But all did not go smoothly. Even with Burroughs Wellcome holding the reins, progress at NIAID was glacial. AZT’s horrendous toxicity hobbled researchers struggling to design study protocols that would make it appear either safe or effective. With AZT devouring his bandwidth, Dr. Fauci failed to populate clinical trials for any competing drug. After three years and hundreds of millions spent, NIAID had not produced a single new approved treatment.
Meanwhile, bustling networks of community-based AIDS doctors mushrooming in cities like San Francisco, Los Angeles, New York, and Dallas had become specialists in treating the symptoms of AIDS. As Dr. Fauci swung for the fences—the miraculous new antiviral “cure” for AIDS—these community doctors were achieving promising results with off-label therapeutic drugs that seemed effective against the constellation of symptoms that actually killed and tormented people with AIDS. These included off-the-shelf remedies like ribavirin, alpha interferon, DHPG, Peptide D, and Foscarnet for retinal herpes; and Bactrim, Septra, and aerosol pentamidine for AIDS-related pneumonias. Despite years of pleading by the HIV community, Dr. Fauci refused to test any of those repurposed drugs, which had older or expired patents and no Pharma patrons.11 One of the most promising of these “street drugs” was AL 721, an antiviral that was far less toxic than AZT. Two of Dr. Fauci’s top scientists, Robert Gallo and Jeffrey Laurence from NCI, had found AL 721 effective in reducing HIV viral loads—but, under pressure from his phalanx of Burroughs Wellcome PIs, Dr. Fauci refused to follow up.12 Big Pharma and its PIs were loath to test any drug with patents they didn’t control. None of the big pharmaceutical companies were interested in cultivating rivals for their high-margin blockbusters like AZT.
Dr. Fauci’s failure to move these remedies through the NIAID system spawned a burgeoning sub-rosa market where people with AIDS and community doctors purchased remedies from underground “buyers’ clubs.”13
One of NCI’s top virologists, Dr. Frank Ruscetti, who worked directly under Robert Gallo, recalls of that era, “We could have saved millions of lives with repurposed and therapeutic drugs. But there’s no profit in it. It’s all got to be about newly patented antivirals and their mischievous vaccines.”14
The PIs made sure that Pharma’s AZT was the only arrow in NIAID’s clinical trial quiver. Because of Dr. Fauci’s inexperience and perhaps deliberate sandbagging, he and his PIs had only managed to fill 5–10 percent of the slots in his clinical trials for other promising drugs that would compete with AZT. According to Nussbaum, “In time, the clinical trials network Fauci set up would come to be known as the ‘HUD of the nineties.’ Money was spent, but trials went under-enrolled, drug treatments never seemed to emerge, and people with AIDS continued to get sick and die.”15
At the mercy of Burroughs Wellcome, Dr. Fauci cut the company PIs every courtesy to accelerate AZT’s approval. FDA and NIH waived long-term primate studies that would be a high-risk gambit on a compound of such well-known toxicity. (Dr. Fauci would take the same shortcut thirty-six years later to accelerate approvals of his pet drug, remdesivir, and Moderna’s coronavirus vaccine.) Dr. Fauci endorsed Burroughs Wellcome’s scheme to price AZT at a sumptuous $10,000 per patient per year by agreeing to pay the top-shelf sticker price for the pills used in NIAID’s clinical trials.16
According to Nussbaum, “Tony Fauci’s managerial incompetence,” which put him utterly at the mercy of Burroughs Wellcome and its AZT and AZT-only agenda, “had exacted a staggering cost. By 1987, more than a million Americans were infected by the AIDS virus. Not a single drug treatment had come out of the government’s enormous biomedical research system.”17
Nussbaum chronicles the escalating frustration among AIDS activists who were winning vast Congressional appropriations for NIAID, with nothing to show. By 1988, Nussbaum recounts, “several hundred million tax dollars had somehow disappeared into the nation’s biomedical establishment and not one new drug had been produced.” Tony Fauci’s incompetence was frustrating the national response to the pandemic. “Where was Tony Fauci at this time?” Nussbaum asks. “Nowhere. . . . He wasn’t, after all, a ‘details’ man. He was busy being a ‘hit-the-front-pages-every-day’ kind of guy.”18
AIDS activists and public health officials were wondering, “Where did all the grant money go? Did NIAID keep the money? Who benefited? Certainly not the tens of thousands of people with AIDS who grew angrier and angrier with each wasted, passing day.”19 Activists complained that Dr. Fauci was not being forthcoming about the status and enrollment of his clinical trials. He was stonewalling inquiries and had veiled the entire process in secrecy.
Despite pleas from patients, their doctors, and advocates, despite the vast financial windfalls flowing to his agency from the HIV community’s adept lobbying, Dr. Fauci refused to meet with the AIDS community leadership during his first three years as America’s “AIDS Czar.” That reticence further soured Dr. Fauci’s already difficult relationships with the community he was responsible to serve.
It was a hardwired reflex at NIAID to exaggerate public fears of pandemics, and Dr. Fauci’s first instinct as national AIDS czar had been to stoke contagion terror. He made himself a villain among AIDS activists with a fear-mongering 1983 article in the Journal of the American Medical Association warning that AIDS could spread by casual contact.20 At the time, AIDS was almost exclusive to intravenous drug users and males who had sex with other males, but Dr. Fauci incorrectly warned of “the possibility that routine close contact, as within a family household, can spread the disease.” Given that “nonsexual, non-blood-borne transmission is possible,” Fauci wrote, “the scope of the syndrome may be enormous.” In his history of the AIDS crisis, And the Band Played On, author Randy Shilts reports that the world’s leading AIDS expert, Arye Rubinstein, was “astounded” at Fauci’s “stupidity” because his statement did not reflect the contemporary scientific knowledge.21 The best scientific evidence suggested the infectivity of HIV, even in intimate contact, to be so negligible as to be incapable of sustaining a general epidemic.
Nevertheless, Dr. Fauci’s reflexive response was to amplify the widespread panic of dreaded pestilence that would naturally magnify his power, elevate his profile, and expand his influence. Amplifying terror of infectious disease was already an ingrained knee-jerk institutional response at NIAID.