A leading AIDS activist and epidemiologist explains our current crisis — and gives advice on surviving an epidemic.
Very few people have the breadth and depth of experience with infectious disease — scientific, activist, and personal — as Gregg Gonsalves.
Gonsalves was a leading member of ACT UP, a militant activist group that played a vital role in waking the American public up to the HIV/AIDS epidemic of the 1980s and ‘90s. An HIV-positive gay man, he spent the following decades doing research and activism surrounding AIDS and other infectious diseases. He has a PhD from Yale University in epidemiology, where he’s currently a professor studying microbial diseases, and received a MacArthur fellowship (more commonly known as a Genius Grant) in 2018.
So when we spoke on the phone this week and he sounded the alarm about the Trump administration’s push to relax coronavirus quarantine measures as soon as possible, I got a little panicked.
“The rest of the United States [will be like] New York two weeks from now,” he told me. “You can’t relax social distancing now without risking a conflagration.”
In his mind, Trump’s handling of the crisis feels like an eerie callback to the 1980s, when then-President Ronald Reagan chose to ignore early warnings about the threat from HIV/AIDS. About 450,000 Americans died of the disease between 1981 and 2000, a toll that Gonsalves believes can (at least in part) be blamed on Reagan’s “malign neglect” of the outbreak. For Gonsalves, the Trump response to coronavirus feels like the same thing all over again — just with the time frame sped way up.
We talked about his view of the science and policy surrounding coronavirus as well as the lessons the AIDS epidemic has for Americans today — not just when it comes to policy, but also what ordinary people can do to make things better despite being stuck at home.
A transcript of our conversation follows, edited for length and clarity.
What do you think happens in a world where certain parts of the country start ending restrictions on business activity?
You don’t have to be an epidemiologist to figure that one out: viruses don’t respect state borders. If we’re going to sort of be able to contain this outbreak, it’s going to have to be a national commitment.
Ron DeSantis, governor of Florida, and the governor of Mississippi have said they’re not willing to do these sorts of stay-at-home orders; I think the governor of Mississippi overruled local officials on this. We already have a patchwork of responses to the epidemic. New York City may be the epicenter of the epidemic right now, but there’s only a matter of time until it spreads to Miami and Tupelo and New Orleans — which [currently] has some of the largest increases in cases.
Everybody said we were in Italy two weeks ago. The rest of the United States is New York two weeks from now.
Unless we figure out how to sort of move toward what the New York Times called for the other day — a national lockdown of sorts — we’re just going to see cases increase and emergency rooms and ICUs across the country be filled to capacity. People no longer being in the hospital, but in morgues around the country — and people unable to bury their dead for risk of infection to themselves. It’s pretty clear what the choices are for us.
This isn’t controversial among epidemiologists, right? I want to be clear.
We’re operating off of public health history and what’s happened with other epidemics. We did this SARS, we did this with H1N1, we’ve done this with Ebola. It’s not different now except that this is a more widespread pandemic than we’ve seen before.
The models differ a little bit, but their implication is the same: Without extreme social distancing, we’re going to unleash the virus and potentially collapse our health systems. You can’t relax social distancing now without risking a conflagration.
Is there a world in which the United States could adopt an approach more like what you see in South Korea — where you have much more widespread testing and you have contact tracing of people who are infected? Or are we past the point of no return on that kind of approach?
Could’ve, should’ve, would’ve.
Three months ago, we could have used the WHO tests instead of developing a CDC test that was so defective that they had to start from scratch. If we were going to do scale-up of testing and contact tracing to contain the epidemic, it would have started happening in late December, early January. We’re now in a case where the virus is everywhere.
We do need to scale-up testing. We need to know how far and how deep this epidemic goes across the US, but we’re in the mitigation phase. There’s hundreds of thousands — if not millions — infected with the virus already. So we’re trying to sort of keep it from spreading further.
Testing is going to be an important part of that. Not just virus testing, but antibody testing to see who has been exposed and is no longer carrying the disease. Testing and contact tracing are going to be really important, but we’re at the end of March and we don’t have the testing capacity in the United States even to test everyone who comes into our hospitals to find out if they have Covid-19.
[The South Korea approach] is going to be our eventual way out. But we’re not there. We’re not even close.
You mentioned historical pandemics and epidemics earlier. I want to talk about the early HIV/AIDS outbreak, the most deadly recent outbreak in the US prior to Covid-19 — and a topic on which you’re a leading expert.
What lessons should we be taking from our own experience with a deadly epidemic in our country?
We have two cases of sort of botched responses to epidemics out of neglect and incompetence.
In the 1980s, we had a president who ignored the AIDS epidemic for most of his presidency — didn’t mention AIDS until the seventh year of his two-year term. That malign neglect, which for President Reagan was probably based on homophobia and racism and fear of people who use drugs, is a very specific kind of malevolence and incompetence.
Here, I don’t understand it. It’s also a denial and neglect and an abdication of responsibility. But in this case, we’re not talking about what America back then thought of as disposable people. We’re talking about the entire population of the United States, particularly our elderly and our sick.
One of the things that I think we learned from the AIDS epidemic is that people also grasp at straws. People were mixing concoctions to their bathtubs and trying blood thinners to try to fight HIV before we had the drugs to stop them.
You see the same thing being played out in front of your TV screen every night, with the president touting hydroxychloroquine or as some other sort of cure that he’s sure works. Maybe we’ll get lucky and we’ll find a treatment for coronavirus. But we also may have to wait several years before we’re able to contain it medically with a treatment or a vaccine.
I think the other thing to learn — and I think we’re seeing it now as we did then — is that communities pulled together. My old doctor, Joe Sonnabend, wrote a pamphlet in the early ‘80s called How to Have Sex in an Epidemic. You weren’t getting advice from the CDC, so the community banded together to sort of invent safer sex. We think of safer sex as something that’s always been with us, but it came out of a community mobilization against the virus.
Today, everybody’s staying at home to keep themselves safe, but they also don’t want to infect their neighbors and their parents and their children. This is an enormous act of solidarity and generosity, and it reminds me of the sort of community spirit that we had back in the LGBT community.
People are trying to figure out how to help their neighbors in a way that we don’t think about very much in our daily lives. It’s actually wonderful to see how people are banding together city to city, town to town across the US to keep each other safe. It’s remarkable considering what’s going on at White House, this sort of daily performance that we see on the evening news from the president. Down at the grassroots, down at the block basis, neighborhood basis, people are doing heroic things.
That “malign neglect” from the Reagan administration — can you be specific about what specific policies or failures led to and contributed to the hundreds of thousands of deaths back then?
The AIDS epidemic arrived in the United States in 1981. It was pretty clear within a year or so that this is no sort of nothing that was going to blow over. It was spreading all around the country and all around the world.
It took six years for a national response to be initiated from the executive branch. It was an absolute abdication of any sort of executive authority. President Reagan was not on TV in 1981 and 1982; there was actual radio silence for almost the entire two terms of the president who watched this happen. There were tens of thousands of people who were sick and dead by the time he left office.
And what’s interesting is that it continued into George Bush senior’s administration, where we had tens of thousands more people who died. The Ryan White Care Act and other sorts of legislation that was crafted from the Democratic Congress got signed later on.
We botched the scale of the coronavirus testing. We botched the scale-up of HIV prevention in the early years when we had a few cases in a couple of our cities and we could have stopped this disease in our tracks — if there was national leadership and national mobilization.
I don’t know how old you are, but I remember when the Legionnaires were in Philadelphia in that hotel [in 1976] and this new disease struck the hotel. The CDC was mobilized, there was a national mobilization over a few cases of a new unknown disease. A few years later, we had people screaming from the rooftops that [AIDS] is going to be a disaster — but nobody really was listening.
Does it feel like déjà vu when it comes to coronavirus — but sped up?
The déjà vu is in a bumbling idiot of a president who is totally unprepared to do what’s necessary to deal with the health and wellbeing of the people he serves.
The mobilization outside of DC among ordinary people is completely different than what we saw in the early days of the [AIDS] epidemic. Just think of our heroic doctors and nurses in our hospitals, the academic community, the community of faith leaders. If we had this kind of mobilization back then, we would’ve been in much better shape, but we didn’t. We did among ourselves in the gay community, but we were a small group of people.
Today, it’s been a national mobilization — except at 1600 Pennsylvania Avenue.
Once again, we have a president who failed to take an epidemic seriously and ended up getting many of the people who he’s supposed to represent killed.
I don’t know if this is even the right way to think about this. But is there any way, based on your experiences with ACT UP, to describe what coronavirus activism might look like?
Is it the social solidarity that you’re describing earlier, in terms of community mobilization, or is there some kind of more directly political way to put pressure on the White House or governors or other authorities to do more?
Weeks ago, old ACT UP alums and younger AIDS activists were all over this. Our antennae go up when we see infectious diseases get ignored and I think we were all talking about this in December and January. There’s a Covid-19 activist group in New York City that’s doing everything from diagnostics to social media.
My friend Amy Kapczynski at Yale Law School and I, who both have AIDS activist backgrounds, have written for the Boston Review talking about the political challenges of this pandemic. A lot of old AIDS activists have been central to this and it’s no coincidence that Debbie Birx and Tony Fauci are two old AIDS hands as well.
There’s been a very big mobilization around AIDS activists around the coronavirus epidemic, but the big challenge is that you can’t do what we used to do, which is to storm the NIH and seize control of the FDA — because you can’t leave your house.
That’s why I’m asking. A lot of people are sitting at home feeling impotent and scared; what would you tell them if somebody reading our interview thinks, “I would like to do something about this the way these AIDS activists are organizing”? What kinds of avenues for activism are there?
Well first of all, they’re doing something really, really important right now. As I said, social distancing is an act of solidarity and generosity, it’s just tremendous. Think of the millions of people who are going out — maybe to go grocery shopping once a week.
The other thing is that we got to get more people to join the cause, and it means reaching young people who seem to feel a little bit immune to this. I was on the phone with a group of Harvard students earlier this week where they’re developing sort of a campaign called #WhyIStayHome. The idea is trying to reach out to people through social media; we have a lot more resources in terms of getting the word out about what needs to be done that is sort of proliferating across the country.
I just retweeted an editorial from a West Virginia newspaper, which was simply brilliant saying, “We need to take this seriously” — really challenging what’s coming out of the White House in Charleston, West Virginia. We’re able to amplify that, an editorial in which you would mostly consider a red state.
Lots of stuff is happening. I think organizers from the Women’s March — I was on a call with them yesterday — are trying to figure out ways to keep the pressure on Congress, on governors, and local officials. Remember that the president can make whatever pronouncements he wants on social distancing, but it’s going to be the governors and mayors who decide what happens.
So a lot of activism can happen very locally, where you may know your mayor. You may know the member of your city council. You may be able to get on the phone with them and make change: It doesn’t matter if you reach Mike Pence or Donald Trump, if you’re reaching the governor of Rhode Island or the mayor of Hartford and saying, as a citizen of your state, as a citizen of your city, I expect you to hold the line and keep us together by keeping us apart.
You’ve tweeted, on #WhyIStayAtHome, that you’re someone who has HIV yourself. What does it feel like to move around in the world under these circumstances, especially as someone who’s — I’ve seen your picture — doesn’t look like the kind of older person we associate with being especially threatened by the coronavirus.
Well, one is I’m not immunocompromised. I’ve been on antiretroviral therapy since 1996. I’m more than about 15 years with a stable HIV infection.
That’s great, that’s just great.
But there are other people who have HIV who may be more compromised than I am. As I said in that tweet, my mother is 86 years old and I have a sister-in-law who has cancer. I worry about them more than I worry about myself. I’m no spring chicken; I’m 57 years old, so my chances, in general, are higher than yours of developing symptomatic disease.
But moving around in the world, I feel less physical risk than I do the weight of the history of the AIDS epidemic. Another epidemic being mishandled; it’s PTSD of a certain sort where you’re like, we’re really doing this again? I shouldn’t go to Las Vegas because I’m pretty unlucky, and I think a lot of us are feeling that way.
We have resilience and an ability to respond and to organize and know what to do. But we also know what it’s like to watch your loved ones die, these waves of dying friends, over the course of a month and years.
I don’t know anybody personally who’s died of coronavirus yet. But I’m waiting for the shoe to drop and it’s terrifying. Is it going to be my partner? Is it going to be any of my close work colleagues? Going to be somebody in my family? And that feeling is very reminiscent of the days of the AIDS epidemic because you were going to funeral after funeral.
I know the hospital here [in New Haven] is close to capacity in terms of its ICU beds. New York hospitals are the same way. And so the chances that you’re going to be able to get access to care with each passing day is going to become more remote because there’s not going to be enough beds to put you in. I’m petrified that I’m going to get a call from somebody who says I have it or somebody saying, he has it or she has it and they’re in the ICU or something like that.
Advice is almost the wrong word here, but do you have any guidance for helping people think through these emotions, that kind of fear, given your experience with an epidemic where people you knew were getting infected and dying?
A member of ACT UP, an art critic named Douglas Crimp, wrote a big essay called “Mourning and Militancy.” He talked about how, in ACT UP, we were all sort of militant: fighting, and so didn’t really want to talk about how we felt about what was going on. He said that it was important to acknowledge the anger and the grief and the sadness you’re feeling, while sort of maintaining an outward focus, a commitment to making things better. As Vito Russo, another member of ACT UP said, “We have to be alive when this is all over to make sure it never happens again.”
So I think the advice for people is to understand what’s going on emotionally for you, the grief you’re feeling, the sadness you’re feeling — even if it’s not for somebody who’s gotten sick and died, but for the sort of life that we once all had in January or February. That life is over for the foreseeable future.
And it’s hard to believe they we’re all going to be the same after these next few months. Take it in, understand it. I’m not a touchy-feely person, but I think it means talking to people you care about either face to face if you’re in the same house with them, or online or whatever.
But don’t stew in it; say “there’s something I can do.” I can protect my community by social distancing. Whatever skills I have, I can contribute — I can write for a newspaper or I have power as a citizen in my city or my state. I can influence my elected officials on the phone or by email or other means of communication. It’s to act up: Face your emotions and your grief and then make sure that we can get through this together, with the fewest deaths and the least damage.
Author: Zack Beauchamp