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"ACT UP's ethos was that they had united in anger," he says. France's documentary includes footage of the moment — Petrelis standing on the pew, other activists taking up the chant "Stop it! 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. "They were no longer invisible sufferers of a disease. ACT UP protested the FDA for its slow drug-approval policy which resulted in thousands dead from lack of access to life-saving drugs. We lost everybody.". The gay community's mounting frustration finally boiled over in an explosive show of anger. An activist lined up for communion, then took the wafer the priest had given him, and crumpled it. Petrelis says he broke down crying. AIDS activist group ACT UP organized numerous protests on Wall Street in the 1980s. The activists advanced in rows, blocking the entrances. 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. Images from the documentary "How to Survive a Plague" by David France "I just thought because I was so angry that there should have been more angry people," he recalls. And only one private pharmaceutical company was seriously pursuing a treatment. Petrelis remembers exploding at one of them: "I don't want to write my will! October 11, 1988 -- ACT UP, joined by the national ACT.NOW coalition, shuts down the FDA headquarters in Rockville, Maryland. The upshot of all this: "What they were able to revolutionize was really the very way that drugs are identified and tested," says France. And sitting in that pristine exam room, Petrelis made his first act of protest: "I took out a cigarette.". But an organization that uses anger as a tool also faces a challenge. With a supersized heroin spoon in tow, activists slammed the FDA at a protest, claiming the agency has done too little to address the opioid crisis. Political Responses to the AIDS Crisis." In general, he disputes the notion that ACT UP became less strategic and effective from that point on. At the second Wall Street action, "over a hundred people got arrested," Barr says. 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. He'd found an affordable apartment — not far from the gay mecca of Greenwich Village. On March 24, 1987, 250 members of ACT-UP arrived on Wall St in Manhattan at 7am, and began to protest. David Barr had opposed this protest. It was, 'Gay guy spits body of Christ out on the floor.' It was no longer untouchable.” Jim Hubbard, an ACT UP member and maker of the documentary “United In Anger,” said, “I … France says the two prongs of ACT UP's strategy were equally important. And not just for the activists in the cathedral, he says. When that scene comes on — of his younger self screaming at the archbishop — "people stand up," he says, "and they applaud me. The work he was doing to set up support systems felt vital. "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. I've got to diaper somebody. He went to a doctor, who ran a new kind of test, and gave Petrelis the verdict: "You have AIDS.". hide caption. ". There's no question we are in angry times. Then an even bigger showdown on Wall Street. "It was a war zone," Barr recalls. ", Images from the documentary "How to Survive a Plague" by David France. Within days the FDA agreed to meet. Barr says the demonstrations started off as a simple release: "We were angry and we needed to express ourselves. ". "Outrageous Practices: How Gender Bias Threatens Women's Health." Back then he felt too overwhelmed to give much thought to asserting his anger. Many of them were people who had never contemplated civil disobedience before. He'd landed a cool job working for a film publicist who mostly handled foreign art films. 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 … More than 6,000 Americans had already died. • 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. This page was last edited on 22 December 2020, at 23:31. ", Demonstrators from the organization ACT UP protest in front of the headquarters of the Food and Drug Administration. But this time, says Petrelis, "something felt different.". 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. But Barr was also starting to grow restless. The group's tactics helped speed the process of finding an effective treatment for AIDS. Still more leaping into the aisle and laying on the floor as police march in to cart them off. Petrelis pointed his finger at the archbishop: "I started screaming, 'Stop killing us! Archbishop O'Connor, Stop killing us!' France says while scientists would probably have made the discovery eventually, there's "no question" ACT UP made it happen sooner. 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 , … Petrelis had a whistle with him — the kind for calling for help when you're being attacked. They were terrifying sufferers of a disease," says France. Brier, Jennifer (2009). 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. hide caption. NOW coalition, shuts down the FDA outside of Washington, DC. This made them extremely intimidating. 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.' ACT UP argued that it was a basic right to have access to experimental drugs as they were a type of health care, and in this protest they demanded the drug approval procedure to be reduced, with the FDA ensuring the efficacy and safety of these drugs. Barr and Petrelis had been to gay rights demonstrations before — pride rallies, candlelight vigils for people who had died of AIDS. I want a cure!". "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.". "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.' In 1996, scientists finally did find the treatment that would keep people alive. FDA History - AIDS Protest. 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. "They would storm people's offices with fake blood and cover people's computers with [it]," he says. Once you get people to tap into their rage — it's hard to control it. 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. Rutgers University Press. ACT UP wanted the Food and Drug Administration to give AIDS patients access to an experimental drug. "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. 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. 162–166, Johansson, Warren and Percy, William A. This was four years after AIDS first made headlines. ACT UP/New York Women and AIDS Book Group (1993). In the process, says France, "ACT UP created a model for patient advocacy within the research system that never existed before.". "I just remember my first thought being, well that's the end of our coalition building with the Latino community," Barr says. But to Barr it marked the beginning of the end of ACT UP's effectiveness. ", Even that didn't feel like enough. We meet with government officials, we distribute the latest medical information, we protest and … That changed when ACT UP began to deploy its anger strategically. And it was profoundly affirming. "You know condemning me as gay, just all that Catholic guilt I had been raised with," he says. "Infectious Ideas: U.S. 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. Then they unleashed their rage to force the decision-makers to hear ACT UP's solutions. At one point, they barged into a meeting of a pharmaceutical company and turned over the shrimp cocktail tables. • ACT UP protests shut down the FDA. Petrelis was part of a smaller group that decided to take the protest inside — to the mass. "It felt powerful. And this would require reaching out to all sorts of other groups affected by AIDS, such as Latinos — who are Catholic. The doctor said he'd give Petrelis a moment to be alone, pull himself together. Outside the church, ACT UP was staging a massive demonstration to call out Archbishop John O'Connor for opposing the use of condoms. The anger is what helped us fight of a sense of hopelessness.". ACT UP continued to mount demonstrations — there are active chapters of the organization to this day. Join NPR in our exploration of anger and what we can learn from this powerful emotion. December 1989: At left, members of ACT UP mount a protest outside St. Patrick's Cathedral in New York. University of North Carolina Press. They were blocking traffic with their bodies. 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. "It was such a terrific feeling to be arrested with my yoga teacher," Petrelis recalls with a chuckle. Top policy makers and scientists were now giving ACT UP's proposals a respectful hearing. 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. "The Making of an AIDS Activist: Larry Kramer" and "ACT UP", pp. Waving signs, including the historic slogan “SILENCE = DEATH,” and chanting “Act Up, Fight AIDS!”, they called attention to the inequitable alliance between the FDA and Burroughs-Wellcome. "I mean, my anger just knew no limits," says Petrelis. Their efforts convinced policy makers to change regulations that resulted in a … 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. South End Press. ". act-up Founded in 1987, AIDS Coalition to Unleash Power (ACT-UP) is an international non-partisan group dedicated to ending the AIDS crisis. ACT UP was one of many organizations around the world launched to challenge discrimination against people with AIDS, and to fight for a comprehensive response to the pandemic. 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. Kramer soon relinquished a leadership role in ACT UP… 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.". 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. Laurence, Leslie (1997). Herstories: Audio/Visual Collections of the LHA", "Latinos ACT UP: Transnational AIDS Activism in the 1990s", "DIVA TV (Damned Interfering Video Activists)", "AIDS Activist Videotape Collection, 1983-2000: Table of Contents", "Men Behaving Viciously; How ACT UP San Francisco spreads spit, fake blood, used cat litter, and potentially deadly misinformation through the AIDS community", ACT UP/Boston (David Stitt) collection, 1986-1994, ACT UP / Boston (Raymond Schmidt and Stephen Skuce) collection, 1987-2007 (bulk 1988-1995), AIDS Activist Videotape Collection, 1983-2000, Women's Action Coalition Records, 1991-1997, Photographs and film regarding ACT UP New York and The Costas, 1987-1991, 2008, AIDS Activist Videotape Collection at the New York Public Library, Documentary "ACT UP, Fight Back, Fight AIDS: 15 Years of ACT UP" (2002), Documentary, "UNITED IN ANGER: A History of ACT UP" (2012), by Jim Hubbard & Sarah Schulman, Bill Bytsura ACT UP Photography Collection at The Fales Library & Special Collections of NYU, Alan Klein papers at The Fales Library & Special Collections of NYU, Jay Blotcher papers at The Fales Library & Special Collections of NYU, Sexuality and gender identity-based cultures, History of Christianity and homosexuality, Timeline of sexual orientation and medicine, SPLC-designated list of anti-LGBT U.S. hate groups, Persecution of homosexuals in Nazi Germany, Significant acts of violence against LGBT people, WHO disease staging system for HIV infection and disease, Diffuse infiltrative lymphocytosis syndrome, People With AIDS Self-Empowerment Movement, Joint United Nations Programme on HIV/AIDS (UNAIDS), President's Emergency Plan for AIDS Relief (PEPFAR), List of countries by HIV/AIDS adult prevalence rate, List of HIV/AIDS cases and deaths registered by region, Reports from the Holocaust: The Making of an AIDS Activist, https://en.wikipedia.org/w/index.php?title=ACT_UP&oldid=995800442, Health and disability rights organizations in the United States, LGBT political advocacy groups in the United States, HIV/AIDS organizations in the United States, Articles with unsourced statements from October 2020, Articles with unsourced statements from November 2010, Wikipedia articles with SUDOC identifiers, Wikipedia articles with WORLDCATID identifiers, Creative Commons Attribution-ShareAlike License. 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. ACT UP protest outside of the Federal Drug Administration building to demand the release of experimental medication for those living with HIV/AIDS in … Demonstrators from the organization ACT UP, angry with the federal government's response to the AIDS crisis, protest in front of the headquarters of … 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. hide caption. 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. All around him fellow gay men were suddenly falling sick with horrific symptoms — skin cancer, extreme weight loss, incontinence. ACT UP/New York Women and AIDS Book Group (1990). October 11, 1988 --ACT UP, joined by the national ACT. The FDA opened up access to experimental drugs soon after. "One group were wearing lab coats that were stained with bloody hands," recalls Barr. At right, activist Michael Petrelis inside the cathedral shouts "Stop killing us!" He believed ACT UP's inside-outside strategy had largely succeeded. The group, having grown in size since it first formed, was able to organize a much larger demonstration of over 1,000 people to protest pharmaceutical companies and government inaction. They kicked off the approach at a government building in suburban Maryland. (Photo: Peter Ansin/Getty Images) O'Connor continued the service. 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. "Rallying together and expressing our anger was a really good replacement for just feeling scared all the time," he says. 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. 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 … 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. The FDA wouldn't even discuss it. "That's it. 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. It's in our politics, our schools and homes. But initially, says France, "the actions had the air of purposeless anger.". J. Scott Applewhite/AP But as central as anger was to ACT UP's success, it would also prove a force for division. For Barr, participating in the outpouring was galvanizing. But their focus was on providing comfort to the sick: buddies to take you to hospital, lawyers to help you write your will. One of the recruits to those self-help groups was a young lawyer named David Barr. 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. 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. "La Mujer, el SIDA, y el Activismo." Demonstrators from the organization ACT UP protest in front of the headquarters of the Food and Drug Administration. All this was unimaginable to Petrelis back in 1985. in the middle of the service. "Our goal was to seize control of the FDA," says Barr. 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. The demonstration was held outside the FDA headquarters in Rockville, Maryland, on October 11th, 1988. to people with AIDS (PWAs), ACT UP erupts in protest at the airline's Two suits are brought against Northwest. This story is part of a series from NPR's Science desk called "The Other Side of Anger." People weren't just chanting or carrying signs. "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. Anger can be a destructive emotion but it can also be a positive force. In retrospect, ACT UP activists said, “The St. Patrick’s protest was seminal and changed the way many saw the Catholic Church. Then one day, Petrelis noticed a sort of blotch on his arm. On March 24, 1988, ACT UP held another demonstration on Broadway and Wall Street, to mark the one-year anniversary of its first action. AIDS activist group ACT UP organized numerous protests on Wall Street in the 1980s. 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. Petrelis has been in movie theaters when David France's documentary has been shown. Then a protest at city hall. I've got to create a legal services program to keep people from being evicted.". ACT UP — the AIDS Coalition To Unleash Power — is a diverse, non-partisan group of individuals, united in anger and committed to direct action to end the AIDS crisis. He did it precisely because he knew it was forbidden. "It was a catharsis finally happening," he says. The impact of the “Seize Control of the FDA” protest, and those that followed, cannot be overstated. Read and listen to stories in the series here. The FDA opened up access to experimental drugs soon after. "But it was never satisfying," he says. ", But in doing so, he says, "we began to realize, 'Oh, this is a tactic that we can put to good use.' South End Press. So hundreds of activists converged on the FDA's headquarters. 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. The group's tactics helped speed the process of finding an effective treatment for AIDS. He started blowing it. Employers were denying them benefits. ROCKVILLE - OCTOBER 11: AIDS activist group ACT UP (AIDS Coalition to Unleash Power) protest at the headquarters of the Food and Drug Administration (FDA… Hospitals were turning them away. For that, ACT UP would need to build this into a movement of not thousands but hundreds of thousands — the kind that sways elections. Read and listen to stories in the series here. The result confirmed his fears. That contradiction came to a head for ACT UP one Sunday in December of 1989 at Manhattan's St. Patrick's Cathedral. 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. In a couple months, officials opened up the policy on access to experimental drugs. Stop it!" In 1988, more than 1,000 ACT UP protesters surrounded the FDA's Maryland building. "What made this work was not just the anger. In the summer of 1985, Mike Petrelis was savoring life as young, openly gay man in New York City. But France says this was decidedly not the norm before ACT UP. Tim Clary/AP Nobody's going to talk to us.". So at first his overriding feeling was, "I don't have time to go yell at politicians. Barr was part of a contingent within ACT UP that felt the time had come for a new phase. They called themselves AIDS Coalition to Unleash Power — or ACT UP. In 1988 the AIDS Coalition to Unleash Power (ACT-UP) organized a demonstration at FDA headquarters in Rockville, Maryland, to protest for greater access to investigational drugs to help treat AIDS patients. "It was a turning point where venting one's anger took precedent over political strategy," he says. ACT UP’s protests helped persuade the FDA to speed the approval of new drugs and Burroughs-Wellcome to lower its price for AZT. Within a year, the process was greatly accelerated. ACT UP protesters close the FDA building to demand the release of experimental medication for those living with HIV/AIDS. "They locked themselves to politicians' desks. The demonstration made national news. Yet the budget for AIDS research was a fraction of what the U.S. government spent on diseases that were far less threatening. "Women, AIDS, and Activism." "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.' He'd been raised Roman Catholic and had a lot of unresolved feelings toward the church. President Ronald Reagan had yet to even say the word AIDS in public. On May 21, 1990, ACT UP "stormed the NIH" to protest the slow pace of research and the limited number of drugs available to treat the disease. On October 11, 1988 over 1,000 protesters from ACT UP surrounded the FDA building in Bethesda Maryland to protest what they saw as numerous problems within the system of producing, developing, and funding AIDS drugs. Protesters demanding faster access to AIDS treatments were arrested by police today as they attempted to take over the headquarters of the Food and Drug Administration in an act … 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. 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