Fauci at the center of the AIDS story
by Bob Roehr
One man has been at the center of AIDS treatment, research, and policy since the beginning – Dr. Anthony Fauci. Recently he has been giving a series of speeches, a personal reflection on his 30-year journey through that global pandemic.
Fauci was a young researcher at the National Institutes of Health when he read that first report of a cluster of five gay men in Los Angeles with pneumocystis carinii pneumonia that appeared in the June 5, 1981 issue of the then-obscure journal Morbidity and Mortality Weekly Report .
How odd he thought, because it is a rare disease "that you never ever see in someone with a normal immune system." The mark of his native Brooklyn is heavy in Fauci's voice, even though he has not lived there for decades.
A month later another issue of MMWR landed on his desk, this one with a report of 26 young gay men in Los Angeles, San Francisco, and New York City, otherwise healthy, who presented with pneumocystis carinii and/or the unusual cancer Kaposi's sarcoma, also seen in immunocompromised persons.
"It was the first time in my medical career that I ever got goose pimples, because I knew this had to be a new disease," said Fauci. He quickly decided to make the mysterious new disease the focus of his research, despite contrary advice from his mentor and colleagues.
These reports marked the first official notice of what would become known as the global HIV pandemic. The disease had been around much longer; people simply had not recognized it. But that would change as the virus grew with exponential ferocity to ravage and kill millions of human beings.
Fauci's decision to focus on the unknown pathogen proved to be not only a good career move, but also an important one for the gay community and people living with HIV because of the role he would play in shaping government policies over the ensuing decades.
Fauci was named director of the NIH's National Institute of Allergy and Infectious Diseases in 1984. It would become the center of research and research funding for AIDS. At 43 he was the youngest institute director ever at NIH. When some on the institute staff opposed creation of the Division of AIDS, he said, "I had to do something I don't like to do and that is get rid of them."
Five administrations have relied upon him for counsel.
It started with Ronald Reagan. While Fauci acknowledges the criticism of Reagan for not publicly addressing AIDS earlier than he did, he also defends the man.
"When we were asking for more money for HIV [Reagan] was actually more generous than people thought," Fauci said. Reagan would also "encourage and allow people like me and Jim Curran from the CDC to go out there to the bathhouses, go to the crack houses and try and find out what was going on and develop a research program for it," he added, referring to the Centers for Disease Control and Prevention.
The director praised George H.W. Bush for taking the time to learn about AIDS when he became a candidate for president.
"He came and spent about three to four hours at the NIH, which for those of you who know presidential visits, that's a lifetime for a president to spend. They usually come in and say hello and leave," Fauci said.
People living with HIV/AIDS, who knew there was little in the way of treatment in those early days, became furious at the slow pace of research and drug development and approval. People were dying. Groups like the AIDS Coalition to Unleash Power started staging direct actions. Institutes like the NIH were not immune from the protests.
AIDS activists "stormed the NIH" in the late 1980s bringing surly, chanting throngs and smoke bombs to the bucolic research campus in Bethesda, Maryland. The police were about to arrest them when Fauci said no; he invited them to send five leaders up to his seventh floor office to talk.
"These guys came in with Mohawk haircuts, multiple earrings, black leather jackets, making a lot of noise; scientists ran for the hills. They could be preaching the gospel and scientists wouldn't listen to them," he said.
"They were challenging our paradigms of how we do clinical research and how we regulated drugs" for people who had no viable therapies.
"By the time the FDA approved it, everybody who needed it would be dead," Fauci said, referring to the Food and Drug Administration. "That was something that we just didn't get here in this city of Washington."
"But what they said made really great sense. They wanted a parallel track" to make the drug available while a trial was under way. When Fauci stood up at a meeting in San Francisco and supported the idea, the FDA went wild and tried to have him fired.
"Fortunately I had a good friend; that was George H.W. Bush. When I explained [parallel track] to him, he thought it was a good idea."
Fauci recalled how playwright/activist Larry Kramer once wrote "An open letter to an incompetent idiot Anthony Fauci." But from that confrontational start, the relationship between the two evolved to one of dear friends.
Few recall that a young George W. Bush worked in his father's White House office, where Fauci came to know him and other junior staffers. Those relationships came to mature when he was asked to play a leading role in creation of the President's Emergency Plan for AIDS Relief, the international effort better know by its acronym PEPFAR.
The program launched in 2003 and Fauci proudly ticked off the accomplishments: "close to 4 million lives have been saved by providing treatment for individuals; 450,000 infants were saved from being infected by treating them and their infected mothers; and about 11 million people came under care."
"The sobering news is that only 40 percent of the people who need therapy are actually getting therapy. For every person you put on therapy, two to three people get newly infected," Fauci said.
The NIH investment in HIV research has been staggering. When Fauci became director of NIAID in 1984 AIDS funding was just $20 million. Today it is $1.3 billion, about 11 percent of the annual NIH budget. The cumulative total has reached $45 billion, but he says it is money well spent.
"If you take a problem seriously, and make well thought out investments in biomedical research, you will get benefits from that, for sure," he said.
Fauci said the changes in HIV/AIDS over the last 30 years have been dramatic. For the first eight years of his HIV practice, "every one of my patients died;" the average survival was 27 weeks. The corner was turned in 1996 with introduction of protease inhibitor-based combination therapy and other subsequent drugs. Now when a person initially starts treatment, Fauci said, "according to mathematical models, they will live an additional 52 years.