LGBTQ monkeypox patients use social media to help each other get treatment

Doctors specializing in LGBTQ health are asking federal officials to cut red tape that stands in the way of the only treatment that can help those suffering from severe cases of monkeypox.

Tecovirimat, or TPOXX, is a drug most people have never heard of. It is an FDA-approved antiviral for the treatment of chickenpox. The FDA says it can also be used to treat monkeypox. The CDC is making it available under what it calls “expanded access.”

But TPOXX is so complicated that members of the LGBTQ community have taken it upon themselves to help each other. To help monkeypox patients find doctors who not only know what TPOXX is, but also know how to navigate the awkward prescription process, they’ve created a generic Google Doc.

Twitter user Crazy Broke Asian on Monday @tribranchvo A monkey has taken to the social media platform to show how it went when trying to treat the painful symptoms of a smallpox infection.

“This is excruciating pain, like I’ve never felt pain like this in my life,” a Twitter user told FOX 5 NY.

Tri — who preferred not to use her last name — agreed to speak with us over the phone rather than Zoom because she’s still feeling uncomfortable, mostly from the injury. Those sores appeared in sensitive areas, including the genitals.

The emergency room doctor said he couldn’t prescribe treatment.

She tried the City Sexual Health Clinic in Chelsea, which suggested she go to primary care. His PCP said he couldn’t prescribe it.

So he turned to social media. That’s when others in the LGBTQ community sent him a link to a Google Doc created by Luke Brown, who had experienced similar pain a few weeks earlier.

“I wouldn’t wish this on anyone, and that’s one of the reasons I’m still trying to help people get access to vaccines and help people get treatment,” Brown told FOX 5 NY. “I’m not particularly sensitive to pain, but even though I’m on opioids, it made me cry.”

The document contains information for physicians who are unfamiliar with the process of obtaining TPOXX. Currently, this involves complex documentation that is sent to the CDC for approval. It also includes a short list of providers familiar with TPOXX prescriptions.

Tri went to the first clinic on the list, got medication, and said her symptoms improved after a day of treatment.

“I’d say probably 30% less pain than yesterday,” he said.

He wrote on Twitter that he was “emotional” and very grateful to the public who sent him the document.

But they both wish it didn’t have to.

“I shouldn’t have an ID,” Brown said. “I want to take that away and direct people to holistic health care messaging. But this really fills a gap.”

At a conference Tuesday, leaders of sexual health clinics focused on the LGBTQ community and urged Health and Human Services Secretary Javier Becerra to declare a federal public health emergency and make the drug more readily available.

“It would be disingenuous not to make further changes to make TPOXX available to everyone who needs it,” said David Harvey of the National Coalition of CPR Directors. “We know this is an investigational drug, but the federal government has options on how to make this drug available in an expedited emergency.”

FOX 5 NY asked the US Department of Health and Human Services if Becerra is considering a federal health emergency, which would free up more funds. We also asked if the department could streamline the TPOXX acquisition process. HHS declined to respond and instead referred us to the FDA’s website.

We also asked the New York Department of Health what they can do to help with this process. The department declined to speak on camera, but wrote in a statement, in part, that it is asking federal partners to “remove barriers to prescribing” TPOXX. New York City-based providers have started TPOXX treatment on 450 patients to date.

Full statement from the New York City Department of Health and Mental Hygiene

The Department of Health is working to help clinics and hospital systems prescribe TPOXX more quickly. Any provider can prescribe TPOXX according to current federal protocol, and the Department of Health Services is a resource to help providers get started. We provide technical assistance, treatment guidance and direct communication to hundreds of providers across the city. We are coordinating supplier requests for TPOXX from the national strategic warehouse. We have partnered with pharmacies to deliver TOPXX to patient homes or medical facilities. And we continue to advocate for our federal partners to remove barriers to prescribing.

Monkey pox symptoms

Monkey pox starts as a rash or sores that look like pimples or blisters. These bumps can appear all over the body, including your face, hands, feet, mouth, genitals, or anus, and may be infected.

Symptoms usually begin one to two weeks after exposure, but may not appear for up to 21 days. The illness can last two to four weeks with flu-like symptoms, including fever, chills, fatigue, swollen lymph nodes, headache and body aches, similar to a worse form of chickenpox.

“See your health care provider if you have a new or unexpected rash or other symptoms of monkeypox,” the New York Department of Health said. “A person is contagious until all the sores have healed and a new layer of skin has formed, which can take two to four weeks.”

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