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

Doctors specializing in LGBTQ health are calling on federal authorities to cut red tape that prevents people from getting the only treatment known to help those with severe cases of monkeypox.

Tecovirimat, or TPOXX, is a drug that most people have probably never heard of. It is an FDA-approved antiviral to treat smallpox. The FDA says it can also be used to treat monkeypox. The CDC makes it available under what’s called “extended access.”

But TPOXX is so hard to get that members of the LGBTQ community have taken it upon themselves to help each other. They created a shareable Google document to help monkeypox patients find doctors who not only know what TPOXX is, but also how to navigate the tedious prescribing process.

On Monday, Twitter user Crazy Broke Asian @tribranchevo took to the social media platform to lay out the different paths he had taken when it came to trying to get treatment for the painful symptoms of his monkeypox infection.

“It’s excruciating pain, like I’ve never felt such intense pain in my life,” the Twitter user told FOX 5 NY.

Tri – who preferred that we not use his last name – agreed to tell us about his ordeal on the phone rather than Zoom, as he is still in too much discomfort, mainly from the injuries. These lesions appeared in sensitive areas, including his genitals.

An ER doctor told her they couldn’t prescribe treatment for it.

He tried the sexual health clinic run by the City of Chelsea, who suggested he see a primary care provider. Her PCP said she couldn’t prescribe it.

So he turned to social media. It was then that other members of the LGBTQ community sent him a link to a shared Google doc created by Luke Brown, who had experienced similarly painful symptoms weeks earlier.

“I wouldn’t wish that on anyone, and that’s one of the reasons I’m still so excited about trying to get people access to the vaccine and trying to help people get treatment,” Brown told FOX 5 NY. “I’m not particularly sensitive to pain, but I was moved to tears despite taking opioids.”

The document includes information for physicians who may not be aware of the process of obtaining TPOXX. Right now, that involves complicated paperwork sent to the CDC for approval. It also includes a short list of vendors who are already familiar with TPOXX requirements.

Tri went to the first clinic on the list, got the medicine and after a day of treatment his symptoms were already improving, he said.

“I would say maybe 30% less pain than yesterday,” he said.

He wrote on Twitter that he was “emotional” and so grateful to the community for sending him the document.

But both men wish that was not necessary.

“My document shouldn’t exist,” Brown said. “I would love to take it down and just redirect people to full public health messages on how to acquire this one. But it really fills a void.”

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

“It is unconscionable not to make additional changes to make TPOXX accessible to everyone who needs it,” said David Harvey of the National Coalition of MST Directors. “We know this is an investigational drug, but the federal government has options to make this drug available in an expedited emergency.”

FOX 5 NY asked the US Department of Health and Human Services if Becerra was considering a federal public health emergency, which would free up more funds. We also asked if the department could streamline the process for obtaining TPOXX. HHS declined to answer and instead directed us to the FDA website.

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

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

The Department of Health has been at the forefront of working to help clinics and hospital systems put in place to prescribe TPOXX quickly. Any provider can prescribe TPOXX under current federal protocol, and the Department of Health is a resource to help providers get started. We provide technical assistance, treatment advice and direct outreach to hundreds of providers across the city. We coordinate requests from TPOXX suppliers from the national strategic stock. We’ve partnered with a pharmacy to deliver TOPXX to patients’ homes or healthcare facilities. And we continue to advocate with our federal partners to remove barriers to prescribing.

Symptoms of Monkey Pox

Monkeypox begins as a rash or sores that may look like pimples or blisters. These bumps can appear all over the body – including the face, hands, feet, mouth, genitals or anus – and can become infected.

Symptoms usually begin between a week and two weeks after exposure, but may not appear for 21 days. Illness can last two to four weeks with flu-like symptoms including fever, chills, fatigue, swollen lymph nodes, headache and body aches, like a weaker version of smallpox .

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

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