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

In the summer of 1985, Mike Petrelis savored life as an openly gay young man in New York. He had landed an interesting job working for a publicist specializing in the production of foreign art films. He had found an affordable apartment – not far from the gay mecca of Greenwich Village.

Then one day, Petrelis noticed a kind of stain on his arm.

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

"He said that if I were lucky, I would have six months to maybe two years," recalls Petrelis.

He was 26 years old.

Petrelis says that he broke down crying. The doctor said that it would give Petrelis a moment to find himself alone and get himself together again.

And, sitting in this blank examination room, Petrelis made his first gesture of protest: "I took out a cigarette."

He did it precisely because he knew that it was forbidden.

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

But in the months that followed, Petrelis quickly changed his focus when he began to learn how little government and medical services had done to deal with a crisis that was at the time, mostly affected homobadual men. It was four years after AIDS made headlines. More than 6,000 Americans were already dead. Yet, the budget allocated for AIDS research was a fraction of what the US government spent on much less threatening diseases. President Ronald Reagan has not even spoken the word AIDS in public yet. And only one private pharmaceutical company was seriously pursuing treatment.

"I mean, my anger knows no bounds," says Petrelis.

Over the next decade, this rage would push not only the Petrelis, but also 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 radically change the way medical research is conducted – paving the way for the discovery of a treatment that now keeps alive about half a million dollars. HIV positive Americans and millions of others around the world.

But as central as the success of ACT UP was, anger would also prove to be a dividing force.

"It was a war zone"

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

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

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

Petrelis remembers having exploded in front of one of them: "I do not want to write my will! I want a cure!"

One of the new members of these self-help groups was a young lawyer, David Barr. At the time, he felt too overwhelmed to care about his anger.

All around him homobadual men suddenly fell ill with horrible symptoms – skin cancer, extreme weight loss, incontinence. Hospitals refused them. Employers denied them benefits.

"It was a war zone," Barr recalls. So, at the beginning, his dominant feeling was, "I do not have time to scream at politicians, I have to put some one in diaper." I need to create a program of legal services to prevent people to be evicted. "

But Barr was also starting to get agitated. The work he was doing to put in place support systems was vital.

"But that has never been satisfactory," he says. "Because the help we were providing was really temporary – we lost everyone."

Boiling on

At the beginning of 1987, when the number of deaths in the United States reached 40,000 and the number of HIV infections in the world reached 5 to 10 million, the threat began to feel apocalyptic. The growing frustration of the gay community eventually came down to an explosion of anger.

Hundreds of homobadual men and their followers took to the streets of New York to let off steam, starting with a protest on Wall Street. Then a demonstration at the town hall. Then an even bigger confrontation on Wall Street.

Barr and Petrelis had previously participated in gay rights protests: Pride rallies, candlelight vigils for people who have died of AIDS. But this time, says Petrelis, "something was different".

People did not just sing or carry signs. They blocked the circulation with their bodies.

In the second Wall Street action, "more than a hundred people were arrested," Barr said. Many of them were people who had never considered civil disobedience before.

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

And it was deeply affirmed. "All those men and women screaming loudly – I felt that they were taking my anger and pbading it on to the world."

For Barr, participating in the effusion was a galvanization.

"Gathering strength and expressing our anger was a very good substitute because we were just scared all the time," he says.

"It was powerful, and it allowed us to say, 'Okay, we have to do something other than just buy food, take people to the hospital and plan memorial services.' Anger is what helped us fight a feeling of hopelessness. "

Soon, the group – which the New York protesters named ACT UP at an early planning meeting – nationalized itself, with thousands of people across the country organizing similar actions.

Become strategic

ACT UP has quickly made a name with a tactic that proved resolutely conflictual, says David France, author of a history of AIDS activism called How to survive a plague, as well as a 2012 documentary of the same name.

"The philosophy of ACT UP was that they were united in anger," he says.

"They would invade people's offices with fake blood and cover people's computers with [it], "he says. They locked themselves in the politicians' office. At one point, they broke into a meeting of a pharmaceutical company and handed over the shrimp badtail tables. "

This made them extremely intimidating. "They were no longer invisible patients, they were terrifying of the sick," says France.

But at first, says France, "the actions looked like an angry goal."

This changed when ACT UP began to deploy his anger strategically.

According to Barr, the protests began with a simple release: "We were angry and we had to express ourselves."

But in doing so, he said, "We started to understand," Oh, that's a tactic we can use wisely. ""

They therefore took the initiative to identify the specific barriers to government policy and clinical trials that stood in the way of what ACT UP wanted the most: a cure. Then, they went out of their way to force the decision-makers to take note of the solutions proposed by ACT UP.

They launched the approach in a government building park in the suburbs of Maryland.

"Our goal was to take control of the FDA," said Barr.

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

Hundreds of activists converged on the FDA headquarters.

"A group was wearing lab coats stained with bloody hands," Barr recalls. "Other people brought headstones that they made and went to bed in front of the building and held the gravestones:" FDA paperwork "dead."

Activists advanced in rows, blocking the entrances. The event made national news.

In a few days, the FDA agreed to meet. In a few months, officials have opened the policy on access to experimental drugs.

France said that both parts of the ACT UP strategy were of equal importance. The aggressive demonstrations put them one foot in the door, but that would have made no difference if they had not done the homework necessary to come up with viable proposals once they got there. are encountered.

"What made this job is not only anger, but anger coupled with intelligence," said France.

ACT UP ended up qualifying this approach as an "internal-external 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 leading scientists.

The result of all this: "What they managed to revolutionize is really the way in which drugs are identified and tested," says France.

This involved putting an end to the common practice of testing drugs on a small number of people over a long period of time in order to test a huge sample of people over a much shorter period of time, which considerably accelerated the time required to complete drug trials.

Similarly, ACT UP emphasized that researchers and pharmaceutical companies seeking AIDS cure also seek treatment for opportunistic infections that kill AIDS patients while they wait for their recovery.

In the process, says France, "ACT UP has created a model of patient advocacy within the research system that did not exist before."

Today, it seems natural that people with an illness – whether it's bad cancer or diabetes – should have a say in how it is studied and treated. But France said it was definitely not the norm before ACT UP.

In 1996, scientists finally found the treatment that would keep people alive. France claims that if the scientists would probably have made the discovery, there is no doubt that ACT UP made it earlier.

But an organization that uses anger as a tool must also face a challenge. Once you incite people to exploit their anger, it is difficult to control it.

"Stop killing us!"

This contradiction gained momentum for ACT UP on a Sunday in December 1989 at St. Patrick's Cathedral in Manhattan.

Outside the church, ACT UP was organizing a mbadive protest to call on Archbishop John O'Connor who opposed the use of condoms.

Petrelis was part of a smaller group who decided to take the demonstration inside – to the mbades.

He had been raised Catholic and had many unresolved feelings towards the church.

"You know how to condemn me as gay, just all the Catholic guilt with which I was raised," he says.

They did not want to disrespect the parishioners. The plan was therefore to wait for O & # 39; Connor to begin his sermon, interrupt him by reading a brief statement, then turn his back on him in silent protest.

But while Petrelis watched his fellow activists start, he said something in him was moved: "I felt that there was just not enough anger to be heard."

Petrelis had a whistle with him – kind of asking for help when you are attacked. He started to blow.

"Strongly," he recalls, "I got up on the bench, literally denouncing the centuries of horrendous treatment by the church of gays and women."

Even that did not seem to me enough. Petrelis pointed at the Archbishop: "I started shouting," Stop killing us! Archbishop O'Connor, stop killing us! "

The French documentary includes footage of the moment – Petrelis standing on the bench, other activists singing the song "Stop it! Stop it!" Still more people jumping in the aisle and lying on the ground while the police were heading towards them to carry them.

O & # 39; Connor continued the service. An activist lined up for communion, then took the wafer that the priest had given him and wrinkled it.

The results

David Barr was opposed to this event. The result confirmed his fears.

"The next day, one of the newspapers did not write:" Look at all those awful policies against HIV that the church promotes. "It was:" A gay guy spits the body of Christ on the floor. " . "

Barr was part of a contingent within ACT UP who felt it was time to move to a new phase. He believed that the internal strategy of ACT UP had largely succeeded. Key decision-makers and scientists now accorded ACT UP's proposals a respectful audience.

But AIDS activists have not yet convinced the political clbad to mobilize all the federal government's resources for the search for a cure. For this, ACT UP should integrate this into a movement not of thousands but of hundreds of thousands – the kind that tilts the elections. And that would require reaching out to all kinds of other AIDS-affected groups, such as Latinos – who are Catholic.

"I just remember my first thought: well, it's the end of our coalition with the Latin American community," Barr said. "That's it, no one is going to talk to us."

ACT UP has continued to organize events – there are currently active chapters of the organization. But for Barr, this marked the beginning of the end of ACT UP's effectiveness.

"It was a turning point where anger control took precedence over political strategy," he said.

In the space of one year, Barr and many other people who had played a leading role in organizing meetings with the greatest researchers had separated – separating themselves in groups with a more traditional style of lobbying and politics.

Petrelis, meanwhile, does not regret anything.

In general, he challenges the notion that ACT UP has become less strategic and effective from that point on. And while he concedes, what happened at St. Patrick's Cathedral was not planned and served no tactical purpose, he argues that, in a broader scheme, he was deeply necessary.

"It was finally a catharsis," he says.

And not just for the cathedral activists, he says. Petrelis was in the theaters after the screening of David France's documentary.

When this scene occurs – his young man shouts to the Archbishop – "people get up," he says, "and they cheer me on."