An ACT Up veteran remembers the doctor’s AIDS legacy. – Salt Lake Tribune
The first time I met Dr. Anthony Fauci was at the International AIDS Conference in Montreal during the summer of 1989. ACT UP, the AIDS activist group I was a part of, had scared the bejesus out of conference organizers by seizing the stage during the opening session, then made things worse by disrupting various scientific presentations. Many, if not most, AIDS researchers wanted us hauled away and never heard from again. Little did they know that Dr. Fauci, who was leading the response at the National Institutes of Health, had been meeting with members of ACT UP since shortly after our founding two years earlier.
The regular meetings he had with an ACT UP member, Bill Bahlman, continued even after Larry Kramer, one of the group’s founders, wrote an open letter to Dr. Fauci in The Village Voice calling him a murderer and comparing him to the Holocaust organizer Adolf Eichmann. But there Dr. Fauci was, meeting with me and my comrades, branded radical homosexuals, to discuss our policy proposal for upending longstanding Food and Drug Administration strictures against public access to drugs before they are approved.
Mr. Kramer had labeled him our enemy, but I couldn’t shake the feeling that as the head of our government’s AIDS research efforts, Dr. Fauci had my life in his hands. Only four years earlier, at the age of 24, I was diagnosed with AIDS-related complex, considered a certain death sentence at the time.
Days after the conference, I found myself in Dr. Fauci’s office, along with the ACT UP members Mark Harrington and Jim Eigo, hammering out the final details of our parallel track program, which would allow thousands of people to obtain experimental drugs outside of traditional clinical trials. Within days, a New York Times front page headline about Dr. Fauci read, “AIDS Researcher Seeks Wide Access to Drugs in Tests.” The F.D.A. quickly fell in line. ACT UP had scored its first major victory, with Dr. Fauci’s help.
But then we turned our focus to the myriad problems with Dr. Fauci’s AIDS clinical research program at the N.I.H., biting the hand that had just fed us. Our meetings were upgraded to long dinners at the home of Jim Hill, the deputy director of the National Institute of Allergy and Infectious Diseases. (Mr. Hill, who was not openly gay, later tested positive for H.I.V.) Over multiple bottles of wine, Dr. Fauci tried to placate us with what I called “the full Fauch,” an optimistic friendliness with a Brooklyn-smarts spin and a love of lively debates. Two opposing truths confronted us: We couldn’t help but love the guy, but his research program sucked. “Tony,” I said, “you’re a great scientist but a lousy administrator.”
Within months, hundreds of ACT UPers were surrounding his building at the N.I.H., and I was the first one arrested, after climbing onto its portico. Cops wrestled me down, bound my hands behind me with a zip tie, then hauled me through the building to a police van. The burly cop pulling my shoulder was dumbfounded when a familiar short man in a white lab coat walking toward us down the hallway yelled, “Peter, are you all right?” Laughing, I replied, “I’m fine. Just doing my job. How about you, Tony?”
Dr. Fauci soon caved on one of our primary demands: adding people with H.I.V. on all the committees overseeing his AIDS research programs. Those patient advocates slowly but surely got results, vastly improving a research network that was more recently used to enroll thousands of people in the initial Covid-19 vaccine trials. It was the birth of a patient advocacy model that all disease groups use today, fully embraced by the research establishment. And it’s a tradition that I hope will continue after Dr. Fauci’s retirement on Dec. 31.
Over the years, the dinners to hash out unfinished AIDS work continued. After Mr. Hill tragically died in 1997, Dr. Fauci and his wife, Christine, started hosting the activist dinners at their house. Dr. Fauci shocked all of us, quietly working with President George W. Bush to start the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR), the most effective international public health program in our nation’s history, saving the lives of 20 million people thus far.
Dr. Fauci walked through the fire with us, and his friendships with AIDS activists deepened with time, bound by a shared trauma. In those early years, while some in our community were accusing him of not caring enough about AIDS, he didn’t tell us about the hundreds of gay men he had tried to save under his care at the N.I.H. hospital. Until this month, he still did rounds there, a clinician above all else.
When Covid hit and the rest of the world got to know Dr. Fauci, he leaned on us for guidance. David Barr, another ACT UP veteran, set up and hosted weekly calls with him and health officials from various frontline cities, allowing Dr. Fauci to counter the rosy spin from other members of the White House task force with a well-informed “That’s not what I’m hearing.” I’ve always been a politician among the activists, and it’s been the honor of my life that he leaned on me hard during his tumultuous year navigating “team normal” and “team crazy” in President Donald Trump’s orbit.
Like all of us, Dr. Fauci has his flaws, but I’ve never met a man more willing to let a friend rip into him. Our conversations are filled with F-bombs. His willingness to give absolutely everyone the benefit of some shared humanity — “I just met Jared, and he seems like a good guy” — is almost freakish but has come in handy over his stretch of working for seven presidents.
Because he crossed Mr. Trump, Dr. Fauci was turned into a villain for the MAGA crowd, providing fodder for those who thrive on conspiracies and hate. There has rarely been a larger gap between a mob’s viciousness and its target’s decency.
Beyond today’s frightening anti-science minority, there’s a majority that spans the world. Among them are H.I.V.-positive gay men like me who survived the earliest plague years — now, amazingly, aging into our 60s and 70s. We belong to a much wider community of people living with H.I.V. in America today, most of whom are people of color. And beyond our borders, we are bound to millions of men, women and children in sub-Saharan Africa whose lives have been saved by science and advocates for public health.
Our majority includes millions of Americans who listened to Dr. Fauci’s advice during that first scary year of Covid and kept listening as we got ourselves vaccinated and boosted, and we survived this plague. We draw hope from the progress of science. We are blessed with heroes willing to stand up for truth, unbowed by withering assaults.
On behalf of all of us, thank you, Tony Fauci.
Peter Staley is the board chair of PrEP4All, a leading H.I.V.-prevention advocacy group. His memoir, “Never Silent: ACT UP and My Life in Activism,” was published last year. This article originally appeared in The New York Times.