Since cases of monkeypox started popping up in Europe and North America, news stories and social media posts have been buzzing about it, some of them adding to the stigma surrounding the disease.
The virus that causes monkeypox, which is endemic to 12 countries in West and Central Africa, is transmitted via close contact with an infected person or material. Many of the cases reported so far in this outbreak have been in men who have sex with men. This is partly because many members of this community tend to be vigilant about monitoring for sexually transmitted diseases. Experts anticipate that, as they expand their surveillance, the number of cases beyond this group will rise.
But that hasn’t stopped some people from jumping to conclusions and associating monkeypox with gay and bisexual men. “This is not a ‘gay disease,’ as some people on social media have attempted to label it,” said Andy Seale, an advisor specializing in HIV at WHO, during a recent Q&A.
Public health officials understand that stigma and assumptions can come with real consequences for public health—they’ve learned this the hard way, via the AIDS epidemic. The United Nations Programme on HIV/AIDS already issued a warning about monkeypox reporting and commentary it says “reinforces homophobic and racist stereotypes.”
“Lessons from the AIDS response show that stigma and blame directed at certain groups of people can rapidly undermine outbreak response,” it said in a press release.
Lessons from HIV
Early mistakes with HIV had long-term consequences. “Policymakers, media, and others have made assumptions based on early data that did not support the health of gay and bisexual men, that blamed them for infection and transmission, and that contributed to more people acquiring and transmitting the virus,” said Tara McKay, a sociologist at Vanderbilt University.
What’s more, she added, the risks of HIV weren’t limited to men who had sex with men. “Failing to acknowledge this created serious and long-lasting blind spots in HIV care and prevention.”
The same is true for monkeypox, she said. At the same time, public health officials can’t ignore when a disease is showing up more often in a particular community: “[That] is also damaging and can lead to a distribution of resources that is not aligned with equity and human rights,” she said. “It is important to be precise and accurate without stigmatizing and falling back on racist and heterosexist stereotypes.”
Getting everyone a seat at the table
Scientists need to know how monkeypox is spreading and how to treat it, of course, but also need to make sure they have the right stakeholders participating in the decision-making. Earlier this week, WHO convened a meeting on monkeypox that included representatives from countries experiencing an outbreak, as well as from places where the virus is endemic, like Nigeria. “We had really sound advice shared, which can be equally as helpful to us in managing and leading the response as the science and the data,” said Seale.
Inviting these stakeholders to the table is one of public health’s biggest lessons from the HIV epidemic. “The major paradigm in both public health and medicine was the ‘expert/doctor’ telling the ‘patient/client/community member’ what to do. This was not a paradigm that would have ever been successful in handling the AIDS epidemic,” reads one 2005 study about the public health lessons from HIV/AIDS.
This power wasn’t readily handed to stakeholder communities—they created their own organizations and protested the medical establishment for their needs. Public health leaders were smart to work with these communities, not against them, leveraging existing community structures for the benefit of public health.
The media, too, should avoid the mistakes of the HIV epidemic. “Media need to be specific about transmission, location, and what is known versus uncertain,” McKay said. Labeling monkeypox as a gay or African disease, or using images of monkeypox on black skin has real consequences for public health: “Blaming communities now forecloses opportunities to get their buy-in later and encourages people to not seek care when they should,” she added.
Even if the monkeypox outbreak doesn’t spread, the stakes are high to get messaging around the disease right. “Queer folks and queer folks of color are fighting for their lives right now in many contexts, including the US,” McKay said. “They don’t need more fear mongering or scapegoating of LGBTQ+ populations and communities.”