“I mean, many of us spent the whole ‘80’s in a state of terror, knowing that we’d been exposed, not knowing our status, not knowing whether we were going to live or die. And I think the vast majority of the population now has exactly the same feeling, where they don’t know if they’ve been exposed. They don’t know if they’re going to get sick. Every single person is a risk.” – Mark Harrington, Executive Director and Co-founder of the Treatment Action Group
In today’s episode, co-host Dr. Celine Gounder talks to Peter Staley and Mark Harrington, members of Act Up, co-founders of the Treatment Action Group, and dedicated HIV/AIDS activists who know firsthand what it is like to live through a large-scale pandemic. They discuss their experiences as activists during a pandemic, including challenges, such as a lack of needed support from government and issues surrounding research and treatments, as well as how they are continuing their activism today through the founding of the COVID Working Group of New York. They also discuss similarities between the HIV/AIDs pandemic and COVID-19 today, including the magnification of health disparities that these infectious diseases bring about, as well as the man who has been there through it all, Dr. Tony Fauci.
Celine Gounder: I’m Dr. Celine Gounder, and this is “Epidemic.”
Celine Gounder: Today is Friday, April 10th
Celine Gounder: On April 7th, Tony Fauci, the director of the National Institute of Allergy and Infectious Diseases spoke at the white house’s daily coronavirus press briefing. He and Dr. Deborah Birx said that COVID- 19 is killing a disproportionate number of African Americans. The reason disparities in our health system,
[Fauci] “sometimes when you’re in the middle of a crisis like we are now with the Coronavirus, it really does have ultimately shine a very bright light on some of the real weaknesses and foibles in our society. And as some of you know, I’ve, the greater proportion of my professional career has been defined by HIV/AIDS. And if you go back then, uh, during that period of time when there was extraordinary stigma, particularly against the gay community, and it was only when the world realized how the gay community responded to this outbreak with incredible courage and dignity, and, and strength and activism that I think that really changed some of the stigma against the gay community. Uh, very much so. I see a similarity here because health disparities have always existed for the African American community. But here again, with the crisis, how it’s shining a bright light. On how unacceptable that is”
Celine Gounder: On today’s show, we’re going to look at the legacy of the AIDS crisis and how the U.S. response to that pandemic 30 years ago is shaping how we’re handling COVID- 19 today.
Celine Gounder: Our guests today are Mark Harrington and Peter Staley.
Celine Gounder: Mark and Peter were both members of Act Up and helped found the Treatment Action Group. They both worked closely with Dr Fauci in the 1980s and 1990s. We’ll hear about their experience as activists with the group Act Up, how their advocacy around AIDS treatments changed how the NIH and FDA do clinical trials, and even what a dinner party with Tony Fauci is like.
Celine Gounder: For the people who lived through the AIDS pandemic, there’s something disturbingly familiar about COVID-19.
Peter Staley: The very beginning of this COVID outbreak was triggering for almost all the survivors of what are called ‘the plague years’ for AIDS in the eighties and nineties.
Celine Gounder: This is Peter Staley. When he says the plague years, he’s talking about a time when almost nothing was known about HIV. People were dying from a strange disease no one had ever seen before. They didn’t know that the disease attacking people’s immune systems was caused by a virus.
Mark Harrington: In those days, gay men all over the country, who were worried about AIDS, would wait anxiously for an article in, uh, Science Times, in The New York Times, which came out on Tuesdays, in hopes that there would be some new articles. There was not a flood of information.
Celine Gounder: This is Mark Harrington.
Mark Harrington: We have an incompetent and malevolent president just as, uh, just as we did in the 80s, President Reagan, who really didn’t do anything about AIDS for the first six or seven years.
Celine Gounder: Gay men, people of color and injection drug users were all dying at alarming rates. By 1987, Peter and Mark and a lot of other people were really angry. Over 13,000 people died of AIDS in the United States that year alone, and that’s when Act Up started.
Peter Staley: The country had never seen anything like us. They had never seen hundreds of gays and lesbians getting angry about anything. We were this community that most people did not want to think about or realize was out there in such numbers. Here we were angry, determined, and painted by the press in a very sympathetic way, ‘cause we were dying.
Celine Gounder: Dr. Tony Fauci is a household name today, but back in the 1980s, most Americans had never heard of him, much less the place where he worked. In 1984, he had just been named Director of the National Institute of Allergy and Infectious Diseases at the NIH. And that’s where Peter and Mark met Fauci.
Peter Staley: That Brooklyn accent, that guy you, you feel like you want to have a beer with. Who you can tell right away is super knowledgeable and super smart, but explains things to you in a way that you, and you start trusting him within a minute. That’s the same guy I met in 1988.
Celine Gounder: But that fondness wasn’t always there. Peter and Mark and others at Act Up were not happy with NIH. Restrictive clinical trials, poor communication with the communities affected by AIDS, and a general lack of urgency.
Mark Harrington: We felt that the whole research effort needed to become much more attuned to and reflect the real world populations that were affected by HIV. And we took our concerns to Dr. Fauci over a period of years, from ’89 to really the present, where we would say, look, we need you to use your authority over these scientists to make them study things that are killing people.
Celine Gounder: Act Up wanted to be part of the process. They wanted patient advocates to sit on all the committees, and they wanted those advocates to have a vote.
Celine Gounder: Why is it important that affected communities have a say in how the science is done?
Peter Staley: The answer is because we bring a unique perspective to the table that is not always heard.
Celine Gounder: You need someone in that community who can work as an intermediary between the researchers and the patients. Activists showing up at the NIH and making demands was not business as usual. In the 1980s, physicians and researchers were not working with activists, but Fauci felt differently.
Mark Harrington: What was really, I think, visionary about Tony’s leadership in those years was that, whereas a lot of the other scientists saw us as being a disruptive force of no nothings, Tony kind of recognized early on that we had a lot to contribute and that it would make, it would make their effort more effective and stronger and also faster.
Celine Gounder: So Fauci asked one of his deputies at NIH, a gay man named Dr. James Hill, to help bridge the gap.
Peter Staley: Tony wanted to upgrade his relationship with the New York activists from occasional one-hour meetings in his office, to three hour dinners with multiple bottles of wine. He brilliantly thought having Jim Hill host them at his lovely townhouse on Capitol Hill would put us at ease. It would kind of be like the Switzerland for all of us, you know, this neutral territory where we all felt comfortable.
Celine Gounder: Tony Fauci, it turns out, is a great cook. They all became friends, but Peter says there was a balancing act between their friendship and making sure they got what they needed from Fauci and the NIH.
Peter Staley: Our job was to put Tony between a rock and a hard place. We were the rock, and the hard place were these older and more esteemed immunologists and virologists who were not willing to let us in.
Celine Gounder: These researchers didn’t want to answer to activists. They had their own ideas about how the research should go, but Act Up was tired of waiting.
Peter Staley: I was tasked with giving him the bad news. I said, “Tony, we need to tell you that we’re planning a gigantic demonstration at the NIH over these issues that we’ve been talking with you about for months, and we’re, we’re just not getting the answers we should be getting.” And he was caught off guard. He tried to talk us out of it. He tried to ask for more time, and I said, “Well, it’s going to take us a couple of months to prepare this gigantic demonstration, so yeah, sure. We’ll cancel it if you can give us everything we want.”
Celine Gounder: The months went by, but their demands were never met. So on May 21st, 1990 thousands of Act Up members occupied the NIH campus.
Peter Staley: “We’re talking about the fact that they didn’t allow people of color in the trials. We’re talking about the fact that they don’t care about women, they don’t care about children. Their trials are inefficient, dysfunctional. And we’re here to let them know that we’re not going to tolerate it anymore.”
Celine Gounder: Peter was one of the first to get arrested.
Peter Staley: And this big burly cop had me with my hands tied behind my back with one of those zip line things. Um, and he was dragging me down the hall, building 31. And I see coming at me down the hall, there’s Tony Fauci, uh, with his white lab coat and, uh, walking towards me and he goes, “Peter?” He recognizes me and I go, “Tony!” He says, “Are you okay?” And I said, “Yeah, just doing my job.” Uh, I said, “How about you?” He said, “Yeah, we’re, we’re trying to keep things operating while you’ve got us surrounded.” Uh, I said, “Well, you know, we’ll talk later.” And, and he, we both kind of chuckled as I got walked past him and the cop was looking at us, like, who do I got on my arm here?
Celine Gounder: The protest was called “Storm the NIH.” It was one of the biggest demonstrations Act Up ever organized.
Peter Staley: I should cap this off by saying it was successful. Two months later, in June of 1990, at the International AIDS Conference, the executive committee had a meeting there with Tony, and they caved.
Celine Gounder: Act Up got what they wanted. Patient advocates with a voice on the trial committees, something that’s now standard on all NIH trials, and more HIV trials included people of color and women.
Peter Staley: We started dramatically improving clinical trial designs so that they enrolled quickly and got answers faster.
Celine Gounder: “Storm the NIH” made the research process more accountable to patients and streamlined the way drugs get approved in the United States, something that’s on a lot of people’s minds right now. How do you balance the needs of good science when people are desperate for treatment now?
Celine Gounder: You know, I’m thinking now, in terms of the context of COVID-19, a number of the folks in the administration now have been big proponents of right to try. You know, is there such a thing as giving access too quickly or approving too quickly?
Peter Staley: Yes, AIDS activists learned that the hard way. We found ourselves in 1992/93 with three or four AIDS drugs on the market, but the death rate was continuing to rise. We had added a few months to people’s lives here or there, but HIV was clobbering us still every year, it’s just getting worse.
Celine Gounder: So we’ve been hearing a lot, just as one example, about hydroxychloroquine and its role in treating COVID. Based on the experience you had with drug development and approval, what is your reaction to that?
Peter Staley: We are totally in agreement with Fauci on this that, you know, not so fast. We do have to prove this. Science is about doing the most good for the greatest number, and AIDS activism was able to speed that up, but you can’t throw away the foundation. That’s what AIDS activists learned the hard way.
Peter Staley: The very first thing we screamed about in 1987, we complained about placebos. We were wrong. We were wrong about that. Placebos are morally correct, and, in times like this, they’re absolutely necessary. You can’t just tell everybody to rush to their pharmacy and start taking something.
Celine Gounder: No matter how desperate they might be.
Peter Staley: Exactly. You can really cause mass harm.
Celine Gounder: Another thing in common with the AIDS pandemic is the challenge of getting people to care about something that they think will never affect them.
Mark Harrington: We’ve always tried to build on a base of social solidarity. One of our chants when we were in Act Up, and we would be sitting, blocking traffic somewhere and getting arrested, would be that we’re fighting for your lives, too.
Celine Gounder: Mark says, Act Up focused on that message of solidarity, that we’re all in this together, but there was another reason Mark thinks the tide changed in their favor.
Mark Harrington: The epidemic had gotten so big with 50,000 deaths per year that, probably, there was a tipping point where at some point, most Americans might have known somebody who died of AIDS, or might’ve known somebody who knew, knew whose family was affected by it, and I think it caused kind of a change in the way the American people reacted to the epidemic and also to the groups that were affected by it.
Celine Gounder: Do you think people really had to know someone who was infected for this to really get through? That’s sort of my concern with coronavirus, that it’s only once it hits a community that people know somebody or they themselves are affected, that they will take this seriously and, by then, it might be too late.
Mark Harrington: By then it is too late. I mean, many of us spent the whole eighties in a state of terror, knowing that we’d been exposed, not knowing our status, not knowing whether we were going to live or die. And I think the vast majority of the population now has exactly the same feeling where they don’t know if they’ve been exposed. They don’t know if they’re going to get sick. Every single person is at risk.
Celine Gounder: Mark remembers how the gay community and others struggling with AIDS were brushed aside as disposable. Today, some politicians are making similar comparisons with elderly Americans.
Mark Harrington: That’s very dangerous, when any society gets to that point, when really, what we should be doing is scaling up so that we don’t have those shortages. So we don’t have to make those horrible decisions at the side of the sick and the dying, is to make sure that we do have enough PPE and ventilators and ICU beds and staff so that we can take care of the surge when it happens. Rather than sit there and decide who should live and who should die.
Celine Gounder: But mobilizing people in the age of coronavirus is very different than during the AIDS pandemic.
Mark Harrington: What was so great about Act Up was that you could leave your house where you were feeling isolated and afraid and helpless, and go to a group like Act Up and start doing political action, start educating yourself, start educating your community and go demonstrate together somewhere. And now, you know, everyone’s locked in. So we can’t do that, right? We can, well, we can get together on conference calls or email listservs, but we can’t go demonstrate somewhere ‘cause it’s dangerous, and we can’t even go to a meeting to plan it. So we’re going to have to alter our kind of activism to be more digital and virtual.
Celine Gounder: And so that’s exactly what Mark and Peter and others are doing. At the beginning of March, they, and a group of other scientists, epidemiologists, and activists founded the COVID Working Group of New York.
Mark Harrington: A lot of us are just really staggered by disbelief about the incompetence that this administration has, has shown in the slow rollout of the US-made tests, the whole wasted month of February, where we could have rolled out that test quickly and got ahead of the virus.
Mark Harrington: You know, when other countries had been testing, like, thousands and thousands of people, we were testing in the tens here in New York City, until late February, when we finally were just outraged by that and wrote a letter to the feds and asked them to let New York City do it’s own tests. By late February, the feds allowed in New York city, in New York State to start doing their own PCR, and we started testing a lot higher volumes and that, unfortunately, was a little late because we already had a lot of undiagnosed infection here in the city. And, um, we’re now seeing the explosive consequences of that month- long delay.
Celine Gounder: They’re using the same skills they developed during the AIDS crisis to mobilize support for healthcare workers and patients struggling with COVID- 19.
Peter Staley: We are mostly running interference between frontline public health officials and politicians that are not acting quick enough. Trying to help the Department of Health officials in New York City, the Department of Health officials in New York State, and our public health officials on the White House Task Force, to help them build up a political army around them that makes sure that their voices are heard and that they ultimately win the arguments against sometimes hesitant political leadership. We’ve had multiple victories, but just like AIDS, we’re seeing the death count rise and rise. So it’s been frustrating.
Celine Gounder: Peter says the slow response to COVID- 19 by New York City Mayor Bill de Blasio, or President Trump, is nothing new.
Peter Staley: We’ve seen, again and again, political leaders fail at addressing new epidemics, mostly because of, uh, they don’t understand them. There’s a level of denial, and the experts don’t have the power, the experts who fully recognize from day one the potential seriousness, cannot pull the political leaders to get society to do the right thing from day one.
Celine Gounder: Peter says, all you need to do is look back to how different governments responded to the AIDS crisis.
Peter Staley: “n the Reagan administration, he seeded the entire administration with appointments, uh, from the religious right, uh, et cetera, that were very cynical of expertise. And Reagan himself was cynical of it. But, on the other side of the ocean, we had an equally conservative government, Margaret Thatcher, running the UK, and she did not have this anti-expertise viewpoint. So she actually brought in the epidemiologists and the experts in fighting epidemics, and she actually listened to them.
Peter Staley: Their epidemic to this day is about a one-third the size of the US’s epidemic on a, on a per 100,000 population basis. Reagan and Thatcher, obviously, historians put them in kind of the same camp in many, many, many categories. But here was one where they were apples and oranges, and it all came down to, I think, a basic trust of expertise.
Celine Gounder: But Peter does have a lot of faith in Dr. Fauci and his team. Peter and Mark still get together with Fauci over dinner today.
Peter Staley: When we asked Tony Fauci over one of our dinners with him four years ago, when he had turned 75, if he was planning on retiring and he, he shot that down and said, you know, “No, I’m, my health is great. I think I’ve got another 10 years in me.” And he explained he was really doing it because he wanted to still be at his desk when we finally, you know, got vaccines for HIV/AIDS or, or a functional cure that he was really sticking around, to finish the job on AIDS, which is the whole reason we’re still around doing this activism. That that’s why he was here at this moment, for, what will end up being one of the worst pandemics in human history. And right now, I think if we do save a million lives in the US, it’ll be because of the Tony Faucis’ and the Deborah Birxs’.
Celine Gounder: Almost 80 million people have died from HIV/AIDS worldwide since the start of that pandemic. There are lots of parallels between the AIDS pandemic and the COVID-19 pandemic today. Infectious diseases, whether that’s HIV or coronavirus, often fall most heavily on the shoulders of the most marginalized, the least powerful, the poorest communities.
Celine Gounder: Since the early 1980s, HIV has come to disproportionately affect people of color, not just gay men. These diseases magnify longstanding social and economic inequities. As with HIV, politicians have been slow to act, weighing the political risks of doing so against the lives at stake. And in that calculation, it’s clear that some lives are deemed more valuable than others.
Celine Gounder: There’s also been desperation for a treatment, whether that was for HIV or COVID-19 today. But one thing early AIDS activists like Mark and Peter learned is that science doesn’t need to be the enemy. One major difference, though, between those early years of the AIDS pandemic and COVID- 19, the pace at which science moves and through it all has been Tony Fauci. He’s the kind of guy who sees things through, and that’s reassuring at a time like this. He’s in it for the long haul.
Celine Gounder: “Epidemic” is brought to you by Just Human Productions. Today’s episode was produced by Zach Dyer and me. Our music is by The Blue Dot Sessions. Archival audio in this episode was from the film United in Anger: A History of Act Up, courtesy of The Equality Archive. Our interns are Sonia Bharadwaj, Isabel Ricke, and Claire Halverson.
Celine Gounder: Isabel is a Master’s student, and Claire is an undergrad. They’re both studying epidemiology at the University of Minnesota. If you enjoy the show, please tell a friend about it today, and if you haven’t already done so, leave us a review on Apple podcasts. It helps more people find out about the show. You can learn more about this podcast, how to engage with us on social media and how to support the podcast at epidemic.fm. That’s epidemic.fm.
Celine Gounder: Just Human Productions is a 501(c)(3) nonprofit organization, so your donations to support our podcasts are tax-deductible. Go to epidemic.fm to make a donation. We release “Epidemic” twice a week on Tuesdays and Fridays, but producing a podcast costs money. We’ve got to pay Zach, so please make a donation to help us keep this going.
Celine Gounder: Check out our sister podcast, “American Diagnosis.” You can find it wherever you listen to podcasts or at americandiagnosis.fm. On “American Diagnosis,” we cover some of the biggest public health challenges affecting the nation today. In season one, we covered youth and mental health. In season two, the opioid overdose crisis, and in season three, gun violence in America.
Celine Gounder: I’m Dr Celine Gounder. Thanks for listening to “Epidemic.”