TRi Vo knew he had monkeypox before his test came back—what started as a painless pimple had become itchy, then felt like glass under his skin. It was manageable during the day, but at night, it felt like the glass was vibrating, Vo said.
His boyfriend had read about Tpoxx, the only medical treatment available for monkeypox, and he loved it. Vo went to an urgent care clinic but was turned away. His primary care physician, inexperienced with the virus, referred him to another clinic, but providers there referred him back to his doctor. After days of pain, he posted on Twitter to his frustration, he then closed the app to call the doctor again.
“I was scared and terrified and mad and hopeless, so I took to Twitter to vent,” Vo said. Thirty minutes later, he returned to Twitter to find an outpouring of support and recommendations from other gay and queer people. Through those online connections, he was able to see a new doctor and start treatment with Tpoxx on the same day.
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Monkeypox is now a national public health emergency with about 9,500 cases in the US, mostly among men who have sex with men, as well as a small number of non-binary and trans people. But since the outbreak began in the US earlier this spring, messaging and outreach to at-risk groups has been inconsistent, and resources such as vaccinations and treatment are still scarce. Many doctors, even in big cities like New York, are not up to date on monkeypox or the elaborate process required to look for Tpoxx. Instead of a stronger public health response, people within the queer community are turning to each other for critical information to prevent and treat the virus.
“Because we often don’t have our health prioritized by government organizations, we have to take responsibility ourselves,” said Kyle Planck, a Ph.D. candidate in pharmacology at Cornell studying infectious diseases. Planck was sick with monkeypox earlier this summer and so, according to his Twitter biohas become an “unintentional microinfluenza of monkeypox”.
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Like others, he noted that, since the HIV/AIDS crisis began decades ago, queer communities have often turned to grassroots solutions to care for each other. Last summer, when the Delta variant of Covid-19 was spreading through Provincetown, Mass., gays did their own contact tracing before the Centers for Disease Control and Prevention got involved.
“It’s something born for the queer community,” he said.
With monkeypox, support has come in many forms, including sharing information, helping to schedule coveted vaccine appointments, and emotional solidarity. Some resources are provided by people with professional expertise, such as the Rapid Epidemiological Study of the Prevalence, Networks, and Demographics of Monkeypox Infection, or RESPND-MI—a group of queer researchers who host weekly community forums on monkeypox and later this month will start. a community-led survey of symptoms and contacts. Other support has come from casual activists with no formal expertise who themselves had monkeypox, or simply wanted to help.
Planck, who didn’t know Vo before, shared with him a Google document: “A Patient’s Guide to Tpoxx Access,” which includes a basic overview of what the drug is, how it works, and how someone can use it. Planck did not create the paper; he was the Twitter user @Luke_RB. There are similar documents being shared around the country—one provides an overview of where vaccines can be accessed in each state, the other explains symptoms and possible remedies.
“The queer community has a long history of leading our providers,” said Joe Osmundson, a RESPND-MI co-investigator. “The idea is to arm as many people as possible with this information,” he said.
It’s normal, he said, to go to your doctor’s appointment and explicitly say you’re looking for PEP, a drug taken after potential exposure to HIV, rather than PrEP, a drug taken preventively. With monkeypox, if doctors are unable or unwilling to prescribe Tpoxx, some patients are advocating taking gabapentin, which they say works better for pain than other drugs.
Most of the crowdsourcing happens on Twitter and Instagram, according to Jennifer Barnes-Balenciaga, another RESPND-MI co-investigator. She believes that using social media has helped spread the word as equally as possible, especially for people of color in New York, who initially did not have equal access to vaccines, and trans people who face discrimination and misogyny in vaccine clinics.
“It’s been like wildfire to get information out and people are so open,” she said. Even something as seemingly unrelated as the release of Beyoncé’s new album may have exposed more people to the resource, according to Barnes-Balenciaga. Black Twitter — the name for the site’s broader community of black users — sprung up online to express joy about the music and intersected at a time when many queer people were raising the monkey pox alarm.
One of those people who spread the word is Henry Philyaw. He is a writer, speaker and podcast host of color who focuses on sex positivity and HIV/AIDS. Almost a month ago, a friend who works to schedule vaccine appointments in New York contacted Philyaw to see if he could use his Twitter following of 20,000 users to fill more appointments. Since then, Philyaw spends hours every day reaching out to his mostly black and brown followers to connect them directly with his friend for dates. At 4:00 p.m. he goes to work at a bar, where he often sneaks on his phone between drinks to continue texting.
“When these systems fail us time and time again, it’s extremely frustrating,” Planck said. Many people say they are willing to spend their time and money providing resources to other queer people, but that doesn’t mean they have to.
All those doing this outreach have specific steps they believe governments should take. Planck, for example, wants paid sick leave for people who contract monkeypox and have to go into isolation, which can last weeks longer than Covid-19 isolation. Grant Roth, who created and regularly updates the vaccine document, hopes his work will become redundant because the CDC must. Barnes-Balenciaga wants more outreach to homeless populations. Osmundson wants to see clearer policies aimed at global vaccine equity, focusing on countries where monkeypox has long been endemic.
Meanwhile, queer communities will shoulder the burden. Tri Vo, the patient who got Tpoxx thanks to Twitter, said he thought everyone was on their own when they needed medical attention. He trusts doctors and has never struggled to get care like he did with monkeypox. Receiving such support online helped him realize that he could rely on his community.
When he saw the responses to his tweet, Vo said he called his boyfriend and started crying.
