They’re leading the way in part because the federal government has made only limited efforts, says Lisa McCorkell, a co-founder of the Patient-Led Research Cooperative. The international group was founded in spring 2020 by researchers who are also long COVID patients.
“It’s a big reason why long COVID isn’t talked about as much,” McCorkell says. “It’s definitely a national issue. But it trickles down to state and local health departments, and there’s not enough resources.”
The government clinics may be accessible to people without insurance and often are cheaper than clinics at private hospitals.
Harborview has treated more than 1,000 patients with long COVID, and another 200 patients are awaiting treatment, says Jessica Bender, MD, a co-director of the University of Washington Post-COVID Rehabilitation and Recovery Clinic in Seattle’s First Hill neighborhood.
At Harborview, Bender says the public hospital’s post-COVID clinic initially began with a staff of rehabilitation doctors but expanded in 2021 to include family and internal medicine doctors. And it offers mental health programs with rehabilitation psychologists who instruct on how to deal with doctors or loved ones who don’t believe that long COVID exists.
“I have patients who really have been devastated by the lack of support from co-workers [and] family,” Bender says.
In Campbell County, WY, the pandemic surge did not arrive in earnest until late 2021. Physical therapists at Campbell County’s Health Rehabilitation Services organized a rehabilitation program for residents with long COVID after recognizing the need, says Shannon Sorensen, rehabilitation director at Campbell County Health.
“We had patients coming in showing chest pain, or heart palpitations. There were people trying to get back to work. They were frustrated,” Sorensen says.
Myalgic encephalomyelitis and chronic fatigue syndrome activists have embraced the fight to recognize and help long COVID patients, noting the similarities between the conditions, and hope to help kickstart more organized research, treatment and benefits for long COVID sufferers and ME/CFS patients alike.
In Ft. Collins, CO, disability activist Alison Sbrana has long had myalgic encephalomyelitis. She and other members of the local chapter of ME Actionhave met with state officials for several years and are finally seeing the results of those efforts.
Colorado Gov. Jared Polis has created the full-time position of policy adviser for long COVID and post-viral infection planning.
“This is one way forward of how state governments are (finally) paying attention to infection-triggered chronic illnesses and starting to think ahead on them,” Sbrana says.
New York City’s Health + Hospitals launched what may be the most expansive long COVID treatment program in the nation in April 2021. Called AfterCare, it provides physical and mental health services as well as community support systems and financial assistance.
A persistent issue for patients is that there isn’t yet a test for long COVID, like there is for COVID-19, says Amanda Johnson, MD, assistant vice president for ambulatory care and population health at New York Health + Hospitals. “It’s in many ways a diagnosis of exclusion. You have to make sure their shortness of breath isn’t caused by something else. The same with anemia,” she says.
Vermont is one of several states studying long COVID, says Mark Levine, MD, the state health commissioner. The state, in collaboration with the University of Vermont, has established a surveillance project to determine how many people have long COVID, as well as how severe it is, how long it lasts, and potential predispositions.
The University of Utah in Salt Lake City established a comprehensive COVID-19 clinic more than a year ago that also handles long COVID patients, says Jeannette Brown, MD, PhD, an associate professor at the school and director of the COVID-19 clinic.
Jennifer Chevinsky, MD, MPH, already had a deep understanding of long COVID when she landed in Riverside County, CA, in the summer of 2021. She came from Atlanta, where as part of her job as an epidemic intelligence service officer at the CDC, she heard stories of COVID-19 patients who were not getting better.
Now she is a deputy public health officer for Riverside County, in a region known for its deserts, sizzling summer temperatures and diverse populations. She says her department has helped launch programs such as post-COVID-19 follow-up phone calls and long COVID training programs that reach out to the many Latino residents in this county of 2.4 million people. It also includes Black and Native American residents.
“We’re making sure information is circulated with community and faith-based organizations, and community health workers,” she says.
McCorkell, at the Patient-Led Research Cooperative, says there is still much work to do to raise public awareness of the risks of long COVID and how to obtain care for patients. She would like to see a national public health campaign about long COVID, possibly spearheaded by the CDC in partnership with local health workers and community-based organizations, she says.
“That,” she says, “could make a big difference.”