Activists bring the monkeypox fight to Schumer’s office

8-14-22 presser
Activists huddle outside Chuck Schumer’s Manhattan office on August 14.

A coalition of health groups held a press conference outside of Chuck Schumer’s Manhattan office demanding that the Senate majority leader do more to press the federal government to respond to the monkeypox outbreak that is largely affecting gay and bisexual men and other men who sex with men.

“The federal government has not provided enough vaccine to meet the demand,” said Bryan Fotino at the August 14 press conference that was held near Schumer’s Third Avenue office. “We are calling on the federal government to release the vaccinations, to release the medication.”

The demand for the monkeypox vaccine has consistently outstripped the supply since the first US monkeypox case was reported in May. Recognizing that supply continues to trail well behind demand, the US Food and Drug Administration (FDA) announced on August 9 that it would allow health agencies to split individual doses of Jynneos, the vaccine for monkeypox and smallpox, into five doses and administer those doses in between layers of skin as opposed to below the skin. Two doses administered four weeks apart are still required for complete protection.

“In recent weeks the monkeypox virus has continued to spread at a rate that has made it clear our current vaccine supply will not meet the current demand,” said Robert Califf, the FDA commissioner, in a statement. “The FDA quickly explored other scientifically appropriate options to facilitate access to the vaccine for all impacted individuals. By increasing the number of available doses, more individuals who want to be vaccinated against monkeypox will now have the opportunity to do so.”

The federal government continues to face limited access to tecovirimat, or TPOXX, which is approved for treating smallpox and is currently the only drug that effectively treats monkeypox. TPOXX for monkeypox is an investigational new drug and people who need the drug must have their doctor apply to the federal Centers for Disease Control and Prevention (CDC) for access. The application process can be onerous, though the CDC recently announced that it had taken steps to expedite the process.

Fotino was ill for two weeks in late July into early August with swollen lymph nodes, pain while urinating, and a single lesion on his genitals. While he suspected it was monkeypox, it took nine days for him to obtain test results.

Bryan Fotino was unable to get TPOXX after falling ill earlier in the summer. Duncan Osborne

“When I was getting the test done, the doctor told me ‘That doesn’t look like monkeypox,’” Fotino said. “It was nine days later so my symptoms had cleared up on their own.”

It is possible that the first vaccine dose that he received on a trip to Canada three weeks before his symptoms first appeared may have made his infection less severe, though any impact of a single dose on a monkeypox infection is unproven. He could not find a doctor who would complete the paperwork to get TPOXX.

“If I could have had the option to get it, I would have gotten it,” Fotino said. To be certain that monkeypox was the cause, a doctor he was seeing ultimately ran a battery of tests for sexually transmitted infections, such as gonorrhea and chlamydia, that also cause pain while urinating.

The five groups that formed the coalition — the HIV activist group ACT UP, the African Services Committee, the Reclaim Pride Coalition, the Treatment Action Group, and PREP4All — are demanding expedited approval and access to TPOXX, mass and equitable access to the vaccine, improved monkeypox testing, safety net funds for people who have to isolate with a monkeypox infection, and improved communication on monkeypox among seven demands.

“Having monkeypox was one of the most painful and isolating experiences in my life,” Joseph Hayden said during the press conference.

Hayden, 34, was physically ejected from a clinic that he visited when his symptoms first appeared. He had anal lesions, muscle aches, and spent five days in bed.

“It was really, like honestly, like having a knife in my lower body,” he said. But Hayden is also a client at the Callen-Lorde Community Health Center and was able to access TPOXX. His symptoms abated in two days after he began taking the drug.

“Within two days, the pain was subsiding and the lesions were going down,” he said. He did not have any new lesions after he began taking TPOXX.

Joseph Hayden recalled experiencing intense physical pain due to monkeypox.Duncan Osborne

During the monkeypox press conference, Schumer was holding his own press conference near Central Park to announce that he would be seeking $22 million on top of the $200 million he had already secured for the US Department of Agriculture to eradicate the spotted lanternfly, which is an invasive species that attacks crops and plants. The bug has been found in New York City, upstate, and on Long Island.

Schumer’s office dispatched an aide who had a roughly 30-minute conversation with the activists on the public sidewalk outside the building that was off the record. The office issued a statement.

“I stand shoulder-to-shoulder with advocates calling for further intensification of the government response to the monkeypox crisis,” Schumer said in the statement. “Thus far, I have successfully pressured the Biden administration to declare a public health emergency, to cut red tape, and get moving on vaccine acquisition, production and distribution — several weeks ago securing 110,000 new doses of vaccine for New York State. I look forward to meeting with on-the-ground health professionals and activists to further our collaboration. The spread of monkeypox calls up both the relentless last two years of COVID, but also, especially for LGBTQ New Yorkers, the incredible pain of the early days of the HIV/AIDS crisis. We will come together as New Yorkers in an all-out response to defeat this new threat.”