More people have been diagnosed with MPV in New York City than in any other city in the country. With people of color accounting for more than three quarters of MPV cases in New York City, the outbreak has had especially devastating effects in the city’s neighborhoods of color. That includes Harlem, where Black and Latinx people account for three out of four residents.
Harlem United, a federally qualified health center that serves as a critical safety net for the neighborhood, immediately responded. One of the leaders of New York City’s response to HIV, Harlem United in 2021 served more than 10,000 clients, delivered more than 21,000 medical visits, and prevented more than 600 people from becoming homeless through the provision of supported and emergency housing. Seventy-five percent of Harlem United’s clients are homeless or unstably housed, and the organization also serves as key medical and social service provider to a large west African immigrant community.
“For Harlem United, our main role has been trying to connect our patients who may have been exposed to MPV or are at risk to testing, treatment and vaccination sites,” says Jacqui Kilmer, Harlem United CEO. “We help our clients maneuver through the red tape and get the appointments they need. That has not been an easy thing to do.
“We have been, along with everyone else, completely frustrated with the very slow response to MPV. The whole health care system in New York is worn out from COVID. I get that. But that is not an excuse for the response being as inadequate and as slow as it has been.”
Kilmer’s frustration with the MPV vaccine started at the very beginning of the outbreak, when New York City was initially allocated a small amount of the vaccine, even though the city’s MPV caseload was far and away with the highest in the country. That has since been corrected, but “with that as a starting point we all started off with a bad taste in our mouths,” she says. “We soon had the feeling that MPV was very much seeming to look, feel and sound a lot like the beginning of the HIV epidemic.” The alarming echoes of early inaction during the AIDS crisis has caused what Jacqui describes as “heartbreaking trauma” in her community, especially among long-time survivors of HIV.
Although vaccine supplies have improved, the Harlem community confronts multiple challenges in promoting vaccine uptake. The stigma associated with MPV remains intense. Kilmer cited the story of a Harlem resident who was admitted to the hospital after being diagnosed with MPV. “He relayed how the security guards and some of the floor staff at this hospital and even some of the providers were commenting about his MPV and not wanting to go anywhere near him. It is liking watching the early days of AIDS all over again.”
Medical mistrust remains another challenge, compounded by the shifting messaging on vaccination. “After the change in the way the vaccine is administered, we are hearing from people and from the LGBTQ+ community questions about why they weren’t doing it that way from the beginning,” Kilmer says.
To respond to MPV in the community, Harlem United has intensified its outreach, but it has done so without government support. “We are not getting adequately funded to do the things we have had to do to response to MPV,” she says. “Our medical visits may be paid by Medicaid, but we have to do additional outreach work, our providers have to spend additional time with our patients, and our jitney driver spends more time in the field to bring community members to the clinic. None of that is supported or funded.”
Last month, the New York City Department of Health and Mental Hygiene announced a program to provide grants to community groups to help close MPV racial and ethnic disparities. However, Kilmer says health officials told community groups they wouldn’t get reimbursed for program costs for at least six months. “You need to hire new staff, maybe purchase a new van, recruit and train new peer workers, but you don’t have money coming in to cover those costs. Basically, they’re asking community groups to figure out a way to bridge the gap between starting the program and when the money is going to become available.”