Signs of Rapprochement
By early 1989, it began to appear that AIDS treatment activists had won a partial convert to the cause: Anthony Fauci himself, the head of NIAID and the government's AIDS research program. To a greater extent than his counterparts at the FDA, Fauci had cultivated good relations with treatment activists, opening up channels of communication with people like Martin Delaney of Project Inform and Mark Harrington and Jim Eigo of ACT UP/New York's Treatment & Data Committee. "In the beginning, those people had a blanket disgust with us," Fauci told the Washington Post in 1989: "And it was mutual. Scientists said all trials should be restricted, rigid and slow. The gay groups said we were killing people with red tape. When the smoke cleared we realized that much of their criticism was absolutely valid." When activists complained about the FDA's slowness in approving a drug called ganciclovir that appeared to prevent blindness in people with AIDS suffering from a viral infection of the retina called CMV retinitis, Fauci went to bat for them and helped to put pressure on the FDA. In an article in the journal Academic Medicine published early in 1989, Fauci defended established scientific methods but also acknowledged some of the points that activists had been making. "Clearly, there is a need for greater access to clinical trials of
investigational drugs by a broader spectrum of the infected population," wrote Fauci.
The turning point came at the Fifth International Conference on AIDS, held in Montreal in June. Activists took center stage at the conference—disrupting the opening ceremony, staging protests against pharmaceutical companies that had been identified as profit-hungry, and presenting formal poster sessions with titles like "AIDS Drugs and the Politics of Biomedicine" and "Drug Regulation Gone Wrong: The Saga of Ganciclovir." Behind the scenes, Larry Kramer of ACT UP/New York met with Fauci—a man he had called "an incompetent idiot" and worse in print—and solidified Fauci's support for "parallel track," a new concept that had been developed by Jim Eigo and other New York activists.
The parallel track program was, in effect, the solution to the sort of dilemma that Martin Delaney had described at the meeting of the Infectious Diseases Society a few months before (a meeting that Fauci had attended): when researchers coerced people into trials by giving them no other means of access to experimental treatments, participants likely wouldn't comply with the study protocols, and as a result the data would be unreliable. To avoid such difficulties, as Fauci told the press in June, a parallel track program "would provide promising drugs to some people with AIDS at the same time as the drugs are undergoing rigorous [Phase II] clinical trials." Patients would be eligible to receive free drugs in the parallel track program "if they were unwilling or unable to participate in the normal clinical trial"—for example, because they failed to qualify for the study or because they lived too far from the study centers.
In essence, Fauci adopted the activist line on this issue, as his comments quoted in the front-page New York Times article made evident: "'Previously, there was a great concern that if we did this, then no one would be in the clinical trial,' Dr. Fauci said. But he added that he has changed his mind and now thinks it is unnecessary 'to hold a gun to their heads' to induce people to join clinical trials." Fauci explained that NIAID could pursue parallel track under its own authority without the need for any new, enabling legislation; indeed, he was prepared to start the program soon with the drug ddI, pending support from the manufacturer, Bristol-Myers. Unlike the FDA's more limited compassionate use policies, parallel track promised to provide large numbers of AIDS patients with easy access to drugs that had passed only Phase I trials. "I came out and stuck myself out on a limb … and
everybody here in Washington fell off their seats and said 'What is he doing?'" Fauci later recalled. But "I thought it was the right thing to do, and I figured the only way we could get it done was to just say that I was in favor of it and apologize later. And as it turned out, I didn't have to apologize, because everybody then jumped on the bandwagon…."
Optimism among activists about their successes in changing federal policies was matched by more upbeat attitudes on the part of researchers and clinicians about therapeutic prospects. With AZT, with prophylaxis against PCP, and with better treatment strategies against other opportunistic infections, AIDS patients were living longer. Other antivirals like ddI and ddC were on the horizon. By combining or alternating the use of these and other drugs (as was often done in cancer treatments and for some bacterial infections), doctors might be able to keep the virus in check while preventing the onset of drug resistance. In Montreal, a new conventional wisdom emerged: HIV infection might soon become a "chronic manageable illness," not fully curable but something that a person might live with.