Even as scientists and health officials race to learn more about the mysterious monkeypox outbreak in the United States, one thing seems clear: Confusion and misinformation about the virus are spreading faster than the infectious disease itself.
Most cases detected in the current outbreak in the United States and Europe involved gay and bisexual men, raising the fear that a community still living with memories of prejudice from the HIV/AIDS epidemic will be stigmatized. Advocates and public health officials are trying to set the record straight, stressing that sexual orientation does not make people more susceptible to the virus.
“This is not a gay disease,” said Dr. Ken Mayer, the medical research director of the Fenway Institute, a Boston-based research center focused on sexual minority health and HIV/AIDS.
While it’s unknown where or exactly when this strain of the rare virus jumped from animals to humans, the first major transmission events are thought to have occurred at parties primarily attended by gay men in the Canary Islands and Antwerp, Belgium, Mayer said.
As of Friday, there were 460 confirmed cases of monkeypox nationally and 23 in Massachusetts, according to the Centers for Disease Control and Prevention.
The virus spreads mostly, but not exclusively, through extended skin-to-skin contact, which is why the virus has, so far, remained largely confined to gay and bisexual men.
“It’s the social network phenomenon,” Mayer said. “It’s who you’re having contact with, not anything about the specific behavior.”
If initial transmission had occurred at nightclubs frequented more by heterosexuals, cases would probably have been concentrated among straight people, Mayer said.
“It’s bad luck,” said Dr. Mary Montgomery, an infectious disease expert who focuses on LGBTQ health care at Brigham and Women’s Hospital.
The last major outbreak in the United States in 2003, for instance, was concentrated among people of various sexual orientation who were exposed to pet prairie dogs, according to the CDC.
But if the virus is not contained soon, it will inevitably spread beyond men who have sex with men, Montgomery said.
The virus is also transmitted by contact with clothes or linens that have touched infected rashes or pox, the CDC said. Unlike COVID-19, aerosol transmission of monkeypox is unlikely, Mayer said.
Montgomery said she counsels patients who are worried about contracting the virus to avoid crowded environments and reduce their number of sexual partners. Asking potential sexual partners about exposure and symptoms, such as a rash, is a good idea, Mayer added.
“Having sex and not knowing that is a potential risk. It’s not a huge risk, but it is a potential risk because the virus is out there,” he said.
Adrianna Boulin, director of community engagement and impact at Fenway Health, has been organizing efforts to publicize the risks of monkeypox since the group received an alert from federal health authorities in May.
In light of the community affected, the organization held an online town hall with hundreds of LGBTQ advocates, health care providers, and infectious disease experts, trained their own doctors and nurses about the virus, and has been presenting information at Pride events across Greater Boston. They plan to post TikTok videos soon.
There have been plenty of questions about the virus itself, but on Zooms and outreach events, there’s been as much discussion about the best approach to spread awareness about the disease without stigmatizing the gay and bisexual community, Boulin said.
People in the gay community remember what happened during the HIV/AIDS epidemic, she said, and “some of those experiences that people remember feel as though they are emerging again.”
Health officials and advocates admit messaging about the virus is a delicate task.
“It’s a fine line to make sure that those who seem to be at most risk right now are getting the messaging that they need, but not stigmatizing that population,” Montgomery said. “And not giving those that don’t fall into that social network a false sense of relief.”
That’s something the Boston Public Health Commission has been grappling with since last month. The commission leads the state’s contact tracing efforts for monkeypox cases and is holding meetings with health care providers to inform them about the virus.
“We’re trying to be broad in our perspective and in our outreach,” said Dr. Bisola Ojikutu, the commission’s executive director.
The commission is meeting with an array of community groups. Some, like the Boston Lesbigay Urban Foundation, are focused on the LGBT community, but others, like the Black Boston COVID-19 Coalition, aren’t.
The commission’s efforts to contain the virus are “going well,” Ojikutu said, “but there are many concerns” that remain about avoiding stigma. The current outbreak is also causing symptoms similar to other sexually transmitted infections, which has posed a problem for diagnosis, she said. Anyone worried that a rash could be monkeypox should ask their health care provider about testing, she said.
“Viruses and bacteria don’t determine if someone is gay or straight,” Ojikutu warned. “They just infect.”
For more information, visit fenwayhealth.org/monkeypox