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