It was September 14th, 1989; more Americans had already died of AIDS-related causes than the 58,000 that had died in Vietnam. And, sneaking into the New York Stock Exchange, wearing suits and fake trader ID badges, carrying chains, handcuffs and foghorns, Peter Staley and six colleagues from ACT UP — the AIDS Coalition to Unleash Power — were fighting a war too.
Today’s skirmish was over the high price of AZT, the only federally approved antiviral AIDS drug. The sole manufacturer of the drug, Burroughs-Wellcome, had originally priced it at $10,000 for a year’s dosage, and had lowered the price to $8000 only when threatened with a congressional inquiry. AZT was still the most expensive drug ever sold, meaning it depleted both the benefits of those with health insurance and the limited governmental reimbursement programs for those less fortunate. And in the two and a half years since AZT went on the market, Burroughs-Wellcome stock had risen forty percent.
Staley and members of ACT UP had met with Burroughs in January, trying to negotiate a price cut; in April they’d invaded the company’s North Carolina offices, barricading themselves and doing some impromptu redecorating with drills and chain saws (they paid for the damage immediately afterward). In August, study results revealed that AZT could be used as a preventative by people who had tested positive for the AIDS virus but as yet showed no symptoms. This vastly expanded the market for the drug, meaning Burroughs-Wellcome could lower the drug’s price and still suffer no loss in profits. Representatives of ACT UP and fifteen other AIDS groups again met with Burroughs — this time at a safe distance from its offices — to no avail. ACT UP responded by calling for a nationwide boycott of Burroughs products, which include the cold remedies Actifed and Sudafed, and by sticking “AIDS Profiteer” labels on the company’s products on store shelves. But Burroughs wasn’t budging.
So Staley and his cohorts believed that this Mission: Impossible-style invasion was the right thing to do. After the fake badges got them past the security guards, Staley quickened his pace; the nine o’clock bell signaling the start of trading would ring in only a few minutes.
The stock market was familiar turf to the twenty-eight-year-old Staley. The Main Line Philadelphia native says he was the only member of his 1983 class at the liberal Oberlin College to have gone directly into quick-buck bond trading. Staley was a classic Reagan-era yuppie traditionalist — who happened to be gay. Though he had come out of the closet his senior year, upon arriving at Morgan Guaranty he quickly ran back inside; no one was openly homosexual on Wall Street, and antigay jokes were part of the creed. Staley gritted his teeth and played along. Meanwhile, New York’s gay-bar scene was still flourishing, and on weekends, Staley, like many, found himself leading a double life. AIDS was still a small, shadowy threat no one knew much about, but after the boyishly handsome Staley picked up several venereal diseases that first summer, he toned down his lifestyle.
By 1985, more was known about AIDS, and a new test was available to detect the human immunodeficiency virus (HIV) believed to be the cause. (Many people who test positive for HIV are asymptomatic, and AIDS may take years to develop. The first symptoms — a depressed immune system and enlarged lymph nodes — are classified as AIDS-related complex [ARC]; a person is described as having full-blown AIDS only after contracting AIDS-associated opportunistic infections like pneumocystis carinii pneumonia [PCP].) Though Staley didn’t know anyone who had AIDS, he had just started a relationship and thought he’d take the test, just to be safe. Then the result came back — he was HIV positive.
After allowing himself one crying bout, Staley, a pragmatist by nature, hunkered down with the latest literature to educate himself. On the advice of a doctor, he adopted an exercise regimen and a healthier diet and quit all recreational drugs and alcohol. Home for Thanksgiving, he broke the news of his illness and his homosexuality to his family — what he calls “the Early Frost double whammy” — and they were understanding. He tried participating in a support group at the Gay Men’s Health Crisis, the city’s most respected AIDS service organization, but found it “depressing — a lot of people who wanted to whine about their situation,” and left.
Then, on his way to work on March 24th, 1987, Staley was impeded by a sit-down demonstration by 250 angry people. He was handed a flier explaining that the group, formed just two weeks earlier, was called ACT UP and was protesting the Food and Drug Administration’s sluggish release of AIDS treatments. The FDA’s standard procedures could take up to nine years to clear a drug for release; most people who already had AIDS wouldn’t be alive that long. On the front of Trinity Church, ACT UP had hanged an effigy of then FDA head Frank Young; downtown traffic was snarled for hours. The event was reported that night on CBS by Dan Rather, and the FDA promised speedy changes. Impressed, Staley started attending ACT UP’s Monday-night meetings — though at its demonstrations he was always careful to wear sunglasses or hide behind signs so he wouldn’t be recognized in the press by his Wall Street peers and lose his job.
Those days seemed long ago as Staley and his colleagues climbed the short staircase to the balcony twenty feet above the trading floor. Now on disability (which he’d had to threaten to sue his employer to get), Staley had become a full-time, uncloseted AIDS activist, applying his financial savvy to fund-raising for ACT UP. Staley looked down at the sea of suits, electronics and paper that had so recently been the center of his universe. Everything had changed. These people were now part of the enemy, the profit-minded bureaucracy that had shown little regard for people with AIDS — mostly homosexuals, minorities and drug users, groups traditionally viewed as marginalia in America and usually lacking any political clout.
Seconds before nine o’clock, Staley and four other ACT UPpers locked a heavy chain to the balcony railing and handcuffed themselves to it. Unfurling a banner reading “Sell Wellcome,” they then blared foghorns, completely drowning out the opening bell. The other two ACT UP members pulled out cameras and snapped away, and within hours the scene would be transmitted across the country.
Below, the traders were apoplectic. Nobody had interfered with trading in the twenty-two years since Abbie Hoffman tossed dollar bills onto the floor. Many of the suits and ties ran over to the balcony and started screaming: “DIE, FAGGOTS!” “MACE THEM!” As he was being led away by authorities — his sixth arrest in eighteen months — Peter Staley was ecstatic. “Having listened to the same garbage for five years,” he says, “this time I was able to look it right down and know that my story was going to be in the news that day, not theirs. It was a great sense of revenge.”
And within weeks, Burroughs-Wellcome reduced the price of AZT twenty percent, to $6400 a year — claiming, of course, that it had been planning to do so all along. The battle had been won, but the war was far from over: The Centers for Disease Control had reported America’s 100,000th case of full-blown AIDS in July and predicted another 100,000 by November 1990. The number of people already infected with HIV was estimated to be between 1 million and 1.5 million.
“Every week you hear of somebody else who’s died or gone to the hospital,” Staley says. “You have to have a war mentality. When the troops are done with battle, the deaths are announced, and you start to plan the next battle. If you stop to spend a lot of time on mourning, you’ll lose the war. We prefer to skip the mourning stage and go straight to anger.”
Before ACT UP,” says member Mark Harrington, 30, “I didn’t have faith in mass political action — in any political action. I thought politics was the realm of hypocrisy and shallow platitudes. What impressed me was that I was in a room full of young people who didn’t subscribe to the media’s view that our generation was apolitical, careerist and materialistic. And anybody could speak, anybody could run for office — it was like ancient Athens.”
Although ACT UP personifies the age-old ideal of town-meeting democracy, it is also thoroughly modern, shrewdly blending Sixties-style activism with the same tactics used by sophisticated political operatives: Spielbergian spectacle and media manipulation. In an era of short attention spans, ACT UP has kept its issues in the news with clever, witty and sometimes shocking demonstrations. Whether it’s 1500 people besieging the FDA campus in Maryland with smoke bombs or 11 people handcuffing themselves to the New York office of a Japanese pharmaceutical firm, ACT UP gets results.
ACT UP has also given activism a fresh look. Its visual-arts collective, Gran Fury, has provided it with an eye-catching graphic campaign centered around the group’s maxim, “Silence = Death.” In New York City, “Silence = Death” stickers — topped by the pink triangle the Nazis used to identify homosexuals, inverted — have become ubiquitous reminders on cash machines, newsstands, tollbooth buckets and pay phones. Gran Fury has also painted outlines of dead bodies in the street; opened New York Times vending boxes and wrapped each issue with an all-AIDS mockup called New York Crimes; and put politically charged ad parodies in the subways and buses.
ACT UP has developed a behind-the-scenes sophistication that has enabled it to have a major voice in governmental policy. In 1989, the group not only helped get the price of AZT reduced but also helped speed the release of at least four new AIDS-related treatments: dideoxyinosine (DDI), another antiviral drug; ganciclovir (DHPG), used to combat AIDS-related blindness; erythropoietin (EPO), which treats anemia; and pentamidine, effective in fighting PCP. It has also successfully lobbied the medical establishment to expand access to experimental drugs for sick patients who don’t qualify for clinical trials.
“All the polite candlelight marches [of the early Eighties] didn’t do much to increase government funding,” says Randy Shilts, the author of And the Band Played On, the 1987 exposé about the nation’s inadequate response to the AIDS crisis. “Confrontational protest is long overdue, and it’s only going to get bigger. A lot of people who were previously apathetic are getting tested and finding out they’re positive. Many of them are politically naive — they aren’t going to think rationally. It’s only going to get more intense.”
Along the way, ACT UP has alienated many. After former New York City health commissioner Stephen Joseph reduced estimates of the numbers of infected New Yorkers and asked for mandatory HIV testing, ACT UP put his face on posters, calling him “Deadlier than the Virus,” threw paint on his house and gave out his home number at a meeting, leading to several obscene calls and death threats.
“They shout down opposing points of view,” says Joseph. “That’s the way fascism breeds. Just because someone doesn’t like information doesn’t mean it’s wrong.”
At times, the confrontation obscures the accomplishment. Last December, members of ACT UP and Women’s Health Action Mobilization (WHAM) stormed St. Patrick’s Cathedral during High Mass to protest John Cardinal O’Connor’s influence in New York City politics regarding condoms, abortion and sex education. Inside, protesters yelled slogans and disrupted the service, and one took the host wafer — which, to Catholics, is the body of Christ — and shattered it on the floor. Cardinal O’Connor held a press conference with then mayor Edward Koch by his side, and by the next day, nearly every local politician, daily paper and gay organization had condemned ACT UP.
Such events have caused many to write off the group as radical lunatics. “That’s made my job more difficult,” says Dr. Anthony Fauci of the National Institute for Allergy and Infectious Diseases (NIAID), “because I have to go back to the conservative establishment and say, ‘We need to work with these people,’ and they look at me like I’m crazy. They don’t see the side of ACT UP that I do — intelligent, gifted, articulate people coming up with good, creative ideas.”
Welcome to ACT UP, a diverse, nonpartisan group of individuals united in anger and committed to direct action to end the AIDS crisis,” Ann Northrop announces into a microphone over the bustling main room of New York’s Gay and Lesbian Community Center.
It’s 7:30 on a November Monday night, and the 300 folding chairs in this converted Greenwich Village school have long been filled; another 100 people have to squeeze in the back or squat on the floor. “Diverse” it is: Though predominantly gay, white and male, the crowd is a mix of socializing pretty boys in leather jackets and bike caps kissing hello; quieter, uneasier loners in business suits; a handful of transvestites; and women unpacking their knitting for the long evening ahead.
It was during a lecture in this room in 1987 that playwright Larry Kramer (The Normal Heart) sparked the formation of ACT UP by yelling at 250 people about the lethargic response to the AIDS crisis. The irascible Kramer told two-thirds of the room to stand up and said, “At the rate we are going, you could be dead in five years. Two-thirds of this room . . . If what you are hearing doesn’t rouse you to anger, fury, rage and action, gay men will have no future here on earth.”
Many agreed — although, at first, that was about all they agreed on. “The early meetings were about 100 people,” says Peter Staley, “and were just crazy. The group was fragile, emotional, nothing but cross talk. Every person gave a dramatic, emotional speech. There was plenty of creativity and drive; there just was no structure.”
Three years later, ACT UP meetings can be just as volatile. Suspicious of power, the all-volunteer group refuses to have leaders except for a few administrative posts that rotate every six months. Its Coordinating Committee’s only functions are approving expenditures under $1000 and hashing out the wording in policy statements. But in the interim, ACT UP has also spawned affiliates in fifty cities worldwide and become a twenty-two-committee bureaucracy staffed by people who are HIV positive, or who lost loved ones, or who became radicalized simply by learning the facts. Though its original rallying cry was “Drugs into bodies,” ACT UP soon learned that AIDS opened a Pandora’s box of problems relating to education, housing, health care, insurance and scientific research — not to mention homophobia, racism and classism, which have all contributed to the crisis.
In the back of the underlit, mural-lined room, a steady file of latecomers passes by a table laden with stacks of photocopies: the week’s press clippings about AIDS and ACT UP; the newsletter from the Treatment and Data Committee, with the latest information on experimental drugs; an issue of Piss & Vinegar, a one-man newsletter put out by the group’s self-appointed extremist, Michael Petrelis; assorted party invitations; and an offer of a cat up for adoption.
At a table to Ann Northrop’s left, Peter Staley heads a crew selling ACT UP merchandise — “Silence = Death” T-shirts, sweatshirts, buttons and stickers — which provides one-third of ACT UP’s $400,000 annual operating budget. (One-third comes from direct mail, the rest from benefits and grants. The group is not tax-exempt, and its political activity disqualifies it from government funding.) The table also sells a handbook titled Treatment Decisions, which explains the disease, the immune system and medications; and a publication put out by the AIDS Treatment Registry that lists all the current New York-New Jersey trials of HIV and AIDS drugs, their requirements and contacts.
“O-kay,” says Northrop, trying to get the room to simmer down. “At this time,” she continues in her dry, deadpan voice, “any on-duty policemen or other law-enforcement officials are required to identify themselves, ha, ha.” Members of the audience hoot along: No one has ever answered this request in nearly three years of Mondays, although ACT UP demonstrations are attended by both uniformed police and many suspicious characters in street clothes with video cameras. As Northrop later explains with a shrug, except for the precise details of a maneuver like the one at the stock exchange, “nothing we do is secret. We think we’re more powerful being open. The minute we start trying to be secret, that’s when we will be infiltrated and sabotaged.”
Silver haired and no-nonsense, Northrop, 41, is one of ACT UP’s four “facilitators,” who take turns steering these lurching, exhausting three-hour psychodramas. Northrop, a former debutante who worked as a producer on Good Morning America and CBS Morning News, quit TV two years ago. She now teaches AIDS education to public-school students, “making myself the local lesbian to fag-bashers in the Bronx and Staten Island,” she says. “Our basic message is that there’s a spectrum of human sexuality; kids can accept people for who they are, not see us as weirdo perverts from Mars.”
As the crowd quiets down, Northrop explains ACT UP’s ground rules for any newcomers. Smoking is prohibited. The group operates from a constitution called “the working document,” based on a “loose version” of Robert’s Rules of Order. Anyone can raise his hand to speak for up to ninety seconds; motions can be called and seconded; and after attending three meetings, anyone can vote — whether on spending funds, planning a mass action or endorsing a piece of literature.
An ACT UP meeting is, even to the initiated, daunting — both in the topics covered and the group dynamic. Audience members often illustrate points with an AA-style confessional or rephrase what’s already been said. Many proposals rise or fall based on the personality of the proposer, not the issue. As much cruising goes on as real work; meetings are rife with sexual puns and joking, and many members have found boyfriends through the group.
Frequently, the meetings wallow in virulent disagreements over side issues. Is ACT UP co-opted by being granted a seat on a government panel? Must every piece of ACT UP literature be translated into Spanish? It took two months for the group just to agree to rent a tiny office — which, to satisfy antiestablishment types, is called the Workspace. As Larry Kramer puts it, “The problem with a grass-roots organization is every crazy has a vote.”
Others see this as a plus. “I went to my first meeting and fell in love,” says Northrop. “There was a wonderful feeling in the room. I like the fact that it’s a bunch of cranky people who are probably outsiders in the rest of their lives.”
That the group gets anything done is probably due to the powerful core of gay men who are sick or have lost loved ones. “They have a different attitude,” says ACT UP member Jim Serafini, a clinical psychologist (who himself is HIV positive). “They’re very present- and action-oriented. They’re not interested in building an organization. With the prospect of losing life, you experience alienation and antagonism differently. You don’t worry about it.” Members often have vitriolic face-to-face arguments, then go out for meals together.
First up this particular Monday night is Marvin Palmer, a gay black man representing the Youth Brigade, which he has just cofounded. Palmer is also a member of ACT UP’s Majority Action Committee, so named because minorities now constitute the majority of the HIV-infected population. ACT UP was founded by and for gay white men; to reach other constituencies, it will likely need an influx of minority representatives like Palmer.
The twenty-one-year-old Palmer recently moved to New York from San Francisco, where he grew up in the heart of the predominantly gay Castro district. Two of his high-school friends, both Hispanic, died of AIDS before graduating from college. And the New York Times reported just a few weeks ago that the next big group to be infected would be teenagers. So Palmer’s concern is to educate the youths who think they aren’t vulnerable. He recruits a dozen volunteers to go to a public high school in Harlem at 7:45 a.m. to hand out safe-sex leaflets and condoms.
As the meeting continues, the subject matter begins to blur. The video collective is showing its educational films for women, adolescents and substance abusers. The newly formed Insurance and Health Care Committee needs members. Peter Staley announces that ACT UP’s upcoming art-auction fund-raiser, co-chaired by painter David Hockney and photographer Annie Leibovitz, has received work from Christo, Robert Rauschenberg and ACT UP member Keith Haring. The Treatment and Data Committee asks for volunteers to monitor the progress of individual drugs in trials. The Ins and Outs Committee discusses new U.S. immigration laws that deny visas and citizenship to anyone testing HIV positive.
Just when the facts and figures and phone numbers are rendering the AIDS crisis somewhat abstract, two men in their thirties come to the front of the room and are introduced as the victims of a gay-bashing incident last July in a New York park adjacent to the mayor’s residence. They recount the attack — one of them was hit with a hammer and suffered a broken cheekbone and permanent retinal damage — and describe the plea-bargaining arrangement, which gives three defendants probation and the other two only 90 days in jail. The room hisses, and one man cries, “Outrage!” A few months before, when a gang of black youths attacked a white, female investment banker jogging in Central Park, the city was mobilized in anger and compassion; this case got virtually no press. The crime victims request ACT UPpers to attend the sentencing on Wednesday; the judge’s phone number is chalked up on a blackboard, and members are told to “zap” his office all day tomorrow with complaints.
Then, after pushing her oversize glasses back up her nose, Bryn Mawr graduate Natasha Gray, 25, asks for people to come to Grand Central Station on Thursday to protest Operation Enforcement, the new transit-authority laws prohibiting homeless people from lying down or begging in the subways. “There are an estimated 10,000 homeless PWAs [people with AIDS] in this city,” she says. 40 hands go up.
At 10:45, the remaining 150 or so people head out into the night, first folding and stacking their chairs. Among the last to leave is the Manhattan-born Gray, who is writing a biography of Oscar Wilde; an activist since age fifteen, she came to the group through her interest in housing issues. Gray is also working on a fotonovela in Spanish about women and AIDS; on a remedy for the statewide shortage of hospital beds; and on solving the dismal insurance situation — many AIDS patients, once diagnosed, can’t switch jobs because they will lose their coverage. “I have no experience in this whatsoever,” she says. “People in ACT UP are encouraged to become experts, and they do. In health care, knowledge really is power, and the knowledge is much more available than you think, once you get over your fears.”
When Gray joined the group, she hadn’t known any PWAs. “I’m glad I got involved,” she says, “but sometimes I wonder if I would have, had I thought it through. Now I have all these dear friends, and it’s very upsetting to know so many people who might get sick and die. There’s such a taboo against emotionalism in ACT UP. Passion is approved of — people screaming about how upset they are — but you can’t talk about the disease in sentimental ways. When I look at Monday meetings, I see so many people who are so rare. I sit and memorize people’s faces, their eyes, because they’re such miracles. I want to be able to recognize people like that later in life, and I feel so lucky to have seen them.”
By the fall of 1987, Peter Staley’s immune system was in peril. His count of T-4 immune cells, which in a healthy individual runs about 1000, was down to around 100. Staley got a prescription for AZT from his doctor and dutifully began taking the standard dose: twelve 100-milligram pills a day. AZT, however, has severe toxic side effects and has been shown to cause cancer in lab mice. And Staley found that AZT made him so anemic he would nod off on the trading floor – no easy accomplishment – so he stopped taking the drug.
As a member of ACT UP’s Treatment and Data Committee, however, Staley had access to some of the most up-to-date information around. And by late 1988, news had leaked to the group that AZT could still be effective if taken in much lower doses. The lower doses not only cost less but caused fewer harmful side effects. So Staley began taking one-quarter the normal dose, in combination with an antiherpal, Acyclovir, which is supposed to work synergistically with AZT; Naltrexone, an unproven immune-system booster; Bactrim, to combat the pneumonia that kills many people with AIDS; and a complicated vitamin therapy. His T-4-cell count stabilized at around 700.
Yet nearly a year later, this life-saving information had still not been released to the general public, or even to the medical community at large. It is standard scientific practice not to announce new discoveries until they are first verified by a peer review of other scientists and then published in a prestigious journal like the New England Journal of Medicine. While this caution is meant to protect consumers, the process is not free of the competition, egos and politicking of any other profession, and important announcements can be unnecessarily delayed.
“As soon as they get data like this, they should release it,” ACT UP’s Jim Eigo declares at a November Treatment and Data (T&D) meeting. “Early on, only specialists treated AIDS, but now a lot of inexperienced physicians are just prescribing whatever’s recommended on the bottle.”
The tall, ponytailed Eigo, 38, settles back in his chair and looks around ACT UP’s 25-by-25-foot Workspace, a utilitarian place dominated by copying machines, phones, files and ACT UP paraphernalia. Most of the thirty men and three women around the table with him — among them, Staley, Kramer and Harrington — are regulars at these Wednesday-night meetings. The dominant technical jargon keeps many newcomers away; T&D is fairly inaccessible and elitist, and has therefore stirred some resentment among other ACT UP members.
Yet it is also ACT UP’s most productive committee. T&D was founded in 1987 by Dr. Iris Long, a heterosexual pharmaceutical chemist who had been working at New York’s Memorial Sloan-Kettering Hospital and had come to believe that the standard methods of scientific research were inadequate to handle a deadly epidemic. And T&D has been leading ACT UP’s battle to reform the way the government regulates the testing and release of drugs.
T&D’s most visible members are Harrington and Eigo, who, unlike most ACT UP volunteers, have made AIDS activism their full-time career. They testify regularly at government hearings and are often quoted in the press, yet until recently, neither knew much about science.
The scrawny, intense Harrington talks in rapid-fire bursts, barely able to contain all the acronyms and analyses zinging around in his head. A San Francisco native, he graduated from Harvard with a degree in German art and film in 1983, after having taken a few years off to go back home, come out and meet his first boyfriend. After college Harrington remained in Cambridge for three years, working as a coffeehouse waiter and freelance writer, then moved to New York to take a job working on computers and scripts for a film company. In early 1988, a close friend started showing signs of AIDS, and, Harrington says, “I joined ACT UP as soon as I realized what was happening to him.”
Overwhelmed by the amount of technical information he needed to master, Harrington stayed on the computer one night after work and began making a list of all the words he wanted to understand — about the disease, drugs and bureaucracy — alphabetizing them and learning definitions. He ended up with a fifty-page glossary that was distributed at ACT UP.
Yet it’s this very one-man-show quality that has gotten Harrington into some trouble with ACT UP. Many are uncomfortable with the fact that Harrington has become such a spokesman that reporters will often call him instead of the ACT UP Media Committee. Last fall, Harrington caused a rift between East and West Coast AIDS activists after he was quoted in the New York Times criticizing San Francisco’s Project Inform for mismanaging an independent trial of the drug Compound Q, in which two participants died. “Mark’s a bit of a solo agent,” says Eigo. “He has trouble with the group process.” Harrington often displays his knowledge aggressively, and when people at T&D meetings bring up subjects he considers tired or unworthy, he can be dismissive, going out in the hallway to smoke.
Last April, Harrington quit his job, and now he lives off of freelance writing projects like grant proposals. He also has a weekly column called “Political Science” in New York’s new gay publication Outweek (sometimes called ACT UP’s Pravda), which pays, he says, “in the high two figures.” When not working for ACT UP, Harrington volunteers for the AIDS Treatment Registry, headed by Long; the American Foundation for AIDS Research (AmFAR), headed by Dr. Mathilde Krim; and the Community Research Initiative (CRI), founded by PWA Michael Callen, which is trying to supplement and bypass the federal drug-testing system by conducting its own trials with local doctors and patients who don’t qualify for the government’s trials.
Harrington is barely scraping by; his phone service is always about to be cut off, and he has little personal life to speak of. “But,” he says, “I had a whole part of my life where I was focused on my personal life, so it seems okay not to for now.”
Whereas Harrington flares with brusque zeal, Jim Eigo is detached, calm, ascetic and mysterious; unlike most members of ACT UP, he never flirts, and amid the group’s sea of passion, he seems downright peculiar. Asked why he is devoting his entire life to the crisis (he’s HIV negative), Eigo ticks off the reasons with antiseptic clarity: “I was in the performing and literary arts; I’ve lived over a dozen years on Avenue A, which became a hub of the country’s illegal-drug industry; and I’ve seen my profession and my neighborhood pretty devastated and my kind pretty decimated.”
Harrington says, “Jim has a saintlike quality that’s uncanny. He’s extraordinarily selfless.” Jim Serafini calls him “ACT UP’s Francis of Assisi.”
If Eigo is a saint, he’s probably the first whose wardrobe seems to consist entirely of black high-top sneakers, black jeans and an endless supply of AIDS-specific T-shirts, printed with slogans like “New York City: Aids Crisis Area” or, beneath a picture of Ronald Reagan, “AIDSgate.”
The pale, muscular Eigo, who got a play-writing degree from California Institute of the Arts, is not a Filofax kind of guy; he keeps papers — phone numbers, recent AIDS obituaries — carefully folded in his pants pocket. He lives in a rent-controlled apartment so small that there isn’t room for a chair; he writes position papers and letters on his computer while sitting on a futon. His minimal rent is paid by a woman who had been his teacher and wanted to support him so he could be a full-time writer. He moved to New York in the mid-Seventies and began writing fiction and theater criticism. His political involvement had always been “peripheral”; as the AIDS epidemic took shape, he volunteered for the Gay Men’s Health Crisis but found the group unable to cope with the political aspects of the epidemic. At his third ACT UP meeting, he heard a speech by Iris Long about clinical trials; though the rest of the room seemed bored, Eigo was intrigued and volunteered to help disseminate her findings through his writing.
Eigo feels a deep, abiding responsibility to ACT UP. “Whenever any of us speaks somewhere,” he says, “we know the following Monday we have to answer to the group.” And he disagrees with those who would rather ACT UP remain a radical street organization and never have any members on government panels. “You’re only co-opted if you’re forced to mute your criticisms,” he says. “I just see it as direct action of a different sort.”
It wasn’t until last May that ACT UP shifted from being merely reactive to a more participatory role. Earlier in the year, members had protested at two government hearings on the approval process for AIDS and cancer drugs and were then asked back to testify about the release of two new drugs, pentamidine and DHPG.
The two drugs had long been withheld for reasons symptomatic of the problems with the clinical trial system in dealing with a deadly epidemic. The government couldn’t get anyone to enlist in the trial for DHPG because it was being tested against a placebo control, meaning that half the people in the study would be allowed to go blind. And government researchers had made pentamidine such a low priority — they were concentrating on tests involving AZT — that in the end, community-based trials, using local doctors, were the deciding factor at the hearings.
After the hearing, the FDA agreed to approve DHPG and pentamidine, and the bus ride home from Washington was “jubilant,” says Mark Harrington. “We felt we’d conquered the AIDS bureaucracy. And during the ride, it hit me: The government had no fucking idea what it was doing. It didn’t have an overall agenda to deal with the disease, just these individual drugs in isolation.”
The government has never seen fit to create a single agency to oversee the handling of the AIDS crisis, and thus the National Institutes of Health, the Food and Drug Administration and the Centers for Disease Control — which are in different states — have been proceeding disjointedly and competitively. (And since President Bush has taken office, he hasn’t been able to find new heads for any of them.) So, Harrington decided, “it was time to take control.”
When the ACT UP contingent returned to New York, a subgroup of the T&D committee, including Harrington, Eigo and Long, met at Harrington’s apartment every week for four weeks, developing a sixteen-page “AIDS Treatment Agenda” to present to the Fifth International AIDS conference in Montreal in June. In it, they outlined a program in which PWAs would be consulted regarding drug-trial designs; they listed five drugs whose test results warranted the drugs’ release; and they devised the revolutionary notion of “parallel track.”
Experimental drugs go through three trial phases before being released: In phase 1, the drug is tested for toxicity; in phase 2, it is tested to determine if it shows enough different, positive effects to make it worth releasing; and in phase 3, similar tests are done in larger populations over longer periods of time. With parallel track, in cases of serious illness, drugs that had passed phase 1 would still be put into clinical trials but would also be released immediately to patients who didn’t qualify for the trials.
ACT UP’s dominating presence at Montreal was remarkable; patients had never before tried to direct the course of scientific research. Unfortunately, what got the publicity was the group’s disruption of the conference; members shouted nearly every speaker down, often for using politically incorrect terminology, such as “AIDS victim” instead of “person with AIDS.” Randy Shilts wrote a piece in Mother Jones suggesting that ACT UP was inhibiting productivity by scaring doctors away from next year’s conference — which coincidentally will be in San Francisco during the weekend of the Gay Freedom Day Parade.
But behind the scenes, the key players were listening. The week after Montreal, members of ACT UP were invited to meet with the FDA’s Ellen Cooper and NIAID’s Dr. Anthony Fauci to discuss parallel tracking. A few days later, ACT UP met with Bristol-Myers, the manufacturer of DDI, which was one of the five drugs the ACT UP agenda had urged for immediate release. Bristol-Myers was surprised that this ragamuffin group had access to the powers that could approve its product and, having watched what happened to Burroughs, knew not to inflate the price. Soon, DDI was released free to 5000 patients who could no longer take AZT. (With prolonged use, AZT either becomes too toxic or loses its effectiveness.)
That same day, Fauci announced the concept of parallel track, and the government appointed a working group, including Eigo, to write up procedural standards. In early September, the FDA approved DDI for use by people unable to take AZT and ineligible for trials.
But drug release is only part of ACT UP’s battle. As its knowledge has increased, the group has been focusing more on which drugs are tested as well as the way they are tested in the first place.
People don’t die of AIDS. AIDS is a syndrome of reduced immunity that takes many forms. What people die from are opportunistic infections (OIs), which take hold once the immune system is too weak to fight back. Well before the HIV virus was discovered, OIs like PCP and Kaposi’s sarcoma were diagnosed as the leading killers of people with AIDS.
Yet in the first seven years of AIDS research, not a single new treatment was developed to combat OIs. Instead, after AZT was approved, most of the government’s drug trials focused on it. Members of ACT UP feel this is because even an arcane advance in AZT knowledge is more likely to get published than one concerning an unknown drug that might ultimately turn out to be worthless. Yet AZT at best gives PWAs only a year (and people with AIDS-related complex perhaps a few extra years).
“They have this macho idea of science that’s connected to the Nobel Prize,” says Harrington. “Treating HIV — that’s the big one, finding a vaccine or a cure. Keeping people alive is not the big one — it’s not going to win prizes.”
Even if a vaccine were discovered tomorrow, it would not be a complete solution. Since AIDS takes five years or more to develop after infection, that would mean five more years of HIV-positive people developing AIDS and perhaps unwittingly infecting others, ad infinitum. That’s why ACT UP has been fighting for education, and for OI treatments.
Now that OI treatments are starting to be tested, however, the entire clinical-trial system has been called into question. To participate in trials as they are now run, a person must have a private physician, fit the study’s demographics and not take any other medication, because it might affect the results of the trial. This in effect disqualifies the poor, minorities, women and most people taking drugs to fight off AIDS infections.
Therefore much of the time and money budgeted for AIDS has been spent screening applicants for trials, instead of on the trials themselves; for one study at a New York hospital, only 3 of 150 volunteers qualified. As a result, many PWAs are either lying about use of other drugs in order to stay in the trials or getting experimental drugs illegally — or dying. ACT UP is trying to get restrictions lifted, arguing that reliable results can still be obtained by grouping the trial subjects according to which drugs they’re taking in addition to the trial drug. Harrington and Eigo are working on specific proposals to present to NIAID’s AIDS Clinical Trials Group.
Yet there are reasons for all the controls and limits involved in trials, and ACT UP’s efforts to loosen them have caused some medical experts to worry. “ACT UP’s demand for rapid introduction to drugs and alternative tracking may ultimately harm more people than it helps,” says the chief doctor at one of New York City’s AIDS clinics — who himself has donated money to ACT UP. “The demand is understandable, because people don’t have much time to live. But you can only speed up the process so fast. Every drug is dangerous until you prove it isn’t. I worry about ACT UP being in bed with the drug companies, which are only interested in selling drugs and which make most of their money on drugs in the years before people know the consequences. The scientific process of controlled experiments is the best way to avoid potentially horrific problems. With DDI, for example, the first phase 1 study showed it didn’t produce anemia like AZT. But then a longer study showed that those with a higher dose developed a painful nerve disorder requiring narcotics.”
So although ACT UP has the most up-to-date information on drugs, in the rapidly mutating world of AIDS treatment, that information is only good until the next study. Soon after AZT’s discovery, for instance, ACT UP was rabid in pushing for its release and use; now that the drug’s toxicity and limited effectiveness have become apparent, the group has been just as manically trying to get people to take lower doses and to persuade the government to find alternative therapies.
“We’re always walking a fine line,” says Jim Serafini. “We’re not a medical organization, and although we have a very deep knowledge, it’s very narrow, and we hesitate to play doctor. Prescribing can backfire in your face.”
We’re not going to have Nuremberg trials for the AIDS crisis,” Michael Petrelis is saying, “so we have to go after these people ourselves!” It’s another T&D meeting early in December, and Petrelis is advocating going to the home of New York Times reporter Gina Kolata to protest another in a long line of articles vexing to ACT UP.
Before parallel track could even get off the ground, Kolata wrote a front-page article suggesting that clinical trials were having trouble getting volunteers because the new system allowed people to get the same drugs without adhering to clinical regulations. As soon as the story ran, NIAID’s Dr. Fauci called Kolata and her editor to refute the story: Clinical trials, he said, were being delayed by ordinary bureaucratic paperwork problems and the actual disbursement of the drug; the program of expanded access simply allowed the drug to be used by people who wouldn’t qualify for the trials anyway. The Times ran a letter from the head of the Gay Men’s Health Crisis (it rarely runs one from ACT UP). But the front-page damage lingered.
The story is emblematic of ACT UP’s ongoing quarrel with the Times. Until the paper switched editors a few years ago, it hadn’t even used the word gay. It has no full-time AIDS reporter in Washington, where most news about new treatments is released. Typically, the Times often puts very tentative “cure”-type stories on the front page but buries others.
Yet when ACT UP tried a direct demonstration against the Times last July at the home of its publisher, Arthur Sulzberger, something funny happened. The police presence was equal to ACT UP’s, and the sidewalk in front of Sulzberger’s house had been torn up, so the group ended up marching down to the Times offices — and no one from the mainstream press covered the event.
But at the December T&D meeting, when Petrelis propose