Long COVID Patients Are Waiting Months for Care, and the Problem May Only Get Worse
In March 2020, Laura Fitton, a 50-year-old entrepreneur in Massachusetts, had a high fever, sore throat, gastrointestinal issues, and loss of taste. But at the time, few of those symptoms were linked to COVID-19, so Fitton wasn’t eligible for a test. It took seven more months of persistent symptoms—including brain fog, swollen joints, fast heart rate, chills, and fatigue—for a doctor to order an antibody test. Although the test came back negative—perhaps because of how much time had passed since she had gotten sick—Fitton was relieved that a doctor was finally exploring the possibility of Long COVID, a little-understood condition in which people suffer symptoms long after their acute infection passes.
Two years after her initial illness, getting care is still a battle. She must wait until July for a simple screening call with a Long COVID clinic in Boston, and until this October for a neurologist to walk through the results of tests he ran on her in November 2021. In the meantime, she’s mostly on her own to manage her symptoms, which are still present but have improved significantly since she got vaccinated last year. “I can’t imagine what this is like for somebody who’s in the condition I was in,” she says, “and is just getting stonewalled everywhere.”
So many people are suffering from Long COVID that treatment centers can’t keep up. In many ways, that’s understandable: the diagnosis did not exist before 2020. New York City’s Mount Sinai Health System was one of the first places in the country to launch a post-COVID-19 recovery center, in May 2020. By early 2021, many top U.S. hospitals, including the Mayo Clinic, the Cleveland Clinic, and Massachusetts General Hospital, had taken notice and opened their own practices. There is now at least one Long COVID treatment clinic in almost every U.S. state, according to a directory kept by Survivor Corps, a COVID-19 and Long COVID patient-support group.
TIME Illustration. Viral cell icon: Getty Images
As many Americans begin to wonder if there’s a light at the end of the COVID-19 tunnel, new clinics are continuing to open across the country, an acknowledgment that Long COVID symptoms won’t disappear even if the pandemic fades. After treating long-haulers—the name sometimes given to people who have Long COVID—virtually throughout the pandemic, cardiopulmonary physical therapist Noah Greenspan opened a brick-and-mortar pulmonary-rehab center in New York City in December because, he says, “We need action, not lip service,” to solve the Long COVID problem. Indiana’s Parkview Health also opened a clinic for pediatric Long COVID patients in December, and Madonna Rehabilitation Hospital in Nebraska opened a recovery center the same month.
Even with this progress, medical care has not kept pace with the overwhelming needs of patients, given how many people report months-long waits for care or can’t find it at all. With research about Long COVID and its treatment still in its early stages, there is no guarantee of recovery even for those lucky enough to get into a specialty clinic.
“I’m pleased to see the growth of the post-COVID care centers,” says Diana Berrent, who founded Survivor Corps after testing positive for COVID-19 in March 2020. But “I’ve yet to see where they are really moving the needle in terms of actually getting people better.”
It’s not clear how many Long COVID patients there are in the U.S. In 2020, researchers estimated that between 10% and 30% of people with COVID-19 would develop long-term symptoms. That percentage is probably lower among people who have been infected after being vaccinated, given that studies have shown that being vaccinated significantly reduces the odds of developing Long COVID.
The U.K. has a better understanding of the scope of the problem. According to data published in January by the U.K. government, about 1.3 million people there said they were living with Long COVID as of December 2021. Estimates vary for the U.S., but authors of a paper published in August 2021 in the New England Journal of Medicine estimated that at least 15 million people in the U.S. would have Long COVID by the pandemic’s end. However, that was published before the emergence of the highly contagious Omicron variant, which has already produced a record-shattering number of cases—some of which are likely to develop into Long COVID.
Rebecca Stumpf for TIMEAmber Rausch’s blood pressure is taken during Long COVID testing
The U.S. health care system can barely keep up. Because people with Long COVID have reported more than 200 distinct symptoms, they often require care from clinicians in multiple specialties, from pulmonology and neurology to gastroenterology and psychiatry. Stanford’s Post-Acute COVID-19 Syndrome Clinic, for example, tries to use its slim staff most efficiently through a hub-and-spoke model, explains co-director Dr. Linda Geng. Each patient is examined by one of the clinic’s staff physicians and, if necessary, is then referred to a specialist. The clinic analyzes five or six new patients each week, Geng says—but it has a months-long waitlist.
To see more patients, the clinic would need not only more physicians, but also more nurses, medical assistants, and billing coordinators, Geng says. That’s no small order, given the personnel shortages that have plagued the industry since before the pandemic. In 2019, the U.S. had an estimated 20,000 fewer doctors than necessary to meet demand. Now, after mass resignations and with rampant staffing issues because of Omicron, hiring extra health care workers is even more challenging.
Long waits are also partly due to the criteria many clinics require new patients to meet. Many care centers treat only people who had a laboratory-confirmed COVID-19 diagnosis. But many people with lingering symptoms—particularly those who got sick in the spring of 2020, before tests were widely available—never got a positive COVID-19 result.
Dr. Brad Nieset, a family-medicine physician, runs one of Montana’s only Long COVID treatment clinics, Benefis Health System’s Post-COVID-19 Recovery Program. He does not require a positive test result from his patients. “No matter what, they called me because there’s a problem,” he says. The clinic has treated about 600 people so far and currently has a waitlist about a month long.
To help triage the requests, Nieset begins with a telehealth consultation. Then, when patients come into the clinic—sometimes driving from hundreds of miles away—his team performs a comprehensive physical and mental assessment to decide who can be treated by a primary-care provider, and who needs care from specialists.
Long COVID clinics must rely heavily on primary care to meet surging demand, says Dr. Gavin Yamey, associate director for policy at the Duke University Global Health Institute. There aren’t enough specialists, and many people can’t afford their services anyway. “It begins in primary care,” Yamey says. “There needs to be awareness and recognition of the condition, and health care providers need to understand what the care pathway looks like.”
The problem is, nobody fully understands how to cure Long COVID. In that regard, it’s similar to other mysterious and complex chronic illnesses like myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), chronic Lyme disease, and fibromyalgia. “To be frank,” Geng says, “we don’t have a curative therapy.”
Still, people have recovered from Long COVID. Some, like Fitton, improve after vaccination, although experts aren’t sure why it happens; others have damage to a specific organ or an underlying illness that is fairly straightforward to treat; and others simply get better with time.
Amber and Mike Rausch, both of whom are 53 and in treatment for Long COVID at the Benefis clinic in Montana, are two such success stories. Both husband and wife caught COVID-19 in late 2020 and experienced symptoms well into 2021: complete exhaustion for Mike and brain fog and excruciating headaches for Amber.
Rebecca Stumpf for TIMEDr. Brad Nieset talks with Mike and..