Patients with lingering health problems related to COVID-19 are worried that a clinic on Washington University’s medical campus is in jeopardy.
The Care and Recovery After COVID-19 clinic opened in St. Louis in 2020 to help patients with long COVID find specialists and medical expertise for the constellation of physical and mental issues that can occur in people who have caught the virus.
But patients say they are now being directed to another clinic, the Living Well Center, as they learn the medical director of the CARE clinic is moving to another state.
Emily Seiple, a patient at the clinic since 2023, said communication about the future of the clinic has been inconsistent. Since she became sick with COVID-19, she’s dealt with “brain fog,” mobility problems and extreme fatigue – “like the gravity has been turned up dramatically.”
She’s worried about patients at the clinic being left behind.
“I’m just very concerned that this is just like a trend towards erasing our experiences and our suffering,’ she said. “COVID is still making people sick. We have people who just joined the group a few months ago … there's people who are just getting very, very, very sick for the first time, and I don't want them to have fewer resources.”
She and other patients are concerned the world is moving on from worrying about the coronavirus.
Washington University spokeswoman Jessica Church said the school is committed to keeping the clinic operating in the future. The school is working on a “transition plan,” she said, and patients should be on the lookout for updates that will come soon.
Both the CARE clinic, which is operated through the infectious disease department, and the Living Well Center, operated through the orthopedics department, help people with long COVID symptoms, Church said.
“The clinic was initially planned for closure at the end of July. … We remain fully committed to providing high-quality care and support to individuals living with long COVID, and will share additional information with patients as plans for the clinic are finalized,” an updated statement on the center’s website reads.
For the meantime, the CARE clinic in the infectious disease department is shutting down, but the Living Well Center is staying open, Church said Friday.
The Centers for Disease Control and Prevention, in a study published last year, found that at least 6.9% of adults in the United States reported long COVID symptoms in 2022. Researchers have found the virus can ravage almost every organ system in the body, causing problems with the heart, GI tract, brain and lungs.
Patient Emma V, who has been visiting the long COVID clinic at the infectious disease department for 2½ years, said WashU’s long COVID clinic was the one of the first places she received answers after dealing with migraines, a racing heart, gastrointestinal symptoms and other long COVID symptoms. (STLPR is not using her full name because she is concerned about workplace discrimination.)
“It was very eye-opening to have someone who actually spoke the language and understood what was happening to me, because I had gone to two neurologists, two cardiologists, my [primary care provider], a sleep specialist,” she said. “All these other people just kind of looked at me and shrugged.”
Emma said she’s concerned the Living Well Center doesn’t adequately address some long COVID-19 patients’ needs.
“It’s just a completely different scope,” she said, of the center. “And as someone who has been to both clinics and has seen the care at both clinics, they're very it's like, it's not even apples and oranges.”
According to its website, the Living Well Center “brings together healthcare experts to help you meet …personal health and wellness goals.” It offers movement and exercise programs, behavioral health counseling and several other health services.
Another patient, Renee S, (who also did not want to use a full name) said that many doctors are still learning about long COVID and how it interacts with other health issues. Having specialists work together is vital, they said.
“We are at risk of our quality of life being even more diminished or experiencing absolutely preventable death,” they said in an email. “Our [primary care providers] are not Long COVID specialists. They are generalists. We need specific and dedicated Long COVID care to help us live as safely and as best as we possibly can.”
Washington University officials said in a statement that patients “can continue their care with other WashU Medicine specialists experienced in managing long-term COVID-19 symptoms” and that those specialists will continue outreach and education for other health providers to help them treat patients.
