Patients worry as St. Louis’ Long COVID clinic set to close

ST. LOUIS — They face different symptoms of Long COVID, but they all share one common experience — finding answers at a clinic run by Washington University School of Medicine.

For three years, Emily, 34, from St. Louis, said she suffered with crushing fatigue, nausea, a racing heart rate and difficulty breathing after getting COVID-19 in August 2020. Her first appointment with a nurse at the Care and Recovery After COVID-19 (CARE) Clinic was life changing.

“She said everything I was describing was in line with the experiences of other patients and consistent with what we know about Long COVID,” Emily said. “After three years, I could name my condition definitively, and a health care professional wasn’t afraid to take my suffering seriously.”

The WashU clinic opened in October 2020 — about seven months into the COVID-19 pandemic — and hundreds of patients have since come through its doors.

Now those patients are facing confusion and distress after being told the clinic would be closing at the end of this month.

Several interviewed by the Post-Dispatch say they’ve been given vague reasons as to why. Their future appointments have been canceled, and they are unsure how their care will be coordinated in the future.

Many patients only wanted to be identified by their first names because of stigma associated with the disease.

“I am terrified to lose access to the only doctors who not only believed but understood me,” said Jess, 36, of St. Louis. “I’ve come so far in my progress, and I am scared to lose everything I’ve worked so hard for without the support of Long COVID-competent providers.”

Dr. Victoria Fraser, chair of the university’s Department of Medicine, said plans to close the clinic were spurred by the abrupt departure of its leading physician, whose spouse got a job in another state.

“We got unfortunately very short notice that she was leaving, so we really didn’t have another physician to take over the practice,” Fraser said in an interview Thursday.

The university is working on a “transition plan,” she said, which may involve replacing the physician and reopening the clinic, or it may not.

If not, university leaders are making sure that patients — many of whom have complex conditions — continue to receive ongoing care from their team of specialists, Fraser said.

“That’s why the transition is not super-simple at this point,” she said. “We’re working with a number of different specialists to figure out how we can care for these patients in the best way possible.”

The clinic’s website, which had informed visitors of the closure and directed patients to ask their primary care physicians for “the appropriate specialist,” was updated Friday to say the university is working on a transition plan for patients.

“We remain fully committed to providing high-quality care and support to individuals living with Long COVID, and we will share additional information with patients as plans for the clinic are finalized,” it now states.

The site provides a phone number and email address of a community health worker who can connect callers to medical specialists and support resources.

Patients say they are fearful that losing the clinic means losing a knowledgeable resource on the latest Long COVID research, referrals to specialists who have developed expertise in treating Long COVID symptoms and access to participating in clinical trials for new treatments.

They fear they will lose the progress they have made in improving their health.

Emma, 38, of St. Louis County, was healthy and lifting weights five days a week before she got COVID-19 in May 2022. She found her way to the CARE Clinic after six months of dealing with extreme fatigue, migraines, nausea, allergic reactions and other symptoms. Until then, providers had only responded to her with shoulder shrugs.

“Through the therapeutics and the referrals I’ve gotten from the Long COVID clinic, I am just now starting to get something that resemblances a life back,” Emma said. “I can tend my garden. I can play with my nieces. Stairs are still my nemesis, but they don’t knock me down anymore.”

The patients also worry about those who get sick in the future.

“Losing the CARE Clinic is a devastating blow. It affects current patients who have spent years struggling with daily tasks and also future patients who will need answers, support and treatment,” said Alex, 36, of Jefferson County. “The closure of this clinic makes it feel like help is slipping away when we need it most.”

Angela, 47, who lives in the Metro East, found herself with debilitating neurological issues, chest pains and gastrointestinal problems after getting COVID in June 2022. A year later, she has lost her 20-year career in the utility industry and become disabled.

With her husband working, her two sons have become her caregivers, she said. “It is truly a nightmare.”

Coming to the clinic, however, gave her hope for a cure.

Long COVID is a chronic condition that includes a wide range of symptoms that occur after a COVID-19 infection and last at least three months. The symptoms can range from mild to severe — including organ damage and blood clots — and can even result in a disability.

Around 23 million Americans had symptoms of Long COVID in 2023, according to the National Institutes of Health. The burden is thought to be even higher now — around 44 million. Subsequent COVID infections can also worsen symptoms.

The latest federal survey in September estimates that 18% of adults have had Long COVID. And about a quarter of adults with the disease report significant limitations in performing daily activities.

Hundreds of Long COVID clinics opened across the country at the start of pandemic, but many are now closed, according to an April article published in The Atlantic.

A reporter called 171 clinics and found 61 had closed, 15 were unreachable and 11 did not have a medical doctor or nurse on staff. Only 79 were accepting new patients. The closest to St. Louis are in Kansas City and Chicago.

The only clinic in North Carolina — the University of North Carolina COVID Recovery Clinic — closed its doors last month. A press release blamed “the loss of multiple funding sources,” with officials offering few details.

The closures come as Long COVID remains poorly understood and managed. No prescriptions, supplements or over-the-counter medications are approved to prevent or treat Long COVID, and more research is needed.

“With each clinic that shuts down, our communities lose not just care but also hope for recovery and a better quality of life,” said Laurie Jones, executive director of the worldwide patient advocacy organization #MEAction, especially as people continue to get COVID-19. “Shutting down these clinics is not only harmful, it’s dangerously short-sighted.”

While the Biden administration undertook efforts to increase understanding of the disease and improve care, the Trump administration’s efforts to cut federal spending and crack down on student protests it deems as antisemitic has caused post-COVID research programs at universities like Columbia University to take a hit.

As part of a “reorganization,” the U.S. Department of Health and Human Services in March also shut down the Long COVID Advisory Committee and the Office of Long COVID Research and Practice, which helped coordinate Long COVID research across the nation.

HHS also tried to cancel a $1.7 billion federal Long COVID research program — Researching COVID to Enhance Recovery (RECOVER) — stating it would “no longer waste billions of taxpayer dollars responding to a non-existent pandemic that Americans moved on from years ago.”

However, the research program was rescued from the chopping block after pushback from patients and researchers.

The program recently discovered that up to 5.8 million American children have Long COVID, suggesting it could now be the most common chronic condition among children.

Washington University is one of 12 universities participating in the RECOVER research program, which aims to accelerate scientific progress and provide patients with services they need.

The university was awarded a five-year $4.5 million RECOVER grant in the fall of 2023 to identity patient needs and improve care across Missouri through efforts such as working with community clinics and the University of Missouri to increase primary care physicians’ knowledge about the disease, especially in underserved and rural areas.

The university is also participating in studies testing medications to improve symptoms such as fast heart rate, dizziness and fatigue; a rehabilitation program to prevent energy crashes; and a procedure to improve the sense of smell.

University officials say the research will continue and not be impacted by the clinic’s closure.

Although the university did not disclose the number of patients the clinic has been treating, Fraser mentioned that the figure “has been declining significantly” over time. These slowing numbers have also been seen nationally, she said, as patients’ symptoms gradually improve.

“But there still are a number of patients who are suffering, and we understand that and want to best help them however we can,” she said.

Long COVID patients at the CARE clinic say they have been guided through numerous helpful interventions, including simple things such as compression stockings, not eating certain fruits and vegetables, drinking salt water and taking antihistamines.

They describe receiving physical therapy plans that understand how their energy can be depleted and send them into a worsening cycle — knowledge that has helped many maintain their careers.

The clinic also funneled them to specialists in areas such as cardiology, neurology and orthopedics that became experienced in identifying symptoms and treatment strategies tailored to each patient.

Jess describes having gone from needing a wheelchair to being able to go on a 20-minute walk.

Emily said after her first appointment, she started speech, occupational and physical therapy with practitioners who had built a body of knowledge to support Long COVID patients. She learned skills to help her memory and attention.

“The Long COVID clinic was a door to health care professionals who were actively researching, learning and re-tooling effective approaches,” she said.

Rusti Levin, 72, of St. Louis, said she caught COVID-19 for the first time in February and went to the clinic in May. During a two-hour appointment, she learned lifestyle interventions and was connected to an array of specialists. Now her follow-up appointment at the clinic in November has been cancelled.

“I don’t know what to expect,” Levin said. “I will wait to hear from the different departments to see what is happening with the rest of the Long COVID specialists, and if I can continue to see them in spite of the clinic shutting down.”

The clinic also brought clinical trials to St. Louis, which many patients say they participate in. Now, they fear losing the clinic could also mean losing access to future trials and a local pipeline for innovative treatments.

“Without a dedicated Long COVID clinic, what incentive will there be for large research studies like RECOVER to come here?” Emma asked.

Heidi Bartels, 47, of St. Louis, said Long COVID has taken everything she worked so hard for after overcoming a heroin addiction in 2012 — her career, helping others in recovery and being the kind of mom she wants to be.

The clinic was not only helping her navigate her physical illnesses but saving her from crushing depression.

“Losing the Long COVID clinic feels like losing my compass just as I learned to chart a new course,” Bartels said. “I’m terrified of backsliding.”

Much of the discoveries and research into Long COVID so far has been the result of patient advocacy efforts. Area patients say they will continue to work together and have launched a group call Long COVID STL. They urge others to contact stllongcovid@gmail.com to find support.

Emily said, “We continue daily to embody a public health crisis that the world has politicized and largely turned its back on … Losing the clinic is one more reminder that while the world moves on, we can’t.”

Editor’s note: This story was updated to reflect a change in the WashU website on Friday.