When it comes to dealing with HIV/AIDS, few people have been on the front linesin the areas of activism, research and instructionlike Gregg Gonsalves.
Gonsalves, a MacArthur fellow, is an expert in policy modeling on infectious disease and substance use, as well as the intersection of public policy and health equity. His research focuses on the use of quantitative models for improving the response to epidemic diseases. For more than 30 years, he worked on HIV/AIDS and other global health issues with several organizations, including the AIDS Coalition to Unleash Power (ACT UP), the Treatment Action Group, and the AIDS and Rights Alliance for Southern Africa.
He is currently an associate professor at Yale School of Public Health and an associate professor at Yale Law School.
Windy City Times: You have been involved in activism for quite some time. What propelled you to go in that direction?
Gregg Gonsalves: I graduated high school in 1981when the first case of HIV/AIDS/GRID appeared in gay men. My coming out in young adulthood was at the dawn of this epidemic.
In the first few years of that decade, I was in college but then I dropped out. Then, when hanging out in Boston, I met somebody. We started dating and then one night, he came over and was drunkand he said, "We gotta break up." After a half-hour or so, he said, "I'm HIV-positive." I said, "You know what? We'll get through this together." But this was before the internet; information was from the newspaper or the library, which I couldn't go into because I wasn't a student anymoreso the first place I got information from was [activist organization] ACT UP Boston. It was also around the same time Queer Nation was exploding around the country.
It was thrilling. Yes, it was scary because AIDS was therebut, all of a sudden, I had found my people. There were people who cared about social justice, LGBT rights and AIDS. I was hookedso much so that when my partner went to New York for law school, I stayed in Boston with ACT UP and Queer Nation.
[Eventually,] I follow and join ACT UP New York, and my whole life became consumed with activism. That's how it started.
WCT: I've had some people in the HIV at 40 series talk about the day they found out about their HIV status. Could you take me back to the day you found out?
GG: It was '95 or so, and my cousin was dying of AIDS in New York. I was in ACT UP and was HIV-negative, or so I thought. I went to my physician, Dr. Joseph Sonnabend, to get my test results. Joe called and said, "I'm coming over." I thought, "This can't be good."
We came over and said, "You're positive." This was right before protease inhibitors come down the line, and my cousin is deathly ill. It was my old apartment that I lived in with David Barr on Second Avenue and 12th Street, in New York. A couple friends came over and we talked, and that was it. And then I had to tell my conservative Italian-Portuguese Catholic family, and come out as an HIV-positive gay man.
Within a year, protease inhibitors were on the scene and I signed up for a clinical trial. I seroconverted at the right time.
WCT: Did finding out you were HIV-positive affect your approach to activism in any way?
GG: Not really. I was so identified with my friends, who had HIV, and was working so diligently on HIV-treatment stuff that it hadn't occurred to me that anything was different.
WCT: I know you deal with health equity. For our readers, can you discuss the difference between equity and equality?
GG: Oh, God. [Both laugh.] Anyone who does this for a living would probably yell at me, but inequality is two doesn't equal three; it's a statement of facts, like "John makes less money than Sandra." Inequity has a justice component and a value judgment; there's something wrong with an imbalance.
WCT: So inequity would have a tie to activism?
WCT: As you know, activist giant Larry Kramer passed away last year. What do you think he meant to activism, and what did he mean to you?
GG: He was a complicated guy. I wasn't in ACT UP from the beginning, so I didn't know him in his foundational role. I only knew him when I joined ACT UP in New York, and then he split off to found TAG [Treatment Action Group]. Larry was very angry at us. Larry was angry at lots of people at lots of points in his life.
My colleague, Mark Harrington, and I, recommended that there should be a reorganization of how NIH does AIDS research. Larry and Martin Delaney wanted something on a larger scale, like the Manhattan Project. Mark and I wanted a leadership change with research at NIH; Larry was livid. We were still friends enough that he invited us out to his placeand he's yelling at us across his kitchen table, saying, "I want to flush your head down a toilet."
So he could be incredibly cruel and, in a way, he disowned some of the [people] who went to found Treatment Action Groupbut, years later, he turned out to be very generous. I ended up going back to college in my 40s and ended up applying here at Yale; Larry wrote me a recommendation. The second-to-last time I saw him was at a party/reunion and I said I hadn't the Broadway revival of The Normal Heart. And he said, "Closing night's next week. Why don't you come with me?" So I went to the closing night. The weird thing was that I was there 25 years after seeing it in the West End, in London. I was listening to everyone crying and I was thinking, "This was history"and no one in that room knew it. I blew Larry a kiss and walked away. It was probably the last time I saw him, and it was a long time agomore than a decade.
Everybody's complicated, but he was more complicated than most.
WCT: As you know, there is no AIDS vaccine. Does that surprise you?
GG: What surprised me was that we had a COVID vaccine in under a year. I write a column for The Nation magazine, and one of my first was, "It's 40 years later and we don't have an AIDS vaccine. Don't get your hopes up about a COVID vaccine." Eight months later, we had a COVID vaccine.
It's turned out to be a very difficult and technical project to make an AIDS vaccineand who knows if we'll ever have one? It's remarkable: We spent a lot of money on it, and a lot of research has been instrumental in developing a COVID vaccine.
WCT: In a way, I wasn't surprised about the development of a COVID vaccine. There was a whole "moral" aspect in the '80s to AIDS; COVID immediately affected everyone.
GG: Yeah. I think the science had progressed that made the achievement possible. I hate to say it, but I think the dollars the Trump administration put into the vaccine was critically important. I did affect everyone, as you said; the disparities or inequities between who COVID kills and who gets it are not equal. But it affected enough people in power that it became a national priority.
WCT: Regarding AIDS, it seems people of color are still disproportionately affected. Why do you think that is?
GG: I [recently] wrote a piece for The Nation that deals with white supremacy and the history of race in this country. I wrote, "The fact that more people of color are dying from COVID-19 is not surprising."
The HIV epidemic is another case in point, but you can go back in history to Jeffrey Amherst saying we should give smallpox-infected blankets to Native Americans to kill them. There's a historian named Jim Downs who wrote a book called [Sick] from Freedom about how, at the end of the Civil War, freed slaves were stricken with smallpoxbut nobody ever wrote about it because of who it was happening to. I looked at some medical records a few years ago and realized that there's a smallpox epidemic in the Southwest that nobody talks about. We talk about Tuskegee, but we don't talk about the gas riots in El Paso [a 1917 event sparked by a requirement that Mexican immigrations take kerosene delousing baths and get vaccinated]; that policy lasted until the '60s. If you're wondering why African Americans are infected with HIV and die of diabetes and other diseases, look at healthcare and race.
WCT: Well, we've covered the past and present, so let's talk about the future. On a certain level, there seems to be some apathy regarding HIV/AIDS. Where do you see AIDS activism going?
GG: Because of COVID, I've been thinking a lot about this. A lot of activists from the old days and the young ones now are working on COVID vaccine access as well as PrEP. If we want to deal with HIV, we have to deal with the rest of the shit we've been talking about, right? We need to consider the COVID and HIV epidemics as one piece of the puzzle, but there's also police violence. The Black Lives Matter movement is a public-health movement. We have to think about climate change; mosquito patterns come up from the Gulf Coast and now we're going to have malaria back in the United States.
The environmental movement, the fight for racial justice and more are all part of the same thing, and a huge movement is needed. Rich people are always going to get what they need. This is the moment of truth.
WCT: Is there anything you wanted to add?
GG: Any of the achievements we've. made, we fought for. They didn't come because someone thought we were deserving. We just have to be vigilant, and steel ourselves for the next challenge.