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

NEW YORK - Doctors that specialize in LGBTQ health are asking federal officials to cut the red tape that's preventing people from getting the only treatment known to help those suffering with severe cases of monkeypox.

Tecovirimat, or TPOXX, is a drug most people have likely never heard of. It's an antiviral approved by the FDA to treat smallpox. The FDA says it may be used to treat monkeypox as well. The CDC is making it available under what is 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 built a shareable Google document to help monkeypox patients find doctors that not only know what TPOXX is but how to navigate the cumbersome prescription process.

On Monday, Twitter user Crazy Broke Asian @tribranchvo took to the social media platform to lay out the various avenues at which he'd struck out when it comes to trying to get treatment for the painful symptoms of his monkeypox infection.

"It's excruciating pain—like, I've never felt pain so bad in my life," the Twitter user told FOX 5 NY.

Tri—who preferred we not use his last name—agreed to speak to us about his ordeal on the phone rather than Zoom, since he's still in too much discomfort, predominantly due to the lesions. Those lesions have appeared in sensitive areas, including his genitals.

An urgent care physician told him they could not 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 could not prescribe it.

So he turned to social media. That is when others in the LGBTQ community sent him a link to a shared Google document created by Luke Brown who experienced similarly painful symptoms weeks earlier.

"I wouldn't wish it on anybody, and that's one of the reasons I am still so fired up about trying to get people vaccine access and trying to help people get treatment," Brown told FOX 5 NY. "I'm not particularly pain sensitive but I was brought to tears by this despite being on opioids."

The document includes information for doctors 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 providers who are already familiar with TPOXX prescriptions.

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

"I would say maybe like 30% less pain than yesterday," he said.

He wrote on Twitter that he was "emotional" and so thankful to the community for sending him the document. 

• NYC declares monkeypox state of emergency

But both men wish it wasn't necessary.

"My document shouldn't exist," Brown said. "I would love to take it down and just redirect people to comprehensive public health messaging on how to acquire this one. But it really does fill a vacuum."

On 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 to make the drug more easily accessible.

"It's unconscionable not to further make changes to make TPOXX accessible to all that need it," National Coalition of STD Directors' David Harvey said. "We know this is an investigational drug, but the federal government has options for how it can make this drug available on an expedited emergency basis."

FOX 5 NY asked the U.S. Department of Health and Human Services if Becerra is considering a federal public health emergency, which would free up more funds. We also asked if the department might streamline the process for obtaining TPOXX. HHS declined to answer and instead pointed us to the FDA's website.

We also asked the New York City Health Department what it might be able to do to assist in the process. The department declined to speak on camera but in a statement wrote, in part, that it is asking federal partners to "address the barriers to prescribing" TPOXX. New York City-based 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 on the forefront of working to help clinics and hospital systems set up to prescribe TPOXX quickly. Any provider can prescribe TPOXX under the current federal protocol, and the Health Department is a resource to help providers get started. We are providing technical assistance, treatment guidance and direct outreach to hundreds of providers across the city. We are coordinating requests from providers for TPOXX from the national strategic stockpile. We have partnered with a pharmacy to deliver TOPXX to patient’s homes or health care facilities. And we are continuing to advocate for our federal partners to address the barriers to prescribing.

Monkeypox Symptoms

Monkeypox begins as a rash or sores that can 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.

The symptoms usually start between a week to two weeks after exposure but may not appear for up to 21 days. The sickness can last from 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," 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."