Clarence Troutman survived a two-month hospital stay with COVID-19, then went home in early June. But he’s far from over the disease, still suffering from limited endurance, shortness of breath and hands that can be stiff and swollen.
“Before COVID, I was a 59-year-old, relatively healthy man,” said the broadband technician from Denver. “If I had to say where I’m at now, I’d say about 50% of where I was — but, when I first went home, I was at 20%.”
He credits much of his progress to the “motivation and education” gleaned from a new program for post-COVID patients at the University of Colorado, one of a small but growing number of clinics aimed at treating and studying those who have had the unpredictable coronavirus.
As the election nears, much attention is focused on daily infection numbers or the climbing death toll, but another measure matters: the number of people who survive but continue to wrestle with physical or mental effects including lung damage, heart or neurological concerns, anxiety and depression.
“We need to think about how we’re going to provide care for patients who may be recovering for years after the virus,” said Dr. Sarah Jolley, a pulmonologist with UCHealth University of Colorado Hospital and director of UCHealth’s Post-Covid Clinic, where Troutman goes.
That need has jumpstarted post-COVID clinics, which offer a range of specialists in one place.
One of the first and largest of these clinics is at Mount Sinai in New York City. Programs also have been launched at the University of California-San Francisco, Stanford University Medical Center and the University of Pennsylvania. The Cleveland Clinic plans to open one early next year.
It’s not just academic medical centers: St. John’s Well Child and Family Center, part of a network of community clinics in South Central Los Angeles, said it aims to test thousands of its patients who were diagnosed with COVID since March for long-term effects.
The idea is to bring together medical professionals across a broad spectrum, including physicians who specialize in lung disorders, heart issues and brain and spinal cord problems. Mental health specialists also are involved, along with social workers and pharmacists.
Many of the centers do research, aiming to better understand why the virus hits certain people so hard.
“Some of our patients, even those on a ventilator on death’s door, will come out remarkably unscathed,” said Dr. Lekshmi Santhosh, an assistant professor of pulmonary critical care and a leader of the post-COVID program at UC-San Francisco, which is called the OPTIMAL clinic. “Others, even those who were never hospitalized, have disabling fatigue, ongoing chest pain and shortness of breath, and there’s a whole spectrum in between.”
‘Staggering’ medical need
It’s too early to know how long the persistent medical effects and symptoms will linger or to make accurate estimates on the percentage of patients affected.
Some early studies are sobering. An Austrian report released in September found that 76 of the first 86 patients studied had evidence of lung damage six weeks after hospital discharge, but that dropped to 48 patients at 12 weeks.
Some researchers and clinics say about 10% of U.S. COVID patients they see might have longer-running effects, said Dr. Zijian Chen, medical director of the Center for Post-COVID Care at Mount Sinai, which has enrolled 400 patients so far.
If that estimate is correct — and Chen said more research is needed to make sure — it would translate to people entering the medical system in droves, often with multiple issues.
How health systems and insurers respond will be key, he said. More than 6.5 million U.S. residents have tested positive for the disease. If fewer than 10% — say 500,000 — already have long-lasting symptoms, “that number is staggering,” Chen said. “How much medical care will be needed for that?”
Though startup costs could be a hurdle, the clinics themselves eventually might draw much-needed revenue to medical centers by attracting patients, many with insurance to cover some or all of the cost of repeated visits.
Chen said the specialized centers can help lower health spending by providing more cost-effective, coordinated care that avoids duplicative testing.
“We’ve seen patients that when they come in, they’ve already had four MRI or CT scans and a stack of bloodwork,” he said.
The program consolidates those earlier results and determines whether any additional testing is needed. Sometimes, the answer to what’s causing long-lasting symptoms remains elusive. One problem for people seeking help outside of dedicated clinics is that when there is no clear cause for their condition, they might be told the symptoms are imagined.
“I believe in the patients,” Chen said.
About half of the clinic’s patients have received test results showing damage, said Chen, an endocrinologist and internal medicine physician. For them, the clinic can develop a treatment plan. Frustratingly, the other half have inconclusive test results yet exhibit a range of symptoms.
“That makes it more difficult to treat,” Chen said.
Experts see parallels to a push in the past decade to establish special clinics to treat patients released from ICU wards, who might have problems related to long-term bed rest or the delirium many experience while hospitalized. Some of the current post-COVID clinics are modeled after the post-ICU clinics or are expanded versions of them.
The ICU Recovery Center at Vanderbilt University Medical Center, for instance, which opened in 2012, is accepting post-COVID patients.
There are about a dozen post-ICU clinics nationally, some of them also now working with COVID patients, said James Jackson, director of long-term outcomes at the Vanderbilt center, who said he’s heard of at least another dozen post-COVID centers in development.
The centers generally do an initial assessment a few weeks after someone is diagnosed or discharged from the hospital, often by video call. Check-in and repeat visits are scheduled every month or so after that.
“In an ideal world, with these post-COVID clinics, you can identify the patients and get them into rehab,” he said. “Even if the primary thing these clinics did was to say to patients, ‘This is real, it is not all in your head,’ that impact would be important.”
A question of feasibility
Financing is the largest obstacle, program proponents say. Many hospitals lost substantial revenue to canceled elective procedures during stay-at-home periods.
“So it’s not a great time to be pitching a new activity that requires a startup subsidy,” said Glenn Melnick, a professor of health economics at the University of Southern California.
At UCSF, a select group of faculty members staff the post-COVID clinics, and some mental health professionals volunteer, Santhosh said.
At Mount Sinai, Chen said he was able to recruit team members and support staff from those whose elective patient caseload had dropped.
Jackson said there hasn’t been enough research into the cost- and clinical effectiveness of post-ICU centers.
“In the early days, there may have been questions about how much value does this add,” he said. “Now, the question is not so much is it a good idea, but is it feasible?”
Right now, the post-COVID centers are foremost a research effort, said Len Nichols, an economist and nonresident fellow at the Urban Institute.
“If these guys get good at treating long-term symptoms, that’s good for all of us,” Nichols said. “There’s not enough patients to make it a business model yet, but, if they become the place to go when you get it, it could become a business model for some of the elite institutions.”
KHN (Kaiser Health News) is a nonprofit news service covering health issues. It is an editorially independent program of KFF (Kaiser Family Foundation), which is not affiliated with Kaiser Permanente.