HIV/AIDS is on “the very, very short list of the most impactful pandemics in the history of our civilization,” Anthony Fauci told a AAAS audience over breakfast at the Forum on Science and Technology Policy in Washington, D.C.
He recalled as a young researcher at the National Institutes of Health reading the first report of pneumocystis carinii pneumonia observed in a cluster of five gay men in Los Angeles and thought: How odd, because it is a rare disease “that you never, ever see in someone with a normal immune system.”
A month later another issue of the journal Morbidity and Mortality Weekly Report 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, the patois of a Brooklyn native still ringing in his voice.
The 36th annual AAAS Forum on Science and Technology Policy convened 5-6 May in Washington, D.C., with some 475 U.S. and foreign leaders from government, education, and business attending to hear Fauci and other top policy experts talk on critical issues. The Forum, organized by the AAAS R&D Budget and Policy Program, this year had a strong focus on U.S. innovation and the importance of the federal investment in science and technology.
In his talk on 6 May, Fauci described how the startling awareness of the mysterious new disease propelled him to make it the focus of his research, despite contrary advice from his mentor and colleagues. Events proved him right: The number of reported cases grew exponentially, from a handful into the thousands, and in 1984, at the age of 43, he was named director of the NIH National Institute of Allergy and Infectious Diseases (NIAID). That made him the youngest institute director ever at NIH.
By 1986, the human immunodeficiency virus (HIV) had been identified and the disease given the name of acquired immune deficiency syndrome (AIDS). Fauci ran into resistance within NIAID when he sought to create the Division of AIDS to address the new disease. At which point, he said, “I had to do something I don’t like to do, and that is get rid of people.”
The death toll continued to mount and emerging AIDS activism thrust the disease into the public spotlight. The White House turned to Fauci for counsel. It started with Ronald Reagan and has continued through to Barack Obama.
Fauci acknowledged the criticism of Reagan for not publicly addressing AIDS earlier than he did, “but when we were asking for more money for HIV, he [Reagan] was actually more generous than people thought.” He 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.”
George H. W. Bush was praised for taking the time to learn about AIDS when he became a candidate for president. “He came and spent about three-four hours at the NIH, which for those of you who know presidential visits, that’s a lifetime… They usually come in and say hello and leave.”
The Early Impact of Activism
AIDS activists in the mid-1980s “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. That was something that we just didn’t get here in this city of Washington.”
The director recalled how playwright/activist Larry Kramer once wrote “An open letter to an incompetent idiot Anthony Fauci.” But he related how the pair went from arch-nemeses to close friends over the course of several years.
Activists “stormed the NIH” and plumes from smoke bombs coursed past his seventh-floor window. But rather than have them arrested, Fauci invited five leaders up to speak with him. “These guys came in with Mohawk haircuts, multiple earrings, black leather jackets, making a lot of noise,” he recalled. “Scientists ran for the hills. They could be preaching the gospel and scientists wouldn’t listen to them.
“But what they said made really great sense to me. They wanted a parallel track” to make the drugs more widely available while a trial was underway. When Fauci stood up at a meeting in San Francisco and supported the idea, the FDA was quite concerned and Fauci thought that he would be fired.
“Fortunately I had a good friend—that was George H. W. Bush. When I explained it [parallel track] to him, he thought it was a good idea.”
“I learned an important lesson: Be nice to everybody in Washington, even the low-level people, because one day they are going to be high-level people,” Fauci said.
A High-Impact Global Effort
Several relationships formed during the first Bush administration would became even more important during that of President George W. Bush, when Fauci played a leading role in creation of the President’s Emergency Plan for AIDS Relief, the international effort better know by its acronym PEPFAR.
It launched in 2003 and estimates are that “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,” he said.
“The sobering news is that only 40% of the people who need therapy are actually getting therapy. For every person you put on therapy, two-three people get newly infected.”
Fauci said a combination of preventative approaches is critical. That includes existing tools such as changes in behavior and use of condoms, as well as new approaches in development such as microbicides, pre-exposure prophylaxis, and someday, he hopes, a vaccine.
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 $3.1 billion, about 11% of the annual NIH budget. The cumulative total has reached $45 billion, but Fauci believes it is 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 treatment over the last 30 years have been dramatic. For the first eight years of his taking care of HIV-infected patients, “almost every one of my patients died,” he said. The average term of 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, “according to mathematical models, they will live an additional 52 years.”
See video of the address by Anthony Fauci, AIDS treatment pioneer and director of the National Institute of Allergy and Infectious Diseases.
See full coverage of the 36th annual AAAS Forum on Science and Technology Policy.