The Mount Sinai Health System’s new Center for Post-COVID Care has become an increasingly in-demand resource for so-called “long-haulers,” those who, for unexplained reasons, experience lingering health issues months after contracting COVID-19.

The demand has increased to the point where the Center is now onboarding more staff to help ease its growing backlog of prospective patients, some of whom have been told they have to wait months for an appointment.

“We knew that there was a very long wait time and, while we knew that, it’s very hard to quickly escalate the availability of appointments,” said Dr. Zijian Chen, the medical director for the Center for Post-COVID Care. “We spoke to our leadership and let them know how difficult it was to accommodate all the patients and they were very happy to give us assistance.”

The Center, which has seen some 550 patients since it opened four months ago at Mount Sinai's Union Square location, currently has five health care providers carrying out initial intake appointments and more than 25 specialists to whom patients can be referred. The Center is bringing on a nurse practitioner and physician assistant from a different unit in the health system to help increase capacity, Chen said. He said that will make it possible to bump up existing appointments and shrink the wait time for new ones.

Gothamist reached out to Mount Sinai about the wait time for an appointment after a reader, Francine Perlman, said she called the center last week and was told that the next available appointment was six months out -- in March 2021.

“I said, ‘I hope I don’t need it by then, but OK, I’ll take it,’” Perlman, 75, told Gothamist.

Perlman, an artist based in Morningside Heights, said she initially got sick with COVID-19 in late February (she never had a diagnostic test but has since tested positive for antibodies). While initial symptoms such as a cough and chest pain went away, she said months later, she still experiences headaches and sudden debilitating episodes of fatigue--symptoms other self-identified COVID-19 long-haulers have reported as well.

Chen said he was surprised that Perlman was told she couldn’t be seen until March and that it was likely an error. “I can tell you that person will not have to wait until March,” Chen said. “I can assure you she will be seen in the next month or month-and-a-half.”

Because the Center for Post-COVID Care was established to conduct research on the potential long-term health outcomes of COVID-19 in addition to providing care, it has so far prioritized patients who have tested positive for COVID-19 or for antibodies, which can develop as part of the immune system’s response to the disease. But Chen acknowledges that it’s a flawed system and says he is working on getting appointments for people who were waitlisted by the Center because they lacked a positive test.

“Initially, what we were designed to do was take care of patients we knew had COVID-19, meaning they had a positive PCR test or had a positive antibody test, so we’re sure these are [COVID-19-related] symptoms and can enroll them in research,” Chen said. “But even from the beginning, we realized you have patients who didn’t get tested in New York and around the country and there are patients who may have had a not-so-good test because testing was not perfect.”

COVID-19 diagnostic tests were harder to access early in the pandemic and many patients were simply told to stay home if they were sick in order to conserve resources and prevent the spread of the disease. Meanwhile, the reliability of antibody tests has been called into question and experts have said they are more useful on a population level than for determining whether an individual has had COVID-19.

Some patients say they have already been able to find an alternate route to get post-COVID-specific care at Mount Sinai without a positive test. One self-identified long-hauler told Gothamist she got an appointment by calling Mount Sinai’s Abilities Research Center, whose doctors also work with the Center for Post-COVID Care. But Mount Sinai would not confirm with Gothamist that this is an option.

The inclination to put certain criteria in place to identify long-haul patients for the purpose of research is understandable. The symptoms COVID-19 long-haulers report are extremely wide-ranging and there is a risk that some people may think they fall into that group, but are, in fact, suffering from an unrelated health issue.

“Part of the challenge is separating out these patients from patients who had COVID-19,” Chen said.

Adina Gerver, a Washington Heights resident, still suffers from extreme fatigue as well as ear, throat, and chest pain months after getting sick with COVID-19 in March. She says she was able to get an appointment at Mount Sinai’s Center for Post-COVID Care in about three weeks when she reached out in mid-July and appreciates that the model combines research and care.

“I feel like Mount Sinai is a little bit helping people and a little bit studying people and all of it is fine with me because I feel like they’re going to learn things that will help everyone,” Gerver said.

Many with lingering health issues related to COVID-19 have struggled to find doctors with knowledge of what they’re going through and have turned to long-hauler message boards, where people sometimes share resources, including the names of health care providers that have been responsive. The Body Politic support group for long-haulers even created a Google Doc with names and contact info for recommended doctors, some of whom are based in New York.

Others in long-hauler support groups have questioned the value of seeking out formal medical care, saying tests have been inconclusive and treatments haven’t worked. There’s also been the issue of whether insurance companies will even cover treatment costs of patients with long-haul symptoms.

It’s unclear exactly what percent of people who contract COVID-19 suffer from prolonged health issues. But Chen says he is concerned that, with more than 460,000 cases of COVID-19 reported in New York so far, the number of New Yorkers who need long-term care will be “more patients than any health system can bring in on a dime.”

This story is part of PriceCheckNYC, a project dedicated to transparency in health care from Gothamist, WNYC and ClearHealthCosts.