The Kennedy assassination sent dark suspicions swirling through the national psyche. Distrust of experts crescendoed again in the nineteen-eighties, with the appearance of a mysterious new disease. In 1981, as otherwise healthy gay men started dying of unexpected cancers and infections, a government immunologist named Anthony Fauci pushed aside his other research to focus on the puzzling malady. Fauci sent off his first article on the subject late that year, when there were only two hundred and ninety recognized cases. Still, he warned that the syndrome, soon to be called AIDS, was “of essentially epidemic proportions for a particular segment of our society.”
Fauci’s early research positioned him as the government’s central figure in crafting AIDS policy, with considerable power to decide which treatments would be tested. This made him an intense focus of activists, who distrusted his judgments. In 1990, the AIDS Coalition to Unleash Power, or ACT UP, stormed the National Institutes of Health campus where Fauci worked. They carried caskets with the words “Fuck you, Fauci” and burned him in effigy.
David France’s “How to Survive a Plague” (2016) describes this clash between insiders and outsiders. ACT UP’s slogan was “Drugs Into Bodies,” but prominent members like Larry Kramer were skeptical of AZT, the drug Fauci was focussing on, and pushed for alternatives. “In the absence of adequate health care, we have learned to become our own clinicians, researchers, lobbyists, drug smugglers, pharmacists,” the activist Derek Hodel explained. A drug called Compound Q, derived from a cucumber-like plant, seemed promising; Kramer declared it a cure. Patients sourced it from Asia and received infusions at “guerrilla cliniQs.” When Fauci declined to test it, the advocate Marty Delaney recruited physicians, an ethics panel, and a lawyer to run secret drug trials.
AZT turned out to be crucial to the first antiretroviral cocktails, whereas Compound Q was abandoned because of its dangerous side effects. Still, Fauci proved willing, with time, to accept off-road researchers as collaborators, not cranks. (It surely helped that the citizen scientists tended to be well-educated white men. “Would the government have listened to dykes, street queens, and women of color?” the movement veteran Sarah Schulman asks in her 2021 history, “Let the Record Show.”) Before long, Fauci was describing ACT UP members as “intelligent, gifted, articulate people coming up with good, creative ideas.”
It was a triumph of trust. ACT UP pushed the reluctant F.D.A. to approve aerosolized pentamidine, a vital treatment for a deadly opportunistic lung infection, and to allow fast-track access to experimental medicines for those not in formal drug trials. These hard-won victories saved lives. “Scientists themselves do not have a lock on correctness,” Fauci conceded. “Activists bring a special insight.”