The demonstration was held outside the FDA headquarters in Rockville, Maryland, on October 11th, 1988. "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. "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.". In general, he disputes the notion that ACT UP became less strategic and effective from that point on. So hundreds of activists converged on the FDA's headquarters. He went to a doctor, who ran a new kind of test, and gave Petrelis the verdict: "You have AIDS.". "Because whatever help we were providing was really temporary. One of the AIDS Coalition to Unleash Power’s (ACT UP) most successful and media-effective actions in the fight against the epidemic, the protest resulted in a breakthrough: that same week, the FDA announced new procedures to shorten the approval of life-prolonging medications by two years. Specifically the protesters wanted an end to: Double blind studies that left some AIDS patients with nothing but sugar pills. 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. "Infectious Ideas: U.S. He'd been raised Roman Catholic and had a lot of unresolved feelings toward the church. "What made this work was not just the anger. That contradiction came to a head for ACT UP one Sunday in December of 1989 at Manhattan's St. Patrick's Cathedral. The following chronological accounts of New York ACT UP actions are drawn from Douglas Crimp's history of ACT UP, the ACT UP Oral History Project, and the online Capsule History of ACT UP, New York. "But it was never satisfying," he says. "ACT UP's ethos was that they had united in anger," he says. At one point, they barged into a meeting of a pharmaceutical company and turned over the shrimp cocktail tables. During its peak years, ACT-UP spent much of its time focused on drug availability and pricing, placing significant pressure on the FDA through visible protest … J. Scott Applewhite/AP • The first World AIDS day is held on December 1 st. 1989 • Scientists find that even before AIDS symptoms develop, HIV replicates wildly in the blood. ". Then an even bigger showdown on Wall Street. For that, ACT UP would need to build this into a movement of not thousands but hundreds of thousands — the kind that sways elections. Tim Clary/AP When that scene comes on — of his younger self screaming at the archbishop — "people stand up," he says, "and they applaud me. Nobody's going to talk to us.". Within a year, the process was greatly accelerated. And only one private pharmaceutical company was seriously pursuing a treatment. They kicked off the approach at a government building in suburban Maryland. 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. This historical demonstration against the FDA condemns the lethargy of this dysfunctional bureaucracy which is responsible for the testing and approval of possible AIDS treatments. 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.". ", But in doing so, he says, "we began to realize, 'Oh, this is a tactic that we can put to good use.' The work he was doing to set up support systems felt vital. (Photo: Peter Ansin/Getty Images) This story is part of a series from NPR's Science desk called "The Other Side of Anger." He started blowing it. Stop it!" Within days the FDA agreed to meet. President Ronald Reagan had yet to even say the word AIDS in public. ON OCTOBER 11, 1988, ACT UP MEMBERS FROM AROUND THE COUNTRY MADE THEIR WAY TO THE BLOCK LIKE FDA BUILDING, PERHAPS 1500 ACTIVISTS SURROUNDING THE BUILDING. "I just remember my first thought being, well that's the end of our coalition building with the Latino community," Barr says. Images from the documentary "How to Survive a Plague" by David France ROCKVILLE - OCTOBER 11: AIDS activist group ACT UP (AIDS Coalition to Unleash Power) protest at the headquarters of the Food and Drug Administration (FDA… The FDA opened up access to experimental drugs soon after. Read and listen to stories in the series here. hide caption. Then they unleashed their rage to force the decision-makers to hear ACT UP's solutions. And it was profoundly affirming. In 1990, ACT UP protesters occupied the National Institutes of Health campus, and called for scientists to develop more drugs for people with AIDS and the federal government to disseminate drugs equitably. Fed Up with Washington, ALS Advocates Consider ACT UP’s Take-No-Prisoners Approach Patients want drugs fast-tracked through FDA approval process By Nicholas Florko , … People weren't just chanting or carrying signs. I want a cure!". But to Barr it marked the beginning of the end of ACT UP's effectiveness. "It was a war zone," Barr recalls. Kramer soon relinquished a leadership role in ACT UP… "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. NOW coalition, shuts down the FDA outside of Washington, DC. The activists advanced in rows, blocking the entrances. The upshot of all this: "What they were able to revolutionize was really the very way that drugs are identified and tested," says France. The group's tactics helped speed the process of finding an effective treatment for AIDS. 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. Brier, Jennifer (2009). "They would storm people's offices with fake blood and cover people's computers with [it]," he says. in the middle of the service. ", Images from the documentary "How to Survive a Plague" by David France. The protesters say they plan to emulate the aggressive approaches of the AIDS activists who protested the FDA’s slow work on that disease in the 1980s. I've got to create a legal services program to keep people from being evicted.". "It was a catharsis finally happening," he says. And this would require reaching out to all sorts of other groups affected by AIDS, such as Latinos — who are Catholic. ". "It felt powerful. Barr was part of a contingent within ACT UP that felt the time had come for a new phase. Petrelis says he broke down crying. ACT UP protest outside of the Federal Drug Administration building to demand the release of experimental medication for those living with HIV/AIDS in … This made them extremely intimidating. 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. We lost everybody.". France's documentary includes footage of the moment — Petrelis standing on the pew, other activists taking up the chant "Stop it! But their focus was on providing comfort to the sick: buddies to take you to hospital, lawyers to help you write your will. Barr says the demonstrations started off as a simple release: "We were angry and we needed to express ourselves. 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. It was, 'Gay guy spits body of Christ out on the floor.' "They locked themselves to politicians' desks. Hospitals were turning them away. Their efforts convinced policy makers to change regulations that resulted in a … "Rallying together and expressing our anger was a really good replacement for just feeling scared all the time," he says. 162–166, Johansson, Warren and Percy, William A. At the second Wall Street action, "over a hundred people got arrested," Barr says. "I just thought because I was so angry that there should have been more angry people," he recalls. All around him fellow gay men were suddenly falling sick with horrific symptoms — skin cancer, extreme weight loss, incontinence. "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.' "The Making of an AIDS Activist: Larry Kramer" and "ACT UP", pp. AIDS activist group ACT UP organized numerous protests on Wall Street in the 1980s. France says while scientists would probably have made the discovery eventually, there's "no question" ACT UP made it happen sooner. The group's tactics helped speed the process of finding an effective treatment for AIDS. As more and more gay men died in the mid-1980s, and homophobia flourished, ACT UP staged theatrical protests at the Food and Drug Administration, on Wall Street and at New York’s City Hall. The gay community's mounting frustration finally boiled over in an explosive show of anger. ACT UP protested the FDA for its slow drug-approval policy which resulted in thousands dead from lack of access to life-saving drugs. "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. In retrospect, ACT UP activists said, “The St. Patrick’s protest was seminal and changed the way many saw the Catholic Church. It was no longer untouchable.” Jim Hubbard, an ACT UP member and maker of the documentary “United In Anger,” said, “I … "It was a turning point where venting one's anger took precedent over political strategy," he says. ". Top policy makers and scientists were now giving ACT UP's proposals a respectful hearing. He'd landed a cool job working for a film publicist who mostly handled foreign art films. Reagan had yet to even say the word AIDS in public, What We've Learned Treating People With HIV Can Make Care Better For Us All, keeps alive an estimated half-million HIV-positive Americans, worldwide HIV infections reaching 5 to 10 million, Halting U.S. HIV Epidemic By 2030: Difficult But Doable. 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. They were terrifying sufferers of a disease," says France. September 14, 1989: An ACT UP protest of pharmaceutical price-gouging on the floor of the New York Stock Exchange stopped trading for the first time in history. ACT UP continued to mount demonstrations — there are active chapters of the organization to this day. And not just for the activists in the cathedral, he says. It's in our politics, our schools and homes. The impact of the “Seize Control of the FDA” protest, and those that followed, cannot be overstated. Demonstrators from ACT UP, angry with the federal government’s response to the AIDS crisis, protest in front of the headquarters of the Food and Drug Administration in … Act Up Protest At FDA ROCKVILLE - OCTOBER 11: Protesters prepare to hang an effigy of Ronald Regan at a protest organized by AIDS activist group ACT UP (AIDS Coalition to Unleash Power) at the headquarters of the Food and Drug Administration (FDA) on October 11, 1988 in Rockville, Maryland. Join NPR in our exploration of anger and what we can learn from this powerful emotion. But an organization that uses anger as a tool also faces a challenge. In 1988, more than 1,000 ACT UP protesters surrounded the FDA's Maryland building. But the anger coupled with the intelligence," says France. The FDA wouldn't even discuss it. This page was last edited on 22 December 2020, at 23:31. 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