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

Doctors who specialize in LGBTQ health are calling on federal officials to cut through the bureaucracy that prevents people from receiving the only treatment known to help those suffering from severe cases of monkeypox.

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

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

On Monday, Twitter user Crazy Broke Asian @tribranchvo took to the social media platform to expose the various avenues she had gotten herself into when it came to trying to get treatment for the painful symptoms of her monkeypox infection.

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

Tri, who preferred that we not use his last name, agreed to talk to us about his ordeal over the phone instead of Zoom, as he is still in too much discomfort, mainly due to injuries. Those injuries have appeared in sensitive areas, including his genitals.

An ER doctor told her he couldn’t prescribe a treatment.

She tried the city-run sexual health clinic in Chelsea, which suggested she see a primary care provider. His PCP said she couldn’t prescribe it.

So he turned to social media. That’s when others in the LGBTQ community sent him a link to a shared Google Doc created by Luke Brown, who experienced similar 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 vaccines and trying to help people get treatment,” Brown told FOX 5. NY. “I’m not particularly sensitive to pain, but this made me cry despite taking opioids.”

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

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

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

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

But both men wish it wasn’t necessary.

“My document shouldn’t exist,” Brown said. “I would love to remove it and redirect people to comprehensive public health messages on how to get this. But it really fills a gap.”

In a conference call Tuesday, leaders of sexual health clinics with a focus on the LGBTQ community urged Health and Human Services Secretary Javier Becerra to declare a federal public health emergency and make the drug more accessible. .

“It is inconceivable not to make more changes to make TPOXX accessible to everyone who needs it,” said David Harvey of the National Coalition of HTA Directors. “We know this is an investigational drug, but the federal government has options on how it can 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 public health emergency, which would free up more funding. We also asked if the department could streamline the process for obtaining TPOXX. HHS declined to respond, instead directing us to the FDA website.

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

New York City Department of Health and Mental Hygiene Full Statement

The Department of Health has been at the forefront of work to help clinics and hospital systems get set up 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 guidance, and direct outreach to hundreds of providers across the city. We are coordinating requests from TPOXX providers from the national strategic reserve. We have partnered with a pharmacy to deliver TOPXX to patients’ homes or healthcare facilities. And we continue to advocate for our federal partners to address barriers to prescribing.

Symptoms of monkeypox

Monkeypox begins as a rash or sores that may look like pimples or blisters. These lumps can appear all over the body, including the face, hands, feet, mouth, genitals, or anus, and can become 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 and pains, like a weaker version of smallpox.

“If you have a new or unexpected rash or other symptoms of monkeypox, contact a health care provider,” states the New York City Department of Health. “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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