Two years after the COVID-19 pandemic upended U.S. health care, providers are beginning to catch their breath. But even as they hope to move past the acute stage of the crisis, specialists and patient advocates are warning that no part of the medical system will be left unscathed by chronic illness tied to the disease.
There’s still much that’s unknown about long COVID, including why it affects some people more than others and, perhaps most important to patients, how to resolve its lingering and sometimes debilitating symptoms. An exclusive new analysis of 78,000 privately insured long COVID patients, shared with Morning Consult by the independent nonprofit FAIR Health, highlights the toll the condition takes on their health and showcases who in the medical community is leading the charge in caring for them.
Long COVID has some telltale signs: Among privately insured long COVID patients who were treated between October 2021 and the end of January, nearly 1 in 4 were diagnosed with breathing abnormalities, while about 1 in 5 have chronic cough, and an almost equal share have ongoing fatigue, according to the analysis.
Share of privately insured long COVID patients with the following diagnoses:
Roughly 1 in 10, meanwhile, suffer from high cholesterol or diseases related to high blood pressure, in line with recent research showing COVID-19 survivors may be at higher risk of developing diabetes, for which both ailments are common comorbidities.
“This is a mass disabling event,” said Dr. Alba Azola, an assistant professor and co-director of the Johns Hopkins Post-Acute COVID-19 Team program, noting that long COVID patients have typically seen up to 12 specialists before making their way to her clinic.
“At this moment, the best treatment is multidisciplinary, and doctors that talk to each other,” she added. “Fragmented care is definitely not helpful for this patient population.”
Lawmakers, specialists looking to funnel long COVID patients to treatment
Policymakers are beginning to prioritize long COVID and its ripple effects. This month, the White House released a whole-of-government plan to tackle the illness, while Democratic lawmakers introduced a bill to improve access to specialty clinics, which often have monthslong waiting lists. Dozens of health systems have launched long COVID clinics, and the only states without at least one dedicated center are the Dakotas.
“This is a huge, huge public health issue,” said Dr. Steven Flanagan, a practicing physician in New York and president-elect of the American Academy of Physical Medicine and Rehabilitation. “Recognizing that this is also a new condition, there’s not a lot of treatment guidance out there,” and policymakers should ensure “equal access to care and resources for the clinics that are providing care to people.”
Yet some clinicians say that instead of standing up more specialty clinics, those with newfound expertise on long COVID should be disseminating what they know more broadly, particularly in primary care. That’s because long COVID affects up to 23 million Americans — an estimated 10% to 30% of those who get COVID-19 — and the sheer magnitude of the disease means the number of patients will continue to outstrip availability at these clinics.
“It’s something that physicians are going to have to become comfortable with,” said Dr. Daniel Karel, a primary care doctor at George Washington University’s long COVID clinic and an assistant professor in medicine in the Division of General Internal Medicine. “It is completely unsustainable to have long COVID clinics exist the way they do today.”
Share of privately insured long COVID patients who are being treated by the following provider specialties:
The FAIR Health analysis shows that most privately insured long COVID patients are already being treated in a primary care setting, with 25.5% seeing a family medicine doctor, 25% seeing an internist and 14% seeing either a nurse practitioner or physician assistant.
Azola said that’s likely because primary care is often patients’ first entry into the medical system. Also, some specialists who are seeing long COVID patients may not be using the diagnostic code introduced by the Centers for Disease Control and Prevention in October to track these patients because they’re technically seeing them for another issue, and because they want to ensure they can get reimbursed for their care.
“Physicians will just code to whatever pays for the test,” Azola said.
Clinicians playing “catch up” on long COVID, though symptoms are familiar
While long COVID is new, it’s not a totally unique disease. Many symptoms mirror those of other post-viral conditions, and clinicians and patient advocates focused on those issues hope that the public emphasis on long COVID — and millions of research dollars — will help bring about change for how those ailments are treated.
“We hope everything we learn from patients with long COVID will help patients who have been sick for decades,” said Dr. Lucinda Bateman, who runs a nonprofit specialty clinic and research center in Salt Lake City for patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and related issues.
Bateman said she first suspected that COVID-19 could lead to a wave of chronic illness in mid-2020, and she was giving lectures on post-viral syndromes by that fall. Her clinic, the Bateman Horne Center, has been studying these conditions for more than two decades, but she said “it’s like herding cats” to keep public attention and funding coming in.
Sen. Tim Kaine (D-Va.), who’s been leading Senate efforts on long COVID, introduced legislation last month to shore up research and resources for people living with the condition.
Azola, meanwhile, said the dearth of funding for post-viral syndromes more generally “has created a gap in the understanding” of long COVID, and “now we’re trying to catch up.”
Part of that catch-up is training clinicians on how to identify and treat long COVID, including in medical schools and residency programs, Karel said, as its toll on the health care system will likely only grow in the coming years.
“Hopefully every wave will be smaller and easier to deal with than the subsequent one, but COVID is not going to go away,” Karel said. Long COVID “can happen to anyone, and prevention is everybody’s job.”