In early 2022, New York City Health + Hospitals opened some of the country’s first public clinics for long COVID. The three COVID-19 Centers of Excellence, located in the Bronx, Brooklyn and Queens, offer primary care along with a variety of specialists for New Yorkers facing long-term symptoms after a coronavirus infection — though long COVID advocates said the clinics lack some necessary specialists.
The clinics have fielded about 25,000 appointments, with patients receiving care for long COVID as well as preventative screenings and other healthcare needs. Millions of New Yorkers have caught COVID-19, and studies suggest 10% to 30% might develop at least one lingering symptom. Health + Hospitals officials fear not enough people are taking advantage of the care resources available to them.
That’s because long COVID patients can have a wide variety of symptoms — some subtle but debilitating, others severe. The symptoms range from brain fog to muscle pain to heart issues, all of which can require different tests and specialist visits. The condition is defined broadly, and there isn’t yet a set procedure to diagnose all patients.
Most patients arrive at the Centers of Excellence through AfterCare, a free hotline that connects New York City residents with the clinics as well as financial resources, paid sick leave, disability payments and housing assistance.
Staffers at the Tremont COVID Center of Excellence perform administrative tasks. This clinic, along with the two other centers, have fielded about 25,000 appointments so far.
The AfterCare program proactively contacts New Yorkers who had previously taken part in the city’s Test & Trace program during the heightened days of the pandemic. But administrators are concerned that many people who need long COVID care remain unaware of the centers.
As more people rely on at-home tests rather than getting swabbed at health care sites, fewer positive test results — and thus, fewer people who might get long-term symptoms — are making it into the Health + Hospitals system.
“If you're doing less testing, you're going to find less cases, and therefore you're going to have less people who know their risk for long COVID,” said Dr. Ted Long, executive director of the Test & Treat Corps and senior vice president of ambulatory care and population health at Health + Hospitals. He worries about “people that are suffering in silence” with concerning symptoms.
In addition, the clinics may not offer all the specialist options needed for long COVID, particularly for patients who have more complex symptoms, patient advocates said. "The Long COVID Survival Guide," a collection of essays by current patients intended to help new sufferers that was edited by Fiona Lowenstein, a journalist and founder of the long COVID support group Body Politic.
The survival guide lists more than 50 potential diagnostic tests people could take. It also also suggests that patients look for doctors who have experience in treating other chronic illnesses that can result from viral infections or immune system dysfunction, such as dysautonomia and autoimmune conditions.
Staff at the Centers of Excellence have evolved their understanding of common COVID-19 symptoms as the research on this disease has progressed.
“As patient advocates, we appreciate that the city of New York appears to be trying to make resources available to all people with long COVID, regardless of test status or ability to pay,” local advocacy group Long COVID Justice NYC said in a statement. “But much more is needed for this large-scale crisis that may affect as many as one in three New Yorkers.”
“We urge the city to immediately increase public and medical education about long COVID,” the group said, along with establishing more centers and better incorporating "post-viral research, knowledge and expertise" into their operations.
This could include directly hiring people with long COVID and associated diseases, the group added.
Setting up the Centers of Excellence
After New York City’s first COVID wave in 2020, doctors began to recognize some patients weren’t recovering in two weeks, the initial disease window. People with lingering symptoms such as trouble breathing, cognitive challenges, gastrointestinal issues, and much more later became known as long COVID patients.
Upon realizing that “long COVID was going to be very serious for New Yorkers,” Health + Hospitals quickly began work on facilities that could address this growing crisis, Long said.
The hospital system wasn’t alone. About 30 long COVID clinics operate in the greater New York City metropolitan area, more options than any other place in the country, according to Science News.
Normally, a site like this would take six years to build out. We built it in six months.
New York City is also a hub for long COVID patient advocates, many of whom got sick during the first wave. One example is Body Politic, a Slack-based support group that has contributed to research and increased awareness of the condition. More than half of the group’s current members are New Yorkers, thanks in part to a partnership with Health + Hospitals, President Angela Vázquez said.
Health + Hospitals situated its three Centers of Excellence in neighborhoods that had been disproportionately impacted by the pandemic: Tremont in the Bronx, Jackson Heights in Queens, and Bushwick in Brooklyn. The city constructed the centers far more quickly than typical projects, thanks to collaboration with partners such as the city’s Department of Design and Construction.
“Normally, a site like this would take six years to build out,” Long said. “We built it in six months.”
Long COVID patients and independent medical providers have contributed advice on the city’s Centers of Excellence — through venues such as a virtual symposium hosted by Health + Hospitals and the Department of Health and Mental Hygiene in June 2022. The hospital system also worked with community organizations and elected officials while setting up the centers, said Health + Hospitals spokesperson Adam Shrier.
This primary care room at the Tremont COVID Center of Excellence is designed with a special ventilation system to prevent the coronavirus from spreading while treating a sick patient.
Doctors specializing in the respiratory system can use this machine to examine long COVID patients’ lungs, in a procedure called a pulmonary function test.
But advocates would like to see more direct engagement to help the clinics better meet patient needs. They suggest that Health + Hospitals could use a patient advisory board: In this structure, a group of patients who would regularly meet to provide feedback, allowing the health care sites to learn from their personal experiences with long COVID.
Among the patients who have received care at the centers so far, the majority have been Hispanic or Latino, according to data from Health + Hospitals. That includes 56% of patients at the Bronx clinic, 79% of patients at the Queens clinic, and 46% of patients at the Brooklyn clinic. Hispanic New Yorkers and those living in the Bronx have been more likely to experience long COVID symptoms than other groups, according to data from a health department survey reported by news outlet The City.
'One-stop shop' for primary and specialist care
Long described the Centers of Excellence as a “one-stop shop” for different types of medical care. Walking through one of the center’s brightly lit hallways, a visitor can encounter pulmonologists (lung doctors), cardiologists (heart doctors), primary care physicians, women’s health specialists, and even dentists just down the hall from each other. The centers also offer pediatricians, social workers and behavioral health therapists.
At one of the centers, a first visit for long COVID would be a standard intake appointment designed to identify key symptoms and refer patients to the appropriate doctors, sometimes sending people elsewhere in the Health + Hospitals system if needed. Providers are told to watch for shortness of breath, fatigue, brain fog and loss of smell, Shrier said.
But research has identified more than 200 symptoms among long COVID patients. One understated example is post-exertional malaise, a dramatic worsening of symptoms after mental or physical activity that is common for people with long COVID.
It’s important that patients are screened for post-exertional malaise and provided resources on pacing, a technique that can help manage this symptom, said a local long COVID patient and advocate who asked to remain anonymous due to privacy concerns.
The best long COVID clinics are multidisciplinary in nature and help with a variety of needs, whether that be physical, emotional, or social.
“It is really scratching the surface to offer cardiology and psychology to long-haulers,” the patient said. More comprehensive care would include higher-level tests informed by past research into other post-viral illnesses, she added. This could include brain scans, higher-level assessments of the lungs and respiratory system, detailed blood analysis, allergy tests, and examinations of the gut.
Key to the intake process is listening to patients, Long said. He instructs Health + Hospitals providers to pay attention to the symptoms that are the most debilitating or the most scary for patients — and to respond with care and reassurance. Such reassurance is crucial for a condition that’s led many people to experience gaslighting from medical providers.
Unlike other long COVID clinics, patients do not need a positive test result to make an appointment at the city’s centers because some people with long-term symptoms did not have access to a test when their illness started. Potential patients also don’t need a particular type of insurance: Health + Hospitals will treat people with any coverage or those who are uninsured. And there’s no waitlist for appointments, Shrier added.
While COVID-19 inspired their creation, the facilities also offer care unrelated to long COVID. The available range of services is designed to make it easy for patient to come in with their families and receive preventative screenings, like mammograms or bone density tests.
While the COVID Centers of Excellence specialize in long COVID care, patients can also receive a mammogram using this machine, among other preventative screenings.
Patients can see several different specialists the same day, said Lata Singh, chief operating officer for Health + Hospitals/Gotham Health. “They’re spending a day with us, they’re getting everything they need,” she said. These multi-appointment visits can be critical for patients who can’t take tons of time off to visit a clinic, such as essential workers.
“The best long COVID clinics are multidisciplinary in nature and help with a variety of needs, whether that be physical, emotional or social,” said patient advocate Rachel Robles. The Centers of Excellence notably include social workers, who can help patients access services beyond their medical needs such as applications for disability benefits.
More outreach and resources needed
New Yorkers can learn more about long COVID and get connected to the Centers of Excellence through AfterCare, a Health + Hospitals program launched in March 2022. The program is accessible online or by calling 212-COVID19 (or 212-268-4319) and selecting option four.
AfterCare navigators, many of whom previously served as the city’s contract tracers before that program ended this spring, have also proactively reached out to people who previously tested positive.
The program has completed about 350,000 phone calls since its launch, 43,000 of which have led to people connecting to COVID-related services, according to Health + Hospitals. About 17,000 calls led to new patients visiting the Centers of Excellence. Still, compared to the number of New Yorkers who may be suffering from long-term symptoms, more people could likely benefit from outreach to learn about available resources.
“A lot of people aren’t aware that care is available for people with long COVID symptoms,” said Stephanie Cummings, an AfterCare navigator. She most frequently refers people to the clinics and to NYC Well, a free mental health support network, she said.
AfterCare calls can also be valuable for New Yorkers who aren’t experiencing long COVID, but still face financial ramifications from COVID-19, said navigator Paola Rendon. People frequently “request cash assistance,” she said, as well as support for rent, utility payments and buying food.
“If I could wave a magic wand, I would love to have every New Yorker know about 212-COVID19,” Long said. Health + Hospitals has started handing out information about the AfterCare hotline at the city’s numerous distribution sites for at-home tests. But Long remains concerned that the program is missing people as fewer New Yorkers seek testing at clinics.
Patient advocates share this concern. Ethel Khanis, a patient living in Brooklyn, suggested that city agencies put up billboards and bus stop signs to increase awareness, similar to what the city has done for other public health campaigns.
“The first step is literally informing people that this is a thing,” she said.
People can also access mental health care and peer support for long COVID through Health + Hospitals’ partnership with the Body Politic support group. But funding issues could lead the group to shut down in 2023, as it shifts from a volunteer operation to a more sustainable organization.
As ongoing research provides new insights about long COVID symptom management and potential treatments, the Centers of Excellence will need to evolve to continue meeting patients’ needs, Long said. The city’s centers may also serve as an example for other jurisdictions across the country, as the Biden administration seeks to fund more long COVID clinics.
“I’m the last person to sit here and tell you the program is perfect,” Long said. “The goal is, as we learn more, to have the program be able to adapt.”
