“Genius” Gregg Gonsalves: “We were f*gs, whores & junkies who made the system listen”

Gregg Gonsalves took the proverbial road less traveled.

In the 1980s, he dropped out of Tufts and, in the midst of the early AIDS epidemic, joined Boston’s ACT UP chapter. The advocacy he did with the group and others eventually lead him to his work in epidemiology. Now an assistant professor at Yale, Gonsalves’s work recently earned him the prestigious MacArthur Fellowship (which comes with a cash award of $600k plus)—popularly known as the “genius grant.”

Queerty talked with Gonsalves about the unexpected accolade, his thoughts on PrEP, and the vital intersection between healthcare and human rights.

How does it feel to be a genius?
Well, I don’t accept the “genius” moniker. And they don’t describe it that way either. They talk about it as an award for creativity. I’m creative, I can say that. If I take myself out of the picture, I think they do tend to honor people who’ve done creative work that doesn’t necessarily fall within the guardrails of their disciplines. But it feels good.

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I found out the day after Labor Day but had to keep it a secret until October 4. So, it felt totally unreal for a month because I couldn’t tell anybody except my partner. And then after I told everybody, I heard from everybody in my past—everybody from people I went to school with to old employers. It was sort of overwhelming.

How did you celebrate?
I’ve been sort of low-key about it. At work, we had a little celebration, some champagne that day. And then that weekend I went over to a friend’s house with a small group of colleagues and friends to discuss it. I may do a party in New York City, but I want it to be a benefit for the Sex Workers Advocacy Network, which does needle exchange here on the streets of Fairhaven.

It’s a great honor and I’m happy that the MacArthur Foundation chose me, but I don’t want to draw much attention to me. I just want to keep people focused on the work and what we need to do together.

It will probably surprise people that your dropped out of college in the 80s and didn’t get your undergraduate degree until you were in your 40s. Why did you drop out?
Like a lot of second- or first-generation children of immigrant, I wanted to do something that would make my parents proud—like become a doctor. I went to Boston to enroll in Tufts University thinking I was going to be pre-med. But after the first or second semester, I realized it really wasn’t of interest to me. I started studying literature. I was really quite happy for a few years in college. But I lost a good friend, my uncle died of cancer around that time, and I got very sick with mono and had to withdraw from classes. But out of all that, I came back and just felt like I didn’t want to be there. In retrospect, was I clinically depressed? Was I struggling with my identity as a gay man? This was under the Regan administration. It wasn’t Morning in America for gay people. So, I dropped out of school and was waiting tables.

How did you become involved with ACT UP?
I was trying to figure out what to do with my life. One night I went out dancing with friends and at the end of the night, I met a guy. We ended up dating, and soon after he came over to my house, very upset, and said we had to break up because he was HIV positive. I said, “It’s stupid to break up. There’s safe sex. We’ll figure out how to deal with this.” Figuring out how to deal with it…in those days there was no Google. We ended up looking around and I must have seen a poster for ACT UP Boston or something like that. I ended up at a meeting thinking, here’s a generation of gay men—not a generation, men my own age, men in their 50s and 60s, women as well, all queer people trying to figure out what to do about this disease and share information about treatment. I became very, very involved in it. Organizing a chapter of Queer Nation and being part of ACT UP Boston felt real to me in a way that being in school did not.

How did your experience with ACT UP inform your current work?
It’s the most important era in my life. Vito Russo, who wrote The Celluloid Closet and was a member of ACT UP, said that living through the AIDS epidemic was like living through a war—except only gay men and women and queer people could hear the bombs and gunshots going off around them. It was like life during wartime. It shaped my entire life. We formed Treatment Action Group, the spinoff of ACT UP. And then I went to work for Gay Men’s Health Crisis, really doing the same thing I did in ACT UP Boston all those years before, which is figuring out how to get access to treatment and expedite research and drug approval. It went from sort of fumbling around for knowledge to helping to set policy in the 90s.

You’ve said that the AIDS epidemic of the 1980s was human-made. What do you mean by that?
So, infectious diseases are natural phenomena. Ebola, tuberculosis, HIV. But epidemics—when infectious diseases get out of control, that’s a policy choice. In the 1980s, a couple of dozen people at a Legionnaires convention got a respiratory infection and the United States went into high alert trying to figure out what had happened to these men, and now we call it Legionnaire’s Disease. But thousands and thousands of gay men, drug users, sex workers were dying in the 80s and nobody could give a shit. So, there was a choice to let the AIDS epidemic get out of control in the U.S.

I’ve done more recent work on Ebola. Ebola has been around for a long time, but policies of the World Bank, the International Monetary Fund and big donor nations like the U.S. have decimated the economies and healthcare systems of many countries in West Africa, after their own civil wars. Ebola came onto the scene in West Africa in 2017 in a set of societies that were defenseless against it because Western donors had kept the country from rebuilding a strong health care system in the wake of the civil wars there. That’s what I mean: there are lots of diseases that are curable and preventable, but politicians and decision makers make decisions that often make things worse or let things fester.

Your work focuses on the intersection of public health and human rights. How do those areas intersect?
Look, if you want to look at who our society values and who it doesn’t value, who it considers disposable, look at the health indicators for people in neighborhoods. You’ll see diseases that are treatable and curable, whether it’s cardiovascular disease or HIV or breast cancer, and African Americans and Latinos will have poorer health outcomes generally than their European American counterparts. If you look at maps of the U.S. and look at life expectancy, you go down to the rural South where the history of racism is still alive and well—think of the voter suppression we’re hearing about in Georgia right now. It’s no coincidence that Georgia has some of the worst maternal health outcomes in the country. Racism, homophobia, classism, sexism—those are political terms we throw around, but in the end, whether you live or die on this planet often depends on who you are, where you live, how much money you have, the color of your skin, or your gender and sexuality. We may be created equal, but society pushes us into the paths of epidemics and other diseases depending on who we are.

So this is the kind of thing you work on at the Global Health Justice Partnership.
Yeah, we have a project here that I run with my two friends Allie Miller and Amy Kapczynski. Allie does sexuality and gender stuff, Amy does a lot of drug pricing and intellectual property work, and I tend to focus on infectious diseases. So, we’re thinking about the links between human rights and health, social justice, and public health. Because there’s the negative version I told you about: depending on who you are, you’re gonna have worse health outcomes compared to your counterparts who are wealthier and whiter. But the lesson from ACT UP is that that’s not destiny. There may be social or economic or political deterrents to health, but it’s not destiny. The story of ACT UP is people who were despised—we were fags, whores, and junkies and we made the system listen to us. It’s not impossible to fight back.

At GHJP we’re trying to think about that beyond HIV. How it affects maternal and child health, Ebola, hepatitis C drugs, asthma rates—because it’s all tied together.

Do you have a sense of how your research is impacting policy?
Global Health Justice Partnership—this is how we do things: it’s basically saying let’s take science, let’s take the law and think about how public health and human rights intersect and try to make things better by both making a scientific case and a legal case about how to do the right thing.

I spent a large chunk of my life in ACT UP and Treatment Action Group and GMHC advocating directly with people in Congress and in the White House, being an advocate first and foremost. Now that I’m in an academic setting it’s one step removed. We work with partners like the American Civil Liberties Union or Treatment Action Group—we partner with them on policy issues and provide the evidence, the scientific and legal ammunition to make advocacy cases, even if we don’t do the advocacy directly ourselves anymore. That being said, I still consider myself an activist. I was arrested last summer when the battle was happening around the Affordable Care Act. A bunch of us interrupted the Senate vote on the motion to proceed. So, I still consider myself an activist, but my work on the professional side is trying to think about how to mobilize evidence to support advocates as well.

What’s the biggest thing that needs to change in our politics regarding the treatment of HIV and similar epidemics?
There’s a lot of gay people out there. The world I grew up in 1981 and 2018 couldn’t be any more different. Coming out is much different than it was 40 years ago. That being said, we can’t let our defenses down. In certain quarters, we may not be expendable or disposable people anymore, but we’re not the number one priority. And when you’re an afterthought, that’s when bad things happen. So we know there’s been a terrible epidemic among young gay men of color, African American men, not just in the rural South. But this phenomenon didn’t happen when Donald Trump was elected two years ago. We’ve known this for a long time, and certain parts of the gay community may have forgotten that we are our brothers’ and sisters’ keepers. We’re enjoying our post-Stonewall, post-ACT UP, the post-gay-marriage world of freedoms, but we’re not going to be free until all of us are free. In a few weeks, we’ll get to vote. How many gay and lesbians will say, It doesn’t matter. But it does matter. It matters to the young gay men who are getting infected with HIV needlessly. It matters to women who are getting diagnosed with breast cancer too late because their government decided not to extend Medicare and Medicaid. Epidemics are manmade, but they also happen when we forget where we came from and think the struggle is over.

There was some early debate about the use, and maybe the usefulness, of PrEP among HIV activists. What’s your perspective on the prevalence of PrEP?
I think Michael Weinstein from AIDS Healthcare Foundation was spreading misinformation about PrEP. I think Peter Staley and others who were working on the “PrEP for All” campaign had the right idea. The point is that we have something that can prevent HIV. If you’re on PrEP you’re not going to infect your partner. It’s just not going to happen. When you start looking at who has access to PrEP and who doesn’t, it goes back to the issues we’ve been talking about. Let’s go back to the epidemic in the rural American South. How many people are on PrEP there? If the PrEP for All campaign succeeds and everybody gets it no matter the color of their skin or the place they live, we could stop the epidemic in the United States instead of having a New York Times article every five years saying how bad the epidemic is among young gay men of color. There’s no question in my mind that PrEP is one of the most important prevention innovations we’ve seen in a long time. It’s very hard to change behavior in terms of wearing condoms, but here’s a pill you can take to protect you and your partner. It’s sort of an amazing thing.

What will the MacArthur grant mean for you and your research?
I’m still sort of stewing about what it means. I sit between the worlds of activism and advocacy and science and epidemiology, and I think hybrids and people who are not recognizable to a single community of people often feel like they belong to none. I’m an ACT UP activist sitting at Yale University. I’m an unusual case. I don’t think the MacArthur Foundation changes that, but I do think it says maybe you were on the right track. Embrace the things that your life and work represents and keep going.

It’s nice to get the validation and financial support. But I think about what happens in the next six weeks with the election and all the other things happening around us, and my story sort of starts to recede into the background and I think about all the issues we’ve been discussing.

What’s going to happen to the most vulnerable people in our gay community, but also in our larger American community? I have nephews who are in high school and I just wonder what the world is going to be like for them.