Doctors are taking it on themselves to figure out long Covid

Dozens of health care practitioners from across the country signed onto a recent Zoom call to talk about pain. Specifically, how much pain their patients with long Covid were in, what kind, and what — if anything — they could do about it.

Members of the group, an ad-hoc collaboration of providers at more than 40 long Covid clinics, have met for more than a year but are still grappling with the same kinds of questions they did at the beginning: how to treat a new, complex and debilitating condition affecting millions of Americans.

While the network is helping patients and doctors navigate the disease’s uncharted waters, long Covid doctors say there’s only so much they can do on their own. The federal government should be doing more, they say, to provide resources, coordinate information sharing and put out best practices. Without that, the doctors involved fear the condition, which has kept many of those afflicted out of the workforce, threatens to spiral.

“We’re one organization that is trying to bring in 41 centers,” said Monica Verduzco-Gutierrez, a physiatrist from the University of Texas Health Science Center at San Antonio who runs two long Covid clinics and is part of the collaborative run by the American Academy of Physical Medicine and Rehabilitation. “It’s wonderful the administration said long Covid is a public health issue … It’s like, ‘Okay, what’s really going to happen now?’”

In the absence of detailed federal guidance, various ideas and theories about how to treat long Covid have proliferated — from honest mistakes by providers to scammers preying on desperate patients — delaying care or putting people at additional risk.

And the disease is taking a toll. A new report from the Brookings Institution estimates 16 million Americans between the ages of 18 and 65 have long Covid, with 2 to 4 million of those out of work because of the condition. A May study from the Centers for Disease Control and Prevention found that 1 in 5 adults had a lingering health condition that might be related to a previous Covid-19 infection.

Many have mild symptoms for which they don’t seek treatment. But for those who do, many are “completely disabled,” said Luis Ostrosky, infectious disease director for the COVID-19 Center of Excellence at UTHealth Houston. “They cannot work.”

The collaborative aims to help fill some of the vacuum, sharing what its members have learned with primary care doctors and other specialists on the frontlines of diagnosing and treating the disease. But those practitioners are stretched thin, typically squeezing their work on long Covid in between their day jobs, and they fear the public, and the Biden administration, is losing focus.

“People are now basically living life, saying, ‘Oh, Covid’s just a cold.’ But it’s not. We still don’t know enough about it, and we are still getting just as many referrals for patients who have gotten Covid during Omicron as before,” said Nikki Gentile, an assistant professor in family medicine at the University of Washington School of Medicine who cares for patients at the medical school’s long Covid clinic. “I wish there was more talk about it on the federal level.”

In response to the criticism, the Biden administration pointed to some of its actions to boost research efforts, to gather information from patients and doctors, and to develop a national response plan. But with public attention to the pandemic waning, doctors fear that the long Covid caseload will only grow as patients fail to take its risks seriously, and that the moment to come up with a more comprehensive government plan to treat the condition will pass.

‘Squeezing it in’

Patients with the most complex cases of long Covid may see a host of doctors — both primary care and specialists — before landing at a long Covid clinic. Doctors say the patients are often frustrated and sometimes anxious or depressed. Often they’ve struggled to get others to take their symptoms seriously.

“The one thing I’m hearing more than almost anything else is, ‘My doctor doesn’t believe me,’” said Kimberly Knackstedt, a senior fellow at the Century Foundation and former director of disability policy for the White House Domestic Policy Council under President Joe Biden. “If there’s one thing that I could shout from the rooftops, ‘Long Covid is real!’ would be it.”

The American Academy of Physical Medicine and Rehabilitation collaborative is trying to quell the doubts and steer doctors to best practices. It has published guidance on its website for symptoms that practitioners regularly encounter, such as fatigue, cardiovascular complications and breathing discomfort.

But doctors who treat long Covid every day say patients are still at risk for unproven treatment.

“There’s a lot of people who are saying, ‘Try this medicine or that medicine,’ without a lot of evidence,” says Benjamin Abramoff, the head of the collaborative and of the post-Covid clinic at the University of Pennsylvania. “Sometimes patients report or have harmful outcomes.”

Long Covid clinics aren’t a panacea, either, due in large part to a lack of dedicated resources, doctors say.

During the first year of the pandemic, clinics started to crop up within hospitals and research institutions to help the growing number of patients seeking treatment. Physicians — neurologists, pulmonologists, physical therapists, family medicine doctors, among others — squeezed long Covid patients in between their regular ones, creating ad-hoc interdisciplinary hubs to figure out how best to treat them and setting up waiting lists as more people sought help.

More than two years later, their weeks- and months-long waiting lists have grown longer. And long Covid clinics remain clustered in urban areas, often leaving treatment for those in rural communities out of reach unless they can afford to travel for care.

Even if a patient can get an appointment, all doctors may be able to do is confirm they likely have long Covid and help them manage symptoms, such as fatigue, brain fog, shortness of breath, digestive issues and changes in menstrual cycles. Long Covid, unlike the disease from which it takes its name, has no test to confirm its existence and no treatment to cure it.

“There’s been no magic funding. No federal grants,” said Verduzco-Gutierrez. “It’s really just using our own clinical time to see patients, however we can do it.”

The federal response

Though it’s often eclipsed as a talking point by other public health crises, the Biden administration has not ignored long Covid from a policy standpoint.

In early 2021, the National Institutes of Health launched the RECOVER Initiative, partnering with academic researchers to study long Covid patients. The CDC, which is also running a study on the long-term effects of Covid-19, has held a series of calls with physicians about the condition, offered continuing education options for physicians, and published some patient treatment guidance online.

In April 2022, the White House ordered an “interagency national research action plan” on long Covid to “advance progress in prevention, diagnosis, treatment and provision of services” and directed the Department of Health and Human Services to issue a report on what the government is doing to help people with the condition.

In response, HHS published two reports last month. One outlined a national federal research strategy to better understand and respond to long Covid, including plans to establish an Office of Long Covid Research and Practice within HHS. The office would coordinate work among federal agencies, including the National Institutes of Health, the CDC and the Department of Veterans Affairs. To date, there are 72 long Covid research programs in place, according to HHS.

The other HHS report outlined the services now available to Americans “to address longer-term effects of COVID-19, including Long COVID and related conditions,” according to an agency statement. The government website covid.gov recently added a page where people can access information about those services and how to get treatment for the disease.

The Food and Drug Administration did note last week, when authorizing new Covid booster shots, that new data suggested immunization can reduce the risk of developing long Covid. But that comes as the administration is planning, in the absence of new funding from Congress, to shift the cost of getting vaccinated onto consumers and their insurers.

Physicians and staff members of the American Academy of Physical Medicine and Rehabilitation have been talking to the Biden administration and lawmakers about long Covid since early 2021. The group was also part of the discussions in the White House Domestic Policy Council that informed the administration’s national plan released in April, and it has worked with Rep. Ayanna Pressley (D-Mass.) to develop the TREAT Act, a bill that would provide more funding to long Covid clinics.

Democrats have introduced several bills to improve research and access to treatment for long Covid, but none, including Pressley’s, have support from Republicans. The measures in the House have yet to receive a hearing or committee markup, and while senators inserted some long Covid provisions into a pandemic preparedness bill, that legislation hasn’t moved since the HELP Committee approved it in March.

‘Quite worried’

Physicians who see long Covid patients say the condition underscores the fragility of the American health care system, including how difficult it is for people to access care and how hard it is for doctors to learn about emerging conditions.

Primary care providers are often at the frontlines of long Covid treatment and said they’re well equipped to manage the disease because of their focus on holistic, patient-centered care. But long Covid specialists said more needs to be done to keep family doctors informed about the evolving research on the condition.

Without more provider education, doctors fear long Covid cases may go undiagnosed, particularly in underserved communities. Jeanette Brown, a pulmonologist and medical director at the University of Utah’s COVID-19 Long Hauler Clinic, said the clinic has seen notably lower numbers of Hispanic and Pacific Islander patients, the two biggest non-white groups in the state.

“It worries me,” Brown said. “The reality is [primary care doctors] are so overworked and underpaid, it’s like, well how do you get them time to learn about this when they’re drowning?”

While clinics hope for more funding that may or may not come, physicians want to see federal health officials offer better guidance to all practitioners, help clinics coordinate with each other to share the best information they have and get the message out to the public that long Covid is a real problem — and a permanent part of America’s medical landscape.

“I think all of us in chronic care are quite worried that we’re going to have a really significant population of people burdened by long Covid for years to come,” said Bradley Schlaggar, president and CEO of the Kennedy Krieger Institute, which runs a pediatric long Covid clinic. “It shouldn’t be a surprise at this point.”