Among the greatest mysteries surrounding COVID-19 is the syndrome known as “long COVID” — a group of symptoms that linger months after the virus has gone, sometimes preventing people from resuming work.
Little is known about what causes long COVID, who is susceptible, how long it lasts, and how best to treat it. But data is pouring in as doctors struggle to come to grips with a new illness affecting millions and sure to strike millions more as the virus continues to spread.
Now, a new project at the Brown University School of Public Health, launched with a $1 million grant from the Hassenfeld Family Foundation, will aim to sort through the evolving knowledge, clarify the facts as they emerge, and provide recommendations on how society can cope.
“We want to serve as a repository or clearinghouse for the best facts,” said Dr. Megan Ranney, the public health school’s associate dean for strategy and innovation, and an emergency physician. “There are going to be millions of people in this country affected by long COVID. We need to figure out how to help them get back to work . . . and how to support them from a health care and health insurance perspective. We cannot afford to lose millions of people from society.”
While many doctors are working to understand the physiology of long COVID, the Brown group is focusing on its social and economic impact. It plans to make policy recommendations for health system leaders, employers, and government policymakers.
“We’re keenly interested in how businesses and employers should think about long COVID,” said Dr. Philip A. Chan, an associate professor of medicine, consultant medical director for the Rhode Island Department of Health, and advisor to the initiative. Employers may need to make accommodations for affected employees returning to work, as well as deal with the loss of some employees to permanent disability.
One of the first tasks facing the Brown Long COVID initiative will be to define the illness. Long COVID varies so much that it could be several conditions. Some people suffer debilitating fatigue and headaches, resembling a concussion. Others contend with numbness, tingling, and dizziness. Some have identifiable organ damage, while others struggle with palpitations or painful breathing even as standard tests can find nothing wrong with their heart or lungs.
“There’s a lot of confusion, a lot of different sources of information,” Chan said. “We want to set the definition, provide the latest trends and statistics . . . to understand who’s suffering, how many people are suffering, and what are they suffering from.”
Another key focus, Ranney said, will be to “specifically call out the ways in which long COVID is affected by inequities in who gets COVID. We know that minorities and people who have lower economic status are at higher risk of catching COVID.”
And yet clinics set up to treat long COVID patients tend to see mostly white middle-class people. “Is there a hidden epidemic of long COVID syndrome that we’re not paying attention to and is it going to further the inequities?” Ranney said. “We need to empower people to be able to recognize it and get treatment.”
The Hassenfeld Family Foundation, which is led by Alan Hassenfeld, the former chief executive of the Hasbro toy company, is funding the initiative’s first year. The public health school is committed to continuing its work and expanding its scope, officials said.
“The pandemic will end, but Long Covid is here to stay,” Dr. Orestis Panagiotou, assistant professor of health services, policy, and practice and codirector of the initiative, said in a statement. “It is essential we study it, understand who is affected, and what the direct and indirect impacts will be for patients, their families and caregivers, and health systems.”