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

Physicians specializing in LGBTQ health are asking federal officials to cut red tape that prevents people from getting the only known treatment to help people suffering from severe cases of monkeypox.

Tecovirimat, or TPOXX, is a drug that most people have probably never heard of. It is an antiviral drug approved by the FDA 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 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 monkey pox patients find doctors who not only know what TPOXX is, but also how to navigate the cumbersome prescription process.

On Monday, Twitter user Crazy Broke Asian @tribranchvo took to the social media platform to chart the various avenues he had taken when trying to get treatment for the painful symptoms of his monkeypox infection.

“It’s excruciating pain, I’ve never felt such 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 on the phone instead of Zoom, as he is still in too much discomfort, mainly because of the lesions. Those lesions have appeared in sensitive areas, including his genitals.

An emergency room doctor told him they couldn’t prescribe treatment for it.

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

So he turned to social media. At that point, others in the LGBTQ community sent him a link to a shared Google doc created by Luke Brown, who had similar painful symptoms weeks earlier.

“I wouldn’t wish it on anyone, and that’s one of the reasons I’m still so excited about trying to give people access to vaccines 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 by this despite taking opioids.”

The document provides information for physicians who may not be aware of the process of obtaining TPOXX. At this point, it involves complicated paperwork sent to the CDC for approval. It also includes a short list of providers who are already familiar with TPOXX regulations.

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

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

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

But both men wished it wasn’t necessary.

“My document shouldn’t exist,” Brown said. “I’d love to remove it and just direct people to extensive public health posts on how to get it. But it really fills a vacuum.”

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

“It is unscrupulous not to make further changes to make TPOXX accessible to all who need it,” said David Harvey of the National Coalition of STD directors. “We know this is an investigational drug, but the federal government has options for making this drug available on an accelerated emergency basis.”

FOX 5 NY asked the US Department of Health and Human Services if Becerra is considering a federal public health emergency that 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’s website.

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

New York City Department of Health and Mental Hygiene Full Statement

The health department has been at the forefront of helping clinics and hospital systems set up to rapidly prescribe TPOXX. Any healthcare provider can prescribe TPOXX under current federal protocol, and the health department is a resource to help healthcare providers get started. We provide technical assistance, treatment guidance and direct assistance to hundreds of healthcare providers in the city. We coordinate provider requests for TPOXX from the national strategic stock. We work together with a pharmacy to deliver TOPXX to the patient’s home or to healthcare facilities. And we continue to advocate for our federal partners to address the barriers to prescribing.

Monkeypox Symptoms

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

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

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