Since testing positive for COVID on December 10, 2020, 47-year-old Sherry Flynn of Goldsboro, N.C., has been plagued by a long list of ailments, including severe fatigue, blood clots, chronic headaches, rapid heart rate, general body pain, trouble with thinking and remembering, and type 2 diabetes. And she has accumulated a shelf filled with prescription medicines. About two months post-diagnosis, Flynn’s primary care physician referred her to a recently opened facility: the COVID Recovery Clinic at the University of North Carolina at Chapel Hill (UNC) School of Medicine. “She said, ‘I can treat you for all your symptoms, but I believe they could maybe find other ways to help you to rehabilitate yourself instead of just putting you on all these medications,’” Flynn says.
The clinic sees many such patients, commonly known as long haulers. On a Tuesday afternoon in May, eight of them arrived at the facility to see a team of therapists and physicians. Like Flynn, each patient hoped to find, if not a cure, at least a reprieve from the myriad symptoms that had afflicted them for months in the wake of their COVID diagnosis. Over three to four hours, these people went through an exhaustive medical workup by a variety of specialists. A rehabilitation physician, an internist, a psychiatrist, a neuropsychologist, a physical therapist and an occupational therapist cycled through each patient’s exam room to assess their condition. “It’s a big effort for them to come for half a day, and we want to make sure it’s worth their while,” says the clinic’s co-director John Baratta, who developed this multidisciplinary approach.
Baratta believes coordinated care among these specialists offers the best chance to put patients on the path to recovery. Such coordination treats the whole patient instead of dealing with each symptom as its own ailment. Similar clinics have been opening across the U.S., as doctors search for the best ways to treat a new, perplexing and multifaceted ailment with no proved therapies. Clinic managers are concerned, however, that few people of color are being referred to these facilities.
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Long-term effects are turning out to be common. A study published in June in the journal Nature Medicine looked at about 300 patients in Bergen, Norway—almost all of the patients diagnosed in the city during several months in 2020. Six months after their initial diagnosis, 61 percent of the group had persistent symptoms. The most common problem was fatigue, followed by difficulty concentrating, disturbed smell or taste, memory trouble and difficulty breathing. Many of these patients were younger, aged 16 to 30, and initially had only a mild or moderate case of COVID. Another study, published in February in the journal JAMA Network Open by researchers at the University of Washington, suggests that around 30 percent of COVID patients may experience ongoing problems that range in severity—such as fatigue, loss of taste or smell, and trouble breathing—at least four weeks after they no longer test positive for the infection. Some people reported symptoms months later. In April the U.S. Centers for Disease Control and Prevention’s Morbidity and Mortality Weekly Report found that 69 percent of nonhospitalized adult COVID patients in Georgia had one or more outpatient visits 28 to 180 days after their diagnosis, and many of these people had symptoms potentially related to the original disease.
The whole cluster of long-term COVID symptoms—like Flynn, many people have several—has been named post-acute sequelae of SARS-CoV-2 infection (PASC) by the National Institutes of Health, which announced that it will spend $1.15 billion over the next four years to study these effects.
The new clinics also are studying the condition as they try to treat it. Many, such as UNC’s, are based at academic medical centers where patient care is married with ongoing research in an effort to better understand what causes these persistent problems, predict who is most vulnerable and devise the best treatments. Baratta started thinking about starting the UNC clinic last year when he noticed that some patients in his physical medicine and rehabilitation practice took longer than expected to recuperate from COVID. “Most people would recover within just a few weeks, but we started to see people with lingering and really significant debilitating effects that lasted for months,” he says. “We realized the need for specialty care.”
The UNC facility opened in February to treat patients who are at least 18 years old, have been referred by a physician, have had a positive coronavirus diagnosis and have been experiencing post-COVID symptoms for at least four weeks. “It is really striking to me how many people who had a more mild illness have these persistent symptoms,” Baratta says, echoing the findings of the Norway study. “Probably over three quarters of patients we see were never hospitalized for COVID.”
The UNC facility is the only long COVID clinic in a lengthy, heavily populated stretch of the southeastern U.S. between Atlanta and Washington, D.C. Baratta says its capacity to see patients is dwarfed by the number who need help. To date, the clinic’s team has evaluated just more than 300 people. Some have sustained damage to their lungs, heart, kidneys, brain or other organs. Others experience fatigue, headaches, cognitive problems commonly called “brain fog” and difficulty breathing but have no discernible organ damage.
Lacking established therapies specifically for long COVID symptoms, physicians are feeling their way through treatment protocols, mostly relying on approaches that have been used successfully in other ailments with similar symptoms. A patient diagnosed with post-exertional malaise, a type of fatigue caused by mental or physical activity, will undergo a series of heart and lung tests and get a blood panel analysis to evaluate their electrolyte, vitamin and thyroid levels. The idea is to rule out other contributing medical conditions before putting the patient on a rehabilitative exercise regime. Neurological stimulants such as Adderall, Dexedrine and Ritalin have proved effective at improving energy and focus. Albuterol—an inhaled medicine frequently used to treat asthma—inhaled steroids and breathing exercises have improved breathing.
Finding the right treatment is a learning process, and resources remain scarce. “We’ve focused our efforts on people who have a confirmed history of COVID so we can better use our resources within the clinic. And we’ve changed the evaluation measures to better target the people we see,” Baratta says.
The people the clinic sees may not represent many of those with problems, however. Eighty-one percent of the patients referred to UNC are white, and 17 percent are Black. (The remaining 2 percent of patients comprise several different groups.) This mix is similar to patients seen at other COVID clinics across the country.Because the disease itself has disproportionately hit people of color, the relative absence of Black patients is causing rising concern among public health officials and clinic managers. They worry that lack of access and of adequate health insurance, along with other social and economic barriers, are keeping many ill people of color from badly needed care.
During an April 28 hearing before the U.S. House Committee on Energy and Commerce, John Brooks, chief medical officer of COVID response at the CDC, said that racial and ethnic minority populations and other disadvantaged communities have almost certainly suffered a greater impact of long-term ailments. “We do believe that they are likely to be disproportionately impacted by these conditions as they are … less likely to be able to access health care services,” he said.
This disparity also worries Monica Lypson, until recently the co-director of the COVID-19 Recovery Clinic at the George Washington University’s Medical Faculty Associates in Washington, D.C. “We know that there are populations that are more affected by COVID. But when we look at long COVID, you’re not seeing the same demographic data,” says Lypson, who just moved to Columbia University. She notes that in addition to access barriers facing disadvantaged populations, members of such groups may not seek help because of previous negative experiences with the health care system. “I would like to see more diversity in our clinic because I know they’re out there,” she says.
Flynn is having a positive experience at UNC. Her treatment includes physical rehabilitation and speech therapy. She is also considering mental health counseling for the depression caused by her months-long illness. Although her progress is slow, Flynn says she is grateful to have doctors who know what it means to be a long hauler.