America Responds to Monkeypox: Learning from the History of HIV/AIDS

Dan Royles

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As known cases of monkeypox in the United States, the vast majority of which are among gay and bisexual men, continue to increase, an argument is raging – in the news media and on Twitter – over how to talk to the public about the disease. Some want to emphasize that “everyone is at risk,” which is technically true. Others argue that because gay and bisexual men are the ones getting sick with monkeypox right now, they need to be the focus of messages about the disease.

People in both camps point to the history of HIV/AIDS to bolster their claims, and both raise valid concerns. Those in the “everyone is at risk” camp are concerned about sexual freedom and the real threat of right-wing attacks on queer people. For example, Alejandra Caraballo, a clinical instructor at Harvard Law School, warned on Twitter that a focus on gay men by health officials is fueling anti-gay rhetoric on the far right. “Given the climate in the US,” she wrote, “this will lead to a dark place with rampant homophobia resulting from this. We have learned nothing from HIV/AIDS.”

Today, the World Health Organization declared monkeypox a health emergency and emphasized the focus on men who have sex with men. Given the climate in the US, this will lead to a dark place with rampant homophobia resulting from this. We have learned nothing from HIV/AIDS.

— Alejandra Caraballo (@Esqueer_) July 23, 2022

Those in the opposing camp argue that public health officials have learned from HIV/AIDS, but that they’ve learned the wrong lessons. This group includes some gay men, such as science reporter Benjamin Ryan and epidemic disease historian Jim Downs. The history of HIV/AIDS looms large for this group as well. Ryan compares official messaging on monkeypox to the federal government’s America Responds to AIDS campaign of the late 1980s, which informed Americans that “anyone can get the AIDS virus.” This slogan, he argues, “belied the truth about the relative risk of HIV, which in Western nations has always predominantly affected gay and bisexual men.”

Again, neither side is wrong, strictly speaking. AIDS researchers initially contribtued to public homophobia by referring to AIDS as “gay-related immune deficiency,” as though the very fact of gay men’s sexual identity was responsible for the epidemic, and the designation of Haitians as an additional “risk group” fueled a wave of discrimination and violence against them. And campaigns like America Responds to AIDS, which launched in 1987, six years after doctors first recognized the disease in communities of gay men, suggested that HIV was only a problem insofar as it threatened straight people. In that light, saying that “everyone is at risk” can feel like a well-intentioned attempt to paper over the very real effect that monkeypox is having on gay and bisexual men.

But the discussion about whether to talk about monkeypox in terms of gay and bisexual men’s risk ignores racial inequities within gay communities. In fact, one of the most important lessons to learn from the history of HIV/AIDS is that we can’t treat gay and bisexual men like a monolith. Instead, we need messages, along with prevention and treatment programs, that are created with Black and brown gay and bisexual men in mind if we’re going to stop monkeypox from becoming endemic in communities that are already vulnerable to epidemic disease.

Neither messages about universal risk nor those directed to gay and bisexual men as a whole are likely to stop the spread of monkeypox among the Black and brown gay and bisexual men who, if the history of HIV/AIDS is any guide, will bear the brunt of the epidemic in this country. Gay and bisexual men, Black Americans, and Latinx people each make up a disproportionate number of people newly infected with HIV, and this is especially true for those at the intersection of these identities. Dr. Oni Blackstock recently asked whether current approaches to monkeypox education are reaching “Black and brown, queer, and trans people.” Looking at the history of HIV/AIDS helps us to understand why they may not be, and how we design a more equitable monkeypox response going forward.

In the early years of the AIDS epidemic in the United States, grassroots organizations such as the San Francisco AIDS Foundation and Gay Men’s Health Crisis formed to confront the new disease. These were frequently based in communities of gay men that were largely segregated. Gay men of color, and especially Black gay men, frequently reported being denied entry at gay bars, being treated with contempt and suspicion by white gay men, and being marginalized within organizations that claimed to represent gay interests.

This pattern of gay racism had deadly consequences in the emerging AIDS crisis. Gay white men became the face of the disease, both in the media and in the organizations that led the fight against AIDS, which fueled the sense among Black and brown gay men that AIDS was a “white boy’s disease.” And when those early AIDS organizations did try to reach a more diverse audience, they found it difficult to cut through the mistrust that gay men of color had for their white counterparts. In contrast, AIDS organizations founded by and for Black and brown gay men were much more successful in reaching those same men, although those groups most often suffered from a lack of funding, which hampered their work.

Racism in gay communities – which hasn’t gone away – isn’t the sole cause of racial disparities in HIV infections, but it has made those disparities worse. It also shows that there is no singular gay community to which public health officials should be directing messages about monkeypox. Here we can take a lesson from recent failures in the fight against HIV. As Rich Juzwiak reports, pre-exposure prophylaxis (PrEP), a daily dose of medicine that keeps people at risk from contracting HIV, has failed to reach the Black and brown gay and bisexual men who would benefit from it the most. According to Louis Shackelford of the HIV Vaccine Trials Network, that’s because PrEP hasn’t been promoted in ways that reach Black communities. “PrEP implementation for a white community may just mean putting billboards up and letting people go to the doctor,” he told Juzwiak. “For a Black community, it may mean going to community centers and doing education in certain ways or giving presentations to certain community leaders so they can distribute the information to people that they’re connected to.”

We are already seeing inequities emerge in monkeypox prevention. Doses of the vaccine are hard to come by, and appointment slots get filled almost as soon as they’re made available. In some areas appointments have been available only during business hours or have been located in wealthy white gay neighborhoods, making access difficult for those who have inflexible work schedules or lack access to transportation. Even in neighborhoods like Harlem, where the majority of residents are people of color, most of those getting vaccinated are apparently white. Doses of TPOXX, a treatment for smallpox that is effective against monkeypox, are even harder to get, and access has largely been a function of having high-quality healthcare and being able to navigate a byzantine approvals process.

The deadly shortcomings of past approaches to HIV prevention and treatment are being reproduced – even amplified – in the response to monkeypox. And while making more doses of the vaccine available and increasing access to TPOXX are key, making sure those vaccines and treatments are equitably distributed is paramount.

So far this outbreak of monkeypox hasn’t killed anyone in the United States, but it is serious. Symptoms include lesions on the skin and mucous membranes, which can be excruciatingly painful. One man recalled, “I would literally scream out loud when I went to the bathroom.” Another described the associated pain as “someone poking your rectum with a hot fork, from the inside.” And in a country where over half of people are living paycheck to paycheck and where one in five workers has no paid sick leave – and most of those who do get an average of eight days off per year – how many can afford to take off from work for the two to four weeks it takes to recover?

Applying lessons from the history of HIV/AIDS to the fight against monkeypox is about much more than how we talk about who is at risk. That history tells us that monkeypox will hit Black and brown gay men much harder than other groups unless we take a targeted, deliberate approach to disease education, prevention, and treatment. This might mean funding minority AIDS organizations to educate Black and brown gay men about monkeypox, to answer questions and concerns about the vaccine that prevents it, and to help them get access to the drugs that are available to treat it.

Too often in our history, being healthy has been a privilege, and one reserved for the white and wealthy. To a large extent, that’s true of the history of HIV/AIDS in the United States. If we take the same approach to treating monkeypox, we’re going to get a similar result, one that shows the inhumanity at the heart of our healthcare system.

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Featured image caption: Colorized transmission electron micrograph of monkeypox virus particles (gold) cultivated and purified from cell culture. (Courtesy NIAID/Flickr)