{"id":714,"date":"2026-06-27T17:35:54","date_gmt":"2026-06-27T17:35:54","guid":{"rendered":"https:\/\/cityrelocationnews.com\/?p=714"},"modified":"2026-06-27T17:35:54","modified_gmt":"2026-06-27T17:35:54","slug":"how-act-up-changed-america","status":"publish","type":"post","link":"https:\/\/cityrelocationnews.com\/?p=714","title":{"rendered":"How ACT UP Changed America"},"content":{"rendered":"
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One day in June, 1990, at the height of the AIDS<\/em> epidemic, I sat in the auditorium of San Francisco\u2019s Moscone Center and watched as hundreds of activists pelted Louis\u00a0W. Sullivan, the Secretary of Health and Human Services, with condoms. Sullivan had been attempting to deliver the closing address at the 6th International AIDS<\/em> Conference. The protesters, from the AIDS<\/em> Coalition to Unleash Power, or ACT UP<\/em>, were there to stop him. Shouts of \u201cshame, shame, shame\u201d were accompanied by whistles and air horns. Like many people who were in the audience that day\u2014I was there as a Washington Post<\/em> reporter\u2014I remember everything about the speech except what Sullivan said. Which was exactly what ACT UP<\/em> wanted. The group had been formed to force a negligent government to take AIDS<\/em> seriously. Not every federal official came under attack that day. Just an hour earlier, Anthony\u00a0S. Fauci, the country\u2019s chief AIDS<\/em> scientist, had received a standing ovation after he essentially endorsed the protesters\u2019 agenda, warning his colleagues that they \u201ccannot and should not dismiss activists merely on the basis of the fact that they are not trained scientists.\u201d<\/p>\n

Read more Gay Pride and Stonewall, Through the Eyes of Fred W. McDarrah<\/a><\/p>\n

It was a triumphant moment for ACT UP<\/em>, which had become known for its outrageous stunts. Behind what seemed like radical unity, however, the organization had already begun to split into two distinct camps. One believed that the best way to advance the cause was to continue to protest\u2014loudly. The other did not reject public actions but didn\u2019t focus on them; it was known as the Science Club, and had formed a kind of academy within ACT UP<\/em>.<\/p>\n

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In \u201cLet the Record Show: A Political History of ACT UP<\/em> New York, 1987-1993\u201d (Farrar, Straus & Giroux), Sarah Schulman, a novelist, journalist, and activist, chronicles the early years of a vigorously oppositional group that was itself riven by discord and factionalism. Any history of a movement presents an argument about its identity\u2014about which internal tendencies most faithfully represent its mission and which betray it. Schulman has strong views on this subject. On one point, though, there can be little disagreement. When ACT UP<\/em> began, its founders could not have guessed how high the group would soar; they would have been even more surprised by the particular conflicts that brought it down to earth.<\/p>\n

By the time ACT UP<\/em> was born, in 1987, tens of thousands of Americans\u2014mostly gay men\u2014had died of AIDS<\/em>, and more were dying every day, even as the government remained largely indifferent. Early that March, Larry Kramer, the writer and activist who had helped found the Gay Men\u2019s Health Crisis, delivered a speech at New York\u2019s Lesbian and Gay Community Services Center, on West Thirteenth Street. \u201cO.K., I want this half of the room to stand up,\u2019\u2019 he later recalled saying. \u201cI looked around at those kids and I said to the people standing up, \u2018You are all going to be dead in five years. Every one of you fuckers.\u2019 I was livid. I said, \u2018How about doing something about it? Why just line up for the cattle cars?\u2019\u00a0\u201d<\/p>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n

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The AIDS<\/em> Coalition to Unleash Power was formed two days later. Its members met at the Center on Monday nights. They came to plan actions and to socialize but also to get answers. More than anything, it was a safe place for people who had nowhere else to turn. They were, Schulman writes, \u201ca despised group of people, with no rights, facing a terminal disease for which there were no treatments. Abandoned by their families, government, and society.\u201d The New York membership expanded from an initial hardcore cadre of several dozen to several thousand, including many people who were neither infected with H.I.V. nor at much risk of becoming so. Although plenty of other cities started their own chapters, ACT UP NY<\/em> was always at the center of the movement.<\/p>\n

ACT UP<\/em> members lived by a creed set out by Ann Northrop, one of the organization\u2019s more media-savvy leaders: \u201cActions are always, always, always planned to be dramatic enough to capture public attention.\u2019\u2019 The activists delivered. They wrapped the home of the North Carolina senator Jesse Helms in a giant yellow condom; invaded St.\u00a0Patrick\u2019s Cathedral during Mass; laid siege to the Food and Drug Administration (\u201cHey, hey, F.D.A., how many people have you killed today?\u201d); and dumped the ashes of comrades who had died of AIDS<\/em> on the White House lawn. These and many other high-profile interventions raised awareness about AIDS<\/em>. But the group\u2019s most important accomplishments were not as easily captured in headlines. Because so many people with AIDS<\/em> were forced to live on the streets, ACT UP<\/em> members founded a philanthropy that evolved into Housing Works, which directed resources (including money raised by a chain of thrift shops) toward AIDS<\/em> services and homelessness. ACT UP<\/em> helped establish the first successful needle-exchange programs in New York City. It also took on insurance practices like the exclusion of single men who lived in predominantly gay neighborhoods.<\/p>\n

Nothing the organization did had a more lasting impact, however, than the work of the Science Club, whose members served on ACT UP<\/em>\u2019s Treatment and Data Committee. They would congregate each week at the East Village apartment of Mark Harrington, who, though he had no formal scientific training, eventually won a MacArthur \u201cgenius\u201d grant for his work on AIDS<\/em>. Harrington, a wiry man with reddish-blond hair, seemed both constantly in motion and unusually deliberate. As Schulman recounts, the gatherings in his apartment were like a \u201cdoctor\u2019s weekly rounds,\u201d where attendees discussed a particular problem and \u201cassigned themselves immunology and virology textbooks.\u2019\u2019<\/p>\n

Harrington was hardly averse to public demonstrations: he helped organize ACT UP<\/em>\u2019s \u201cSeize Control of the F.D.A.\u201d protest, in 1988, and its \u201cStorm the N.I.H.\u201d event, in 1990. But he believed that anger had to be allied with expertise. He and other members of the Science Club came to know the arcane rules and the impenetrable bureaucracy of the F.D.A. better than most of the officials who worked there. They prepared a detailed assessment of N.I.H.-sponsored clinical trials, and argued that people facing almost certain death should have access to experimental drugs that had been shown to be reasonably safe, even if they had not yet demonstrated efficacy. By 1990, the F.D.A. had adopted this approach (known as the \u201cparallel track\u201d), which would make selected drugs available to H.I.V.-positive patients. The slogan \u201cDrugs Into Bodies\u201d moved from placards to policy: ACT UP<\/em> had forced a fundamental change in the way clinical trials are conducted in the United States. Today, drug candidates for life-threatening conditions are frequently put on a parallel track for \u201cexpanded access.\u201d<\/p>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n

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Eventually, in what Schulman refers to as ACT UP<\/em>\u2019s period of \u201cdistress and desperation,\u2019\u2019 the Science Club broke away from the organization, and, led by Harrington, it formed the Treatment Action Group, to focus on accelerating the pace of research. Although the TAG<\/em> defection involved fewer than two dozen people, it was a painful divorce, with unexpected repercussions. ACT UP<\/em>\u2019s ferocity concealed a genuine fragility. The group fearlessly hurled itself against the medical bureaucracy, the Catholic Church, even the White House; what proved much harder to weather was its own crisis of identity.<\/p>\n

Although \u201cLet the Record Show\u201d bills itself as a history, Schulman maintains that \u201ca chronological history would be impossible and inaccurate.\u201d She does hope to offer contemporary activists \u201cgeneral principles and takeaway ideas,\u201d but her book is best approached as a sort of modified oral history, a curated archive of nearly two hundred interviews conducted over the course of two decades. One can open this seven-hundred-page book at random and find something interesting to read: a mini-biography, firsthand recollections of major events, contentious perspectives on the goals of different groups within ACT UP<\/em>. (The interviews\u2014which Schulman did along with the filmmaker Jim Hubbard\u2014are available online, as the ACT UP<\/em> Oral History Project.) Schulman draws, too, on her five years as an ACT UP<\/em> member, but largely eschews other people\u2019s research, and the book provides scant interstitial narrative; some readers may struggle to put these passages into context. Still, her labors will provide an invaluable resource for the social history of the movement that remains to be written.<\/p>\n

That\u2019s not to say that the book lacks a thesis. Schulman is intent on widening our understanding of what it meant to be part of ACT UP<\/em>. Instead of a colossus run largely by a small cohort of white men, she argues, it was more of a loose confederation of affinity groups. Although ACT UP<\/em> is often remembered for its extreme measures, it never committed an act of violence (despite enduring many). When we think of ACT UP<\/em>, Schulman wants us to think of the fight for universal health care, racial justice, and radical democracy\u2014and to recognize that \u201ca few committed activists, when focused on being effective, can accomplish a lot.\u201d<\/p>\n

Early in the epidemic, people with AIDS<\/em> were routinely described in the press as \u201cvictims.\u2019\u2019 (In the nineteen-eighties, I was as guilty of this sin as other reporters.) Schulman dispels that portrait of passivity. She spoke at length to a number of ACT UP<\/em>\u2019s leaders, at least those who survived into this century. But her most inspiring interviews were with rank-and-file members like Aner Candelario, who was born in Puerto Rico and graduated from the Bronx High School of Science. In 1976, as a teen-ager, Candelario was riding the No. 6 train when he had a \u201crevelation\u201d that he was not bisexual but gay. \u201cBeing a practical person,\u201d Schulman tells us, he searched the phone book and found something called the Gay Switchboard. Candelario dialled the number and asked if there was a group for teen-agers. There was, and he attended one meeting, then another, and for the next five years he led a gay youth group.<\/p>\n

Vito Russo, another ACT UP<\/em> stalwart, is best known for \u201cThe Celluloid Closet,\u201d his 1981 book about homosexuality and homophobia in film. In 1988, Russo delivered a spellbinding speech, in Albany, called \u201cWhy We Fight.\u201d (You can, and should, watch it on YouTube.) As Russo told a crowd, he had AIDS<\/em>, but that wasn\u2019t what was killing him:<\/p>\n

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If I\u2019m dying from anything, I am dying from homophobia. If I am dying from anything, I am dying from racism. If I\u2019m dying from anything, it\u2019s from indifference and red tape, because these are the things that are preventing an end to this crisis. If I\u2019m dying from anything, I\u2019m dying from Jesse Helms. If I\u2019m dying from anything, I\u2019m dying from the President of the United States. And, especially, if I\u2019m dying from anything, I\u2019m dying from the sensationalism of newspapers and magazines and television shows, which are interested in me as a human-interest story\u2014only as long as I\u2019m willing to be a helpless victim, but not if I\u2019m fighting for my life.<\/p>\n<\/div>\n<\/blockquote>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n

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The politics of AIDS<\/em>\u2014\u201cgay-related immune deficiency,\u201d or GRID<\/em>, was an early designation, as if a medical condition might have a sexual orientation\u2014was inevitably a confrontation with homophobia. In March, 1986, William\u00a0F. Buckley, Jr., wrote, in a syndicated column, \u201cEveryone detected with AIDS<\/em> should be tattooed in the upper forearm, to protect common-needle users, and on the buttocks, to prevent the victimization of other homosexuals.\u201d That same year, by a vote of 5\u20134, the Supreme Court upheld a Georgia sodomy statute, in a case involving two men having sex in a private home. Several years into a harrowing epidemic, gay Americans were told that an act of consensual sex could not only infect them with a fatal disease; it could also, at the will of a state, send them to prison. The fears of internment were not easily dismissed as hysteria.<\/p>\n

In a section of the book titled \u201cWhen an Image Leads a Movement,\u201d Schulman shows how such threats led to what became ACT UP<\/em>\u2019s most arresting symbol. Around the time of Buckley\u2019s tattoo column, an art director named Avram Finkelstein read something in the newspaper about the silence of a community being deafening. He and some friends had been tossing around ideas for a poster. As Finkelstein told Schulman, one day he said, \u201cWhat about Gay Silence Is Deafening<\/em>?\u201d A colleague responded, \u201cWhat about Silence Is Death<\/em>?\u201d Another person said, \u201cOh, no, it should be Silence Equals Death<\/em>.\u201d Another offered, \u201cWe should use an equal sign.\u201d Finkelstein recalled, \u201cIt was literally that fast. It was four comments.\u201d<\/p>\n

They also discussed the graphics that would accompany the slogan. \u201cWe talked about the rainbow flag,\u201d Finkelstein said, but \u201cit was too friendly and, I\u2019m not going to lie, just too ugly.\u201d They hated the pink triangle, too, for its suggestion of victimhood, \u201cbut it seemed like it might have the most chance of being clear enough to the lesbian and gay community, more clear than the other images we were discussing that were abstract, and graphic enough to be intriguing, interesting, compelling to people outside of the community who didn\u2019t know what it was.\u201d<\/p>\n

The group decided to turn the pink triangle upside down, \u201cthereby permanently connecting the AIDS<\/em> crisis visually to the legacy of the Holocaust,\u201d Schulman writes. During the late eighties, countless T-shirts bore the logo, and \u201cSilence = Death\u201d stickers could be found on what seemed like every newspaper box or wall in New York City. In a blinkered era, signage was significant, and merchandise mattered.<\/p>\n

\u201cLet the Record Show\u201d argues that ACT UP<\/em>\u2019s success arose from its genuine diversity, and its truly democratic approach to making decisions. The book highlights the contributions of women, many of whom came out of the reproductive-rights movement of the seventies. Some, like Maxine Wolfe, who was a psychology professor and a central figure in ACT UP<\/em>, had a long history of feminist and lesbian activism.<\/p>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n

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And many of ACT UP<\/em>\u2019s campaigns were created for the particular benefit of women. In the late eighties and the early nineties, it became common to hear the ACT UP<\/em> slogan \u201cWomen don\u2019t get AIDS<\/em>; they just die from it.\u201d That was because the original list of the conditions that the C.D.C. used to define AIDS<\/em>\u2014a definition with implications for what insurers would cover and who might receive disability payments\u2014did not include chronic infections that were specific to women. This kind of neglect should hardly come as a shock. Women have rarely been given equal consideration or representation in medical research. (The map of the human genome\u2014the foundational blueprint of modern biological research\u2014was initially based largely on the genetic sequence of an anonymous man from Buffalo.)<\/p>\n

Yet there were reasons for ACT UP<\/em>\u2019s prevailing image. A 1989 survey of the New York chapter showed that more than three-quarters of participants were younger than thirty-five and that eighty per cent were white gay men. Many were well educated, even well-off. Larry Kramer, who died last year at the age of eighty-four, certainly fit that bill. Recalling his early attempts to enlist help from public officials, he told Schulman, \u201cYou learn very fast that you\u2019re a faggot, and it doesn\u2019t make any difference that you went to Yale and were assistant to presidents of a couple of film companies, and that you had money.\u201d The early ACT UP<\/em> firebrands never forgot that Ronald Reagan hadn\u2019t so much as uttered the word \u201cAIDS<\/em>\u201d in public until September, 1985, just a couple of weeks before it killed his friend Rock Hudson.<\/p>\n

Kramer made it clear that the unexpected pain of spurned entitlement helped fuel the movement. \u201cWe were mostly white and privileged, and there was a lot of flak against us in the community<\/em> because of that,\u201d he told Schulman. As one would expect, this account doesn\u2019t sit well with her.<\/p>\n

\u201cACT UP<\/em> was predominantly white and male,\u201d she acknowledges. \u201cBut its history has been whitened in ways that obstruct the complexity.\u201d Kramer, she thinks, \u201cnever really understood the wide range of people who were in ACT UP<\/em>, where we were coming from, and what we were doing.\u201d She is angered by the attention that has been lavished on him. \u201cIt is remarkable how many people in high places, of all ages, in multiple spaces, think that Larry was \u2018the leader of ACT UP<\/em>.\u2019\u00a0\u201d In fact, as she concedes, Kramer never pretended to be the leader of ACT UP<\/em>. He was its sharpest spear, though, and spears are needed in times of war.<\/p>\n

Read more The Autoworker Who Wouldn\u2019t Stay in the Closet<\/a><\/p>\n

Schulman\u2019s trouble with Kramer reflects a deeper fissure within the organization. ACT UP<\/em> certainly contained affinity groups, including the Majority Action Committee, for people of color, and the Women\u2019s Caucus. But did members who were white and male have an advantage in swaying a bureaucracy that was also overwhelmingly white and male? That\u2019s what Kramer implied, and, though Schulman doesn\u2019t dispute the point, she thinks that the group\u2019s true power lay in a concerted display of strength through diversity.<\/p>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n

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ACT UP<\/em>\u2019s biggest problem, in her opinion, was to be found not in the movement but in media depictions of it that played largely to a straight and white middle-class audience. She assails David France, whom she accuses of using her research to \u201cnefarious ends\u201d in his powerful documentary \u201cHow to Survive a Plague.\u201d It won mainstream approval, she thinks, precisely because it promotes a \u201cheroic white male individual model\u201d of activism, in contrast with the \u201cdiverse grassroots movements\u201d revealed in the less celebrated documentary \u201cUnited in Anger,\u201d which she produced with its director, Jim Hubbard.<\/p>\n

Schulman\u2019s indictment of how AIDS<\/em> and AIDS<\/em> activism have been portrayed extends to the Oscar-winning film \u201cPhiladelphia.\u201d It errs, she says, because it depicts a gay man with AIDS<\/em> (Tom Hanks) being helped by a homophobic\u00a0straight lawyer (Denzel Washington)\u00a0who overcomes his prejudice, rather than by the man\u2019s own community. More surprisingly, she lambastes the Pulitzer Prize-winning play \u201cAngels in America,\u201d which came to Broadway in 1993 and was, she maintains, yet another work \u201cthat made straight people into the heroes of the crisis.\u201d Tony Kushner\u2019s dramatic diptych \u201cis strangely disconnected from the reality of people with AIDS<\/em>, relying on the conventional trope of a cowardly gay person who abandons his lover.\u201d It\u2019s a curious interpretation, requiring the erasure of Jeffrey Wright\u2019s role as Belize, a gay nurse and the play\u2019s centering sensibility. (The performance won Wright a Tony.)<\/p>\n

That\u2019s not the only erasure in Schulman\u2019s book. For her, setting the record straight means emphasizing ACT UP<\/em>\u2019s broad vista of coalition politics. Yet of the nearly two hundred interviews that she draws upon for the book, only a few are with Black people. The voices of important activists of color who didn\u2019t survive the plague are absent, owing to her reluctance to use archives other than her own. Even in a chapter describing the plight of H.I.V.-positive Haitians interned in Guant\u00e1namo, all her interview subjects are white. Early in the book, she says that her subjects spoke with her openly because, as New Yorkers, \u201cthey were used to telling their thoughts and feelings to a middle-aged Jewish woman.\u201d In the context of her argument, the shrink joke, with its caste and class presuppositions, cuts a little close to the bone.<\/p>\n

\u201cACT UP<\/em> is a racist organization,\u201d the late Keith Cylar, a prominent member of the group, told Spin<\/em> in 1990. He wasn\u2019t condemning ACT UP<\/em>; he was saying that racism was an inevitable feature in a mostly white organization, and required vigilance. The sociologist (and ACT UP<\/em> veteran) Deborah\u00a0B. Gould, subtly probing the group\u2019s racial politics, has written about a \u201cscarcity mentality\u201d fuelled by desperation. When people of color raised issues of particular concern to them, they routinely met the rejoinder \u201cWhat does this have to do with AIDS<\/em>?\u201d or were told, \u201cWe don\u2019t have time.\u201d But Schulman hurries past such conversations, more concerned with scrutinizing the group\u2019s media image than its complicated reality.<\/p>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n

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In the end, what Schulman calls ACT UP<\/em>\u2019s \u201ctragic split\u201d was precipitated more by dissension over research than by disagreements over race. Any list of the most important medical trials of modern times would have to include the AIDS<\/em> Clinical Trials Group Protocol 076 study, which was launched in 1991. That study was designed to determine whether the antiretroviral AZT, administered during advanced pregnancy, would prevent H.I.V. transmission from mother to infant. And it led to a decisive rift between those in ACT UP<\/em>, like Harrington, who argued for the study\u2019s critical importance and those, like Maxine Wolfe, who wanted it stopped at all costs.<\/p>\n

AZT was the first antiretroviral that received F.D.A. authorization to treat H.I.V. For a while, it would bring down a patient\u2019s viral load, but H.I.V. is a fast-mutating virus, and the drug, when used on its own, as a \u201cmonotherapy,\u201d typically lost efficacy within months. For a woman about to give birth, however, a temporary drop in viral load could be enough to reduce the risk of transmission. At the time of the study, between a quarter and a third of infants delivered to women with H.I.V. were born infected, and most died. Would the therapy help?<\/p>\n

The A.C.T.G. 076 study\u2014which enrolled nearly five hundred pregnant women\u2014demonstrated that a brief regimen of AZT administered to a mother before and during delivery, along with a small dose for the newborn, decreased the perinatal transmission rate by nearly seventy per cent.<\/p>\n

That trial, and others that followed, helped doctors throughout the world prevent the deaths of millions of children, particularly in sub-Saharan Africa, where infection rates were exceptionally high. Still, AZT was a poison that had to be used wisely, and the trial raised thorny ethical questions. Was it fair to give\u00a0poor women drugs that could cause resistance later and, in theory, hinder subsequent treatment? Or did the immediate threat to all the children who might be born with H.I.V. take precedence? Was it ethical to use a placebo group? Many women in ACT UP<\/em> wanted to shut the trial down, or substantially alter it. The Science Club fought forcefully for the trial. (So did many Black women, who knew that it could be particularly helpful to hard-hit communities of color.)<\/p>\n

Wolfe, who brought Schulman into the group, and who emerges as a major opponent of Harrington and his approach, considered the trial too dangerous. She has never swerved from her conviction that it was immoral. \u201cI regret that we couldn\u2019t stop 076,\u2019\u2019 she told Schulman. \u201cTo this day, I think it was a big mistake.\u201d Schulman\u2014who uncritically presents Wolfe\u2019s false assertion that the risk of viral transmission to infants was \u201cminuscule\u201d\u2014condemns the trials as privileging the \u201cimagined future\u201d over the present; unborn babies over their mothers. She implies that some of the mothers later died because they were \u201crendered resistant to some subsequent classes of new medications.\u201d<\/p>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n

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Yet, since trial subjects almost invariably received a higher \u201cstandard of care\u201d than would have been available to them otherwise, participation could save their<\/em> lives, not just the lives of their offspring. And Schulman\u2019s concern that these mothers wouldn\u2019t benefit from new classes of medicine has long since been laid to rest. Newer antivirals\u2014notably protease inhibitors, which won F.D.A. approval a year after the trial results were published\u2014became part of an updated standard of care. These regimens proved widely effective for people who had previously taken AZT.<\/p>\n

It\u2019s nearly impossible to assess the value of a medical trial without at least exploring the consequences of not carrying it out. I travelled to Africa to write about this issue nearly twenty years ago. I could hardly find an African physician or researcher who didn\u2019t consider the A.C.T.G. 076 study to be of immense value. I found none who thought it should have been stopped. White\u00a0feminists like Schulman and Wolfe, who\u00a0understandably saw the study through the lens of reproductive politics\u2014and the way anti-abortion advocates have elevated the welfare of a fetus over that of its mother\u2014failed to grasp what these trials meant to vulnerable communities around the world. Almost three decades later, Schulman refuses to acknowledge that, on a deeply contentious issue, the Science Club was right.<\/p>\n

Inevitably, personalities as well as principles played a role in ACT UP<\/em>\u2019s subsequent split. As Schulman observes, Maxine Wolfe and Mark Harrington deserve a great deal of credit for the group\u2019s successes; the two were equally responsible, she contends, for what she calls its \u201cself-defeat.\u201d Although Wolfe is at pains to distance herself from the antagonism that arose toward the Science Club, people within that group had their own perspective. The estimable Garance Franke-Ruta, who joined ACT UP<\/em> as a teen-ager, and followed Harrington to the Treatment Action Group, spoke bluntly to Schulman: Wolfe, she said, \u201cwas awful to me.\u201d<\/p>\n

The grievance that Wolfe and her allies had with the Science Club went beyond the battle over a single drug trial. They were concerned that the Club\u2019s members had increasingly pursued the \u201cinside strategy\u201d\u2014working with pharmaceutical researchers, N.I.H. administrators, and other public officials. This meant that, as Wolfe put it, they \u201cwere meeting with the very people who we were fighting against.\u201d Her allies discussed a moratorium on letting anyone in ACT UP<\/em> meet with government officials, and the prospect deepened the sense within the Science Club that ACT UP<\/em> no longer valued its agenda. Although ACT UP<\/em> didn\u2019t collapse after the schism, it was badly damaged, and it never recovered its centrality. When the inside-outside strategy was largely reduced to an outside strategy, the organization became far less consequential.<\/p>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n

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In retrospect, one can ask whether ACT UP<\/em>\u2019s victories on the research front pushed the F.D.A. too far. The drugs-into-bodies approach to fast-tracking\u2014the use of \u201csurrogate endpoints\u201d (like T-cell counts or viral load), for example, rather than clinical benefits in actual people\u2014can be valuable, especially for patients who are facing death and have no good alternatives. This approach at least offers desperate patients a chance, while allowing scientists to gather meaningful data. But, today, a number of drugs, for everything from asthma to periodontitis, have won approval before benefits in human patients were established, and critics argue that drug approval is too often based solely on benefits shown in biomarkers rather than in bodies. \u201cRight to try\u201d legislation, meanwhile, enables the sale of drug candidates without even involving the F.D.A. When restrictions are weakened, experimental drugs\u2014many of which end up proving useless or worse\u2014become harder to distinguish from effective medicine.<\/p>\n

Today, Franke-Ruta is a journalist, and she spoke to Schulman about the wider implications of some of ACT UP<\/em>\u2019s success. \u201cI don\u2019t think that we realized at the time that this was part of the broader gutting of the FDA that we\u2019ve seen since; that there was a lot of political agendas that we just happened to be in sync,\u201d she said. After President Donald Trump touted the promise of hydroxychloroquine as a treatment for COVID-19<\/em>, the F.D.A. issued an emergency-use authorization for the drug, which was shown to be useless for the purpose. (The agency withdrew the authorization three months later.) \u201cSometimes it seems like it\u2019s gone too far in the other direction,\u201d Franke-Ruta went on. \u201cBut there\u2019s a really strong pharmaceutical lobby against the FDA as well that I don\u2019t think we were aware of.\u201d<\/p>\n

ACT UP<\/em>\u2019s legacy is hardly restricted to the realm of research. \u201cThe movement for Black lives would look very different if its thought leaders\u2014many of whom are self-identified Black queer people\u2014hadn\u2019t been able to draw on the example of ACT UP<\/em>,\u201d the legal scholar Kendall Thomas, who joined the group in 1987, has observed. \u201cBlack activists and their allies now understand that the struggle for Black freedom has to make connections across many different constituencies and concerns that used to be seen as different and disconnected.\u201d At the same time, Schulman implicitly reprimands many contemporary social-justice movements and their emphasis on allyship and \u201caccomplices\u201d (who must take direction from a marginalized community) over coalitions of shared interests and values. She plainly considers call-out culture a distraction. ACT UP<\/em> members who were women or people of color, she says, directed resources to projects that were specifically of concern to them. They \u201cdid not stop the drive toward action to correct or control language or to call out bias,\u201d she adds pointedly. \u201cThe language and behavior of racist and sexist ACT UP<\/em>ers was not the focus.\u201d<\/p>\n

There are lessons in ACT UP<\/em>\u2019s failures, of course, as well as in its successes. If the group were the richly coalitional grassroots organization that Schulman describes, how could the departure of two dozen people\u2014Harrington\u2019s TAG<\/em> team\u2014have derailed it? Her institutional analysis is rather cryptic. The way ACT UP<\/em> dealt with the differences among its members \u201cwas to practice a kind of radical democracy,\u201d she says. \u201cSubverting this range of difference and trying to channel it through open and hidden moves was ultimately its downfall.\u201d<\/p>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n

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One notably disaffected voice in \u201cLet the Record Show\u201d is that of Charles King, who (with his partner, Keith Cylar) helped start Housing Works. King told Schulman that ACT UP<\/em> was, at its heart, \u201cgay men and their allies fighting for their lives.\u201d By the mid- to late nineties, the demographics of death were changing: \u201cIt was now a Black disease, not their disease.\u201d<\/p>\n

Schulman promptly dismisses King\u2019s unsettling critique: \u201cTrue to the ACT UP<\/em> tradition of alienation, Charles was defining \u2018ACT UP<\/em>\u2019 by the people he disagreed with, not by himself and his allies.\u201d Her insistence on ACT UP<\/em>\u2019s diversity is important and correct. Still, the group\u2019s most famous image\u2014the inverted pink triangle of the \u201cSilence = Death\u201d logo\u2014didn\u2019t just link AIDS<\/em> and the Holocaust; it was also an assertion of a gay identity, as not incidental but integral.<\/p>\n

King suggests that an easing of desperation within the gay community may have caused ACT UP<\/em>\u2019s undoing. As long as the core cadre felt that they were fighting for their own lives, ACT UP<\/em> could accommodate vigorous internal disagreement, even as the group secured advances for women, people of color, and the homeless. After medical advances meant that, for most H.I.V.-positive Americans, the infection was no longer a death sentence but a chronic condition, the forces of fragmentation could no longer be managed.<\/p>\n

ACT UP<\/em> was always argumentative, though, and \u201cLet the Record Show\u201d remains faithful to that spirit. If Schulman\u2019s record-keeping sometimes projects her own ideals and aspirations, she never fails to make one truth eloquently clear: \u201chow brutal debates within the AIDS<\/em> community could be, how high the emotional and literal stakes were, how desperate people were, how little anyone else was listening, and how truly destructive the pain and frustration could become.\u201d\u00a0\u2666<\/p>\n

Read more Parade<\/a><\/p>\n

<\/p>\n

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    <\/inline-embed><\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n","protected":false},"excerpt":{"rendered":"

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