In the queer community right now, the monkeypox vaccine is like liquid gold.
The White House last week declared the virus a public health emergency, which frees up more resources to fight the disease. But doses of the immunization are very limited. So far, Philly’s gotten just over 2,600.
In the clamor to track down the vaccine, some Philadelphians have heard a concerning suggestion: that the vast majority of early doses are going to white people.
“Those are the rumors,” said Sebrina Tate, executive director of Bebashi, a local social services nonprofit born out of the HIV/AIDS epidemic that now serves mostly people of color. “And those were the rumors — and what we actually found to be so — in the past.”
It’s impossible to say whether the city’s monkeypox vaccine rollout has been equitable, because Philly’s Health Department is declining to release a breakdown by race for the doses administered so far.
“The Health Department has every intention of releasing those data, as soon as it is ready for release,” said spokesperson James Kyle. “In the meantime, the Health Department is working every day [to] make sure that people who have been exposed or are at the highest risk have equitable access to the vaccine.”
In the meantime, it’s a story that’s been heard by providers, nurses and health experts, and witnessed anecdotally by patients who have visited clinics. Tate worries it’ll be a repeat of COVID, when the early doses of the vaccine went mostly to white residents.
Philly-area residents — including several men who have sex with men, the population where the virus has spread first — told Billy Penn that in pursuit of a dose, they’ve had to call multiple numbers, just to idle in a waitlist for three or more hours. They’ve left voicemails and waited a week for a call back. Some eventually secured an appointment. Others still haven’t.
“The fact that you don’t even know when it’s going to be available, you could be waiting two days to a year,” said Andre Waters, a Black, gay man who lives in South Jersey and looked for a dose in cities and towns in the region. “There’s no guarantee.”
With monkeypox already spreading more rapidly among people of color, health experts say public data is the best way to ensure everyone has access to the vaccine.
“It’s really important to be able to characterize the extent of the problem,” said Oni Blackstock, a primary care and HIV physician in New York, who founded an org called Health Justice. “If there’s no data, you can say, ‘We don’t really have a problem. There’s no inequity in vaccinations.’ And there’s no action as a result.”
‘The line of people was not representative’
All the people Billy Penn spoke with for this story had heard the rumor that mostly white people are getting the monkeypox vaccine. Like Marquise Richards, a teacher from North Philly who finally got his own appointment on Saturday after waiting 3.5 hours on hold with the Health Department.
“One of my friends went to go get it and they were just like, ‘There’s not a lot of people of color in these lines,’” said Richards, a 26-year-old Black gay man. “So we were wondering, what does access look like for the Black community? A lot of them are just like, we can’t even get an appointment because they said there’s no more or it’s filled up.”
This perception exists outside Philly too. Blackstock, of Health Justice, noticed it at her own Harlem clinic.
“When that became a site, the line of people was not representative of what my clinic population looks like,” Blackstock said. “And I have heard that also from colleagues in Atlanta, similar reports.”
Monkeypox is rarely fatal. But it can bring on a slew of painful symptoms, like fever, sore throat and painful lesions all over the body. Once you’re diagnosed, the quarantine can last up to four weeks. When the current outbreak first started spreading in the U.S. earlier this summer, it mostly infected white patients. Since then, the CDC reports that the number of monkeypox cases has decreased in white and Hispanic people, but continued to increase among Black people.
Waters, the South Jersey resident, just got over his own case of monkeypox. Eating and drinking felt like swallowing glass. Then the rash started to form. After he got diagnosed, the disease kept him away from his warehouse job for two weeks.
“That’s two paychecks I’m not getting,” said Waters, who’s 33. “That is just very hard.”
Research shows after you’ve had it once, you’re unlikely to get monkeypox again. Still, the virus was so rough on Waters that he was desperate to get a vaccine. On Saturday he drove two hours to Jersey City to get vaccinated — the closest appointment he could find.
How small is too small a sample size?
The Philly Health Department has two reasons for declining to release case or vaccine data broken down by race, according to spokesperson Kyle. One: officials don’t want to release demographic info that could out people.
And two: Calling the almost 2,000 doses administered so far a low number, they say racial demographic data wouldn’t be meaningful.
“When the data starts to smooth and single day changes in administration data no longer affect the overall breakdown,” Kyle said, “we will work towards releasing it.”
Some health experts don’t agree with that line of thinking.
“2,000 is a good sample size,” said Blackstock, the physician from New York. “So you should be able to draw some reasonable conclusions about whether these vaccinations are reaching the community.”
Other places with far fewer cases and vaccine doses are already sharing data broken down by race. In California, Santa Clara County has shared demographic data for just 39 total monkeypox cases.
Bebashi executive director Tate is willing to be patient with Philly’s Health Department — but she wants the data, too. In the meantime, she said the city could help community-based organizations like hers by providing universal info to share with their patients, like videos or pamphlets about monkeypox.
“I believe in giving grace,” Tate said. “But at some point, we will need to see where we’re starting: who got it first, where it’s going, where it continues to go and what those patterns look like.”