LGBTQ+ Community Hears Painful Echoes of AIDS Crisis in Government Response to Monkeypox

As epidemiologists warn that the U.S. is running out of time to contain the monkeypox outbreak — with vaccines in woefully short supply and testing capacity “abysmal” — some Bay Area LGBTQ+ leaders say the federal government’s response has begun to feel painfully reminiscent of the AIDS epidemic that emerged in the early 1980s.

Efforts to control the initial spread of monkeypox would have been swifter and messaging clearer, they argue, if the virus were not primarily affecting the gay community.

“The San Francisco AIDS Foundation formed [in 1982] in a similar moment of crisis, due to an initial failure in the federal public health response to what was then the HIV epidemic,” Dr. Tyler TerMeer, the group's CEO, told KQED Forum last week. “It was really our own community that had to rise up to support one another, educate each other, and fight for access and resources that we needed and deserved as LGBTQ people.”

More than 4,900 people in the U.S. have so far tested positive for monkeypox, though experts say the true size of the outbreak is almost certainly larger. As of Thursday, there were some 800 cases reported in California, 281 of those in San Francisco alone.

Monkeypox is rarely fatal, according to the Centers for Disease Control and Prevention (CDC); more than 99% of people who contract the virus survive. But the illness can be extremely uncomfortable, say those who have experienced it, with symptoms including fever, headache, and lesions that can take weeks to completely heal. And, as with COVID-19, those who contract monkeypox experience the burdens of isolating while contagious — which, for some, may include lost wages.

The dangers of framing

While the vast majority of monkeypox cases have been recorded in men who have sex with men, the CDC also has reported infections in cisgender women. And on July 23, the agency announced two documented cases in children, including a toddler in California.

CDC director Rochelle Walensky noted that the children’s cases “are traced back to individuals who come from the men-who-have-sex-with-men community, the gay men’s community.”

The framing she used quickly came under fire from critics who called it irresponsible and potentially dangerous, especially at a time when experts say LGBTQ+ rights are increasingly under attack, and homophobic accusations of gay people “grooming” children have become a staple of right-wing rhetoric.

“It’s really important that we do not use this moment to propagate homophobic or transphobic messaging,” Dr. Ashish Jha, the White House coronavirus response coordinator, said during a press conference Tuesday.

Meanwhile, Dr. Anthony Fauci, President Biden's chief medical adviser, told NPR this week that the government should work to combat homophobic stigma associated with monkeypox by focusing on the virus itself, not the people who are infected with it — and by ensuring “access to testing, to treatment, and to vaccines, as opposed to making it a situation where people are afraid to come forward for those types of things.”

In a press briefing on Friday, California Public Health Officer Dr. Tomás Aragón said officials were actively working with community groups to reduce any stigma around the virus that targets the LGBTQ+ community, which he said “has been singled out and treated unfairly.”

“No single individual or community is to blame for the spread of any virus,” Aragón stressed.

Health experts also say messaging that focuses exclusively on the LGBTQ+ community is actually counterproductive in containing the virus, which is not sexually transmitted, but rather spreads through close physical contact with an infected person, according to the CDC.

“If you hear that, for instance, monkeypox is only a gay man thing, you automatically check out if you're not a gay man,” George Mizrahi Jackson, executive director of AIDS Project of the East Bay, told KQED. “And that misinformation is problematic. Everyone can get monkeypox. If we're talking about gay men perhaps being the vectors of monkeypox, the reality is the families that they're around are going to be the ones exposed. So we want to make sure that we're being honest about the actual risk that you're putting yourself at.”

A painful history

Health experts caution that the AIDS crisis illustrates the potentially dire consequences of inaccurate messaging. In the early 1980s, it was commonly referred to as “gay-related immune deficiency,” and in 1982, the year the SF AIDS Foundation was founded, a New York Times headline referred to HIV as a “homosexual disorder.”

The disease ultimately took the lives of hundreds of thousands of people of all genders and sexual orientations, as the public’s understanding of the disease lagged well behind the reality of its scope.

But Dr. TerMeer, who has lived with HIV for 18 years, cautioned against drawing “a direct correlation between this moment and the beginning of the HIV epidemic.”

“The story of HIV really has its own crucially important yet complicated and tragic memoir that is a scar on American history, and that needs its own moment of reflection in an ongoing way,” he said.

But what is very similar and important to note, he added, is the lack of urgency from government officials in responding to a disease that, at least initially, has primarily affected men who have sex with other men.

“That we've been left on our own to share information, to ensure that folks know when clinics are popping up, to support one another, when you may stand in a line for a day and not get access to the vaccine that you feel you need and deserve,” TerMeer said. “And to rally together to fight against what has been, yet again, another public health failure that may not have existed if [the virus] was impacting another population.”

State Sen. Scott Wiener and U.S. House Speaker Nancy Pelosi — both San Francisco Democrats — are among a growing number of officials who have publicly criticized the pace of the federal government’s response to the outbreak, with both pointing specifically to the vaccine shortage in San Francisco.

And on Thursday, following heavy criticism of the city's initial public health response to the virus, San Francisco Mayor London Breed declared a state of emergency in the city, slated to take effect Aug. 1. The declaration will allow local officials to “accelerate emergency planning, streamline staffing, coordinate agencies across the city, allow for future reimbursement by the state and federal governments and raise awareness throughout San Francisco” about monkeypox, according to a release from the mayor’s office.

The announcement comes days after city health officials reported that the city had again run out of monkeypox vaccine — for the second time this month. With a new federal shipment of vaccines on the way, the clinic at San Francisco General Hospital is expected to reopen on Monday, Aug. 1, and remain open while those limited supplies last.

“Our predominant advocacy at the moment is, ‘We need vaccines and we need them now,’” said TerMeer.