As officials, researchers and activists scramble to control an emerging monkeypox outbreak, many are doing so with another virus constantly wedged in the back of their minds: HIV.
The parallels between the two infections are limited but clear. Although the monkeypox strain now in circulation is infinitesimally milder than HIV — zero fatalities have been reported out of the more than 1,000 cases so far — it is another virus that emerged in sub-Saharan Africa and has popped up outside the continent largely in men who have sex with men.
“There are, you know, echoes,” said Chris Beyrer, director of the Duke Global Health Institute.
And they pose a similar tight-rope challenge for officials: How do you get tools and information about the disease to those who need it without wrongly implying that only that group is at risk, or publicly associating an unfamiliar disease with an already stigmatized community?
Fortunately, this time around, officials have a playbook to work from — one written and rewritten during the worst missteps of the AIDS crisis, as well as the collaborations that ultimately helped curtail the HIV epidemic and other outbreaks.
“It’s a rock and a hard place that we’re used to,” said Demetre Daskalakis, director of the CDC’s division of HIV/AIDS prevention, told STAT.
The notion that HIV was a “gay plague” — a moniker unfortunately attached to the virus by the gay press, who were the first to cover the disease in 1981 — dogged the response to the disease from outset.
The virus was ignored by the mainstream press for years except when cases were reported in women, children or heterosexual men. The first time the Reagan administration was asked about it, his press secretary jeered: “I don’t have it, do you?” Funding levels remained a fraction, on a per death basis, of what they were for far smaller outbreaks like Legionnaire’s disease.
“By NIH budget calculations, the life of a gay man was worth about one quarter that of a member of the American Legion,” the journalist Randy Shilts concluded in “The Band Played On,” a history of the AIDS crisis.
As the first reports of this monkeypox outbreak spread, with articles talking about sexual transmission or a newscaster speaking luridly about “homosexual sex,” some activists and clinicians feared an 80s redux.
“The lead on a lot of articles was highlighting clusters of monkeypox happening in gay men,” said Boghuma K. Titanji, an infectious disease physician at Emory. “And that in itself just begins to imprint on sort of the mind of the general public, that this is not something that affects me.”
The risks would be significant. In addition to potentially fewer resources being devoted to the outbreak or symptomatic individuals being less likely to seek medical care, that perception could put LGBTQ people at direct risk, said Keletso Makofane, fellow at Harvard’s FXB Center for Health and Human Rights.
Makofane, who co-authored with Titanji an essay in PLOS Global Health titled “Monkeypox is Not a Gay Disease,” pointed to the rise in legislation criminalizing gender-affirming care for transgender people.
“The whole group, the LGBTQ group, is at a place where violence is not a remote threat,” said Makofane.
It could also create “a blind spot,” Makofane said, leaving clinics and hospitals unprepared to deal with an outbreak in other populations.
Early in the AIDS crisis, for instance, doctors reporting cases of neonatal HIV were largely dismissed. Daskalakis also pointed to an outbreak of drug-resistant bacteria that began in gay men over a decade ago before spreading among athletes and having its cruelest impact on prison inmates.
Monkeypox isn’t transmitted sexually but by close contact with the disease’s hallmark pustules. Experts have emphasized that, although it happened to latch onto this network, it could have easily latched onto other groups — say, athletes or college students on spring break.
“It could have been any network,” said Anne Rimoin, an epidemiologist at UCLA.
But officials can’t simply ignore that in the U.S. and Europe the virus is primarily spreading among gay and bisexual men. To stem the outbreak, officials need people who are most at-risk to be on watch for symptoms and to mitigate their risk.
“We don’t want to pretend that the cases described in Europe have not primarily been in men who have sex with men,” said Ken Mayer, medical research director of Fenway Health, an LGBTQ-focused clinic in Boston. “But we want to do it in a way that people feel educated or engaged but not stigmatized in a way that people would delay seeking care or ignore symptoms.”
Titanji points to a second danger of downplaying the heightened susceptibility of particular populations. In the 1990s and 2000s, she says, as officials recognized HIV was a wider threat, stigma around the disease diminished, but so did resources for people who genuinely needed them the most: African American and Latino gay and bisexual men, who continue to face the highest rates of HIV in the country.
It drove “the epidemic in Latino and African American men almost completely underground,“ said Titanji, an infectious disease physician and virologist, at Emory University, “Which is why they are experiencing a delayed epidemic.”
To walk that line, researchers and officials have worked closely with activists and community groups, another lesson of the AIDS epidemic, when groups such as ACT UP staged sit-ins and protests around Washington, D.C.
“It took years, it took people literally occupying the NIH — occupying the FDA, getting arrested — to get a seat at the table,” said Beyrer.
The CDC now includes many HIV specialists, including Director Rochelle Walensky, who has emphasized the broad public threat monkeypox poses. Her messaging is “pitch perfect,” said Gregg Gonsalves, a former ACT Up activist and now a professor at Yale, adding “it clearly is informed by her decade’s worth of experience in HIV AIDS care and policy.”
Although there have already been disagreements — most notably over the CDC’s centralized testing policy — the groups have largely worked in lockstep to try to educate the community, with the agency relying both on NGOs and commonly used apps like Grindr to reach people who might not tune into a Walensky press conference.
How to do that is not always clear. The HIV playbook calls for giving information about how people can protect themselves without focusing on their identity, but that leaves plenty of gray area.
Like the European CDC, a Fenway Health factsheet encourages men to not only check for symptoms but potentially have fewer sexual partners. But the CDC has refrained, focusing only on exposure, because “if you focus on the exposure and don’t go straight to identity, you’re going to be able to actually get the word out to the right people,” said Daskalakis.
Transmission is even trickier, especially as officials continue to piece together how the virus is spreading. Much of the messaging has focused on “close contact,” but after Covid-19 — where close contact meant simply standing near someone for 15 minutes — that could easily be misinterpreted, said Judith Auerbach, a professor of behavioral science at UC-San Francisco. But listing every possible type of contact might not be instructive.
She’d prefer a line saying “close contact, which can include sexual activity.” Peter Staley, a former ACT Up activist, wanted to be significantly more explicit. He said a debate broke out on a community conference call last week over whether or not to discuss anal sex, as reports are emerging that pustules are often found in the area of transmission.
At least one factsheet with images of genital sores has been made.
“I think we need to be specific,” Staley said. “But when you start getting that specific, you open bigger and bigger boxes of stigma.”
Conversely, some messaging might stigmatize people in Africa, where the virus is endemic and where it was first identified. The WHO was forced to change its monkeypox pictures, after advisors and African doctors pointed out that, despite a global outbreak, they were all of Black people.
Auerbach said she private messaged an LGBTQ group whose draft pamphlet implied the virus was imported from Africa, a reminder of the days when HIV was covered only if it affected heterosexuals.
“It’s just so easy to slip into that language, you don’t even realize,” she said.
Messaging will also have to be attuned to sub-groups within the LGBTQ population. Titanji said that officials in London and Belgium were quicker to respond than she can in Atlanta, where doctors and researchers are less engaged with the largely Black and Hispanic LGBTQ community, who are adversely impacted by the ongoing HIV epidemic and may also face racism and religious stigma.
“So when you think about monkeypox in these communities, you are adding something else to an already ongoing issue that is tied to stigma and racism and social determinants of health,” she said.
Gonsalves, the former ACT UP member, said he’d still like to see more information from certain community groups and companies that focus on the LGBTQ world. But like other activists, he said the response has represented everything they’ve learned over four decades — good enough, in fact, to trigger some bitter musings.
On a call last week between the White House, NIH, and CDC officials and representatives from around 70 community groups, Staley opened by thanking the administration for hosting the call. And then he pondered aloud.
“Imagine if the White House had convened to a similar group in 1981,” he said. “How different things might have been?”
For a moment, the line fell silent.
Helen Branswell contributed reporting