Last fall, the MacArthur Foundation announced their annual “genius awards.” One name in particular stood out: Gregg Gonsalves, 55, an assistant professor of microbial diseases at the Yale School of Public Health.
In the 1980s, Dr. Gonsalves was a leading member of the AIDS advocacy group Act Up; he went on to found or support a number of domestic and international AIDS organizations.
The foundation cited his contributions in “training a new generation of researchers who, like himself, work across public health and human rights sectors, scholarly research, and activism to correct disparities in global public health.”
We spoke for two hours in New York recently and then again later by telephone. Our conversations have been edited and condensed for space and clarity.
The MacArthur people say you’ve combined activism with quantitative research. How exactly?
Well, I’m an epidemiologist. That’s my profession. However, my work involves a fusion of disciplines — biology, policy-analysis statistics and activism. One of the things I do at Yale is co-direct the Global Health Justice Partnership, where we research public health issues.
What we do there that’s slightly unusual is that we sometimes borrow techniques from the social sciences and combine them with advocacy and political organizing. Epidemiologists usually work off disease data.
How does this approach work on the ground?
A few years ago, I was working with a community group in the Khayelitsha, a large township outside of Cape Town, South Africa.
The women there reported a huge problem with sexual assaults. At night, in order to relieve themselves, the women would leave their houses and walk long distances to communal toilets. En route, their risk for sexual assault was high.
By creating a simple mathematical model, we showed Cape Town’s leaders why installing more toilets made economic sense. In our model, we showed how less time outside meant less risk for the women.
We put an economic value on the cost of more toilets and compared it to the cost of the assaults. Aside from the human rights implications, we showed how more toilets would be a money saver.
How did that work out?
Unfortunately, Cape Town did not do the right thing. But we gave them the facts.
Where else have you tried this approach?
With H.I.V.-AIDS. Research shows that between 14 to 15 percent of the H.I.V.-positive people in the U.S. don’t know they are infected. Finding them is a needle-in-the-haystack problem.
Now, there exist some very effective quantitative tools for locating needles in haystacks. Oil companies doing oil exploration and rescuers searching for downed airplanes use them. Though the problems aren’t analogous, you can repurpose their algorithms to locate clusters of undiagnosed H.I.V. cases.
That’s important, because H.I.V. remains a problem among gay men in the U.S. and among opioid users who share needles.
Why did you become an epidemiologist?
Frankly, because of H.I.V.-AIDS. I was a gay college dropout in the 1980s. That’s when H.I.V. was first struck in the United States. The government didn’t seem to care. It was labeled the “gay disease,” and that made it easier for the mainstream to ignore.
A man I was in love with was H.I.V.-positive. I needed information about what we were up against. There wasn’t much. So I began going to meetings of the activist organization Act Up and later I helped co-found the Treatment Action Group, which pushed for research and new drugs.
At both, the members — most of us nonprofessionals — read papers in virology and immunology. At the same time, we tutored ourselves on the workings of the N.I.H. and the F.D.A. On the activist side, we went to Washington and demanded action.
Our work had a lot to do with the protease inhibitor drugs coming on line in 1995. They transformed AIDS into a manageable disease for those with access to health care.
Are there lessons in your experience for today?
As with H.I.V.-AIDS, the current opioid epidemic impacts a marginalized corner of society — needle-sharing drug users.
The toll has been devastating. From overdoses alone, the National Institute on Drug Abuse reports 47,600 deaths in 2017. These people had friends and relatives who loved them. They need to make their voices heard and to get policy changes.
Ironically, this epidemic has an H.I.V. component. When people inject the drug and share needles, as opioid users often do, the chances for transmission of hepatitis C and H.I.V. are high.
What policy changes would slow the death rate?
We know what to do about opioids. Dayton, Ohio, used to have one of the worst overdose rates the country. They cut it in half. How? They did it by providing naloxone to first responders, which reduced overdose fatalities. They did it by having a clean-needle program, so that drug users stopped sharing needles. They did expanding access to methadone to treat addiction.
By contrast, Scott County in Southern Indiana is a place where the state authorities failed to act decisively. In 2008, public health officials began to discern the first signs of opioid abuse. By 2015, they had 215 cases of H.I.V. in Scott County.
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My colleague Forrest Crawford and I wondered if this could have been prevented. The C.D.C. had data showing when individuals in Scott County were infected and who their contacts were. Using that, we made a computer simulation where one can, essentially, run the epidemic back in time and see what might have been.
Our model shows that if they just tested people for H.I.V. in 2011 and 2013, you could have blunted or possibly even avoided the epidemic altogether.
Didn’t the state eventually institute a needle exchange program?
Yes. In the spring of 2015. But it was too little, too late. A lot of the infections had already happened — something like 150 diagnosed infections. To stop a potential epidemic, governments need to step in early and aggressively.
With epidemics, the objective should not be to fight the last battle over again, but to learn from it. The C.D.C. says that there are 220 counties currently at risk for H.I.V. outbreaks. They don’t have to become Scott County.
There was recent report of a man in London cured of AIDS with a stem cell transplant. Is this important?
We can prevent H.I.V. with everything we have now — we just don’t do it. One guy getting cured in London, it’s interesting scientifically. But the real lessons involve everything we’ve just discussed.
You received your doctorate only two years ago. What was it like to attend university as a 44-year-old?
I enjoyed it. I had dropped out of Tufts in the 1980s. With all that was going on, I wasn’t interested in Russian literature.
When I enrolled at Yale in 2008, I wanted to gain skills to be more effective. I had worked as an organizer around AIDS issues for almost 30 years and had come to feel that activism alone wasn’t enough. I wanted to marry activism to science.
With that kind of motivation, I finished my bachelor’s and my doctorate in nine years. The credentials would help me be more effective in a battle that has consumed my adult life.
When I think about it: AIDS could have killed me. It killed so many friends. Instead, it gave me a vocation and made me who I am.
