As patients recover from COVID-19, the medical community is discovering some patients continue to suffer from lingering symptoms and side effects weeks and even months after they test negative for the virus. Called COVID-19 long haulers, the conditions run the gamut from shortness of breath, dizziness, blood clots, fatigue, blurry vision, persistent headaches and even mental health challenges.
In response, some health systems — particularly ones based in areas hard hit with coronavirus cases — are building programs specifically to help these patients. Typically called post-COVID-19 recovery programs, health systems are staffing them with physicians and other clinicians from a variety of specialties to address patients' lingering symptoms. And with COVID-19 surges continuing,leaders behind these programs anticipate more will pop up at health systems across the country.
"As (COVID-19) patient volume grows, you are going to have more physicians realizing they need to build a multidisciplinary practice in order to be able to treat all of these patients," said Dr. Zijian Chen, an endocrinologist and medical director of Mount Sinai's Center for Post-COVID Care in New York.
The appeal of creating a program specifically for post-COVID recovery is giving patients a single place they can go to address a variety of needs related to their COVID-19 recovery. At Atlantic Health System in New Jersey, a care coordinator provides an initial consult before the patient is set up with the necessary specialists, such as pulmonologists, cardiologists, neurologists and physical therapists. A group of pulmonologists leads the program.
"You can imagine that for a patient who is variably affiliated by symptoms, how hard it could be to access the health system," said Dr. Steven Sheris, president of Atlantic Medical Group. "We are trying to take that friction out of it and put the burden on us for coordination and seamless care."
Atlantic Health launched its COVID Recovery Center in early October and so far about 25 patients have been referred there with more to come, said Dr. Fred Cerrone, a pulmonologist and co-director of the recovery center. Referrals come from primary care physicians in Atlantic's network and the pulmonologists who check in on former COVID-19 patients to see if they need additional care.
The system has created a designated schedule for the specialists to see and treat referrals from the program to ensure the patients aren't waiting more than a few days. If the physicians don't have time in for the additional case load, they can't be part of the program, Cerrone said, calling it a "requisite."
Hackensack Meridian Health's COVID Recovery Center in New Jersey is similarly set up, but its program also focuses on research in addition to offering specialty care. All patients are asked to contribute tissue specimens to Hackensack's Center for Discovery and Innovation that will be used for research on genetic characteristics of patients who suffered from moderate or severe symptoms of COVID-19. Additionally, the cardiology practices involved in the center are also conducting research to understand cardiac disease in recovered COVID-19 patients.
"Our goals are two-fold: One is to bring continued care to people in New Jersey who continue to suffer from this and the second is to try to figure out what is going on with these patients," said Dr. Laurie Jacobs, chair of internal medicine at Hackensack University Medical Center.
Health systems are unsure how long post-COVID recovery centers will be needed due to continued surges throughout the country and overall uncertainty about the virus' lingering symptoms. Some patients only need a behavioral health consult while others have persistent symptoms such as shortness of breath or irregular heart palpitations.
"As long as people are still getting sick there is going to be a need for centers like this," Chen at Mount Sinai said.
Jacobs added that although much is still unknown about COVID-19 long haulers, only about 5-10% of recovered patients continue to suffer from symptoms.
Mount Sinai declined to disclose how much it invested in the program, but Chen at Mount Sinai called the sum significant. Mount Sinai has tasked general medicine physicians who treated COVID-19 patients during the surge to conduct initial consultants and a referral coordinator has been brought on to help patients schedule appointments. There is also a dedicated call center for the recovery center with about six employees. Nearly 650 patients have been treated by the center since it opened on May 18.
"The amount of effort that we have put in already is a major investment to the system in regard to manpower," he said.
Right now, insurance companies are covering services related to post-COVID care, but Chen said he's unsure how long that will last. "At some point they (insurance companies) are going to realize there is a lot of spending on these patients and they might start putting limitations on it," he said.
On the other hand, Jacobs said insurance companies will likely continue to cover these services because eventually billing will be refined to the condition the patient is getting treated for rather than COVID-19 related care.
For patients who don't have insurance, Hackensack has used charity care funds to cover the expenses, Jacobs said. "I don't want to turn people away," she said.