A virus infecting almost only gay men at first. Scrambling for scarce medicine. Fears of renewed stigma among people already stung with marginalization.
In Fire Island’s gay communities as elsewhere in so-called gayborhoods across the United States, the specter of the AIDS crisis of the 1980s and 1990s — and the establishment’s indifferent response early on — looms over the monkeypox outbreak, say activists, epidemiologists, residents and those at greatest risk of infection: men who have sex with men.
“The trauma of the AIDS crisis is now part of our community’s DNA, and we’re determined not to allow our government to neglect and fail us again,” said Erik Bottcher, a New York City councilman whose district includes several gayborhoods in Manhattan, such as Chelsea and Hell’s Kitchen, with a disproportionate share of monkeypox cases.
That painful history was cited repeatedly by local, state and federal health officials at the announcement earlier this month that Suffolk County, home to Fire Island, is getting more vials of the scarce monkeypox vaccine than anywhere else in New York besides the city. As of Friday, New York City residents made up 94% of the state’s 490 confirmed cases. Four Suffolk residents have tested positive as have three from Nassau County.
Vaccine first to Fire Island
Concern over the potential for the virus on Fire Island was explicitly cited by the state Health Department in explaining the vaccine’s outsize allocation.
So it is in Cherry Grove and the Pines — two historically gay communities, just south of Sayville, on Fire Island, that for nearly a century have drawn residents and day-trippers from New York City — where Suffolk’s initial vaccinations are being given. As in the city, online appointments — the only way to get the shot — booked up almost immediately.
Both HIV and monkeypox are typically transmitted by intimate contact — with HIV, sexually (as well as by blood); and with monkeypox, by prolonged contact with lesions (that may be in hard- to-see places) or extended, close face-to-face exposure.
With both viruses, there have been worries about stigma for gay men.
There are key differences, however, between HIV, the virus that causes AIDS, and monkeypox. HIV is incurable and, if left untreated, is almost always fatal as it wrecks the immune system. Monkeypox is rarely fatal and generally goes away within weeks but causes painful lesions and flu-like symptoms.
AIDS was mystery at first
And, while monkeypox was first identified more than 50 years ago in humans and is endemic in central and west Africa, what would come to be abbreviated HIV and AIDS emerged, in 1981, as a mysterious illness that took years to fully understand.
The government's response — or lack of it — has long been criticized by gay activists. Anti-HIV drugs took too long or were too pricey to get to those who needed them. The White House press secretary openly made fun of people with the disease. It was years before the president would first utter the word "AIDS."
By 1990, more than 100,000 people nationwide had died, according to the CDC.
On Fire Island, HIV hit disproportionately and hard.
What was causing the purplish spots that turned out to be Kaposi sarcoma, a telltale sign of the disease, appearing on the bodies and faces of young men? Why were so many getting suddenly so sick and perishing?
“As silly as it sounds, we didn’t know if it was something in the water, or something in Cherry Grove that was causing this, because there was no education about the disease," said longtime Fire Island resident Susan Kravitz, 78, of Roslyn Heights. "It was a scary time.”
Hundreds of Fire Island residents would die of AIDS — and probably thousands more day-trippers, said Thom Hansen, 68, a longtime gay activist there. Among the dead: designer Perry Ellis and actor Rock Hudson, both denizens of the Pines.
According to the book “Cherry Grove, Fire Island: Sixty Years in America’s First Gay and Lesbian Town,” which was published during the AIDS crisis: “It has been understandably hard for gay men to deal with the fact that disease and death were attacking them through the very sexual activities that were central to their sense of self, their capacity to love, and their community.”
Hansen, who first went to Fire Island in 1974 and has summered there ever since, said: “Once they got off the boat, the world was someplace else, and reality didn’t exist anymore. So it was very difficult to get the message to the Fire Island community.”
But the community eventually came to recognize the existential threat posed by HIV and AIDS, and Fire Island became a place for fundraisers, support, care, commiseration, solace and memorials.
A bulletin board in Cherry Grove provided tips for safer sex — and a weekly list of the dead — recalled Kravitz, a retired dean of arts and humanities at Nassau Community College who rents at Cherry Grove with her wife.
Decades later, posters on Fire Island from the state Health Department during the monkeypox outbreak, which is believed to have begun in Europe in early May, say: “Protect your community and the people you party or play with. Know the signs and symptoms.”
Impact on sex practices mixed
At least 98% or 99% of cases in the current outbreak globally are estimated to be in men who have sex with men, according to the epidemiologist Dr. Jay Varma, although the local, state and federal governments aren’t disclosing the data.
The outbreak’s impact on sexual practices is mixed, depending who you ask.
Outside one of the vaccine clinics, Gabriel Aponte, 30, of the Bronx, was wheeling a suitcase, having gotten the shot to capstone a week with friends on Fire Island. He said the outbreak had caused him and his friends to think twice about certain sexual activities and to use more protection, like condoms.
“It’s a bigger awareness, and, I think, a bigger sense of, ‘Well, you know, I think it may not be the best idea to have that sort of behavior, to have that high-risk behavior as much as normally,’” he said, adding: “I don’t think they’re having sex with a lot of people outside of the social circle. I think, obviously, you’re not gonna trust strangers as much for a hookup than people that you know.”
But Hansen, who said he didn’t know anyone who had gotten monkeypox and worried that news of the disease would unfairly stigmatize Fire Island, isn’t so sure the outbreak is changing people's practices.
“I’ll bet you anything, a dime on a dollar, that it didn’t affect anybody,” he said. “I don’t think the impact of monkeypox has really sunk in anywhere.”
To be eligible for the vaccine, state-set criteria include those who have been exposed to monkeypox in the previous two weeks, as well as men who have had recently had sex with multiple, or anonymous, male sex partners, or who are otherwise at risk.
Steven Sandoval, 59, and Greg McMullan, 64, who have been together for 31 years and are in an open relationship, both got the vaccine Thursday morning in Cherry Grove, where the couple lives seasonally.
Sandoval, who said he got the shot "just to be cautious" and considered it his "civic duty," happened to be wearing a T-shirt bearing the work of pop artist Keith Haring, who spent the last years of his life as an AIDS activist before dying of the disease in 1990 at age 31.