Eric Sawyer feels a familiar fear. In the gay hamlet of Fire Island Pines, where he owns a bungalow, men have been swapping gossip about ghastly symptoms, scanning each other for any blemish, scrounging for medical interventions in short supply. For Sawyer, 68, this type of anxiety is not an artifact but a scar on his heart.
“While monkeypox is not deadly, just like with HIV there are myriad horror stories,” says Sawyer, a longtime activist who in 1987 was on the ground floor of ACT UP, the collective committed to ending the AIDS epidemic. “It opens up a lot of the raw wounds, brings back interrupted grieving from having so many friends die.”
Since May 17, nearly 5,200 cases of monkeypox have been identified in the United States, and none have been fatal; an overwhelming majority of those infected worldwide have been men who have sex with men, a demographic whose broad and dense sexual networks are a conduit for a virus that spreads through close, often intimate, physical contact.
The scourge may not be as serious as HIV, or the coronavirus still causing covid-19, but monkeypox has come along at a time when gay people in America are already feeling stressed and vulnerable. Sawyer thinks about the recent surge of homophobia, including anti-gay legislation at the state level and a spike in threats and attacks on LGBTQ people. A social symptom of monkeypox is fear that the country is headed for a time warp; in the 1980s, AIDS was first mislabeled in the media as “gay-related immune deficiency,” and the gay community suffered not just from illness but renewed ostracization.
“I’m afraid that a major outbreak in the gay community of something like monkeypox is going to exacerbate the direct, planned attacks on our community,” Sawyer says.
The community, though, is more visible, powerful, accepted and prepared than 40 years ago, thanks to the work of people such as Sawyer, who says he helped to wrangle vaccinations for 2,000 visitors to the Pines over three weeks in July. Out of the AIDS crisis, the gay community helped to fashion protocols, networks and models of pandemic response that have been used to address covid-19, and now monkeypox.
“There is a direct line of inheritance, in terms of the culture of what we’re doing,” says Keletso Makofane, 35, a social network epidemiologist who is creating a rapid queer-led study of sexual networks and monkeypox symptoms in New York City to guide distribution of the limited vaccine supply. ACT UP is still an important hub for mobilizing people, he says, and queer people are holding weekly meetings, dividing into committees and planning for collective action to respond to monkeypox.
“That vocabulary comes from ACT UP and the intervening movements like Occupy that are reverberating,” says Makofane, who works mainly out of his ninth-floor apartment in Harlem. “We’re definitely not creating structures from scratch.”
Monkeypox is a very different virus than HIV, and 2022 is light-years from 1981. But there is a spiritual echo in the current outbreak, “a cultural reflexive memory that exists even outside people who lived it the first time around,” says Demetre Daskalakis, 48, director of the Centers for Disease Control and Prevention’s division of HIV/AIDS prevention.
There’s the government’s response, which has been slow and scattered, according to public health experts who criticized the initial lack of clear communication about testing, symptoms and who was most at risk. There’s the stigma foisted on the community that’s first impacted. There’s the simmering rage during rallies, at public health agencies, toward anyone who might weaponize the outbreak. And the skin lesions! Kaposi’s sarcoma was a signal of near-certain death in the 1980s, and now the pustules of monkeypox are a harbinger of searing pain, however temporary and non-deadly.
The stakes are much lower, mortality-wise, but the agita is high. Every heat rash is suspect. Every ingrown hair is a taunt. Recently gay men have been heckled on the street as carriers of disease. Text messages about known exposures — routine communication between gay men about common sexually transmitted infections — now have a more foreboding aura. The LGBTQ community is inspecting every health guidance, every off-handed tweet, for a trace of scolding or sex-shaming. Fresh adjectives and metaphors are being depleted to describe the pain that can accompany an infection (“visceral,” “excruciating,” “knives,” “curling iron”).
“I think we’re all exhausted,” says Nicholas Diamond, 29, manager of editorial services at the Elizabeth Glaser Pediatric AIDS Foundation (and husband to Makofane). “We just were maybe seeing the light at the end of the tunnel of the covid-19 pandemic, and looking forward to a slutty summer, and we now have to deal with monkeypox and a government that really fumbled its response without learning the lessons of covid-19. So everyone’s tired. And it is hard to talk about anything when you’re worried if your last hookup was going to get you sick, or last visit to the bar is going to get you sick. And I have to wonder if this is what our community was thinking about in 1981, too.”
There is something spooky about sitting in a folding chair in 2022, surrounded by other gay men in folding chairs, waiting to be vaccinated by health-care workers who wear personal protective equipment and immediately wipe down each vacated chair with disinfectant. “Throwback moments,” is how Amanda Cary, manager for the gay men’s sexual health clinic at Whitman-Walker in D.C., describes it — even though, at age 38, she didn’t personally experience the original moments.
On a recent Thursday, Cary told her first patient, whom she was testing for monkeypox, that a testing laboratory initially forbade its phlebotomists from drawing blood from people with suspected or confirmed cases. Cary was also wearing full PPE, per CDC guidelines.
“The patient was like, ‘Wow, it’s just like the ’80s,’ ” says Cary, noting that the patient was also too young to have experienced the height of the crisis. “It’s stigmatizing. And also it’s kind of scary, especially in the beginning. With the first couple patients, I expressed a lot of reassurance: ‘I’m wearing a crazy outfit, but this is not going to kill you. You’re going to get over this. It’s going to go away on its own. We have the treatment available.’ ”
A D.C.-area epidemiologist in his 30s, who contracted monkeypox in mid-June, endured five days of fever and night sweats, swollen lymph nodes and groin, and lesions on the genitals and rectum. A “deep, visceral pain.”
“And there’s that trigger of the stigma and shame,” says the epidemiologist, who spoke on the condition of anonymity because of concern about that stigma. “‘Oh, if you got HIV, you did it in a very slutty way,’ or, ‘If you got monkeypox, you got it in a very slutty way.’ The mental health, disclosure and stigma aspects are all tied together. How do we move past that?”
One way is to remember a key lesson of the AIDS crisis: to educate communities rather than issue categorical prohibitions that increase stigma, says Daskalakis of the CDC, which has disseminated guidance for safer sex and socializing through social networks and influencers.
“Absolutism tends to close off how people think,” Daskalakis says. “So really thinking about a harm-reduction strategy — where you are giving people the knowledge that they need to make informed choices — is the way we win.”
Gay men have had to be more frank with each other, at the risk of seeming preachy or alienating. On July 19, AIDS activist Mark S. King wrote an essay, titled, “Monkeypox is a gay thing. We must say it.”
“Will there be stigma and judgments and homophobia? Of course. And we’ll have to deal with that,” King wrote. “But that doesn’t mean we bury crucial facts in vague, evasive messaging.”
Sex positivity defines modern gay life, sure, but so does awareness, prevention and treatment of disease. Nicholas Diamond helped to fashion a tip sheet last month, titled, “Six Ways We Can Have Safer Sex in the Time of Monkeypox.”
“Girls, we hate to say it, but it might be time to hang up the group sex and saunas until we all get shots one and two of the vaccine,” Diamond wrote with two of his collaborators in the rapid survey of monkeypox in New York, where the mayor on Monday declared a state of emergency due to the outbreak. “This is temporary and out of a love for group sex and those who enjoy it.”
The World Health Organization followed last week by saying, essentially: Guys, cool it a little.
“For men who have sex with men, this includes, for the moment, reducing your number of sexual partners” and “reconsidering sex with new partners,” said Tedros Adhanom Ghebreyesus, director general of the WHO.
“Something a lot of people don’t want to say out loud is: Gay men have more sexual partners, on average,” says Steven W. Thrasher, whose new book “The Viral Underclass: The Human Toll When Inequality and Disease Collide” traces the interplay between systemic injustice and vulnerability to disease. “But there’s a responsibility that goes hand in hand with the sexual dimension of our lives. It’s not just a free-for-all orgy.”
The community is sharing knowledge, pushing for government action and promoting harm reduction. A queer kink event Friday in San Francisco advertised temperature checks, 60 percent capacity, and a “consent and wellness check-in” at the door, where colored-coded wristbands were distributed based on an attendee’s personal space preferences. On July 25, the Washington Blade hosted a monkeypox town hall in person at the Eaton, on K Street NW, where about 50 LGBTQ citizens and public health experts exchanged advice, observations and concerns. The Blade’s counterpart in Los Angeles followed July 27 with its own town hall, which featured a resident named Matt Ford, who was one of the first American men to detail, on social media, his experience with this outbreak.
Bearing this kind of witness fights stigma and makes the problem real for people, said L.A. panelist Dan Wohlfeiler. It also harks back to that earlier time.
“In 1983 I saw a young man named Mark Feldman get up in front of a crowd about this size in a San Francisco synagogue and he talked about having HIV,” said Wohlfeiler, who has worked in HIV and STI prevention for decades. “And he said, ‘Anybody that wants to come to the front of the room and see my lesions, you can come and do that.’ And it was an incredibly powerful moment. And now we’ve got Matt and others coming forward, and talking about their experience and their symptoms — which thankfully aren’t as serious but are clearly painful — and I think we really owe Matt and others a big thank-you.”
But all this talk about whether monkeypox should be described as “sexually transmitted” or “a gay thing” — “all of that is happening solely because we are caught off guard, because our government failed to respond proactively,” says Kenyon Farrow, a public health activist in the Cleveland area.
As Thrasher writes in his book, “individualized shame narratives not only work to shift the blame from the state and society to the individual, but also isolate individuals, both through policy and socially.”
There are bigger lessons here, in this current outbreak, like there were bigger lessons during earlier ones — lessons about persistent homophobia, structural racism and global inequity that fostered inattention to previous monkeypox outbreaks in Central and West Africa.
“The most obvious conversation we should be having — and it should be clear to everybody from the last two years of covid — is that our public health system is failing us, right?” says Farrow, who is managing director of advocacy and organizing for PrEP4All, an organization dedicated to increasing access to HIV medication. “And we had better start thinking about how to reimagine public health in the United States, and globally, if we want any chance of not constantly dealing with a rolling set of infectious-disease crises.”