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. October 11, 1988 -- ACT UP, joined by the national ACT.NOW coalition, shuts down the FDA headquarters in Rockville, Maryland. The work he was doing to set up support systems felt vital. And sitting in that pristine exam room, Petrelis made his first act of protest: "I took out a cigarette.". AIDS activist group ACT UP organized numerous protests on Wall Street in the 1980s. 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. act-up Founded in 1987, AIDS Coalition to Unleash Power (ACT-UP) is an international non-partisan group dedicated to ending the AIDS crisis. 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. 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. December 1989: At left, members of ACT UP mount a protest outside St. Patrick's Cathedral in New York. ", But in doing so, he says, "we began to realize, 'Oh, this is a tactic that we can put to good use.' They were terrifying sufferers of a disease," says France. ACT UP continued to mount demonstrations — there are active chapters of the organization to this day. 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. This story is part of a series from NPR's Science desk called "The Other Side of Anger." Rutgers University Press. 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. The FDA wouldn't even discuss it. Then an even bigger showdown on Wall Street. "What made this work was not just the anger. hide caption. "They would storm people's offices with fake blood and cover people's computers with [it]," he says. "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. One of the recruits to those self-help groups was a young lawyer named David Barr. 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. Read and listen to stories in the series here. 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. "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. "I just thought because I was so angry that there should have been more angry people," he recalls. He'd landed a cool job working for a film publicist who mostly handled foreign art films. Read and listen to stories in the series here. And it was profoundly affirming. "That's it. But the anger coupled with the intelligence," says France. "Women, AIDS, and Activism." ", Even that didn't feel like enough. "It was a war zone," Barr recalls. Political Responses to the AIDS Crisis." J. Scott Applewhite/AP In 1996, scientists finally did find the treatment that would keep people alive. That changed when ACT UP began to deploy its anger strategically. The group's tactics helped speed the process of finding an effective treatment for AIDS. Laurence, Leslie (1997). 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. to people with AIDS (PWAs), ACT UP erupts in protest at the airline's Two suits are brought against Northwest. The upshot of all this: "What they were able to revolutionize was really the very way that drugs are identified and tested," says France. Then they unleashed their rage to force the decision-makers to hear ACT UP's solutions. Top policy makers and scientists were now giving ACT UP's proposals a respectful hearing. The demonstration made national news. It was, 'Gay guy spits body of Christ out on the floor.' But Barr was also starting to grow restless. Demonstrators from the organization ACT UP protest in front of the headquarters of the Food and Drug Administration. Petrelis pointed his finger at the archbishop: "I started screaming, 'Stop killing us! It was no longer untouchable.” Jim Hubbard, an ACT UP member and maker of the documentary “United In Anger,” said, “I … 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. But as central as anger was to ACT UP's success, it would also prove a force for division. 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 … Their efforts convinced policy makers to change regulations that resulted in a … ACT UP protest outside of the Federal Drug Administration building to demand the release of experimental medication for those living with HIV/AIDS in … October 11, 1988 --ACT UP, joined by the national ACT. "I just remember my first thought being, well that's the end of our coalition building with the Latino community," Barr says. Tim Clary/AP NOW coalition, shuts down the FDA outside of Washington, DC. At the second Wall Street action, "over a hundred people got arrested," Barr says. The group's tactics helped speed the process of finding an effective treatment for AIDS. More than 6,000 Americans had already died. "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.". ". ACT UP came to call this approach its "inside-outside strategy." 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. Barr says the demonstrations started off as a simple release: "We were angry and we needed to express ourselves. 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. "It was such a terrific feeling to be arrested with my yoga teacher," Petrelis recalls with a chuckle. Archbishop O'Connor, Stop killing us!' University of North Carolina Press. Employers were denying them benefits. 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. The gay and lesbian community had created a dynamic network of self-help groups in response to the crisis. Hospitals were turning them away. • ACT UP protests shut down the FDA. Anger can be a destructive emotion but it can also be a positive force. 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. Join NPR in our exploration of anger and what we can learn from this powerful emotion. "Because whatever help we were providing was really temporary. 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. "You know condemning me as gay, just all that Catholic guilt I had been raised with," he says. Barr was part of a contingent within ACT UP that felt the time had come for a new phase. Specifically the protesters wanted an end to: Double blind studies that left some AIDS patients with nothing but sugar pills. "They were no longer invisible sufferers of a disease. 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. He did it precisely because he knew it was forbidden. France's documentary includes footage of the moment — Petrelis standing on the pew, other activists taking up the chant "Stop it! hide caption. "It felt powerful. ACT UP protesters close the FDA building to demand the release of experimental medication for those living with HIV/AIDS. 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. ACT UP’s protests helped persuade the FDA to speed the approval of new drugs and Burroughs-Wellcome to lower its price for AZT. All this was unimaginable to Petrelis back in 1985. The doctor said he'd give Petrelis a moment to be alone, pull himself together. The anger is what helped us fight of a sense of hopelessness.". "Our goal was to seize control of the FDA," says Barr. There's no question we are in angry times. 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 … "It was a turning point where venting one's anger took precedent over political strategy," he says. I want a cure!". 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. President Ronald Reagan had yet to even say the word AIDS in public. ", Images from the documentary "How to Survive a Plague" by David France. in the middle of the service. Images from the documentary "How to Survive a Plague" by David France So at first his overriding feeling was, "I don't have time to go yell at politicians. ", Demonstrators from the organization ACT UP protest in front of the headquarters of the Food and Drug Administration. 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 , … The gay community's mounting frustration finally boiled over in an explosive show of anger. 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.' David Barr had opposed this protest. This was four years after AIDS first made headlines. In the process, says France, "ACT UP created a model for patient advocacy within the research system that never existed before.". 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. It's in our politics, our schools and homes. In a couple months, officials opened up the policy on access to experimental drugs. The impact of the “Seize Control of the FDA” protest, and those that followed, cannot be overstated. So hundreds of activists converged on the FDA's headquarters. Barr and Petrelis had been to gay rights demonstrations before — pride rallies, candlelight vigils for people who had died of AIDS. Outside the church, ACT UP was staging a massive demonstration to call out Archbishop John O'Connor for opposing the use of condoms. In general, he disputes the notion that ACT UP became less strategic and effective from that point on. I've got to create a legal services program to keep people from being evicted.". On March 24, 1987, 250 members of ACT-UP arrived on Wall St in Manhattan at 7am, and began to protest. Within days the FDA agreed to meet. I've got to diaper somebody. "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. When that scene comes on — of his younger self screaming at the archbishop — "people stand up," he says, "and they applaud me. 162–166, Johansson, Warren and Percy, William A. "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.' An activist lined up for communion, then took the wafer the priest had given him, and crumpled it. "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.' At one point, they barged into a meeting of a pharmaceutical company and turned over the shrimp cocktail tables. ACT UP/New York Women and AIDS Book Group (1990). He'd found an affordable apartment — not far from the gay mecca of Greenwich Village. ACT UP/New York Women and AIDS Book Group (1993). At right, activist Michael Petrelis inside the cathedral shouts "Stop killing us!" 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. 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. 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 … And this would require reaching out to all sorts of other groups affected by AIDS, such as Latinos — who are Catholic. Still more leaping into the aisle and laying on the floor as police march in to cart them off. South End Press. Then a protest at city hall. He'd been raised Roman Catholic and had a lot of unresolved feelings toward the church. 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. Demonstrators from the organization ACT UP, angry with the federal government's response to the AIDS crisis, protest in front of the headquarters of … "Outrageous Practices: How Gender Bias Threatens Women's Health." 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. "La Mujer, el SIDA, y el Activismo." 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. ". But this time, says Petrelis, "something felt different.". "But it was never satisfying," he says. "I mean, my anger just knew no limits," says Petrelis. Yet the budget for AIDS research was a fraction of what the U.S. government spent on diseases that were far less threatening. France says while scientists would probably have made the discovery eventually, there's "no question" ACT UP made it happen sooner. The demonstration was held outside the FDA headquarters in Rockville, Maryland, on October 11th, 1988. O'Connor continued the service. He went to a doctor, who ran a new kind of test, and gave Petrelis the verdict: "You have AIDS.". 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. In retrospect, ACT UP activists said, “The St. Patrick’s protest was seminal and changed the way many saw the Catholic Church. 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. People weren't just chanting or carrying signs. Back then he felt too overwhelmed to give much thought to asserting his anger. The FDA opened up access to experimental drugs soon after. Kramer soon relinquished a leadership role in ACT UP… But to Barr it marked the beginning of the end of ACT UP's effectiveness. hide caption. "Rallying together and expressing our anger was a really good replacement for just feeling scared all the time," he says. AIDS activist group ACT UP organized numerous protests on Wall Street in the 1980s. That contradiction came to a head for ACT UP one Sunday in December of 1989 at Manhattan's St. Patrick's Cathedral. Nobody's going to talk to us.". But an organization that uses anger as a tool also faces a challenge. "Infectious Ideas: U.S. This page was last edited on 22 December 2020, at 23:31. 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. But initially, says France, "the actions had the air of purposeless anger.". The activists advanced in rows, blocking the entrances. 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. ACT UP protested the FDA for its slow drug-approval policy which resulted in thousands dead from lack of access to life-saving drugs. Within a year, the process was greatly accelerated. "The Making of an AIDS Activist: Larry Kramer" and "ACT UP", pp. He started blowing it. For that, ACT UP would need to build this into a movement of not thousands but hundreds of thousands — the kind that sways elections. They were blocking traffic with their bodies. This made them extremely intimidating. (Photo: Peter Ansin/Getty Images) The FDA opened up access to experimental drugs soon after. 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. Petrelis says he broke down crying. Petrelis remembers exploding at one of them: "I don't want to write my will! We lost everybody.". But France says this was decidedly not the norm before ACT UP. They kicked off the approach at a government building in suburban Maryland. France says the two prongs of ACT UP's strategy were equally important. ". "They locked themselves to politicians' desks. Within a week, the FDA begins a "fast-track" policy allowing public access to lifesaving drugs still in clinical trials. 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. South End Press. 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. 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. ". "It was a catharsis finally happening," he says. 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. In 1988, more than 1,000 ACT UP protesters surrounded the FDA's Maryland building. Many of them were people who had never contemplated civil disobedience before. 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 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. • 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 one day, Petrelis noticed a sort of blotch on his arm. And only one private pharmaceutical company was seriously pursuing a treatment. 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's ethos was that they had united in anger," he says. We meet with government officials, we distribute the latest medical information, we protest and … "One group were wearing lab coats that were stained with bloody hands," recalls Barr. Petrelis had a whistle with him — the kind for calling for help when you're being attacked. Once you get people to tap into their rage — it's hard to control it. He believed ACT UP's inside-outside strategy had largely succeeded. 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. 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. Brier, Jennifer (2009). 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. The result confirmed his fears. 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. For Barr, participating in the outpouring was galvanizing. 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. Petrelis was part of a smaller group that decided to take the protest inside — to the mass. In the summer of 1985, Mike Petrelis was savoring life as young, openly gay man in New York City. 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