Tri Vo knew that he had monkeypox before his test came back — what started as painless pimples had turned itchy, then began to feel like glass underneath 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 wanted 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 the providers there referred him back to his physician again. After days of pain, he tweeted about his frustration, then closed the app to call the doctor again.
“I was scared and terrified and mad and hopeless, so I tweeted 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 physician and start treatment with Tpoxx the same day.
Monkeypox is now a national public health emergency with around 9,500 cases in the U.S., mainly among men who have sex with men, as well as some small number of nonbinary and trans people. But since the start of the outbreak in the U.S. earlier this spring, messaging and outreach to at-risk groups has been inconsistent, and resources like vaccinations and treatment are still sparse. Many physicians, even in major cities like New York, aren’t up to date on monkeypox or the elaborate process required to request Tpoxx. In lieu of a more robust public health response, people within the queer community are turning to each other for critical information to prevent and treat the virus.
“Because we oftentimes are not prioritized for our health by government organizations, we have to take charge 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 bio, has become an “unintentional monkeypox microinfluencer.”
Like others, he noted that, since the HIV/AIDS crisis began decades ago, queer communities have often turned to grassroots solutions to take care of each other. Last summer, when the Delta variant of Covid-19 was spreading through Provincetown, Mass., gay men did their own contact-tracing before the Centers for Disease Control and Prevention became involved.
“It’s something innate to the queer community,” he said.
With monkeypox, the support has come in many forms, including information-sharing, help scheduling coveted vaccine appointments, and emotional solidarity. Some resources are being provided by people with professional expertise, like the Rapid Epidemiologic Study of 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 launch a community-led survey on symptoms and contacts. Other support has come from incidental activists with no formal expertise who had monkeypox themselves, or simply wanted to help.
Planck, who didn’t previously know Vo, shared a Google document with him: “A Patient’s Guide to Tpoxx Access,” which includes a basic breakdown of what the drug is, how it works, and how someone might access it. Planck didn’t create the document; that was Twitter user @Luke_RB. There are similar documents being shared across the country — one provides a breakdown on where to access vaccines in every state, another explains symptoms and possible remedies.
“The queer community has a long history of leading our providers,” said Joe Osmundson, a co-investigator of RESPND-MI. “The idea is to arm as many people as possible with this information,” he said.
It’s normal, he said, to go into a doctor’s appointment and explicitly state that you’re looking for PEP, a medicine that’s taken after possible exposure to HIV, and not PrEP, a medicine that’s taken preventatively. With monkeypox, if doctors aren’t able or willing to prescribe Tpoxx, some patients are advocating to receive gabapentin, which they say works better for pain than other medication.
Most crowdsourcing happens on Twitter and Instagram, according to Jennifer Barnes-Balenciaga, another RESPND-MI co-investigator. She believes the use of social media has helped to spread information as equitably as possible, especially for Black people in New York who initially didn’t have equal access to vaccines, and trans people facing discrimination and misgendering at vaccine clinics.
“It has been like wildfire to get information out, and people are so receptive,” she said. Even something as seemingly unrelated as Beyoncé’s new album release may have exposed more people to resources, according to Barnes-Balenciaga. Black Twitter — the name for the wider community of Black users on the site — came online to express joy over the music, and intersected with a moment when many queer people were raising the alarms on monkeypox.
One of those people spreading the word is Henry Philyaw. He’s a Black writer, speaker, and podcast host who focuses on sex positivity and HIV/AIDS. Almost a month ago, a friend who works to schedule vaccine appointments in New York reached out to Philyaw to see if he could use his Twitter following of 20,000 users to get more appointments filled. Ever since then, Philyaw spends hours each day reaching out to his mainly Black and brown followers to connect them directly to his friend for appointments. At 4 p.m. he goes to work at a bar, where he’s often sneaking onto his phone between making drinks to continue messaging.
“When these systems fail us time and time again, it’s extremely frustrating,” said Planck. Many people say they are willing to spend their time and money providing resources to fellow queer people, but that doesn’t mean they should have to.
Everyone doing this outreach has specific steps that they believe governments need to take. Planck, for instance, 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 document on vaccines, hopes that his work becomes redundant because the CDC should be doing it. Barnes-Balenciaga wants more outreach to unhoused populations. Osmundson wants to see more explicit policies aimed at global vaccine equity, centering on places where monkeypox has long been endemic.
In the meantime, queer communities will shoulder the burden. Tri Vo, the patient who got Tpoxx thanks to Twitter, said that he used to think it was everyone for themselves when they needed medical care. He trusts doctors, and had never struggled to receive care like he did with monkeypox. To receive such an outpouring of support online helped him to realize that he can lean on his community.
When he saw the responses to his tweet, Vo said he called his boyfriend and began to cry.