A Knowledge-Empowered Movement
A Lab of One's Own
By the mid-1980s, some groups of community physicians had banded together with patient groups to pioneer new forms of knowledge-making. Instead of waiting for NIAID to test drugs in its lengthy, cumbersome clinical trials at academic centers, primary-care physicians and people with AIDS decided to go about designing such trials themselves. "By integrating scientific trials with normal medical practice, community-based trials allow credible testing of treatment options with far less administrative delay than usually involved, and at far less cost," said John James in AIDS Treatment News . As Mary-Rose Mueller has detailed in an analysis of community-based research, this endeavor served as "a form of professional resistance [by community physicians] to academic medicine" and an opportunity for them to stake out a new jurisdiction within professional practice. At the same time, community-based research promised to bring scientific knowledge-production closer to popular control. Scientists' power, as Bruno Latour has emphasized, stems at least in some measure from their possession of laboratories; now the AIDS movement sought to build its own.
As John James explained in 1988, two very different models of community-based research had arisen. In San Francisco in 1985, researchers such as Donald Abrams, associated with the University of California at San Francisco and San Francisco General Hospital, had formed the County Community Consortium (CCC), a coalition of San Francisco physicians with AIDS practices. The original purpose had been to improve communication between researchers and doctors and disseminate information about treatments more rapidly. Over time, as some of the primary-care doctors became interested in participating in research, the CCC evolved into a mechanism for organizing community-based trials. The idea was that physicians would distribute drugs, monitor patients, and collect data as an integral part of their
regular clinical work with patients. And it wasn't a new idea: in many ways it resembled the community-based cancer research effort sponsored by the NCI, called the Community Clinical Oncology Program. "We have a distinct advantage in being able to follow up patients, because the research is being done where the patients are getting their primary care," commented Abrams, the head of the CCC. "So even if the patient stops participating in the study, we still know … what sort of outcomes they have…."
The second model was pioneered by people with AIDS in New York City, who worked together with a number of activist doctors, including the maverick Joseph Sonnabend. Frustrated by the slow pace of federally sponsored treatment research, they founded an organization called the Community Research Initiative (CRI), which opened its doors in May 1987 under the sponsorship of the local PWA Coalition, the advocacy group run by people with AIDS. From the start, people with AIDS or HIV infection participated in decision making about what trials CRI should conduct and even how they should be organized, "[setting] policies on placebo use, and [insisting] that trials under [CRI] sponsorship be effectively open to women and minorities, not only to gay men." The effect of such community participation, argued James, was to ensure smoother trials and higher levels of "compliance" with the protocols: "Such prior community involvement in policy issues around the selection and conduct of trials makes recruitment easier and increases patient-experimenter cooperation, for example by greatly reducing any need to 'cheat' in the study by taking other drugs without telling the researchers." Community-based research was not suited for high-tech trials requiring sophisticated lab tests that the average primary-care physician did not have the equipment to perform. But other trials, involving minimal data collection, could easily be conducted out of doctors' offices. Drug companies, also impatient with the NIAID trials system, proved interested in the concept as well, and soon CRI had a number of contracts to conduct studies for different companies, both large and small.
Still, community-based research invited skepticism. "Traditional researchers thought that community doctors would not be sophisticated enough to run trials," said Mathilde Krim, whose organization, AmFAR, would later become a chief funder of community-based research. "But actually they were highly sophisticated…. After all, they had been managing the disease for years." This sort of "hands-on" expertise did not, in itself, establish community-based research as
credible in the eyes of mainstream researchers or government health officials, who were more invested in a conception of medicine as "science," not "art." Rather, public demonstration of the credibility and viability of community-based AIDS research came with the testing of aerosolized pentamidine, a form of prevention against deadly pneumocystis pneumonia. It was a therapy that community-based research at the CCC and CRI effectively rescued after NIAID bungled its own efforts to test it.
In February 1987 researchers recruited by NIAID to participate in its clinical trials program rated research into prophylactic aerosolized pentamidine as a high priority: preventing pneumocystis pneumonia was a much better therapeutic strategy than simply treating people once they contracted the disease. But it wasn't until June the following year that researchers actually began to recruit patients into the NIAID trials, after more than a year of writing and rewriting the protocols and negotiating with Lyphomed, the manufacturer of the product. Meanwhile, in May 1987, a group of activists including Michael Callen, the well-known dissenter on the HIV hypothesis who was also on the board of CRI, had met with Anthony Fauci and pleaded for him to issue federal guidelines recommending pentamidine use to prevent PCP. When Fauci refused, citing the lack of data on efficacy, Callen returned to New York to tell his fellow board members: "We're going to have to test it ourselves." In San Francisco, the CCC had also launched its own study, a three-armed trial where patients received different doses of pentamidine but no one received a placebo. Denied funding by NIAID, the CCC received money for the trial from Lyphomed and the University of California.
In 1989, after examining study data from both the CCC and CRI, the FDA approved aerosolized pentamidine for prophylactic use against PCP—the first time in its history that the agency approved a drug based solely on data from community-based research. Before accepting the CRI's data, FDA representatives had visited the CRI's offices in New York and gone over their methods and their paperwork. They came away satisfied that "good science" was being done. This was essential for the legitimation of CRI, according to Dr. Bernard Bihari, a member of the board of directors: "Doing good science allowed us to establish our credibility."
Plaudits soon arrived from all quarters. "The Community Research Initiative … offers the possibility to combine the technical expertise of the research community with the outreach potential of community
health clinics and physicians in community practice," wrote the Presidential Commission on the HIV Epidemic in its 1988 report, urging direct federal funding of the community-based research programs. One member of the commission described CRI as "one of the best things to have come out of the AIDS effort." Said Anthony Fauci the following year: "What I see in the community programs is totally compatible with the mission of the NIH."
The successes of community-based research notwithstanding, those who cared about the overall progress of AIDS research could hardly afford to ignore the federal agencies that coordinated the bulk of the effort. In early 1987, deep concerns about NIAID's clinical trials and the FDA's regulatory requirements—not to mention the drug companies' obedience to the profit motive, the religious right's intolerance, and the Reagan administration's general indifference—combined to push AIDS activism into a new level of energy and organization. On the East Coast, the gay playwright and all-around rabblerouser Larry Kramer, who had helped found the Gay Men's Health Crisis at an earlier juncture in the epidemic, was one of the initiators of a new group in New York City, a radical activist organization called the AIDS Coalition to Unleash Power—better known by its acronym, "ACT UP." On the West Coast, a group of San Franciscans who called themselves the Citizens for Medical Justice began organizing a series of demonstrations against Burroughs Wellcome at its Bay Area offices, protesting the price of AZT. Citizens for Medical Justice then transformed itself into the AIDS Action Pledge, which in turn became the San Francisco chapter of ACT UP.
Soon there was an ACT UP/Chicago and an ACT UP/Houston, an ACT UP/New Orleans and an ACT UP/Seattle. Although AIDS activism has remained significantly stronger in the United States than elsewhere, most likely due to the greater strength of the gay and lesbian movement and the greater salience of identity politics in general in the United States, ACT UP eventually developed international dimensions. By the early 1990s there were also ACT UP chapters in Sydney, London, Paris, Berlin, Amsterdam, and Montreal. Each chapter was autonomous, though informal links connected them.
A magnet for radical, young gay men and women, ACT UP practiced an in-your-face politics of "no business as usual." Adopting
styles of political and cultural practice deriving from sources as diverse as anarchism, the peace movement, the punk subculture, the feminist health movement, and gay liberation "zaps" of the 1970s, ACT UP became famous for its imaginative street theater, its skill at attracting news cameras, and its well-communicated sense of urgency. "Silence = Death" read its characteristic slogan, set against the pink-triangle symbol of gay liberation (itself a symbolic appropriation of the patch worn by homosexuals in the Nazi death camps). ACT UP chapters typically had no formal leaders; in many cities, meetings operated by the consensus process.
As Joshua Gamson described in a participant-observation study of the San Francisco chapter, ACT UP shared the basic characteristics of so-called new social movements—"a (broadly) middle-class membership and a mix of instrumental, expressive, and identity-oriented activities." By "staging events and by carefully constructing and publicizing symbols," ACT UP "attacks the dominant representations of AIDS and of people with AIDS and makes attempts to replace them with alternative representations." Though the New Yorkers were particularly well connected to the art world and the communications media, ACT UP in general quickly perfected a highly dramaturgical style of activism and an abiding concern with techniques of expression.
On the national scene, the New York City chapter dominated, with more than 150 members at regular weekly meetings and a three hundred thousand-dollar budget by the end of 1988. But chapters in San Francisco, Los Angeles, and Boston were also prominent within the movement. Activists came from all walks of life. Yet as results from a survey of ACT UP/New York members conducted by Gilbert Elbaz suggest, "the group was predominantly gay, white male [with ages] between 26 and 35." Members were also "predominantly sero-negative, highly educated, and part of the new middle class." In Elbaz's sample of 413 activists, 80 percent were men and 78 percent were white. Thirty-five percent had done at least some postgraduate study. It was also a highly politicized group: More than half of Elbaz's respondents had participated in demonstrations before joining ACT UP; a good number had been involved in movements such as the peace movement and the feminist movement. Many of the women, in particular, had had experience with civil disobedience leading to arrest.
For some, radical AIDS activism provided a "home" within the gay and lesbian movement. Commented New York activist David Barr, a lawyer by training: "I can't tell you how many gay men … that I
know who said, 'ACT UP was the first time I've ever felt a part of a gay community.' That was certainly the case for me. I mean, the 'gay community' before that was always more alienating to me than anything else…." For others, like Michelle Roland, whose father had been jailed with Martin Luther King and who grew up reading United Farmworkers literature in her Berkeley home, joining the San Francisco chapter of ACT UP was a natural outgrowth of radical politics. But many, including Roland, have pointed to the deaths of close friends as the immediate, mobilizing incidents that provoked them to become involved. And they have recalled their frustration with the prevalent notion that since AIDS was inevitably fatal, all that could be done for people with AIDS was to provide palliative care.
The Discourse of Genocide
Especially in the early years of the epidemic, some had speculated openly that AIDS had emerged as an act of genocide—as a deliberate attempt, perhaps by government scientists, to eliminate "undesirable" populations by spreading an infectious agent among them. Now, with the rise of groups such as ACT UP, a new conception of genocide gained currency in activist rhetoric: genocide described the consequences of the failure of governmental and medical authorities to respond to the epidemic adequately. Genocide was not the product of anyone's action but the by-product of in action or willful neglect. As AIDS activists mobilized to focus public attention on the epidemic and convince a Republican administration to fund prevention, treatment, research, and social services, the new conception of genocide proved a useful framing device.
One of the prime enunciators of the charge of genocide-by-neglect was Larry Kramer, the New York activist. In a book entitled Reports from the Holocaust , Kramer argued that "a holocaust does not require a Hitler to be effective…. Holocausts can occur, and probably most often do occur, because of inaction . This inaction can be unintentional or deliberate." Kramer's sidestepping of the question of intentions in no way inclined him to be charitable toward those he considered perpetrators of genocide. Writing about Ronald Reagan and various government health officials, Kramer declared them all "equal to Hitler and his Nazi doctors performing their murderous experiments in the camps—not because of similar intentions, but because of similar results."
Genocide by neglect became one of the key frames employed by
ACT UP in its formative years of mobilization. If, by this logic, government officials were murderers, then people with AIDS were to be understood as casualties of state-sponsored violence. In this context, the Nazi-era pink triangle in the ACT UP logo took on additional resonance. Soon the stark image of a bloody palm print could be seen stickered to the backs of black leather jackets from New York to San Francisco, with the caption reading: "The U.S. government has blood on its hands."
The FDA under Fire
Though its targets were always multiple, throughout 1987 and 1988, ACT UP trained its attention particularly on the FDA, perceived to be the roadblock in the way of access to AIDS drugs. In March 1987, the FDA commissioner announced a new plan to create a special category of unapproved drugs called Treatment Investigational New Drugs (Treatment INDs), to be available on a compassionate use basis to patients with terminal illnesses whose doctors contacted the FDA. But in essence this was nothing more than a codification of existing, case-by-case compassionate use policies. AIDS activists were not mollified; "Drugs into bodies" was their war cry.
"Many of us who live in daily terror of the AIDS epidemic cannot understand why the Food and Drug Administration has been so intransigent in the face of this monstrous tidal wave of death," wrote Larry Kramer in an opinion piece published in the New York Times . "There is no question on the part of anyone fighting AIDS that the F.D.A. constitutes the single most incomprehensible bottleneck in American bureaucratic history…." "In addition to ribavirin, why is the F.D.A. withholding Ampligen; Glucan; DTC; DDC; AS 101; MTPPE and AL 721?" he asked in reference to some of the many experimental drugs that were rumored to be efficacious. Patients had no interest in paternalism, Kramer insisted: "AIDS sufferers, who have nothing to lose, are more than willing to be guinea pigs." Similarly, Martin Delaney, executive director of the San Francisco-based Project Inform, struck a chord that resonated deeply with U.S. political culture by painting the FDA as a would-be "Big Brother" and insisting on the individual's basic right to choose. In public debates and private meetings with AIDS clinical researchers and FDA officials, Delaney sought to reframe the very purpose of the FDA: rather than seek only to protect the public from ineffective or dangerous therapies, the FDA should take an active stance to promote the nation's health.
AIDS activists were not the only voices challenging the FDA. For years, conservatives from places ranging from the Heritage Foundation to the offices of the Wall Street Journal to—most recently—the corridors of the White House had been seeking to roll the "deregulation" bandwagon onward in order to focus on the pharmaceutical industry. The FDA was killing the drug companies and preventing useful products from getting to market, the argument ran; the best solution would be to repeal the Kefauver-Harris amendment, which had granted the FDA the authority to assess the safety and efficacy of drugs. "Especially considering who was the president, we had concern" about adding fuel to the deregulatory movement, recalled David Barr of ACT UP/New York: "But it wasn't enough concern that it would stop us from doing what we were doing." Soon an unlikely alliance had developed—usually tacit, but sometimes explicit—between AIDS treatment activists and conservatives, leaving consumer protection groups and traditional liberals on the other side.
When cancer treatment advocates connected to the ultraconservative John Birch Society had used similar grounds to press for access to laetrile in the 1970s, a confluence of interest with pro-market forces was perhaps less surprising. But when AIDS Treatment News plugged a Heritage Foundation report called "Red Tape for the Dying," describing it as proposing "a workable, politically possible change which could solve part of the AIDS 'drugjam,'" or when Project Inform began collaborating on a regulatory proposal with the Competitive Policy Institute, a conservative policy group, everything started to seem upside down, and liberal politicians might have been forgiven their bewilderment at becoming the target of criticism by their usual allies. Henry Waxman, the liberal chair of the health sub-committee of the House of Representatives, found himself in a peculiar plight when he raised objections to the Treatment IND proposal. The Wall Street Journal , suggesting that Waxman "has been to new-drug development in this country what the troll under the bridge was to forward progress in the Billy Goats Gruff," noted with evident glee: "If he opposes the administration initiative, it will be interesting to hear him explain it to AIDS victims in his West Hollywood constituency."
The FDA was being pressured from all sides, particularly by the increasingly flagrant flouting of the law by the AIDS treatment underground. Importing unapproved drugs had become an organized and global operation, with regular couriers flying in treatments such as dextran sulfate from places like Japan and then distributing them at
bargain prices to individuals all around the United States. Organizations called "buyers clubs" (sometimes also called "guerrilla clinics"), operating in a gray zone of legality, had sprung up in major cities around the United States, swapping information about treatments and selling a range of unapproved compounds and alternative therapies. By October 1987, Project Inform's newsletter reported ten such organizations in the United States, plus one in Vancouver and one in London. These organizations had benevolent motivations and, indeed, protected their customers from less scrupulous entrepreneurs seeking to profit from "quack" remedies. But the FDA was far from convinced of the wisdom of tolerating their operations. "This is a very fine line we're walking," said Frank Young, the FDA commissioner, acknowledging the practical limits of pursuing a strict enforcement policy against the buyers clubs: "Since there's nothing else available except AZT, we are trying to make available the opportunity for patients to get other drugs and treat themselves."
When Young appeared in Boston at the Lesbian and Gay Health Conference in July 1988, he confronted a hostile audience of one thousand; the first three rows were filled with ACT UP demonstrators holding signs saying "FDA, YOU'RE KILLING ME." While some demonstrators conducted a mock "die-in," others held up their watches with alarms ringing: for people with AIDS, time was running out. But to the surprise of the audience, Young had come to announce that the FDA would now permit the importing of unapproved AIDS drugs in small quantities for personal use. In a remark to a reporter after his talk, Young described his motivations: "There is such a degree of desperation, and people are going to die…. I'm not going to be the Commissioner that robs them of hope." But according to a reporter for Science , the change in policy "stunned" many in the research community: "One official in the federal government's AIDS Program went so far as to suggest that the FDA commissioner had gone 'temporarily insane.'"
AIDS activists, however, had no intention of letting up the pressure on the FDA—certainly not in response to the limited new policy of importation for personal use. Plans began in New York City, San Francisco, and elsewhere for a demonstration that would "shut down" the FDA. In an early example of what would prove to be periodic position papers on the state of AIDS research, ACT UP/New York distributed a thirty-five-page, closely argued document entitled the "FDA Action Handbook," designed to explain to the mass membership the medical and political justification for the action. "Many Federal agencies, not
to mention local and state ones, have been derelict in the fight on AIDS," wrote Jim Eigo and Mark Harrington, two of the authors: "Yet only one agency, the FDA, is actively blocking the delivery of promising drugs to PWAs and people with HIV infection." Sections of the handbook included discussion of topics such as "What Is the FDA?" "A Brief History of the FDA," "The Standard Drug Approval Process," "Drug Horror Stories," and "Exclusion of Women, People of Color, Poor People, People in Rural Areas, IV Drug Users, Hemophiliacs, Prisoners & Children from Experimental Drug Trials." The document is noteworthy for its use of "atrocity tales" and for its construction of an antagonist identity: "Like corporations, [government bureaucracies] consider the data of lives as raw material and grist for a perpetual-motion paper mill. Human need, suffering and death count for very little when compared to the imperatives of orderly process and well-maintained policies."
On October 11, 1988, following a national display of the Names Project AIDS Quilt on the Capitol Mall in Washington, D.C., more than a thousand demonstrators from around the country converged on FDA headquarters in Rockville, Maryland, to "seize control" of what some labeled the "Federal Death Administration." Protesters fell to the ground holding mock tombstones with caustic inscriptions: "I got the placebo. R.I.P."; "As a person of color I was exempt from drug trials." Two hundred demonstrators were arrested by police, who wore rubber gloves to protect themselves from the supposed risk of HIV infection.
It was a protest that, in the words of two chroniclers, "represented … a culmination of our early efforts. …" It also marked "a turning point in both recognition by the government of the seriousness and legitimacy of our demands and national awareness of the AIDS activist movement." The ACT UP/New York Media Committee had "distilled" the message of the "FDA Action Handbook" to explain it to the press in simple terms: Protesters demanded immediate access to drugs proven safe and theoretically effective in Phase I trials. Double-blind, placebo-controlled trials should be declared unethical and replaced with alternative trial designs. The FDA should make it clear that it would not tolerate trials that prohibited its participants from taking simultaneous prophylaxis against opportunistic infections. People from all affected populations—gays, injection drug users, and people with hemophilia; women and men; whites and people of color— must be given access to trials. Medicaid and private health insurance should cover experimental drug therapies.
"The meeting at the FDA two weeks later was very different," recalled David Barr, "because, not only had we been able to show our firepower out on the street, but when we sat down at the table we had a list of issues that we understood—we were very knowledgeable about them by that time. …" Significantly, activist strategies and tactics in negotiation with FDA officials differed considerably from the colorful display outside the building. That "was theater and we knew it was theater," explained Barr. "It was a much smaller group of people who were actually inside at the table, and we wouldn't go in there saying, `Okay, we want to go through these forty demands with you.' We were savvy enough to say [ahead of time], `What are our issues at this meeting with this group of people? Let's talk about these five things, and what is our priority'—and we learned how to do a meeting. …"
The simultaneous use of insider and outsider tactics meant, however, that activists needed to establish working relationships with the same people they had vilified in public statements and demonstrations. Similarly, activists needed to engage with the nuts and bolts of policies and research practices whose defects they had heretofore been content to paint with a broad brush. Though activists continued their bitter criticisms of government agencies and individual scientists, they resisted the notion—found, for example, in the animal rights movement —that the scientific establishment was "the enemy" in some absolutist sense. "I wouldn't exaggerate how polite we were," reflected Mark Harrington. "At the same time, I would just say that it was clear from the very beginning [that we recognized that], as Maggie Thatcher said when she met Gorbachev, `We can do business.' We wanted to make some moral points, but we didn't want to wallow in being victims, or powerless, or oppressed, or always right. We wanted to engage and find out if there was common ground."
Beyond the FDA
The Wall Street Journal made effective literary use of the iconography of the protest in its editorial two days afterward, which described the "battle between people who have all the time in the world and people who have little time left in their lives." But what the Journal may have failed to observe was how the activists themselves had already set their sights well beyond the walls of the FDA building. Though the main goal, to be sure, was access to treatments,
in pursuit of that goal activists had to engage with the researchers and the health professionals, the pharmaceutical houses and the insurance companies, NIAID and the NCI and the Department of Health and Human Services. For all its importance as a symbolic target, the FDA was just one player; and the demonstration in Rockville, for all its significance in the construction and legitimation of a nationwide movement, in a sense represented the end of an era. Arguments about competing philosophies of drug regulation would continue. But the more activists learned about the FDA's drug approval policies, the more they became enmeshed in debating the details of what counted, in the agency's eyes, as "good science." And the more they became concerned with the science of clinical trials, the more the focus of their energy shifted from the FDA to NIAID. "While the question of a person's freedom to use a treatment whether or not it works is indeed an important issue," commented AIDS Treatment News in 1988, heralding this new turn, "the more important question is what treatments do in fact work, and how can the evidence be collected, evaluated, and applied quickly and effectively."
Of course, these two issues—the ethics of access to therapies and the methodology of clinical trials—often came together in concrete ways. For example, some worried about the potential conflict between access and research: would unrestricted access to experimental treatments hamper researchers' abilities to conduct trials? After all, if every person with AIDS could obtain an experimental drug with a minimum of hassle, why would anyone enroll in a clinical trial? In effect, the capacity to conduct clinical trials presupposed coercion through control of the supply of the drugs. Researchers and health officials took this point for granted; for example, Ellen Cooper, the head of the FDA's Antiviral Drug Division, argued in JAMA that "a national policy of early widespread availability of unproved experimental agents would slow or even halt the completion of controlled clinical trials through which therapeutic advances are established and then improved on. …" Recalled Cooper: "I really understood, or emphathized with, where they were coming from, which is … the individual patient with a life-threatening disease." But in her view, it was a simple question of the greatest good for the greatest number; and the individual's right to treatment would have to take a back seat to research that could benefit the public at large.
AIDS activists protested the implicit coercion, suggesting, in Martin Delaney's words, that it was "morally offensive [to] use access to
treatment as a lever to force subjects into studies. The fact that such an argument is openly made demonstrates how detached the regulators' mindset has become." But to the extent that activists succeeded in swaying researchers and government officials on this point, they did so by turning the argument on its head. "The policy of restriction," said Delaney, addressing the 1988 meeting of the Infectious Diseases Society of America, "is itself destroying our ability to conduct clinical research." Delaney explained: "AIDS study centers throughout the nation tell of widescale concurrent use of other treatments; frequent cheating, even bribery, to gain entry to studies; mixing of drugs by patients to share and dilute the risk of being on placebo; and rapid dropping out of patients who learn that they are on placebo. … Such practices are a direct result of forcing patients to use clinical studies as the only option for treatment." If these policies continued, Delaney warned, "it will soon be impossible to conduct valid clinical AIDS research in the US."
This was a forceful argument that spoke to researchers' basic interests while playing on their fears. Continuing in his role as the defender of good science, Delaney proposed the solution: "If patients had other means of obtaining treatment, force-fitting them into clinical studies would be unnecessary. Volunteers that remained would be more likely to act as pure research subjects, entering studies not solely out of a desperate effort to save their lives." Their motivations for doing so might be altruism or a desire to obtain other tangible rewards of clinical trial participation, such as access to free, high-quality medical care.
Over the next few years, treatment activists would pursue a three-pronged agenda, one that Delaney's solution in many ways suggested. First, they would fight with the FDA over what counted as sufficient proof of safety and efficacy in a medical emergency, speeding up the approval of a number of drugs, particularly ones that treated opportunistic infections associated with AIDS. Second, in the case of experimental drugs still being tested, they would press for institutionalized mechanisms of "expanded access" outside of the framework of clinical trials. And third, they would seek to transform the clinical trials themselves, to make the trials more relevant, more humane, and more capable of generating trustworthy conclusions. This complex agenda would require a thoroughgoing engagement with the biomedical establishment—an encounter that would have important implications for the practice of medical research, the dynamics of the movement, and the establishment of certainty or uncertainty about specific experimental treatments.
Learning New Languages
The shift in attention from the FDA to NIAID raised important questions about the capacity of laypeople to intervene in science. Put bluntly, how did these activists know what they were talking about? What was the source of their expertise? It was one thing to educate oneself about one's own illness and thereby shift the dynamics of power in the relationship between doctor and patient. It was quite another to suggest that one had a role in the actual conduct of scientific research.
Part of the explanation lies in issues of organization, resources, and community. Patients with heart disease who want to share information or organize a critique of medicine have to seek out like-minded individuals and find points of commonality with them. People with AIDS—particularly in gay communities—already knew how to find one another, and they benefited from a history of political and social organization. By 1988 there was an entire infrastructure encompassing treatment publications and buyers clubs, advocacy groups and grassroots activists—a firm foundation that could then support the widespread dissemination of medical knowledge. And by this point, these organizations' knowledge about AIDS often exceeded that of the average practicing physician. "When we first started out, there were maybe three physicians in the metropolitan New York area who would even give us a simple nod of the head," said the director of a New York City buyers club in 1988: "Now, every day, the phone rings ten times, and there's a physician on the other end wanting advice. [From] me! I'm trained as an opera singer!"
This was the base on which the treatment activists could build as they turned their attention to clinical trial design. To be sure, not every AIDS treatment activist started without scientific training. Iris Long, for instance, had worked for twenty years as a pharmaceutical chemist before she decided to join ACT UP/New York; she quickly made herself indispensable as a teacher of raw recruits. Andy Zysman, who would become a key activist addressing issues of cancers associated with AIDS, was an emergency physician at Kaiser Hospital; he joked that his professional background caused him to be "viewed as a reactionary Republican" when he joined ACT UP/San Francisco. More typically, however, the stars of the treatment activist movement were science novices, but ones who were unusually articulate, self-confident, and well educated—"displaced intellectuals from other fields," according to Jim Eigo, a New York City treatment activist
with a background in the arts. Often these activists were able to parlay other social and personal advantages into a new type of credibility—to convert their "capital" from one form to another, as Bourdieu would put it.
The trajectory of Mark Harrington, a de facto leader of ACT UP/ New York's Treatment & Data Committee, exemplified one pathway to expertise among the key treatment activists. Harrington studied German critical theory in college at Harvard and had worked as a coffeehouse waiter and a freelance writer. When he discovered ACT UP, Harrington was writing scripts for a film company. "The only science background that might have proved relevant was [what I had] when I was growing up: my dad had always subscribed to Scientific American , and I had read it, so I didn't feel that sense of intimidation from science that I think a lot of people feel," Harrington recalled. Taking quick stock of his ignorance about science and the federal bureaucracy, Harrington stayed up one night and made a list of all the words he needed to understand. That list evolved into a fifty-page glossary that was distributed to ACT UP members. Harrington's frequent collaborator on the Treatment & Data Committee, Jim Eigo, authored poetic critiques of scientific practice that were peppered with references to Shakespeare. These were intellectuals, to be sure, but they represented the "humanistic" wing of the intelligentsia, a fact that shaped the contours of their engagement with the other, "technical" wing. They learned their science, but their engagement with it rested on moral principles and an ethic of commitment, which they juxtaposed with images of the clinical detachment of the scientists and the bureaucrats. "I have a face in my mind for every AIDS-related condition I can describe to you," said Eigo, "… every one the face of a friend." Science and bureaucracy, by contrast, were cold and passionless—epitomized, in activists' eyes, by the FDA's Ellen Cooper, whom some labeled the "Ice Queen."
Steven Shapin has noted, in an analysis of the historical constitution of the expert/lay divide, that the question of who possesses "cultural competence" in science is "one of the most obvious means by which we, and people in the past, discriminate between `science' and `the public….'" The most crucial avenue pursued by treatment activists in the construction of their scientific credibility has been precisely the acquisition of such competence—that is, learning the languages and cultures of medical science. Through a wide variety of methods—including attending scientific conferences, scrutinizing research protocols,
and learning from sympathetic professionals both inside and outside the movement—the key treatment activists have gained a working knowledge of the medical vocabulary. While activists have also insisted on the need to bring "nonscientific" language and judgments into their encounters with researchers, they have nonetheless assumed that the capacity to speak the language of the journal article and the conference hall is a sine qua non of their effective participation. In a learning approach that one activist, G'dali Braverman, has frankly characterized as "ass-backwards," activists often began with the examination of a specific research protocol in which patients had been asked to enroll and, from there, went on to educate themselves about the mechanism of drug action, the relevant "basic science" knowledge base (such as considerations of the viral replication cycle of HIV or the immunopathogenesis of AIDS), and the inner workings of "the system" of drug testing and regulation, including the roles of the pharmaceutical companies and the relevant government advisory committees.
Other activists have explicitly used the metaphors "foreign language" and "foreign culture" to describe their initiation into treatment activism. Brenda Lein, a San Francisco activist, described the first time she went to a local meeting of the Treatment Issues Committee of ACT UP: "And so I walked in the door and it was completely overwhelming, I mean acronyms flying, I didn't know what they were talking about. I thought, `Oh, they're speaking Greek and I'm never going to understand this language.' … Hank [Wilson] came in and he handed me a stack about a foot high [about granulocyte macrophage colony-stimulating factor] and said, `Here, read this.' And I looked at it and I brought it home and I kept going through it in my room and …, I have to say, I didn't understand a word." But after reading it "about ten times," Lein concluded: "Oh, this is like a subculture thing; you know, it's either surfing or it's medicine and you just have to understand the lingo, but it's not that complicated if you sit through it. So once I started understanding the language, it all became far less intimidating."
And indeed, the remarkable fact is that once they acquired a certain basic familiarity with the language of biomedicine, activists found they could also get in the doors of the institutions of biomedicine. Once they could converse comfortably about Kaplan-Meier curves and cytokine regulation and resistance-conferring mutations, activists increasingly discovered that researchers felt compelled, by their own
norms of discourse and behavior, to consider activist arguments on their merits. Not that activists were always welcome at the table—to quote Lein again: "I mean, I walk in with … seven earrings in one ear and a Mohawk and my ratty old jacket on, and people are like, `Oh great, one of these street activists who don't know anything…'" But once she opened her mouth and demonstrated that she could contribute to the conversation intelligently, Lein found that researchers were often inclined, however reluctantly, to address her concerns with some seriousness.
The "Impurities" of Activism
Few social movements are inclined to mix "moral crusades" with "practical crusades." Treatment activism in the late 1980s was distinctive for the powerful fusion of these two forms. A case in point was the presentation made by activists in early 1989 before a special governmental committee charged with reviewing procedures that concerned cancer and AIDS drugs—generally called the "Lasagna committee" after its chair, Dr. Louis Lasagna of Tufts University, in Massachusetts, an authority on clinical trials and FDA approval policies. What particularly caught Lasagna's attention was the extraordinary contrast between the AIDS activists and the spokespersons for other illnesses. On one hand, there was the "very well behaved," "well-dressed" woman dying of breast cancer, who testified before the committee in moderate tones about the need for new cancer therapies. On the other hand, there were the noisy AIDS activists who "came dressed in any old way almost proud of looking bizarre." The activists' "penchant for the dramatic" was well evidenced at the hearings, Lasagna later recalled: "About fifty of them showed up, and took out their watches and dangled them to show that time was ticking away for them." But the activists' message did not rest on theatrics alone. "I'd swear that the ACT UP group from New York must have read everything I ever wrote," said Lasagna. "And quoted whatever served their purpose. It was quite an experience."
Even as activists creatively blended moral and scientific claims-making, they were burrowing progressively deeper into the institutional structures of the federal health bureaucracies. In consequence, activist identities were being reshaped—that was part of what the construction of credibility entailed. As Mark Harrington recalled after contributing to the activists' testimony before the Lasagna committee:
"There was a lot of euphoria, but there was also a wistfulness about crossing over. From then on we were sort of inside/outside, and not just outside; and [we] sort of lost innocence. I knew that we would never be so pure and fervent in our belief that we were right, because we were actually going to be engaged and, therefore, be more responsible for some of the things that actually happened." As treatment activists sought to mobilize supporters and construct their own frames for the problems with AIDS research, they experienced the tensions—endemic to many social movements—between "prefigurative" and "accommodationist" politics. On one hand, they sought to "live their values" and see them inscribed on the inner workings of the institutions of medicine and science. On the other hand, they strove for effectiveness within the system as constituted. The tension between these goals would lead to cleavages and fractures in AIDS activist organizations over the succeeding years.
A broadly similar contradictory impulse could be observed in the educative strategies of the grassroots treatment organizations and in the conceptions of science that they put forward. Project Inform, for example, didn't simply advise people with AIDS or HIV infection what to do or what to think, it also sought to educate them about how to weigh scientific claims, read between the lines of the journal articles and the news reports, and make informed treatment decisions—how, in other words, to assess credibility in science. In the October 1987 issue of its publication, PI Perspectives , Project Inform set out the dilemma: "What is a reasonable strategy in the absence of hard scientific conclusions? How do I choose something that is likely to help without throwing money away?" It's not "reasonable," the article maintained, to put much faith in unscientific "personal testimonials"; "to avoid being misled by personal enthusiasm or stifled by the turgid pace of science, one must focus as much as possible on objective, measurable indicators." When considering a new treatment, one should first ask what formal research data are available on this treatment. Next, who conducted the research? ("We must look to the reputations of the authors and institutions they are working for.") Where was the research published? ("The best shows up in major journals, such as New England Journal of Medicine, Lancet, JAMA , and Science .") Do the research data lack "apparent validity"? ("Are there obvious internal inconsistencies or misleading statements"?) What controls were employed in the study? How many people were studied? Is there a plausible theory for the mechanism of antiviral action? How is antiviral
activity measured? ("Viral culture methods are notoriously inconsistent.")
In essence, Project Inform was proposing that people with AIDS or HIV infection pursue the same interpretive strategies as do doctors and scientists themselves when they read a scientific journal article: they should weigh the markers of credibility that attest to the validity of scientific claims. Indeed, if anything is surprising about Project Inform's advice, it is the utter conventionality of their assumptions about the telltale indicators of good science. There were no suggestions here, for instance, that forces may sometimes conspire to keep articles out of the prominent journals or that new ideas may spring from unlikely sources. Nor, in the reliance on "objective, measurable indicators," was there any truck with relativist notions about truth being in the eye of the beholder.
This strategy for the knowledge-empowerment of the movement represented one face of AIDS treatment activism and, indeed, one face of Project Inform. At times, the movement asserted its faith in science (or a particular, positivist conception of it): it believed that "only by following the rules of investigation will we ever be certain of a treatments' [sic ] usefulness. We differ with the scientific establishment mostly in regards to the pace of research and the degree of certainty required before a treatment should be made available." At other times, the movement posed fundamental challenges to the conventional scientific wisdom about who produces knowledge and what social practices ensure its validity. This unresolved tension—between reformist and revolutionary critiques of scientific practice—would surface with regularity in the debates over treatment in the years to come.