Four years after Covid-19 first hit New York City, the disease is no longer a day-to-day concern for many New Yorkers. City testing sites have closed, businesses and public spaces no longer require masks, and leaders have encouraged people to return to pre-pandemic habits—but forgetting about Covid-19 is impossible for the thousands of people in the city now dealing with Long Covid, the chronic disease that can last for months or years after infection.
Once an early epicenter for Covid-19, the city has now become an early leader in responding to Long Covid. The health department and Health + Hospitals, the public healthcare system, both have unique programs to understand this complex, chronic disease and meet patients’ needs, particularly in communities that have been hardest hit by the pandemic.
The health department recently launched a new survey to study Long Covid and other long-term impacts of the Covid-19 crisis, which will follow up to 10,000 participants over several years and inform new programs for people dealing with these health issues. Meanwhile, Health + Hospitals is now two years into operating three Covid-19 Centers of Excellence—public clinics for Long Covid, along with a hotline that connects New Yorkers to the clinics and other resources.
New York City has served as a model for other state and local health agencies trying to tackle Long Covid, said Kate Murray, program manager of the Minnesota Department of Health’s Long Covid program. For example, MDH “took a lot of the inspiration from our statewide survey” thanks to research done in New York City, she said.
“I’m happy to see that there is more light being shed on Long Covid and that there are a lot more resources out there now than they were back when I first started to experience symptoms in the fall of 2020,” said Evette Alba, a New Yorker living in Manhattan.
However, some Long Covid advocates and community leaders say the city could and should be doing more to address this disease. In particular, advocates say that people with Long Covid need more protection from new Covid-19 cases and more services that go beyond healthcare, such as access to food, housing, employment accommodations, disability benefits, and more.
“I think the services that were provided for Covid—they ended too suddenly,” said Reverend John Udo-Okon, pastor of the World of Life International Church, which runs a food pantry and other support programs for the church’s South Bronx community.
Udo-Okon worries that, while programs like the health department survey may lead to useful recommendations for new Long Covid services, the information may arrive too late for some people who are currently suffering.
“People need help now,” Udo-Okon said. “People need to know where they can go for treatment, where they can go to get food, where they can get health insurance.”
Public clinics offer multidisciplinary care
One of New York City’s most unique Long Covid services is the Covid-19 Centers of Excellence—public clinics for New Yorkers dealing with Long Covid or other health issues after Covid-19 infection. Unlike the Long Covid clinics operated by private hospitals and research institutions, the Centers of Excellence are “committed to providing every New Yorker with care in a holistic fashion, with dignity and respect, regardless of your ability to pay,” said Dr. Amanda Johnson, a primary care doctor and director of the AfterCare hotline at Health + Hospitals.
Health + Hospitals runs three of these centers, each in a neighborhood that was hard hit by Covid-19: the West Bronx; Jackson Heights, Queens; and Bushwick, Brooklyn. All three opened in early 2022 and have since seen more than 60,000 patient visits in total.
Thanks to funding from the city, Health + Hospitals was able to renovate new spaces specifically for Long Covid care. The facilities include primary care doctors, as well as a variety of specialists, from lung and heart experts to mental health services and reproductive health. The clinics can also connect people to social workers and other services.
With many specialists in one place, the Centers of Excellence make it easy for patients to see multiple doctors or have different tests done in one visit, Johnson said. “I wish more patients had access to something like that.”
Alba, who started experiencing Long Covid symptoms in 2020, said she’s glad that new patients have more resources available than she did then. “When I look back at those first few months, I felt very alone and no one had any answers for me,” she said.
To make an appointment at the Centers of Excellence, New Yorkers dealing with Long Covid symptoms can call the AfterCare hotline at 212-COVID19 or 202-268-4319. This hotline evolved from Health + Hospitals’ contact tracing efforts earlier in the pandemic, but is now a more permanent program connecting people to different resources they may need after a Covid-19 case, Johnson said.
For people who call the hotline, the Centers of Excellence are “the top resource we promote for patients who really want to connect with medical care,” Johnson said. AfterCare may also refer callers to other Long Covid clinics in the city that aren’t located near one of the three Centers of Excellence, although Johnson acknowledged that different clinics may be stricter about insurance or have other requirements, such as asking patients to show positive Covid-19 tests.
After medical care, the most popular resources for AfterCare callers are NYC Care, a public health insurance program, and mental health resources. Unfortunately, other resources that were present early in the pandemic, like emergency cash and rental assistance, are no longer as available as in the past, even though people may still need them, Johnson said. AfterCare is also no longer able to refer patients to a Long Covid peer support group that closed last spring due to limited funding.
In response to that group’s closure, the city should create and fund other peer support options for people with Long Covid, said Gabriel San Emeterio, an advocate with the group Long Covid Justice who is living with Long Covid as well as HIV. There should be “support groups that are culturally attuned so that they can serve different communities,” San Emeterio said. Alba agreed that she’d like to see more support groups in New York City, because she has found them beneficial.
Collecting data to understand community needs
The health department’s recently announced long-term survey may inform new programs for New Yorkers struggling with Long Covid and other challenges following Covid-19 cases. “We know that the end of an emergency must also be the beginning of a process of learning and understanding so we are better prepared and can support COVID survivors over time,” said Health Commissioner Dr. Ashwin Vasan in a press release announcing the study.
To study a wide range of potential Covid-19 impacts, the department will survey a random sample of New Yorkers rather than specifically recruit people who identify as Long Covid patients. The project, which will recruit up to 10,000 participants and follow them for several years, starting with an initial survey this spring, will be used to inform future policies and programs around Long Covid, according to a statement from the agency.
It’s important for local health agencies like New York City’s to study Long Covid because then they can ask questions that are more specific to their communities, said Murray. Surveys by federal agencies like the Centers for Disease Control and Prevention (CDC) provide a “10,000-foot view” and don’t capture local needs and challenges, she said.
Minnesota’s department is doing its own Long Covid surveys, similar to New York City. In both places, health officials are consulting with community members on the research. The New York City department has set up an advisory group that includes Long Covid advocates and leaders of organizations serving communities disproportionately affected by Covid-19. This group has “provided feedback on questions and topics to be covered in the first survey, as well as recommendations on survey accessibility,” said department spokesperson Patrick Gallahue in a statement.
Data from the survey “will inform policy makers and program planners on the needs and barriers to support services for those experiencing long-term physical and mental health problems,” Gallahue said. The current study builds on a smaller-scale study that the health department conducted in 2022, along with input from academic and government researchers, he said.
Udo-Okon, who has been involved with the advisory group, said he hopes the survey will help inform new Long Covid programs, but wants to make sure a diverse group of New Yorkers is represented in the data. People who may not have internet or smartphone access or have other barriers to conducting an online survey should still be included in research, he said.
Doja A., founder of local public health project the Health Stellium, who asked not to use their last name, similarly said the survey is “a good first step,” but has to include a wide variety of New Yorkers. Accurate data is important to establishing exactly how Long Covid is affecting the city—and which communities have been hardest-hit—so the city can “allocate funding appropriately,” they said.
The health department’s Long Covid research may expand further if a City Council bill is passed. This bill, introduced last fall by Councilmember Tiffany Cabán, would require the health department to assess “needs and gaps in services for people experiencing Long Covid and associated diseases in New York City.”
“Suffering a potentially debilitating illness is terrible enough without policymakers leaving wide-open gaps in the programs and services landscape,” Cabán said in a statement to the Amsterdam News and the Sick Times. “This community needs assessment will help us identify and understand those gaps, so that we can take action to address them and ensure that our neighbors who are suffering can get the care and support they are currently being denied.”
More direct services are needed
While New York City’s government has taken more action on Long Covid than other cities and states, health advocates like Doja and San Emeterio say the city could do more to support people who are currently sick, as well as those who are at risk of developing Long Covid.
“New York is continuing to talk about Covid as if it’s in the past,” Doja said. “It’s not. There are people still getting Covid… getting Long Covid every day.” They pointed to the city school district ending its required quarantine for students who test positive for Covid-19, after a recent guidance change from the CDC, as one example of a policy that could lead to more Long Covid cases.
To address the ongoing risks of Covid-19 and Long Covid, the city should continue to make tests, masks, treatments, and other resources easily available and advertise them to people, Doja said. The Health Stellium is fundraising to provide some of these resources, in the absence of more public services. While there are still a handful of public testing sites and a hotline to help people access Paxlovid, the Covid-19 antiviral, they’re poorly advertised and inaccessible for many New Yorkers, Doja said.
More outreach about Long Covid is crucial, said San Emeterio—“There needs to be a two-pronged approach: educating [healthcare] providers and educating the public.” Without public education, people who may be dealing with Long Covid may not recognize their symptoms and seek care, San Emeterio said.
In one initiative to improve outreach, the health department has supported a program called Building Resiliency and Vaccine Equity (BRAVE) that will fund community and faith-based organizations to raise awareness about Covid-19 and flu vaccines, as well as Long Covid. “Hopefully, this new program will put boots on the ground” and give people valuable information, said Udo-Okon, whose church received a grant from BRAVE.
Eric J. Chow, chief of communicable disease epidemiology and immunizations at the Seattle & King County health department in Washington State,, agreed that Covid-19 resources and communications can still be valuable for higher-risk people. “I know a lot of people who have Long Covid or are concerned about Long Covid feel like they’re left behind” when leaders take emphasis off Covid-19 precautions, he said.
Like New York City, the Seattle & King County health department is working on Long Covid research, although it doesn’t have the funding to conduct a survey like New York’s, Chow said. Additional federal funding for local agencies to address Long Covid would help more places follow NYC’s footsteps, he added.
Along with Covid-specific resources, many New Yorkers still facing long-term challenges from this disease need direct support for food, housing, employment, and other aspects of day-to-day life, Udo-Okon said. He remembers how, early in the pandemic, city agencies and many organizations collaborated. “Covid brought us closer together,” he said. “Finding ways to keep that mobilization is critical” in preparing for the next crisis.
This story was a collaboration between the Amsterdam News and the Sick Times, a nonprofit newsroom focused on Long Covid, related chronic diseases, and the ongoing Covid-19 pandemic.