Thursday was World AIDS Day. It's dedicated to raising awareness of the HIV/AIDS pandemic and mourning those who have died of the virus and disease. Before he was the director of the National Institute of Allergy and Infectious Diseases, Dr. Anthony Fauci was the National Institute of Health's first director of its office of AIDS research back in 1988. Fauci joined WNYC’s Sean Carlson to talk about the long and complicated battle against the HIV/AIDS pandemic and what it was like in New York City when the pandemic was at its height in the late 1980s and early 1990s.
The transcript, published below, has been lightly edited for clarity.
Sean Carlson: Doctor Fauci, thanks so much for joining us.
Dr. Anthony Fauci: My pleasure, good to be with you.
There are about two generations now of people who weren't around or were too young in the late ‘80s, early ‘90s, at the height of the HIV/AIDS pandemic, to really know what was going on. Can you talk about what that moment in time was like for New York City in particular?
It was really a very dark period, I must say. I began in Washington in the fall of 1980, and the early winter of 81/82, taking care of a large number of persons with this new disease, that at that time didn't even have a name, we were calling it gay related immunodeficiency, and certainly didn't have an ideology because HIV was not identified until 1983/84. And those very early years were really terrible because so many, many young, mostly men who had sex with men, were being admitted to hospitals throughout the country with New York City being one of the epicenters.
Staying at the local level here. What was the response like from officials here in New York City? We should note that you're a native of New York as well.
In general, authorities — with few exceptions — many authorities were slow to recognize the threat of this and were slow to put substantial resources and attention to it. And it took, you know, a lot of effort from the activists and some of us in the scientific community to get proper attention paid and have the country as a whole take this very seriously.
In those early days, you clashed with AIDS activist groups, most notably Larry Kramer, the founder of the Grassroots Activist Group, AIDS Coalition to Unleashed Power, also known as ACT-UP. What do you think that experience taught you about how public officials should work with the communities most affected by certain diseases?
Well, I think it was one of the most important things that I've done in my professional career was to get past the theatrics and the confrontation and the iconoclastic activities of the activists and listen to what they had to say because what they had to say made perfect sense, that the government, the regulatory issues, the scientific issues needed to have input from the community. From the gay activists, from ACT-UP, from other organizations who are on the ground in the trenches. And what we learned from that and what I learned, and I said it's one of the, I think the most important things that I've done was to listen to them and then incorporate them into the dialogue of the discussion of how to design clinical trials, how to make more flexible the regulatory elements that were inadvertently preventing the availability of potentially life saving interventions for persons with HIV. Ultimately, that became one of the great success stories of HIV/AIDS, was the complementary role of the activist community with the US government, particularly the scientific and regulatory community, and that serves as a model for many other diseases. It was quite a success.
Speaking of other diseases and maybe what you took from in the early days of the AIDS pandemic, one of the saddest things to me is the misinformation about it. How HIV spread, who could get it. Could you talk about those misconceptions or, or maybe how that public messaging experience prepared you for what happened with COVID?
Well, there was an element, but it was relatively restricted to deliberate disinformation about HIV. Mostly what was referred to as aids denialist, which were a group of scientists who should have known much better, who are, you know, propagating the false narrative that HIV didn't cause AIDS, and that was the thing that was causing the problem was the drugs that we were giving to people to try and suppress the virus, saying the virus didn't exist or it didn't cause AIDS. That was very unfortunate because it really prevented some people from taking the necessary action to get tested, to change their behavior, to get involved in putting themselves on drugs as effective drugs became available. But again, that was a rather restricted group of disinformation. Today with COVID, the amount of disinformation and outright untruths, conspiracy theory fabrications is much, much more profound with COVID today than it was in the days of HIV and AIDS in the eighties and nineties.
HIV rates are lower here than overseas, but it still is an ever present problem in the city. Data that we got from the city shows that 1,594 people were newly diagnosed with HIV in New York City in 2021. What would it take, Dr. Fauci, in terms of getting treatments to people to actually eliminate HIV entirely here?
Well, we've got to get outreach to those who are still at risk, usually marginalized populations, and get them to get tested. If they are at risk, they're tested and they're negative, they should be put on pre-exposure prophylaxis. We have excellent drugs for pre-exposure prophylaxis, either a pill a day, or an injection every couple of months. That has a very, very high efficacy, over 95% in preventing you from acquiring HIV. If you get tested and you're positive, there's life saving drugs that if you get put on it, you could essentially have a normal lifespan. So it's mostly implementation of the very effective interventions that we already have.
Can you talk about what your work on AIDS Relief globally has taught you about the future of our fight against this thing?
Well, what it's taught us is that we have the capabilities of ending HIV in the United States. You know, there's an effort, a 10-year effort started in 2020. That we can decrease the number of infections by 75% after five years and by 90% after 10 years. I think that's doable. It's doable here in the United States, but also with programs like the PEPFAR program and the Global Fund. It's also doable throughout the world, particularly the developing nations, there are now several Southern African countries who've reached the point of dramatically diminishing HIV in their respective countries.
Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases, who is stepping down this year as director after 38 years. Dr. Fauci, thanks so much for joining us and thanks for your service.
My pleasure. It's good to be with you, thank you for having me.