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Lessons from the front lines of the AIDS epidemic

On the latest episode of the Social Distance podcast, James Hamblin and Katherine Wells are joined by Gregg Gonsalves, a Yale epidemiologist and AIDS activist, who describes his experience fighting AIDS in the 1980s and ’90s and the implications for today.

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What follows is an edited and condensed transcript of their conversation.

Katherine Wells: We got a question from a listener about something that’s been floating around and that I’m actually quite curious about as well. Ted writes, “In recent weeks, there’ve been a lot of stories about COVID-19 that look at HIV as a kind of older-sister narrative. For the most part, I’ve hated these stories because they treat HIV like a past plague that only impacted white, urban, middle-class gay men. What I have not encountered is a mainstream look at the criminalization around COVID-19 and how that relates and is informed by HIV criminalization.”

We need an expert for this one. Gregg, could you introduce yourself?

Gregg Gonsalves: My name is Gregg Gonsalves. I’m an assistant professor of epidemiology at the Yale School of Public Health.

James Hamblin: What were your first thoughts when stories of the new coronavirus, COVID-19, started popping up in January?

Gonsalves: I was thinking, Okay, there’s not a lot of data yet. Don’t panic. Nobody expects a worldwide pandemic. What’s interesting is that a lot of the old AIDS activists have started rising up. There’s a COVID-19 working group in New York City, which has a lot of the activists who were involved in the early AIDS response. A lot of the old physicians and scientists from that time too. This happened during Ebola in 2014 and 2015 too, around the health-care-worker quarantines in the U.S. The AIDS activists were protesting outside of Bellevue on behalf of the doctors who were being quarantined.

Hamblin: I remember at that point you were worried about it from a human-rights perspective, that the government shouldn’t be forcing people into quarantine.

Gonsalves: Yes, it was very different, mostly because we didn’t have an Ebola epidemic in the United States. Now, in the context of COVID-19, we need to be thinking about testing, contact tracing, and isolation. But I’ve never been in a situation before where quarantine made sense. Even in the AIDS epidemic, it didn’t make sense.

Hamblin: With the Ebola quarantines, there were, if I recall correctly, guards outside of people’s houses. This was enforced.

Gonsalves: People were very spooked by [Ebola] in a way that they’re not now, with a real virus in their midst. There was much more paranoid fearmongering in New Haven around Ebola when there was no Ebola to be found within 6,000 miles.

Wells: Why do you think that is?

Gonsalves: I think the Ebola fear is tied to a deep racism about Africa. There’s a racist epistemology built into viruses and disease from Africa.

Wells: We’ve seen some racism tied to coronavirus as well.

Gonsalves: Yes, with China. People react to threats in different ways. We have people who are rising to the challenge, whether they’re health-care workers or people at the Stop & Shop who are going into work every day, putting themselves on the front lines in another way. There’s a lot of heroic stuff happening. At the same time, there’s really bizarre things, like the takeover of the Michigan state capitol yesterday. But it is amazing how many people have been social distancing without a threat that they can see in front of them. They just know that it’s something they have to do.

Wells: About that question from our listener: I think the listener was concerned about stigmatization and criminalization of COVID-19. And there are a couple of examples that we’ve seen. Because COVID-19 is so widespread, it’s different [from previous infectious diseases]. But there are a couple of examples of criminalization we’ve seen. The Department of Justice has declared that federal anti-terrorism laws can be used to prosecute anyone who threatens or attempts to spread the coronavirus. New Jersey criminal laws have been used to charge a man who allegedly threatened and then coughed on a grocery-store clerk in Pennsylvania. A woman who is not believed to have the coronavirus is facing charges for purposefully coughing on bread. What do you think about that? Is there a connection [to the HIV epidemic] in your mind, or no?

Gonsalves: When I think of HIV criminalization, I think of Michael Johnson and some of the other cases in which people have been put into jail for long sentences for not even transmitting HIV, but for potentially exposing someone to HIV, even if the person doesn’t acquire HIV. Or even if they were wearing a condom, but they didn’t disclose [their HIV status]. There are serious criminal penalties, and there are people in jail around the U.S. because of bogus HIV criminalization statutes.

The criminalization in the context of COVID-19 is weird because you have, for example, the coughing-on-bread incidents, but you also have the attorney general saying he’s willing to go after people who infringe on other people’s liberties to break social distancing. There’s a weird anti-public-health criminalization piece. And I don’t know if we’ve seen this yet, but if you think of people who are homeless, people using drugs, they have very little ability to social distance and are at the highest risk. They’re already marginalized and stigmatized in our community. You can just see somebody who’s experiencing homelessness or somebody who uses drugs getting caught up in some narrative about spreading it in the community. It’s a matter of time until we see it.

Wells: In New York, now they’re closing the subway overnight, and as part of that are trying to get homeless people to stop sleeping on the subway. And the tone of it is very stigmatizing to homeless people. They’re saying homeless people are putting essential workers at risk by sleeping on the car trains and things like that.

Gonsalves: It is stigmatizing of homeless people. It’s clearly going after homeless individuals in the city who have no other place to go. With a gazillion hotel rooms empty, designated apartments empty in New York City, there’s plenty of places to put people in New York, but Governor [Andrew] Cuomo wants to just shoo them off the subways. It’s really about how we think about people who are homeless in the U.S. and in New York.

Wells: It doesn’t seem like a one-to-one comparison at all, but there is some resonance in the sense that people who were already marginalized become targets. Our fear gets tangled up with marginalization during any crisis like this.

Gonsalves: When infectious disease is involved, we can go back to the bubonic plague and start talking about how Jews were targeted for stigmatization and violence. It doesn’t surprise me that for COVID-19, we would find our own scapegoats. We’ll find our own people to discriminate against and blame. It always happens with infectious disease.

Wells: Overall, do you think HIV in the ’80s is instructive for this moment? And how or how not?

Gonsalves: The HIV epidemic in the United States was the last big epidemic to confront the United States. Yes, it was a concentrated epidemic that primarily struck the LGBT community, people who use drugs, sex workers, and communities of color. But watching how the government responded, watching how communities responded and banded together to help each other, watching the role of advocacy and community information, the whole issue of drug pricing and drug development—there are a lot of parallels. You have to go all the way back to the influenza outbreak of the last century to have anything that’s comparable to what we’re seeing now. So yes, I do think there are parallels and lessons to be learned, but COVID-19 is going to present its own peculiar problems in the 21st century that we haven’t really thought of yet.

Hamblin: In 1984, the secretary of health and human services said that “we hope to have a vaccine ready for testing in about two years.” That was 36 years ago, and we still don’t have an HIV vaccine. Anthony Fauci was one of the heads of the federal response at that time, and he is now one of the heads of the federal response. And we have a federal administration that, overall, ideologically, reveres the Reagan administration and points to it as this golden era of America. You lived through that, and the vaccine was not delivered and there was a lot of distrust and you had to take things into your own hands. Now, though, you seem hopeful.

Gonsalves: Not so much, to be honest with you. When we started seeing the tweets about liberating Virginia and liberating Minnesota from Donald Trump, and now with over half of the U.S. states starting to lift social-distancing restrictions, I think we jumped the shark. I think we’re really in big trouble. There’s no way that even a quarter of those states are ready to do what they need to do to ensure that they don’t have a resurgence of the virus. And the president is eager to stoke this chaos. Ronald Reagan might have had a malign neglect and really didn’t care about the people who were dying from AIDS, but here there’s a glee in perpetuating the chaos, because it stirs up and rouses the president’s base. I don’t think it’s going to end well. With half the states now starting to collapse their basic public-health response to the COVID outbreak, I think we’re going to see a very hot summer over the next few months.

I’m not going to give up. We didn’t give up then; we’re not giving up now. But we’re definitely fighting an uphill battle. What’s shocked me the most is that, while I’m not a fan of Ronald Reagan, and I think he had a lot to do with the deaths of a lot of people, I felt there was a functioning federal government that could rise to the occasion. But something broke in our ability to deal with a national crisis. Maybe I was living in a fantasyland for the past few years, but I didn’t think we were on that sort of precipice. We’ve had a wholesale collapse in management and leadership happen in real time.

Wells: I had been spending a lot of time thinking of this as something that was going to be really hard but that would eventually go away. I’m starting to realize that this is something that we’re going to live with for quite some time. And I am curious if you have any thoughts on what the difference is between thinking about something that we’ve just got to hold our breath for until there’s a vaccine and thinking about a disease that we will live with for potentially years, if not longer.

Gonsalves: My generation and your generation have been lucky. AIDS epidemic notwithstanding, we’ve avoided world-historic calamities. If you read Virginia Woolf or if you read some of the Russian [novelists], World War I transformed modern history. Nothing was the same afterward. And I think nothing is going to be the same after this. I think it’s not going to disappear this summer. I think we’re in it for the long haul of resurgences. It may show up in the middle of flu season, which then all bets are off about what happens. If we don’t have a vaccine, and even if we do, there’s going to be a pre-COVID time and a post-COVID time, just like World War I reshaped the modern era. This epidemic is going to do the same.

Wells: Is there anything to say about how you processed this life-changing event in the ’80s? How do you adjust to a new reality that’s going to be with you for a long time?

Gonsalves: It happened in the ’80s. It also happened when I moved to South Africa, because people were dying in droves. And it was terrible. But there was work to do. We weren’t helpless and powerless. I found a lot of strength and hope in solidarity and in the people who I worked with.

It doesn’t change the catastrophic pain and suffering that many people are going to experience. But you’re not alone. You’re not powerless. And every once in a while, you get lucky. In 1995, I felt like, This is going to be with us forever. We’re all going to die. I was doom and gloom. A year later, drugs came on the market for HIV that I’m taking today, that kept me alive for the past 20-plus years. Things can change in an instant, and sometimes you just have to hold out. You have to just make it to the next year.