Rig Rush is frustrated. The global marketing director with Impulse Group — an organization providing HIV/AIDS education for gay men — says it has been hard to watch state and federal health departments respond to the worldwide monkeypox outbreak.
Like COVID-19, the vaccine and testing rollout in Georgia has been slow. And there’s concern that a stigma could develop around monkeypox as a “gay disease,” similar to the HIV/AIDS epidemic of the ’80s and ’90s.
“I’m disappointed in the public health departments because yet again, we are behind the curve,” Rush said.
Georgia has more than 1,000 monkeypox cases, the fourth-highest number in the country, according to the U.S. Centers for Disease Control and Prevention. Nearly 80% of cases in the state are Black men who have sex with men, predominantly concentrated in metro Atlanta.
Across the country, experts have struggled with how to best advise the LGBTQ+ community on ways to avoid monkeypox, especially since most cases have been transmitted through sex. Some health officials have had internal debates about how to address the harmful influence of stigma while educating the public about the outbreak.
Experts who work in public health to end HIV/AIDS say they see similar stigma in the response to monkeypox. Because that outbreak mostly affected men who had sex with men, it was referred to as “gay-related infectious disease,” or GRID, which led to more stigma.
In Georgia, HIV/AIDS has disproportionately affected Black people, specifically in the Atlanta area. According to the Georgia Department of Health, more than 70% of new HIV diagnoses in 2020 were Black people.
The numbers ring similar to those seen in the monkeypox outbreak: where the overwhelming majority of cases are affecting Black men.
As more people are diagnosed with monkeypox, some are going on social media to share their experiences, fielding stigmatizing questions about the viral disease in real time.
Camille Seaton of Marietta, who suspects she caught monkeypox at work, received discriminatory questions while discussing her diagnosis in an Instagram Q&A. Some people questioned whether she was born a woman, and said she could only catch monkeypox if she had sex with a man who also has sex with men — assumptions reflecting a misconception that the disease cannot be spread heterosexually.
Angelo Perry, an Atlanta man who has hosted live Q&As about his monkeypox infection on social media, said some commenters told him he was being punished for being gay.
The Georgia Department of Public Health has said it’s important not to inadvertently stigmatize communities by focusing on which groups monkeypox affects the most. Instead, the department says it’s best to give accurate information to all communities, emphasizing that everyone is capable of contracting monkeypox, and is working with various organizations who engage with queer men.
But the CDC has provided more targeted advice on monkeypox to communities that are disproportionately impacted. For example, the agency has advised men who have sex with men to have open conversations with sexual partners about unexplained rashes and sexual behavior. Justin Smith, director of the Positive Impact Health Centers’ Campaign to End AIDS, says stigma can prevent that dialogue from happening.
“Typically, in this country, we have such a stigma and shame around honest and open conversations around sexuality in general, but also when you add in kind of the dimensions of gay sexuality and queer sexuality, and overlay that with race, all those things, you kind of create this compound intersectional stigma,” Smith said.
Hindering the public health response
Stigma can limit contact tracing, a practice key to controlling diseases like HIV, and can prevent vulnerable populations from seeking reliable and accurate information about a disease.
Stigma can also cause complacency in populations that aren’t among the majority of those affected. For example, experts say that heterosexual people might think they are in the clear of contracting monkeypox and therefore may not take as many precautions to prevent the disease. It can also cause a fear of not being socially accepted, which can impede the ability to contact trace or understand how monkeypox is impacting the state.
“When people are getting monkeypox right now, they know what this looks like. So when we start to get sores, we’re not trying to be seen by anyone,” said Joshua O’Neal, the sexual health director at the Fulton County Board of Health. He even says that there are some doctors who aren’t comfortable testing for monkeypox, and the combination of being turned away from testing plus having physical lesions on your face can lead to discouragement to engage in the medical system further.
“How can we get the proper number if people aren’t coming in to get care, providers are not testing, and they’re also feeling stigmatized by walking around with lesions on their face?” O’Neal said.
Addressing the stigma
A spokesperson for the Georgia Department of Public Health said officials are working with “trusted community partners” to address stigma.
Part of Fulton County’s community push involves creating spaces for dialogue. In July, the Board of Health held a town hall where people who were diagnosed with monkeypox shared their experiences. The meeting was organized in partnership with Georgia Equality and Atlanta Pride, both organizations that advocate for LGBTQ rights. That’s part of a transparent approach where people can hear first-hand experiences from communities that have been impacted directly.
O’Neal said reducing stigma around monkeypox requires more grassroots organizing and mobilizing.
“When people right now have monkeypox in our community, they’re showing what that looks like on their social media,” he said. “I have seen several of my peers who are posting pictures and are doing a day-to-day update and are talking about the lack of care that they have and how frustrated they are that they can get testing. I think that’s queer-centered support.”
In New York City, for example, health officials debated whether to tell people to reduce their sexual activity while the monkeypox outbreak continues to spread. The Georgia Department of Public Health hasn’t sent any advice like this, but the mere discussion of it points to a world where queer people’s sex lives are constantly under scrutiny.
Non-stigmatizing advice, Rush said, could include discussions of delayed gratification, which is having a harm reduction method that involves waiting to have sex instead of abstaining.
“Infections are rising and people are frustrated, and people look to these entities of expertise for strategies, but what they get is sanitized rhetoric,” Rush continued. “We get unresolved and unanswered questions. We get a lot of gray areas, and we’re told to do things that are not the most realistic.”