Philly’s LGBTQ network has rushed to offer monkeypox information and services amid slow public health response

Philadelphia consultant Jason Evans woke up one recent morning to five text messages from people desperate to protect themselves against the monkeypox virus, which has been spreading quickly in the city’s LGBTQ community.

None of them could find out where to get vaccinated. On another day a message came from a stylist worried about catching the virus while cutting hair. Another person couldn’t find out where to get tested.

Health officials ”just didn’t have any information out there,” said Evans, who is acting as a liaison between the LGBTQ-focused health organization Philly FIGHT and LGBTQ-friendly bars in the city. “They didn’t have stuff for people to look for, to watch out for, and what to do.”

Concerned that health authorities are moving too slowly, LGBTQ advocates and organizations are working to inform people most at risk from the virus, while also coping with fears that gay men could be stigmatized by the illness.

The World Health Organization over the weekend declared a global health emergency over an outbreak overwhelmingly affecting men who have sex with men. Monkeypox cases in the United States have more than quadrupled in just over two weeks to more than 3,400. Philadelphia, which accounts for the majority of the cases reported in Pennsylvania, saw its case count grow at the same rate, to 50 as of Monday.

Some in the community see echoes of the early days of the AIDs epidemic — unanswered questions, a lethargic public health response, and the fear of indifference to an illness with an outsized impact on gay men.

“I’m starting to become concerned,” said Dean, 58, a bartender at Tavern on Camac, a popular LGBTQ-friendly piano bar. “It reminds me of AIDS when AIDS started.”

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There are differences from the dawn of the AIDS epidemic, especially because back then, there was no effective treatment for what was still a mysterious and often fatal disease. Monkeypox has long circulated, especially in Africa, and effective vaccines and treatments exist. It can spread through close contact, such as the intimate touching associated with sex. The first cases in children were recently reported.

While monkeypox is far less serious than AIDS, which is still life threatening if untreated, it can cause intense pain.

“If chicken pox and shingles had an angry baby it would be monkeypox,” said a 47-year-old Bucks County man, who is among the 84 people officially diagnosed in Pennsylvania. He did not want his name used because he fears being stigmatized.

The Bucks County man knew about the virus before he and his husband took a trip to Florida in early July. They called the health department, only to learn that vaccines were so scarce, they were going only to those who’d been exposed.

“That actually angers me,” he said. “We had called and tried to get vaccines a while ago because we travel to South Florida so frequently and were told we’re not eligible.”

The 11 days in Florida felt like a welcome return to pre-pandemic times, he said, with crowded pool gatherings and dance parties. Neither man noticed anyone who was obviously sick.

Just days after returning home, both men had symptoms of the virus.

The Bucks County man described a rash that covered most of his body and caused excruciating pain.

“My body is deformed and disfigured and I feel that emotionally,” he said. “I’m psychologically waiting for these things to heal and praying there’s no residual scars.”

His husband was in so much pain he could sleep only while lying in a bath of warm oatmeal water.

Treatments including TPOXX, a drug kept in reserve by the government in case of a smallpox biological attack, have helped ease the symptoms, though both are still recovering several weeks after their exposure.

» READ MORE: Exposed to monkeypox? Here’s how to get a vaccination appointment in Philly.

Public health response to the virus has been marked by a slow rollout of information and limited access to tests and vaccines. Tests are more accessible now, but health experts fear there aren’t enough vaccine doses to contain the outbreak.

Evans, the Philadelphia consultant, has focused on the long-standing LGBTQ bar and restaurant scene as safe spaces for conversations that may be uncomfortable to have elsewhere. He’s shared informational emails with staff at several bars both to protect them and so they can serve as messengers to customers.

“When there’s discrimination, it’s the first place to go, it’s the easiest place to find,” Evans said. “Now that we have all this technology, it’s still the bar.”

Craig van Baal recently blasted out an email through his LGBTQ organization, The Gables, warning the Philadelphia region to take the virus seriously, especially gay men living or vacationing at the Jersey Shore. He noted that men from New York City, the epicenter of the monkeypox outbreak in the United States, often visit there too.

At 71, van Baal is well-known from his work over three decades to support gay men in Cape May. The recent rise of monkeypox has brought back memories of friends he lost during the AIDS epidemic of the 1980s.

“I just don’t want it to start and become another gay disease,” he said. “I lived it and I don’t want to do that again.”

Nationally, the median age of people who have contracted the virus is 36, the CDC has said. People that age would have been roughly a year old when the first HIV treatment, AZT, became available. Young gay men are also accustomed to relying on PrEP, a drug that prevents the transmission of HIV.

Matt Forrest, of Philadelphia, is aware of the comparisons with AIDS but said COVID-19 is a parallel that more closely resonates with younger gay men.

“People don’t want another experience of life getting put on hold because we didn’t act quickly enough,” said Forrest, 34.

He’s found younger men willing to be open about their experiences with the virus, even sharing details about some of its difficult symptoms. Social media has become an important source of information, he said. He is leaning on Twitter and Instagram for information.

» READ MORE: Monkeypox is almost nothing like COVID. Here’s what to know, from two Philly scientists who’ve studied it

Timothy Latz, of Philadelphia, spends up to four hours a day curating accurate content about the virus for the private Facebook group Stop the M Pox. With vaccine and treatment access currently limited, it’s a balancing act to not single out the community while also providing information to help high-risk individuals protect themselves.

“A lot of people are talking about, let’s not place stigma on gay men or men who have sex with men about this,” Latz said. “But on the other hand people have got to take responsibility for their health.”