When Paul Aguilar, a long-term HIV survivor and chair of the HIV Caucus at the Harvey Milk Gay and Lesbian Democratic Club, saw how fast the monkeypox virus was spreading through his community — and how slow the government’s response was — his memory flashed back to the HIV/AIDS epidemic 40 years ago.
“The World Health Organization told the CDC in the first week of May that this is an issue. San Francisco didn’t do anything until the middle of June,” Aguilar said. Now, he finds himself fighting both misinformation and stigma about the monkeypox virus.
“It’s interesting, because I’m watching young people who didn’t walk through the height of the HIV pandemic walk through this and say, ‘I can’t believe the government ignored this’ and I say, ‘Well let me tell you about 40 years ago.’”
Aguilar is not alone in these flashbacks. As monkeypox continues to spread throughout San Francisco and the country, gay and bisexual men remain disproportionately affected by the virus. As of July 29, “gay, lesbian or same-gender-loving” people made up 83 percent of all monkeypox cases in San Francisco. In California, they make up 92 percent of cases overall.
Aguilar’s roommate, Michael Rouppet, who serves on the board for Marty’s Place, a co-op for long-term HIV survivors, noticed some “disturbing parallels” when monkeypox broke.
“We saw that the federal response was treated with the same negligence, although they’re starting to recognize it,” Rouppet said. When Mayor London Breed last week declared monkeypox a public health emergency, one thought went through Rouppet’s mind: “About time.”
The primary difference Rouppet sees between the HIV epidemic and monkeypox? People aren’t dying en masse.
Even as San Francisco and California declare public health emergencies, concerns still loom large for many in the LGBTQ community. Aguillar was grateful to see California declare a public health emergency on Monday, but still remains worried about how resources are going to be distributed and whether those resources will reach the most vulnerable populations.
“It’s the second pandemic in two and a half years. Something’s broken,” Aguilar said, adding the response that Larry Kramer had some 40 years ago: “Where’s the outrage?”
Vaccines, vaccines, vaccines
For weeks, LGBTQ advocates have been demanding increased access to vaccines. Scarcity across the country, however, means San Francisco has only received a small fraction of the vaccines it needs to effectively fight the virus.
This week, the city received 4,200 vaccines, despite requesting 35,000. On Monday, the city announced that it will receive an allotment of 10,700 vaccines at an unknown date. The U.S. federal government is set to receive more Jynneos vaccines from Bavarian Nordic, the manufacturer in Denmark, but it may take months before the vaccines arrive.
“Human and Health Services keeps talking about the same shipment of vaccines from Denmark for three weeks now. It’s a new press release on the same shipment,” said Gary McCoy, vice president of policy and public affairs for the medical clinic HealthRIGHT 360.
Meanwhile, many people find themselves waiting in long lines at San Francisco General Hospital in the hope that they will be one of the lucky few who gets a first dose vaccine before the clinic runs out of supplies. Currently, the people able to get the monkeypox vaccine include gay men, bisexual men and trans men who have sex with men. Sex-workers of any gender or sexual orientation are also eligible for the vaccine. According to the Center for Disease Control, vaccination given after the onset of monkeypox symptoms does not offer any benefits.
Mission Local went to the line at San Francisco General Hospital on Monday at 8 a.m. “I got up at 6:30 a.m. to come here,” said 40-year-old Kenya Scott, who didn’t make it to the front of the line until about 9:15 a.m. Scott decided to come to the public hospital after having no luck with Kaiser, Strut and the University of California, San Francisco. “It’s nerve-wracking, because you don’t want to catch anything. It’s also on the back end of Covid,” Scott said.
A lot of people Scott knew were also coming to the public hospital to get the vaccine, checking in with friends or on social media to get the latest on wait times. “The information [on the vaccine] has been community-based, instead of institutionally-based,” Scott said.
He is not alone in that experience. Multiple sources have told Mission Local that social media has been their primary source of information throughout this outbreak. “The running joke is ‘gay twitter’ is where all the monkeypox information is, and that’s really unfortunate,” said Vinny Eng, co-chair of the policy committee for the Alice B. Toklas Gay and Lesbian Democratic Club.
The fight beyond vaccines
Even with few vaccine doses to spare, advocates say that more can be done to fight this outbreak.
Among their demands include better dissemination of supplies and information to non-English speaking communities. In San Francisco, Latinx individuals make up a disproportionate number of cases. While materials in Spanish exist on the city’s website, there is concern that not enough is being done to reach these communities.
“They should be running PSAs in Spanish-language newspapers and radio stations. The Latino Task Force did all of this outreach for Covid. The infrastructure exists. We can tackle the disparity if those individuals are properly resourced,” Eng said.
Aguilar echoed Eng’s sentiments. “There’s a digital divide here. There’s a lot of people who don’t have access to smartphones. It’s the same communities that are being disproportionately affected,” he said.
At the moment, the city is meeting with the Latino Task Force once a week with the Department of Public Health to share updates on monkeypox. “We’re still in conversations around how our agencies are going to be used. We have no commitment or direction yet, because there’s a shortage [of vaccines],” Ivan Corado-Vega, Latino Task Force spokesperson, said.
But a lot still needs to be done to reach the most vulnerable communities. Cesar Espinoza-Perez, a sex-worker in the Bay Area, didn’t even think much about the monkeypox virus until a client brought up the idea of getting the vaccine. “A lot of clients didn’t want to work with us when Covid hit until we were vaccinated, and now it’s a similar thing,” he said.
Espinoza-Perez was able to get the monkeypox vaccine through his provider. Now, he is helping his clients try to find the vaccine.
“With monkeypox, I was lucky that my provider offered it right away to me. But there is the stigma of sex workers in many industries, so many sex workers won’t come out to their provider,” he said. “My best friend’s doctor refused to give him HIV medications because he was a sex worker and used drugs, making him feel disposable while his immune system got weaker.” Espinoza-Perez’s friend later passed away from pneumonia.
With both the ongoing Covid-19 pandemic and the new monkeypox outbreak, Espinoza-Perez worries about the safety of his friends who are sex workers – many of whom are not only navigating two viruses, but the economic effects of Covid-19.
“I worry about my sex worker friends who are not feeling safe in any shelter, another who slept on my floor after he got evicted and another working round the clock to keep his daughters housed after getting an eviction notice.”
For Spanish-speaking sex workers, getting information about monkeypox, let alone the vaccine, is even harder, according to Espinoza-Perez. As a member of a support group for Spanish-speaking sex workers, he noticed that other people in the support group weren’t getting information about the monkeypox virus. Some people in the support group who had insurance didn’t even know how to access a primary-care provider, let alone the monkeypox vaccine. “There’s some educational barriers that need to come down.” Espinoza-Perez said.
Furthermore, if a person is infected with monkeypox, then they are supposed to isolate for two to four weeks. At the moment, paid sick leave is not being issued for those with monkeypox.
Another major concern among advocates include the availability of monkeypox testing and the antiviral treatment tecovirimat, sold under the brand name TPOXX.
The U.S. Food and Drug Administration has not approved the antiviral treatment for use against monkeypox, but it is approved for use against smallpox, which is in the same family. At the moment, it is recommended that TPOXX be used to treat severe cases of monkeypox.
Currently, medical practitioners have to sign multiple forms to distribute TPOXX to patients, which presents challenges in patients’ abilities to receive the antiviral treatment.
Stephan Ferris, an attorney in San Francisco who was diagnosed with monkeypox, tried to receive access to TPOXX to treat his lesions. “I tried really hard with my doctor at Kaiser to get it, and they refused to give it. I tried going into City Clinic because I heard that people had better luck getting treated for it there. They refused to give it,” Ferris recalled.
When Ferris asked his doctor why he wasn’t able to receive TPOXX, he was told that the treatment was being reserved for people who had more severe symptoms. “But the friends that I called getting prescribed TPOXX seemed to have the same severity of symptoms that I was having,” Ferris said. “So, it seems kind of arbitrary, at least from my perspective, who’s getting it.”
“We have a known viral treatment. We have a known testing system,” Eng said. “And that’s what makes all of this inexcusable. And that’s why there’s so much anger and such a persistent call for demanding better.”
This article has been updated to include additional comments from Cesar Espinoza-Perez.