They are leading the way in part because the federal government has made only limited efforts, says Lisa McCorkell, co-founder of the patient-led research cooperative. The international group was founded in the spring of 2020 by researchers who were also long-time COVID patients.
“That’s a big reason why COVID hasn’t been talked about so much for a long time,” McCorkell says. “It’s definitely a national problem. But this affects national and local health services, and there are not enough resources. »
Public clinics may be available to people without insurance and are often less expensive than private hospital clinics.
Harborview has treated more than 1,000 patients with long COVID, and another 200 patients are awaiting treatment, says Jessica Bender, MD, co-director of the University of Washington’s Post-COVID Rehabilitation and Recovery Clinic in the First Hill neighborhood. from Seattle.
At Harborview, Bender says the public hospital’s post-COVID clinic started 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 explain how to deal with doctors or loved ones who don’t believe COVID has been around for a long time.
“I have patients who have been really devastated by the lack of support from colleagues [and] family,” Bender says.
In Campbell County, WY, the pandemic surge didn’t come in earnest until late 2021. Physical therapists at Campbell County Health Rehabilitation Services organized a rehab program for residents with long-term COVID after recognizing the need, explains Shannon Sorensen, director of rehabilitation at Campbell County Health.
“We have had patients who presented with 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 launch more organized research, treatment and benefits. for long COVID patients and ME/CFS patients.
At Ft. Collins, CO, disability activist Alison Sbrana has been a long-time sufferer of myalgic encephalomyelitis. She and other members of the local ME Actionhave met with state officials for several years and are finally seeing the results of these efforts.
Colorado Governor Jared Polis created the full-time position of Policy Advisor for Long-Term Planning for COVID and Post-Virus Infections.
“It’s a way to move forward on how state governments (finally) pay attention to and start thinking about infection-triggered chronic diseases,” Sbrana says.
New York’s Health+ Hospitals launched what may be the nation’s most expansive long-running COVID treatment program in April 2021. Called Aftercareit provides physical and mental health services as well as community support systems and financial assistance.
A lingering issue for patients is that there is not yet a test for long COVID, as there is for COVID-19, says Amanda Johnson, MD, assistant vice president for ambulatory care and population health at New York Health + Hospitals. “It is in many ways a diagnosis of exclusion. You need to make sure their shortness of breath is not caused by something else. It’s the same with anemia,” she says.
The California Department of Public Health has a detailed website dedicated to the subjectincluding long haul videos describing their experiences.
Vermont is one of many states studying along COVID, says Mark Levine, MD, the state health commissioner. The state, in conjunction with the University of Vermont, has established a surveillance project to determine the number of people with long-term COVID, as well as its severity, duration, and potential predispositions.
The University of Utah in Salt Lake City established a comprehensive COVID-19 clinic more than a year ago that also cares for long-term COVID patients, says Jeannette Brown, MD, PhD, associate professor at the school and director of the COVID-19 clinic.
Jennifer Chevinsky, MD, MPH, already had a deep understanding of the long COVID when she landed in Riverside County, California in the summer of 2021. She traveled from Atlanta, where as part of her job as an epidemic intelligence officer at the CDC, she heard stories of COVID-19 patients who were not improving.
She is now the deputy public health administrator for Riverside County, in an area known for its deserts, scorching summer temperatures and diverse population. She says her department has helped initiate programs such as post-COVID-19 follow-up phone calls and extensive COVID training programs that reach the many Latino residents of this county of 2.4 million. It also includes black and Native American residents.
“We ensure that information flows to community and faith-based organizations and community health workers,” she says.
McCorkell, of the patient-led research cooperative, says there is still a lot of work to be done to educate the public about the risks of long COVID and how to seek care for patients. She would like to see a national long-COVID public health campaign, possibly led by the CDC in partnership with local health workers and community organizations, she says.
“That,” she said, “could make a big difference.”