At the University of Iowa (UI) Hospitals & Clinics, physicians in the UI Health Care Post-COVID-19 Clinic are fighting long COVID on several fronts.
They’re studying long COVID and post-acute sequelae of SARS-CoV-2 infection (PASC), looking for its manifestations and potential treatments. They’re trying to get the word out to primary care physicians about how best to treat long COVID patients and when to refer to specialist clinics like theirs in Iowa City. And, most urgently, they’re providing treatment—and hope—to those living in rural areas with this poorly understood condition.
Many patients “are just devastated by this diagnosis, devastated by the lack of support from the medical community,” said Lauren Graham, MD, MPH, a general internist and clinical assistant professor of internal medicine at the University of Iowa and one of the clinic’s two staff physicians. “We really have to take it seriously, even if that means we have to learn from our patients. … Patients don't have the time for us to wait and figure out exactly what this is, how it works and how best to treat it.”
The University of Iowa Hospitals & Clinics—a member of the AMA Health System Program that provides enterprise solutions to equip leadership, physicians and care teams with resources to help drive the future of medicine—started its long COVID clinic in the spring of 2020. That is when a massive outbreak of COVID-19 happened among Hispanic meatpacking plant workers. The mission quickly evolved.
“We began thinking we're going just to see pulmonary problems due to the fact that this was going to be a pulmonary disease,” said Alejandro Comellas, MD, a pulmonologist and clinical professor of internal medicine at UI who founded its long COVID clinic. “As we saw the manifestations presenting with the cognitive impairment, fatigue and a constellation of organ dysfunction, we thought that: Well, probably this clinic should be staffed mainly by general medicine.”
The clinic has served more than 800 patients in the three-plus years since its inception, with about 15 to 30 patients being seen each week, Dr. Graham said. Demand outpaces capacity, as it is the only specialist long COVID clinic in the Hawkeye State. In addition, research shows the condition is a not-uncommon result of COVID-19 infection.
In a partnership with the U.S. Census Bureau, the National Center for Health Statistics asked U.S. adults questions about long COVID as part of its Household Pulse Survey. Of the respondents, 11% reported having long COVID, according to data collected earlier this summer and published in Morbidity and Mortality Weekly Report. Among the survey respondents, 26.4% of those with long COVID reported significant activity limitations.
But what, precisely, is long COVID or PASC? It’s a question that physicians and researchers are themselves asking.
The terms PASC and long COVID are used interchangeably. However, some people in the field consider the term PASC to involve long-term injury to organs from the virus, while long COVID is an umbrella term that can encompass patients with PASC as well as those suffering indirect consequences of infection. However, a solid consensus around a sformal definition has yet to emerge, Dr. Comellas said.
“It is more a syndrome in the way that is described,” Dr. Comellas said.
For a study published in JAMA® in May, researchers analyzed data from nearly 10,000 patients to identify 12 symptoms most likely to exist in patients with PASC or long COVID. Dr. Comellas called that an important step.
“One is what the population wants, which is they want some answers, and they want therapies,” he said. “The investigators are doing the right thing, which is really trying to understand the mechanisms.”
A commonly agreed-upon definition “will provide us, then, the ability to really study and even consider clinical trials,” he said.
In the meantime, physicians at the UI clinic see patients from across the state and in neighboring areas. Their successes there have been hard-won.
“The care of post-COVID in the rural environment has unique challenges compared to an urban environment,” Dr. Comellas said. “The challenges are really related to ... access to care, transportation, the ability to do referrals, to see a specialist in those locations.”
And long COVID specialists are trying to publicize how the condition can hide in plain sight.
“A lot of patients get tests, and the tests come back normal, and people always say, ‘Well, it's normal, so you don't have anything,’” Dr. Comellas said. In his experience, however, standard lung function tests and lung imaging often fail to catch the problem.
“The major issue you hear is their inability to deal with their daily activities or they get fatigued with certain activities that they did not get fatigued with before,” he said. Physicians, then, need to design tests that stress the patient’s system to reproduce that experience.
Tests such as expiratory computerized tomography scans of the lungs can reveal previously missed problems like air trapping, he said.
Dr. Graham said it’s common with long COVID: Patients report symptoms, but testing fails to yield clear answers. It’s crucial, she said, that when other causes have been ruled out and symptoms show possible long COVID, that physicians still treat symptoms, or, if they can, refer to long COVID clinics.
“Providing reassurance can go a long way, but it has to be said in a way that says, ‘I confirm that I'm hearing that you are having these symptoms, and I want to work with you to get these better,’” she said.
Patients can be put on a high-salt diet or taught positional techniques to alleviate dysautonomia, for example, and the clinic has had success with inhalers for patients with pulmonary symptoms.
Most importantly, Dr. Graham said, physicians can provide hope to long COVID patients that their symptoms will improve. It can be a slow process—she usually gives her patients a prognosis of about six months to two years before they’ll see significant improvement.
“It's slow. It's awful. It's real,” she said. “Also important: It's not in your head, but it does get better.”
As if treating long COVID amid uncertainty weren’t enough, COVID-19 has become politicized, undermining patients’ trust in their physicians, medical scientists and other health professionals, Dr. Graham noted.
“It is a hard time to be in the medical field,” she said, “but please, please, please keep up the hard work. Your patients need it.”