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."