greenwich Village.

Then one day, Petrelis noticed a sort of blotch on his arm.

He went to a doctor, who ran a new kind of test, and gave Petrelis the verdict: "You have AIDS."

"He was saying that if I was going to be lucky I'd have six months to maybe two years of life left," recalls Petrelis.

He was 26 years old.

Petrelis says he broke down crying. The doctor said he'd give Petrelis a moment to be alone, pull himself together.

And sitting in that pristine exam room, Petrelis made his first act of protest: "I took out a cigarette."

He did it precisely because he knew it was forbidden.

"I was so mad with hearing this news — so angry at the doctor — I thought the one best way to protest would be to light up a cigarette and just smoke it with as much pleasure as I could find," he says.

But in the months that followed Petrelis soon shifted the focus of his rage, as he began to learn just how little the government and medical establishment had done to address a crisis that, at the time, mostly afflicted gay men. This was four years after AIDS first made headlines. More than 6,000 Americans had already died. Yet the budget for AIDS research was a fraction of what the U.S. government spent on diseases that were far less threatening. President Ronald Reagan had yet to even say the word AIDS in public. And only one private pharmaceutical company was seriously pursuing a treatment.

"I mean, my anger just knew no limits," says Petrelis.

Over the next decade, this rage would drive not just Petrelis but thousands of gay men and their supporters to form one of the most influential patient advocacy groups in history.

They called themselves AIDS Coalition to Unleash Power — or ACT UP. And they ultimately forced the government and the scientific community to fundamentally change the way medical research is conducted — paving the way for the discovery of a treatment that today keeps alive an estimated half-million HIV-positive Americans and millions more worldwide.

But as central as anger was to ACT UP's success, it would also prove a force for division.

"It was a war zone"

All this was unimaginable to Petrelis back in 1985. As furious as he was with the government, he was just as indignant that so few other gay men around him seemed to echo his rage.

"I just thought because I was so angry that there should have been more angry people," he recalls.

The gay and lesbian community had created a dynamic network of self-help groups in response to the crisis. But their focus was on providing comfort to the sick: buddies to take you to hospital, lawyers to help you write your will.

Petrelis remembers exploding at one of them: "I don't want to write my will! I want a cure!"

One of the recruits to those self-help groups was a young lawyer named David Barr. Back then he felt too overwhelmed to give much thought to asserting his anger.

All around him fellow gay men were suddenly falling sick with horrific symptoms — skin cancer, extreme weight loss, incontinence. Hospitals were turning them away. Employers were denying them benefits.

"It was a war zone," Barr recalls. So at first his overriding feeling was, "I don't have time to go yell at politicians. I've got to diaper somebody. I've got to create a legal services program to keep people from being evicted."

But Barr was also starting to grow restless. The work he was doing to set up support systems felt vital.

"But it was never satisfying," he says. "Because whatever help we were providing was really temporary. We lost everybody."

Boiling over By early 1987, with the U.S. death toll topping 40,000 and worldwide HIV infections reaching 5 to 10 million, the threat was starting to feel apocalyptic. The gay community's mounting frustration finally boiled over in an explosive show of anger.

Hundreds of gay men and their supporters took to New York City's streets to vent their fury — first with a demonstration on Wall Street. Then a protest at city hall. Then an even bigger showdown on Wall Street.

Barr and Petrelis had been to gay rights demonstrations before — pride rallies, candlelight vigils for people who had died of AIDS. But this time, says Petrelis, "something felt different."

People weren't just chanting or carrying signs. They were blocking traffic with their bodies.

At the second Wall Street action, "over a hundred people got arrested," Barr says. Many of them were people who had never contemplated civil disobedience before.

"It was such a terrific feeling to be arrested with my yoga teacher," Petrelis recalls with a chuckle.

And it was profoundly affirming. "All those men and women screaming at the top of their lungs — I felt they were taking my anger and putting it out there to the world."

For Barr, participating in the outpouring was galvanizing.

"Rallying together and expressing our anger was a really good replacement for just feeling scared all the time," he says.

"It felt powerful. And it gave us a way of saying, 'OK, we've got to do something more than just buy people groceries, and take them to the hospital, and plan memorial services.' The anger is what helped us fight of a sense of hopelessness."

Soon the group — which the New York demonstrators named ACT UP at an early planning meeting — was going national, with thousands of people across the country staging similar actions.

Getting strategic ACT UP quickly made its name with tactics that were unapologetically confrontational, says David France, the author of a history of AIDS activism called How to Survive a Plague, as well as a 2012 documentary by the same name.

"ACT UP's ethos was that they had united in anger," he says.

"They would storm people's offices with fake blood and cover people's computers with [it]," he says. "They locked themselves to politicians' desks. At one point, they barged into a meeting of a pharmaceutical company and turned over the shrimp cocktail tables."

This made them extremely intimidating. "They were no longer invisible sufferers of a disease. They were terrifying sufferers of a disease," says France.

But initially, says France, "the actions had the air of purposeless anger."

That changed when ACT UP began to deploy its anger strategically.

Barr says the demonstrations started off as a simple release: "We were angry and we needed to express ourselves."

But in doing so, he says, "we began to realize, 'Oh, this is a tactic that we can put to good use.' "

So they took it upon themselves to figure out the specific roadblocks in government policy and clinical trials that stood in the way of what ACT UP wanted most: a cure. Then they unleashed their rage to force the decision-makers to hear ACT UP's solutions.

They kicked off the approach at a government building in suburban Maryland.

"Our goal was to seize control of the FDA," says Barr.

ACT UP wanted the Food and Drug Administration to give AIDS patients access to an experimental drug. The FDA wouldn't even discuss it.

So hundreds of activists converged on the FDA's headquarters.

"One group were wearing lab coats that were stained with bloody hands," recalls Barr. "Other people brought tombstones that they made and lied down in front of the building and held up the tombstones: 'Dead from FDA red tape.' "

The activists advanced in rows, blocking the entrances. The demonstration made national news.

Within days the FDA agreed to meet. In a couple months, officials opened up the policy on access to experimental drugs.

France says the two prongs of ACT UP's strategy were equally important. The aggressive protests got them a foot in the door, but it wouldn't have made a difference if they hadn't done the homework needed to offer insightful and viable proposals once they did get a meeting.

"What made this work was not just the anger. But the anger coupled with the intelligence," says France.

ACT UP came to call this approach its "inside-outside strategy." And they deployed it over and over again — with the National Institutes of Health, and then with pharmaceutical companies, eventually becoming full partners with key scientists.

The upshot of all this: "What they were able to revolutionize was really the very way that drugs are identified and tested," says France.

This included scrapping the prevailing practice of testing drugs on a small number of people over a long period of time in favor of testing a huge sample of people over a much shorter period — significantly speeding up the time it took to conduct drug trials.

Similarly, ACT UP insisted that the researchers and pharmaceutical companies that were searching for a cure for AIDS also research treatments for the opportunistic infections that were killing off AIDS patients while they waited for a cure.

In the process, says France, "ACT UP created a model for patient advocacy within the research system that never existed before."

Today it seems natural that people suffering from a disease — whether that's breast cancer or diabetes — should have a voice in how it is researched and treated. But France says this was decidedly not the norm before ACT UP.

In 1996, scientists finally did find the treatment that would keep people alive. France says while scientists would probably have made the discovery eventually, there's "no question" ACT UP made it happen sooner.

But an organization that uses anger as a tool also faces a challenge. Once you get people to tap into their rage — it's hard to control it.

"Stop killing us!"

That contradiction came to a head for ACT UP one Sunday in December of 1989 at Manhattan's St. Patrick's Cathedral.

Outside the church, ACT UP was staging a massive demonstration to call out Archbishop John O'Connor for opposing the use of condoms.

Petrelis was part of a smaller group that decided to take the protest inside — to the mass.

He'd been raised Roman Catholic and had a lot of unresolved feelings toward the church.

"You know condemning me as gay, just all that Catholic guilt I had been raised with," he says.

They didn't want to disrespect parishioners, so the plan was to wait for O'Connor to begin his sermon, interrupt by reading a quick statement, then turn their backs on him in silent protest.

But as Petrelis watched his fellow activists begin, he says something inside of him stirred: "I felt there was just not enough anger that could be heard."

Petrelis had a whistle with him — the kind for calling for help when you're being attacked. He started blowing it.

"Loudly," he recalls, "I stood up on the pew literally blowing the whistle on centuries of horrible treatment by the church toward gays and towards women."

Even that didn't feel like enough. Petrelis pointed his finger at the archbishop: "I started screaming, 'Stop killing us! Archbishop O'Connor, Stop killing us!' "

France's documentary includes footage of the moment — Petrelis standing on the pew, other activists taking up the chant "Stop it! Stop it!" Still more leaping into the aisle and laying on the floor as police march in to cart them off.

O'Connor continued the service. An activist lined up for communion, then took the wafer the priest had given him, and crumpled it.

The aftermath

David Barr had opposed this protest. The result confirmed his fears.

"The next day the story on the front pages of the newspapers was not, 'Look at all these horrible HIV policies the church is promoting.' It was, 'Gay guy spits body of Christ out on the floor.' "

Barr was part of a contingent within ACT UP that felt the time had come for a new phase. He believed ACT UP's inside-outside strategy had largely succeeded. Top policy makers and scientists were now giving ACT UP's proposals a respectful hearing.

But AIDS activists had not yet convinced the political class to mobilize the full resources of the federal government behind the search for a cure. For that, ACT UP would need to build this into a movement of not thousands but hundreds of thousands — the kind that sways elections. And this would require reaching out to all sorts of other groups affected by AIDS, such as Latinos — who are Catholic.

"I just remember my first thought being, well that's the end of our coalition building with the Latino community," Barr says. "That's it. Nobody's going to talk to us."

ACT UP continued to mount demonstrations — there are active chapters of the organization to this day. But to Barr it marked the beginning of the end of ACT UP's effectiveness.

"It was a turning point where venting one's anger took precedent over political strategy," he says.

Within a year Barr and many others who had been central to the organization's meetings with top researchers had parted ways — splitting off into groups with a more traditional style of lobbying and politicking.

As for Petrelis, he has no regrets.

In general, he disputes the notion that ACT UP became less strategic and effective from that point on. And while he concedes, what happened at St. Patrick's Cathedral was unplanned and not in service of any tactical objective, he argues in the broader scheme it was deeply necessary.

"It was a catharsis finally happening," he says.

And not just for the activists in the cathedral, he says. Petrelis has been in movie theaters when David France's documentary has been shown.

When that scene comes on — of his younger self screaming at the archbishop — "people stand up," he says, "and they applaud me." Copyright 2019 NPR. To see more, visit https://www.npr.org.