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By Benjamin Ryan (NBS News)
Men who have sex with men comprise the vast majority of monkeypox cases in this unprecedented outbreak. Eighteen of them talked to NBC News about their experiences
Even as Covid-19 restrictions have loosened, for many gay men, an uninvited guest called monkeypox has threatened to spoil long-anticipated festivities.
Of the 6,924 confirmed monkeypox cases in the global outbreak, the vast majority have occurred among gay, bisexual and other men who have sex with men, or MSM, various health authorities report. Skin-to-skin contact during sex, experts assert, has likely been the primary driver of the virus’s global spread thus far.
Epidemiologists have stressed that monkeypox can still transmit among other groups of people, although the risk to non-MSM at this time does remain low.
Monkeypox has tended to present relatively mildly during this outbreak and has caused no deaths outside of the 11 African nations in which the virus has become endemic since it was discovered in 1970. Nevertheless, 18 gay men who contracted monkeypox told NBC News how it can cause unsightly and in some cases debilitatingly painful skin lesions — and has left them stuck glumly inside.
“The thought of a full three-week quarantine is pretty scary,” said John, 32, a New York City tech worker who believes he contracted monkeypox from a guy he hooked up with during a recent trip to Los Angeles for the city’s Pride events. “I’m just feeling disappointed and bummed out. It was a bummer to miss celebrating Pride” in New York.
John is among the swiftly expanding group of 560 U.S. residents diagnosed with monkeypox thus far — a figure experts believe is a vast undercount of the true case number, given woefully insufficient testing. California, New York, Illinois and Florida are the states with the highest numbers of confirmed cases.
Some of the men, like John, who shared their stories about having monkeypox with NBC News asked to only use their first names to protect their medical privacy. Most of the men interviewed expressed a strong sense of duty to draw attention to this new pathogen spreading so concerningly within their community. They also hope to combat stigma against those who contract the virus by giving it a human face.
“I feel like this is something that’s about to hit pretty hard,” John said. “It’s on us to look after our own.”
A worldwide outbreak likely fueled by sexual contact and travel
Epidemiologists believe they have traced the global spread of monkeypox to midspring gatherings of gay men in Western Europe. These parties drew many men from other cities, some of whom then apparently carried the virus back home. The Centers for Disease Control and Prevention reported last month that of the first 17 U.S. cases, 16 were in men who have sex with men, and 14 were in people who between them had traveled to 11 different countries during the three weeks before their symptoms began.
Nearly all the men who spoke with NBC News about having monkeypox said they were fairly certain they could trace their infections back to sexual encounters. Quite a few traveled during the weeks before developing signs of the infection.
Justin, 38, said after returning home May 18 from a two-week European vacation, he became the 14th person in the U.S. and the second in New York City to be diagnosed with monkeypox. He said his case started with a bad fever, which along with symptoms such as swollen lymph nodes, headache, body aches, chills and exhaustion are common monkeypox signs. Soon after, the telltale lesions crept across his body.
Monkeypox typically has an incubation period of about six to 13 days, but this stretch of time between exposure to the virus and the emergence of symptoms can last as long as three weeks. Researchers have not studied whether the virus transmits asymptomatically; at least in theory, it might, experts say. The period of active lesions, when the virus is most certainly contagious, lasts about two to four weeks, according to the CDC.
Jeff, who’s in his mid-30s and is a university administrator in a mid-Atlantic state, spent a couple of weeks traveling through Europe through early June. He made stops in London, Paris, Amsterdam and Berlin, having sex with multiple partners along the way, he said, including in a bathhouse and a sex club in the German capital.
“There’s hundreds of men in this club,” Jeff said, recalling considerable skin-to-skin contact between patrons. “Obviously, no one’s coming down to wipe down the sling.”
Anne Rimoin, an epidemiologist at the UCLA Fielding School of Public Health and a leading monkeypox expert, said in reference to the sharing of sex slings, “Given the risk of transmission by fomites — contaminated objects — it’s theoretically possible for monkeypox to be transmitted in this manner.”
Nine days after returning home, Jeff came down with an intense fever and headache.
Peter, 28, said he went to a sex party in a house on Fire Island, a gay beach enclave about two hours from New York City, on June 14 and that out of approximately 15 attendees, he and at least six other men now have monkeypox.
“I’m pretty sure I know who I got it from,” said Peter, who works in tech in a Rocky Mountain region city, but has been marooned in Seattle in isolation since receiving his monkeypox diagnosis during what he had hoped would be a fun visit to attend the city’s Pride festivities. “Thinking back on it,” he said, “I do remember there being a little hard spot” on that particular man’s penis.
Peter said gay men should be vigilant looking for signs of monkeypox on their bodies and those of their sex partners.
“Don’t be afraid to say something,” he said.
Dealing with a chaotic public health system
Many of the men with monkeypox reported having had extraordinarily frustrating experiences, plagued with dead ends and delays, as they sought to get tested for the virus and work with public health officials to provide names of their recent close contacts. Some saw the clock run out for them or their partners as they attempted to secure scarce doses of the Jynneos vaccine for monkeypox, which research suggests may prevent symptoms of the disease if given within four days of exposure and at least reduce symptoms if given within five to 14 days. Using the vaccine in this way is known as post-exposure prophylaxis, or PEP.
Mark Hall, 41, a New York nurse practitioner, said he developed his first lesion on June 24 — the Friday of the city’s blockbuster Pride weekend — but thought it was an ingrown hair and didn’t realize that it was probably monkeypox until two days later, after already having attended several Pride events. Despite his urgent and determined efforts beginning that Sunday, he wasn’t able to get tested, receive confirmation that he had the virus and finally start providing names to a health department contact tracer until Thursday, he said.
Given the vaccine scarcity that is hobbling the nation’s response to the outbreak, only 40% of Hall’s close contacts, he reported, were vaccinated by July 5 and another 6% have vaccination appointments booked for this week. But by now, much of the 14-day window for the vaccine’s use as PEP had closed for his unvaccinated contacts. One of these men already has a presumed case of the virus.
Like Covid-19 and HIV before it, monkeypox has established an epicenter in New York City, which as of Tuesday had 111 confirmed cases, up from 87 on Friday.