Inside and Outside the System
New Antiviral Research and the "Receding" Bottleneck
One irony in the push to license ddI and ddC is that, long before the drugs were approved, the hopes of researchers, doctors, and activists had moved well beyond the infertile terrain of the
nucleoside analogues. Officially, the research establishment continued to tout the potential virtues of combination therapy with the nucleosides and to promote the goal of turning AIDS into a "chronic manageable illness," though increasingly it appeared that the announcement in Montreal of its advent had been more than a little premature. Activists were less sanguine about the pace of progress. By the time of the San Francisco conference in 1990, ACT UP/New York had concluded: "This year, the hopes of many in the AIDS communities have reached a low ebb. It is clear to all that anti-HIV agents such as AZT, ddC and ddI will not, in any conceivable combination, stop the progression of HIV infection—at most, for those who are lucky, they will significantly slow it."
Writing in Outweek in 1990, New York activist Larry Kramer put the position in his own inimitably vituperative style. He accused researchers like Margaret Fischl and Paul Volberding of having "pumped AZT down the throats of AIDS patients like they were Strasbourg geese being fattened up for the kill." Kramer averred: "AIDS is not a manageable disease, and there is nothing at present that makes me think that it is going to be a manageable disease in my lifetime or the lifetime of the other 20 million HIV infected. ANYONE WHO TELLS YOU OTHERWISE IS A LIAR ."
ACT UP/New York's Treatment & Data Committee analyzed the predicament in the 1990 update of its AIDS Treatment Research Agenda , distributed at the San Francisco conference. The ACTG was concentrating its resources on "massive Phase II trials,of stop-gap first generation nucleoside analogues," to the exclusion of just about everything else. Hardly any compounds were in Phase I trials, even though dozens were known to act against HIV in vitro (the report listed sixty of them, along with many immune therapies, anti-infectives, and other drugs that awaited testing). Given the backlog, and given the ACTG's apparent priorities, the emergence of a new generation of antiviral treatments was necessarily years away. In that sense, the problem was no longer the FDA, the Treatment & Data Committee concluded. "As activists make increasing headway with regulators, the bottleneck in AIDS drug development seems to recede towards the beginning of the process, when compounds are taken from test tube and animal studies and administered to humans for the first time." Mixed metaphor though it may have been, this notion of the "receding bottleneck" served to orient treatment activists in the years to come.
For patients, the pace of AIDS antiviral research was measured in
relation to their own life expectancy; but researchers, whose point of reference was the rate of scientific progress for other diseases, found the advance of knowledge both swift and encouraging. "We have learned more about the AIDS virus than any other virus that affects humans," Dr. William Haseltine told New York Times reporter Gina Kolata in late 1990, reciting what had become almost a mantra in AIDS research circles. "Molecular biologists and drug development experts have climbed rapidly from a valley of despair to a peak of expectation in their struggle to combat the AIDS virus," wrote Kolata, focusing on a recent publication in Science by NCI scientists Hiroaki, Yarchoan, and Broder that identified "13 major chinks in [the virus's] armor, each one of which may in time yield to therapeutic attack." "There really is a large and growing menu" of ways to interrupt the cycle of viral replication, Broder told Kolata: "I think it's a very important time."
John James agreed there was room for "cautious" optimism, especially with regard to three promising sets of "designer drugs" that were farthest along in development. First, there were new drugs that acted at the same point in the virus's replication cycle (reverse transcription) as AZT, ddC, and ddI but didn't belong to the dideoxynucleoside family. These so-called non-nucleoside reverse-transcriptase inhibitors included the "L drugs" made by Merck (formally labeled "L-697, 661" and "L-697, 639") and a drug called nevirapine developed by Boehringer Ingelheim Pharmaceuticals.
Second, Hoffman-LaRoche had been developing a "tat inhibitor," which was designed to block the protein produced by the viral gene called tat . This protein, required for the replication of HIV, acted "downstream" of reverse transcriptase in the replication cycle; it was responsible for "transactivation," a speeding-up of the manufacture of the new viral particle. In vitro, the tat inhibitor was synergistic with AZT, meaning that the drugs might conceivably be given in combination to deliver a one-two punch against the virus. Unlike the reverse transcriptase inhibitors, a tat inhibitor would, in theory, work against chronically infected cells such as macrophages; such cells behave abnormally but are not killed by the virus. In addition, some believed that a tat drug also showed promise against Kaposi's sarcoma. Finally, Hoffman-LaRoche's drug seemed particularly promising because it was chemically related to diazepam (Valium), a well-known drug that had already been used extensively in humans.
The third exciting set of compounds, still under development, were called protease (or proteinase) inhibitors. These drugs would block the
action of a different enzyme, protease, that plays a role at yet a later stage in the viral life cycle. After being assembled, the newly produced virus that buds from the infected cell is in an immature state; the protease enzyme then processes the genetic material to complete the virus's development. Only at that point does the new virus become infectious. In the presence of a protease inhibitor, therefore, the new virus released into the bloodstream would be harmless, incapable of infecting other cells. At least, that was the theory being pursued by a number of pharmaceutical companies, including Hoffman-LaRoche.
These were the practical applications of the intense scrutiny of HIV by molecular biologists; one problem, however, was that scientific knowledge about the virus far outstripped an understanding of the immunopathogenesis of AIDS in the human body—that is, how the virus directly or indirectly contributed to the eventual collapse of immune functioning. As David Baltimore and Mark Feinberg wrote in an editorial in the New England Journal of Medicine toward the end of 1989: "Humans are genetically heterogeneous, lead idiosyncratic lives, and become infected through a number of routes, and important practical and ethical considerations constrain clinical experimentation. As a result, we are rapidly learning about the role of each of HIV's approximately 10,000 nucleotides, but remain largely ignorant of rudimentary aspects of the processes underlying the development of AIDS in humans." It was believed at the time, on the basis of blood work done with cohort studies, that there were three stages to "HIV disease." First, soon after infection with the virus, there was an initial stage of acute infection marked by a high viral load in the blood, a strong antibody response, and in many cases, symptoms such as a low-grade fever and swollen lymph glands. Then a long, middle stage of "latency" would set in, during which the viral load measurable in the blood was relatively low but the T-cell count gradually declined. In most cases this was succeeded—eventually—by a final stage of crisis, coincident with the onset of opportunistic infections (and, usually, a T-cell count below two hundred per cubic millimeter), in which the viral load once again became high. Increasingly it was also becoming apparent that "latency" was a misnomer, because although the infected person was outwardly healthy, and although the virus might indeed be dormant in some infected cells, the process of viral replication continued throughout the middle stage.
The implication of this clinical picture was that the infected person's immune system initially succeeded in controlling the infection and keeping the virus in check, but over time lost that ability quite
dramatically—for reasons that were not at all well understood, though hypotheses certainly abounded. Some, like Luc Montagnier, argued that simultaneous infection with other agents ("cofactors") speeded up the process of immune breakdown. Others pointed to syncytia formation (the clumping together of infected T cells) or to abnormalities with cytokines (the proteins released by immune system cells that signal other immune cells) or to autoimmune mechanisms. These competing hypotheses sometimes led to contradictory implications for treatment strategies. For example, researchers such as Jonas Salk were working on a "therapeutic vaccine" designed to bolster the immune response in people already infected with HIV; but those who believed that HIV progression was a result of "overactivation" of the immune system feared that such a therapy might actually make the infection progress faster. Clearly, in the absence of a good working knowledge of pathogenesis, it was difficult to elaborate a coherent therapeutic approach that aimed at preventing the development of AIDS and not just the replication of the virus.
A Seat at the Table
Treatment activists in the early 1990s followed the reports of novel therapies with intense interest. How could these drugs get into development faster? How could researchers be induced to focus on them and on the promising anti-infectives for treatment of opportunistic infections, rather than devote federal funds to what activists saw as increasingly arcane trials of different regimens of the nucleoside analogues? To have influence over such questions, activists needed a seat at the table—specifically, places on the committees of the ACTG, where decisions were made about the research priorities that determined how federal funds would be distributed. As activists saw it, the big names in AIDS antiviral research—Paul Volberding, Douglas Richman, Thomas Merigan, Margaret Fischl, Martin Hirsch—dominated the committees that voted, predictably, to fund the kinds of studies that these researchers did. Treatment activists wanted to situate themselves as a counterpower to assert their own priorities.
That they might achieve such a lofty goal was plausible only because the activists already were winning their credibility in the methodology wars—the debates over such matters as inclusion criteria, concomitant medication, and surrogate markers in clinical trial design. At the same time, activists hadn't simply studied science and "played nice." Throughout 1990, ACT UP put the same kind of direct
pressure on NIAID that the FDA had been made to endure a few years earlier. One thousand demonstrators from around the United States made a show of force at NIH headquarters in Bethesda, Maryland, on May 21, occupying the office of Daniel Hoth, Fauci's assistant and head of the ACTG program. Activists held banners and shouted slogans: "Ten years, one billion dollars, one drug, big deal." Eighty-two of them were arrested.
Demonstrations had an important function in building the movement and drawing in new activists. Yet it was difficult for treatment activists to frame their critique of NIAID and the ACTG effectively, in a way that would mobilize the masses and capture the media spotlight. In that sense, as John James noted, the change in the rallying site from Rockville in 1988 to Bethesda in 1990 represented "much more than just a different subway stop." "The public does not understand the NIH issues (by contrast to the FDA, which it can easily picture as the 'heavy' keeping promising treatments away from patients). NIH issues center [on] scientific judgments and priorities; it is hard for the public to judge whether or not criticisms have merit." In a word, any critique of NIAID and the ACTG demanded expertise . Even educating the AIDS movement base, let alone the general public, about the problems with the ACTG was a daunting task, though Harrington did his best in passionate screeds published in Outweek and the Village Voice . "The U.S. has poured over a quarter of a billion dollars into the AIDS Clinical Trials Group …, making it the most generously endowed clinical research network in history," wrote Harrington. "Yet the ACTG has managed only to test old drugs inefficiently and new drugs not at all…."
One of Harrington's recurrent themes was that the ACTG operated like a secret society, and he took it upon himself to air the dirty laundry. The ACTG was not some neutral advisory; its meetings were a political field, and the principal investigators who comprised its advisory committees all had vested interests. "Card-carrying virologists" dominated the all-powerful executive committee that made final decisions behind closed doors about which studies to fund. The executive committee ensured that the bulk of the resources went to the giant, high-profile trials of the antivirals, while researchers studying anti-ineffectives were starved for funds. The only solution, the activists insisted, was to throw open the doors of the ACTG and put community representatives on every last committee, from the executive committee on down.
To Fauci and others in NIAID, ACT UP members like Harrington
and Eigo, and certainly more mainstream figures such as Delaney, were known quantities. These activists had in some respects been incorporated into the AIDS establishment; by the time of the Sixth International Conference on AIDS in 1990, they spoke from the podium, rather than shouting from the back of the room. "When it comes to clinical trials, some of them are better informed than many scientists can imagine," Fauci himself insisted in a speech at the conference, adding that researchers "do not have a lock on correctness." For Fauci, there was no great threat in granting the activists' demand to attend ACTG meetings.
Indeed, Fauci may have deemed it both strategic and useful to incorporate a activists into the process: as he later commented, his assumption was that "on a practical level, it would be helpful in some of our programs because we needed to get a feel for what would play in Peoria, as it were." But many of the principal investigators sitting on the ACTG committees were leery of opening the door to the activists. In 1989, according to the account by Bruce Nussbaum, Fauci had told Hoth to get the researchers "used to the idea"—"to tell them that Eigo and Harrington were 'good guys,' smart enough to understand the science.…" But the researchers balked. Nussbaum quotes "one key member of the ACTG" as having told Hoth: "What are you going to do if you want to have a serious scientific discussion about a promising agent and you've got someone from the Provincetown PWA Coalition who thinks that [the drug] Peptide T is the greatest thing since sliced bread.…?"
After members of ACT UP/New York's Treatment & Data Committee crashed a meeting in late 1989, an initial compromise position was offered: a Community Constituency Group (CCG) would be formed, a demographically diverse advisory body of representatives from all communities affected by AIDS that would meer with the ACTG at its quarterly meetings. But by this point activists refused to accept token participation; they sought to open up the closed-door meetings of the key committees—and even to obtain voting rights for the activists, just as the principal investigators enjoyed. After a yearlong campaign that included the demonstration at the NIH campus, Fauci gave the activists what they wanted and forced the researchers to play along All ACTG meetings would be opened up, and each of the twenty-two representatives of the CCG would have a regular seat on one of the ACTG committees, including the executive committee. In exchange, according to Arno and Feiden's account, "Fauci wanted the rhetoric
toned down." These authors quote Fauci as saying: "If [activists] are trying to get into the system, they may have to modify some of their activist modes, but that doesn't mean they have to become Uncle Toms."
The Reconstitution of Identity
Victory or co-optation? Such a stark opposition is inadequate to capture the nuances and micropolitics of activist engagement with the ACTG. Activists certainly were aware of the risks; for some time, they had been elaborating a complex strategy of intervention as both "insiders" and "outsiders." The NIH demonstration was a case in point. Fauci told the New York Times that he "knew the leaders of the protest well and was surprised to hear 'irrational' language on the street from people he had worked with in meetings." But activists, and surely Fauci as well, knew that the language of the street and the language of the meeting room served different purposes and had different intended audiences. Activists, for their part, had been concerned about not jeopardizing the existing working relationships with NIH personnel, as Harrington later recalled: "When we did the NIH demo, Peter [Staley of ACT UP/New York] said, 'Oh, let's call Tony [Fauci] and go and have dinner with Tony and tell him about this demo.… In a way, we'll give him an advance heads-up. But we'll also be saying: "Look, even though we're doing this demo, we still want you to understand that we have a relationship where we can discuss and debate our issues.…"'"
Such maneuvering was a tricky business. Yet the politics of simultaneous insider and outsider activism might well have continued smoothly had it not been for two crosscutting sets of pressures. First, AIDS treatment activism was becoming increasingly diverse , and the establishment of the CCG would make it more so. But different constituencies had different priorities, goals, and degrees of access to federal officials—and, therefore, different opinions about the purposes and the relative merits of insider and outsider strategies. Second, AIDS treatment activism was becoming increasingly more complex (as John James had suggested in comparing NIH issues to FDA issues). The established treatment activists knew about much more than clinical trial methodology and design—by this point they could speak fluently about a host of technical issues that were surfacing in research on AIDS treatments. These activists had become experts of a sort, and
they could engage with researchers, government health officials, and pharmaceutical companies in a way that their fellow activists could not. The practical consequence was that it became harder for individual activists to locate themselves simultaneously on the inside and the outside. Activism tended toward a de facto division of labor—some people working on the inside, others on the outside—thus relocating the expert/lay divide to a position within the movement itself.
The Diversification of Treatment Activism
Treatment activism began in gay communities for the same reason that AIDS activism in general began in gay communities—because gays asserted "ownership" of the social problem and had the material and symbolic resources with which to organize themselves and confront adversaries. But even within the predominantly gay male social movement organizations like ACT UP, various constituencies had asserted their priorities. In New York City, for example, the Women's Caucus of ACT UP had been pursuing treatment issues since 1988 at some distance from the work of the Treatment & Data Committee (the home of Harrington, Barr, Eigo, and others), made up mostly, though not entirely, of men.
Activists in the Women's Caucus, and their counterparts around the country, confronted a complexly interwoven set of obstacles in bringing attention to the health needs of women with HIV and AIDS. In a book on women and AIDS, Gena Corea has described the "crazy-making politics of knowledge" that seemed to bar women from scientific consideration and medical treatment: the Centers for Disease Control's definition of AIDS, created largely with reference to the opportunistic infection contracted by gay men, systematically "exclude[d] the symptoms appearing exclusively in women," such as pelvic inflammatory disease. In very practical terms, this meant that women were not receiving the health and disability benefits that accrued from an AIDS diagnosis. ("Women don't get AIDS, they just die from it," to quote the ACT UP slogan.) However, the definition couldn't be changed to include women's symptoms, the CDC maintained, because of the absence of data proving a causal link between those symptoms and HIV infection. But the necessary data couldn't be generated , because "women of childbearing potential" had largely been excluded from clinical trials (putatively out of concern for their
potential fetuses), and when they were included, no pelvic exams were performed. This meant not only that we failed to learn about the effects of HIV in women, but also that women were denied access to experimental treatments that might have helped keep them alive.
Women activists linked their critique of these practices to an analysis of the history of the medical profession's treatment of women: women had long been considered medically "other." In the case of AIDS, activists charged, biomedicine ignored women except to consider them as "vectors" or "vessels"—as transmission routes to men or to babies, or as carriers of precious fetuses that required protection. Eventually, women activists pressed successfully for a change in the CDC case definition. They also pressured Daniel Hoth and Anthony Fauci to hold a National Conference on Women and HIV Infection in December 1990. According to Maxine Wolfe of the Women's Caucus: "Although men in ACT UP had, by now, been routinely meeting with NIAID officials, in order for women AIDS activists to get just a meeting with them we had to stage a sit-in at the offices of Dr. Daniel Hoth …, make constant phone calls, send him several letters threatening a repeat sit-in, and 'zap' him in front of 5,000 of his colleagues at the Sixth International AIDS Conference. …"
Gay men and lesbians of color also formed caucuses within ACT UP chapters around the country, and some of them, too, became concerned with treatment issues. But, as Cathy Cohen notes in her study, activists of color in ACT UP found themselves "in the precarious position of not being trusted by many in communities of color because of their ties to ACT UP and at the same time not being fully supported by influential members inside of ACT UP." And as Moisés Agosto, who became involved in AIDS activism after moving from Puerto Rico to New York City, discovered, it was often hard to convince members of racial minority communities of the need for activism on treatment issues, given the wide range of concerns confronting them. To the extent that these communities became open to AIDS activism, it was on issues of prevention and care. Treatment activism, Agosto found, was generally perceived as "an upper-middle class, white gay-boy thing to do"—though Agosto tried to demonstrate the importance of the work by translating treatment information into Spanish.
Finally, by the early 1990s, some hemophilia activists had also moved into the arena of treatment activism. Despite the very high incidence of HIV infection among people with hemophilia, this community had been slow to mobilize. Eventually people with hemophilia
would organize forcefully around the question of the culpability of the blood-banking industry in the infection of people with hemophilia through contaminated blood products, and they would pursue legal remedies. But "it's a very geographically dispersed community, there's not a lot of us, [and] we're dying at the rate of one a day, which is a lot considering that there were only probably eight or ten thousand of us infected to begin with," explained Jonathan Wadleigh, a founder of the key hemophilia activist group, the Committee of Ten Thousand. Gay men organizing an activist response didn't need to search far and wide to find others affected by AIDS. By contrast, "with an incidence of one in ten thousand [in the] population, normally you're lucky if you meet one person in a lifetime who has hemophilia."
When Wadleigh decided to begin attending meetings of ACT UP/Boston in the late 1980s, he was "often the only straight person" in the room as well as "the only person with hemophilia." But given the inaction he perceived on the part of the New England Hemophilia Foundation, Wadleigh "began to quickly associate [himself] more with the gay community and … to relate to the brand of activism that was going on there." Recognizing that the level of information about treatments in the hemophilia community was very low, Wadleigh started up a treatment newsletter, summarizing articles from the established grassroots publications such as AIDS Treatment News , the San Francisco AIDS Foundation's BETA , and Project Inform's PI Perspectives . He also became involved in methodological debates about the inclusion criteria for AIDS trials. Boilerplate language in trial protocols routinely excluded anyone with elevated liver enzymes—but people with hemophilia (along with injection drug users) quite often show signs of liver disease and hence have elevated enzyme levels. Wadleigh's fight to liberalize the entry criteria so that more people with hemophilia could participate in clinical trials was, in his view, one of his most significant contributions in the domain of treatment activism.
The Politics of Cleavage
In agreeing to establish a Community Constituency Group that would attend ACTG meetings, Hoth and Fauci proposed that the group include representatives of a wide range of constituencies—gays, racial minorities, women, injection drug users, people with hemophilia, and children. Whether NIAID officials deliberately sought
to dilute the impact of gay male treatment activism, or simply considered it good politics to broaden the community representation, the significance of the CCG was that it became the first place where activists from all these various communities came together to talk about AIDS treatments. Particularly for activists representing communities of color, this was a long-awaited opportunity to present their views before government officials and scientists, and their agenda was broad. The established treatment activists, however, saw it as inappropriate to use the CCG as a forum for issues beyond the purview of the ACTG. They wanted to talk about the science of clinical trials, and they urged the newcomers to "get up to speed." Almost immediately, tensions rose sharply.
At an AIDS Treatment Activist Conference held just prior to a CCG meeting, some called the ACT UP/New York Treatment & Data Committee's agenda a "white male" approach to health care, focused solely on drug development to the exclusion of issues like health care financing, which were of primary interest to women, minorities, and poor people. One ACTG committee meeting ended in chaos, when members of ACT UP/New York's Women's Caucus, most of them white, blasted a planned clinical trial of pregnant women with HIV as "bad science" and "unethical." (The study, ACTG 076, was designed to test the use of AZT in interrupting transmission of HIV from mother to fetus. The activists objected to, among others things, the apparent prioritizing of fetuses over adult women in clinical research.) In response, several African-American women who were involved in running the study denounced the activists, leading a number of black and Latino members of the CCG to cry that ACT UP was "racist."
On the local level, similar pressures fractured individual ACT UP chapters. Flush from its triumphs at the Sixth International Conference, where it had mobilized hundreds of people into the streets around the conference center for a weeklong series of demonstrations, ACT UP/San Francisco swelled with new members in the latter part of 1990 and then rapidly exploded. Ostensibly, the debate concerned whether the group should continue to operate according to the consensus process, allowing a single voice of dissent to paralyze decision making. At a deeper level, most commentators agreed, the split was between those (mostly gay white men who were HIV positive) who supported the basic goal of "drugs into bodies" and those (including many of the women and people of color in the group) who sought a more thoroughgoing engagement with the class-based inequities of the
U.S. health care system and with the racist, sexist, and homophobic dimensions of biomedicine and, indeed, of U.S. society as a whole. From the standpoint of the latter group, the privileged white men were insensitive to any issues but their own; from the vantage point of the former, the forces of political correctness were engaged in utopian phrase-mongering while they were busy saving lives. The former group seceded from ACT UP/San Francisco to constitute a new chapter, ACT UP/Golden Gate.
Similar splits soon occurred in ACT UP/Chicago and ACT UP/Portland. Meanwhile, women in the Women's Caucus of ACT UP/New York became increasingly disturbed by the incorporation of "the boys" into the ACTG system. Though the Women's Caucus members had succeeded in pressuring Fauci to hold the National Conference on Women and HIV Infection in December 1990, they had never enjoyed easy access to NIAID officials, and the conference itself proved to be a tense and acrimonious event. "So imagine our fury," wrote Risa Dennenberg, describing the occasion in Outweek , "when, like ships in the night, three of [us] collided in the lobby of the Sheraton at the close of the conference, with members of the Treatment and Data Committee of ACT UP/NY, who were, unbeknownst to us, heading to a social event with these same dreaded government bureaucrats."
Members of the Women's Action Committee proposed a six-month moratorium on face-to-face meetings with government officials—to the utter bewilderment and consternation of the Treatment & Data Committee. "As soon as we got the seat at the table, which we had fought for, and which had been a part of our rhetoric for years, there was a faction in ACT UP that didn't want us to claim it," Harrington recalled with disbelief, several years later. Soon afterward, the core of the Treatment & Data Committee split off to form a new, more exclusive organization, which they called the Treatment Action Group, or TAG. "In New York, we were running a participatory democracy with nine hundred people in the room," commented David Barr, recalling how painful it was to contemplate leaving ACT UP: "You know, you can only do it for so long. …"
Gender and racial divisions, as well as debates over internal participatory mechanisms, insider/outsider strategies, and overall priorities and goals, are the kinds of issues that can tear apart any social movement. What particularly complicated the internal battles of the AIDS movement was the additional overlay of the politics of expertise. It was not simply that some people were working on the inside while
others were outside—just as important, those who were on the inside were increasingly mastering specialized forms of knowledge with which their fellow activists on the outside did not come into contact. There resulted what Gilbert Elbaz, in an analysis of ACT UP/New York, has nicely described as a gap between the "lay expert" activists and the "lay lay" activists. Stratification by gender, race, class, and education helped to structure access to the "lay expert" identity. "[It's] interesting how similar they are to the people that they're fighting," reflected Michelle Roland, a San Francisco Bay Area treatment activist. "I mean, it's science. And who is raised in this culture to believe that they could be scientists? Smart white men. And who are the treatment activists? Smart white men. All with an education. … And then you have … the occasional woman who says, 'I can do it too!'"
The CCG should have been a place where possession of knowledge became equalized. In practice, people who not only came from very different backgrounds and had sharply differing priorities but also had widely varying degrees of exposure to biomedical science were thrown together and expected suddenly to perform. The CCG "was a great experiment," reflected David Barr, "but there were people at all different points within the learning curve." Barr explained: "You'd have somebody … who had AIDS, who knew a lot about AIDS, [but who] didn't know anything about AIDS research—you know, nothing. And never had seen a clinical trial, didn't live in a city where they did clinical trials, on the one end—and then Mark Harrington and Martin Delaney on the other." The solidification of knowledge-based hierarchies was furthered by the difficulties experienced by the first wave of autodidacts in developing a coherent educational strategy that would bring larger numbers of activists into the arena of knowledge-assessment. One activist who remained with ACT UP after others left to form TAG painted a picture of a Treatment & Data meeting circa 1990: the core group of activists "feverishly [tossing] acronyms at each other," complaining that they were overworked and in need of help; the "mostly silent majority of 20 or 30," sitting in the back of the room, "waiting for a revelation."
Another tendency accentuated by the organizational splits and the professionalization of treatment activism was the increasing emphasis on Western medicine and reliance on the pharmaceutical industry, to the relative exclusion of alternative treatments and non-Western conceptions of healing. The main ACT UP chapters had always had committees on alternative treatments, while Project Inform had promoted
Compound Q, derived from the root of a Chinese cucumber, and AIDS Treatment News had regularly and consistently promoted a range of nonpharmaceutical products. With the splits in the prominent ACT UP chapters, advocates of alternative and mainstream treatments often ended up in different camps. ACT UP/Golden Gate focused on the ACTG and the pharmaceutical companies, while interest in natural and alternative treatments was pursued mainly by ACT UP/San Francisco and other groups. Similarly, in New York, TAG focused on mainstream science, while alternative treatment activists found ACT UP to be a more congenial environment.
At a national level, too, there was often little room for discussing alternative treatments. Jason Heyman, a San Francisco activist who tried to address the issue at a CCG meeting, recalls being "told to leave the room" by a prominent East Coast treatment activist. In this case as in others, the dominant treatment activists had acquired the power to perform the "boundary work" that distinguished legitimate treatment issues from illegitimate ones. "They were a wall … between us and the establishment. They were keeping us out." Heyman had no objection, in principle, to the fact that activists had moved to the inside. But once they had done so, "they changed … and they looked at us differently. They were offended by us." And the irony was that "we were doing what they had done. We were just being rude and … coming in there and saying, 'Look, this is what we want'— which is just what they had done."
By 1992, the links connecting treatment activist experts with their grassroots base had become increasingly attenuated. Knowledge still flowed "downward" in the form of articles by the treatment activists that appeared in the gay press and the treatment newsletters. But there was less accountability to the broader movement. Perhaps predictably, perhaps inevitably, pressures to democratize science conflicted with pressures to establish new hierarchies of expertise. The tugs toward these different poles coincided with yet another tension, that which existed between "prefigurative" and "accommodationist" politics— between the appeal of a radical critique of medicine and the felt need to save lives now. By the early 1990s, it seemed that the voices of pragmatism had become dominant. Core groups of activists had established themselves as important contributors to the development of knowledge about AIDS treatments—but at the price of increasing distance from what was, in any case, a rapidly splintering movement.