All Epidemics Are Social

In the 1980s, as the AIDS virus tore through queer and other marginalized communities in the United States while the Reagan administration looked on, outraged community members organized a historic social movement to fight for the lives of people with AIDS and their loved ones. As the Covid-19 pandemic devastates the country and the globe today—with people of color, low-income and care workers, prisoners, and the unhoused disproportionately affected—veteran AIDS activists have directed their experience toward a new fight for health and safety in a terrifying political landscape.

Some of the infrastructure currently bolstering the treatment of Covid-19 exists as a result of the earlier crisis, from community-based clinics and service providers to—arguably—the widely-praised work of longtime National Institute of Allergy and Infectious Diseases director Anthony Fauci, who was lambasted by AIDS activists in the ’80s for federal inaction, but ultimately came to work with them on issues like expanding access to clinical drug trials. (Larry Kramer—the indefatigable playwright and founding member of the militant AIDS activist group ACT UP, who passed away yesterday at the age of 84—was a vocal critic of Fauci who later became a friend.)

Even beyond such direct lineages, the historical memory of those who lived through, organized during, and documented the AIDS crisis offers an invaluable resource in the daunting struggle for a just response to the current health emergency. I spoke with five longtime participants in the fight against AIDS: Ivy Arce, an activist in groups like ACT UP whose current work focuses on affordable HIV treatment for women; David France, author and director of the award-winning book and film How to Survive a Plague; Mark Harrington, executive director of the Treatment Action Group, a think tank that works toward the eradication of HIV and other communicable diseases; Debra Levine, an AIDS organizer who later documented the work of groups like ACT UP as a theater scholar at Harvard University; and Kendall Thomas, a founding member of ACT UP’s people of color affinity group and a law professor at Columbia University. This interview has been condensed and edited for clarity.

Ari Brostoff: How has this moment felt to you all, in light of your experiences of the AIDS epidemic? What has reminded you of that earlier moment, or felt very different from it?

Debra Levine: I woke up in the middle of the night at the end of February and, without consulting anyone, just kind of went into action. It was instinctive, I just felt like I knew what to do. I started doing things way before my university did: I canceled the student trip to Poland, I wrote to the faculty in my department telling them about hand-washing procedures, contactless classes, things like that. At the time, I was paranoid that I was overreacting—that my old experience was informing this experience without my thinking about the differences. 

Mark Harrington: After the HIV outbreak was discovered in 1981, you felt this slowly-rising-tide feeling and then suddenly, “Oh, I’m at sea.” This only took four months to happen with the new pandemic; it’s like a whole period of the ’80s rolled up into a four-month stretch. And unlike with HIV—when people were dying all around us, and most of the city and country didn’t notice—everyone seems to be aware of this. Also, the scientific tools that we have now to detect outbreaks and respond to them are completely different from what was available in the early ’80s. It took three weeks from hearing about Covid-19 to it being genetically sequenced. Meanwhile, the government is, if anything, even more incompetent.

Kendall Thomas: It’s understandable for those of us who are AIDS activists to use that experience as a point of reference, but there are so many ways in which what we’re going through right now doesn’t remind me of anything else. During the HIV epidemic, there were many people who took comfort in the fact that HIV/AIDS was not a disease that struck what was referred to as “the general public.” There’s no such immunity, imagined or otherwise, available here. 

But there are also resemblances that remind us of the extent to which all epidemics are not simply epidemiological, but also social. Like HIV/AIDS, in the US this virus has disproportionately brought devastating harm on communities of color and along the inequality line. Poverty and social marginalization are markers of this pandemic in the same way that they were with HIV, even though at the time many—including some in HIV/AIDS activism—were reluctant to admit it. Globally, we can expect the impact of this virus to be much greater in the Global South than it is in the Global North.

David France: I’m struck by the parallels between the Trump administration and the Reagan administration, and how both were so bent upon starving the public health system. There’s an anti-science ideology in both cases. In Reagan’s case, he added to it a particularly deadly form of Christianity. 

AB: Trump’s own medical recommendations, like self-treatment with hydroxychloroquine, are obviously toxic, but part of the reason they are so dangerous is that they’re being offered in this vacuum of a functioning healthcare system. This creates a complicated tension: on the one hand, there’s a need for community-based medical planning outside the medical establishment—like the way that people taking medical knowledge into their own hands was an important part of AIDS organizing—and at the same time, there’s the need to make sure DIY healthcare measures are making people safer instead of less safe. 

Ivy Arce: People don’t take the time to look into the science, or they feel like, “It’s too much information. I don’t want to deal with this.” I did not have the luxury to say that. [AIDS activists] and my HIV doctors spent time helping me digest medical data that needed to be [made legible for me] to have a chance to survive. People carved out a space for me when I didn’t have the depth of epidemiological knowledge required to be on the HIV Planning Council of New York. One needs to align themselves with science, with the experts in the field, even if the experts are still figuring it out. 

AB: Our national politics today are being shaped by debates over how insurance could be made accessible to more people. Does that feel relatively novel, or was that already present in the framing of AIDS activism?

DL: I think the framing of insurance is a narrow framing. You have to think about all the factors that could lead to a person not seeking treatment—fearing that they would lose their job, that a doctor would get kicked out of their office—to get a broader sense of how much [access to healthcare was limited] by the stigma of the AIDS crisis. Universal health care, in this broad sense, was a goal of ACT UP from the very beginning; you can see it in the organization’s original working document. 

KT: ACT UP gave the country a social movement that said, “Healthcare is a right.” At the time, that was in many ways a novel claim to be making. What we’ve seen since the ’80s is both a hollowing out of our healthcare system and the political capture of the way we’re able to think and talk about it. I hope we seize the opportunity presented by this extraordinary historical moment to build on the idea that healthcare is a fundamental human right, even as we recognize the limits of that idea. This epidemic has driven home the extent to which the federal government is engaged in the most cynical biopolitical calculations around whose lives are expendable and whose are not. Political mobilization around the right to healthcare can help create a coalition that challenges [that calculus].

AB: There’s an intense anti-urban sentiment being voiced on the right these days; you see it in op-eds with headlines like, “We Cannot Destroy the Country for the Sake of New York City” (and playing out less directly in the Republican leadership’s refusal to extend necessary aid to “blue states”). This language in turn seems to stand in for many other things: urban centers signify people of color, queer people, immigrants. But that’s getting signified through this discourse around the city in a way that maybe hadn’t been happening as explicitly in the past few decades, in an era of gentrification and intensified policing. I’m wondering if that assessment resonates with you, as people who witnessed the demonization of urban life during the AIDS crisis.

KT: I do think there’s something significant behind this idea that New York is claiming resources to which it is not entitled. It’s a pitting of the city against the country, and the orchestration of a regional culture war that is as old as the republic. But the fact of the matter is, it’s a diversion. This is clear particularly as we’re starting to see what’s going on in places that consist principally of rural communities. Look at Mississippi: 54% of people in Mississippi who have tested positive for Covid-19 are black, 30% are white. 52% of the deaths that are attributed to Covid in the state are among African American people. I would imagine that it is just as true in these largely rural communities as it is in New York that a disproportionately high percentage of the frontline workers in this epidemic are women and people of color. 

IA: I live at the corner of little Italy and Chinatown. Covid-19 has hit my community hard; many have gone underground. A lot of the older people have gathered together and they’re not going to get tested or admit that they are sick or seek treatment. The stigma around Covid-19 first breaking out in China has made the community unable to cope, and the direct, sometimes physical, attacks [on people of Asian descent] have made the situation far worse. This of course reminds me of the early years of AIDS, which affected a community that was not wanted.

AB: What do you want people to know going forward that you have learned over the years as AIDS activists? 

DF: I’ve been a journalist and historian through all of this, and having spent as much time as I have looking back at the AIDS pandemic, I really thought nothing could reveal more ugliness about American society and democracy and capitalism than AIDS could. I’m so surprised at how wrong I was. If we don’t address these issues then I think we really are at the end of whatever this particular American version of capitalism is. 

MH: This time reminds me of several periods in ACT UP’s history where we were just battering ourselves at different institutions, sometimes making what seemed like a little progress, and then realizing [we hadn’t gotten anywhere]. There’s an instinct that we learned during the earlier pandemic: you just try to get together with other people to make it happen. There’s a feeling of great joy in that collaboration. But after many attempts to get anything done, you get this sense of learned futility or learned hopelessness. 

IA: The issue of creating not just leadership but ongoing participation is really important. This year I went to Taiwan to talk about hepatitis and [the HIV prevention drug] PrEP, and I was so stunned to find that people didn’t know about ACT UP when they are benefitting from the medications that many of us put our bodies on the line for. A lot of the raw materials for these medications come from places like China and Taiwan, and these countries that have the raw materials should be ignited by activism to shape the production and the cost of medication. The [power wielded by] the US pharmaceutical industry can change if other countries have more of a stake in producing the vaccine or medication that will end AIDS.  

KT: There’s a recognition right now by privileged people that their privilege will not protect them, and it’s important for us to make use of this. This was also a feature of HIV, when there were all of these mostly white, mostly upper-middle-class gay men who were forced by HIV to see just how contingent and precarious their lives of privilege were. It radicalized a lot of these men. This may be such a moment. But at the same time: What would it mean to start not from the point of view of the privileged, who have suddenly been forced to see that the emperor has no clothes, but to see this pandemic through the eyes of the most vulnerable?