Axios AM Deep Dive: Long COVID crisis

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Data: Our World In Data, Johns Hopkins University; Chart: Thomas Oide/Axios

Long COVID is emerging as the next phase of the global health crisis, afflicting millions of people with neurological issues, cognitive difficulties, breathing problems and organ damage months after they fell ill.

It's also testing already overtaxed health systems with waves of chronic illness and patients who may never truly get better.

Why it matters: Our understanding of long COVID is so new that many patients can't get a clear medical explanation, and they face frustrating struggles to get diagnosed and find treatment.

The big picture: Increasingly, "long-haulers" find themselves falling through gaps in the social safety net, especially when they're too sick to work but not ready or able to be designated disabled.

There's growing evidence the condition also increases the risk of serious non-COVID health outcomes like heart attacks, strokes, diabetes and brain shrinkage.

Worse yet, long COVID is still so new and mysterious that many physicians and researchers are trying to figure out how to treat it — leaving frustrated patients without the medical help they desperately need.

"There's not a definite plan to actually help this pain go away," Julie McGehee, a tech worker in Austin, Texas, who contracted the virus while in Mexico in January, tells Axios.

"It is a waiting game, and I have no idea what that means, and my life is kind of on hold because of it."

By the numbers: The impact of long COVID is growing.

As many as 24 million Americans may have experienced long COVID symptoms.

10% to 30% of those who had COVID reported at least one symptom up to six months after the virus left their bodies.

1 in 20 fully vaccinated people infected with the Omicron strain could become long-haulers, according to some experts — and experts say the prevalence could be as high as 20% in unvaccinated people.

A U.K. study of 2,320 COVID patients discharged from the hospital in the first 13 months of the pandemic found fewer than half had fully recovered a year after contracting the disease.

Women were 33% likelier to have lingering symptoms.

What it's like: Cara — a 39-year-old Baltimore accountant who would have described herself as "Type A" just a few months ago — tells Axios she now struggles to make it through her workday or even walk up a flight of stairs without gripping the railing.

Her brain fog is one of the symptoms that bothers her the most. "I have to use my brain. ... I'm scared s--tless. I don't know when it'll come back," she says. 

"I don't know how long it's going to be, and it's frightening as hell."

What we're hearing: The condition is forcing a reckoning throughout medicine and testing a social safety net ill-equipped to deal with such a crisis.

It has kicked off a polarizing debate about how to best treat and rehabilitate people with complex post-viral conditions, including chronic fatigue syndrome.

Many of those who develop symptoms wind up paying out of pocket for care, thanks to gaps in unemployment and disability coverage that have surfaced since federal unemployment benefits expired in September 2021.

Applying for disability benefits is fraught with complications due to questions about whether some symptoms are real or if there's enough evidence to show an inability to work.

What they're saying: "I'm really worried that we're going to have patients that aren't going to get better," says Benjamin Natelson, a neurologist who heads the Pain and Fatigue Study Center at the Icahn School of Medicine at Mount Sinai. "We'll have an avalanche of continued illness."

"It's not the disease itself but the symptoms," says Glenn Kantor, founding partner at Kantor & Kantor, a Los Angeles law firm that represents long-haulers who believe they've been improperly denied benefits.

"Carriers weren't prepared for a significant number of people who have lingering symptoms that leave them unable to work."

The federal response: The National Institutes of Health has launched a $1.15 billion effort called the RECOVER Initiative to find new ways to predict and treat the condition, including repurposing already approved drugs.

Walter Koroshetz, director of the National Institute of Neurological Disorders and Stroke, tells Axios the effort aims to enroll 40,000 adults and kids with existing and old infections, as well as study tissue samples from autopsies and electronic health records.

The Biden administration recently took other steps, including affirming that some long-haulers may have a disability under civil rights laws like the Americans with Disabilities Act.

How health care is changing: The U.S. medical system is beginning to reconfigure itself in anticipation of years of additional demands for care. 

Some large hospitals and health systems have opened long-COVID clinics where physicians can assess whether long-haulers have organ damage, do imaging studies and see how hard patients can be pushed in rehab.

Experts also see an uptick in demand for physical medicine and rehabilitation practices and for integrated medicine, which incorporates alternative treatments like acupuncture with conventional medicine and is already used for chronic fatigue, fibromyalgia and other conditions.

And the pandemic has instilled a growing recognition that long-haulers have a chronic, complex disease whose symptoms shouldn't be dismissed, even when they can't be ideally documented.

"The single best predictor of a doctor who can act is someone who had an ill person in their family," says Nancy Klimas, director of the Institute for Neuro-Immune Medicine at Nova Southeastern University.

The bottom line, according to Klimas: "I think everyone is going to know a family member or friend with long COVID."

1. The next COVID crisis

It's leaving millions wondering if they'll ever truly get better.

Deep Dive - Long COVID

Coronavirus

Long COVID is emerging as the next phase of the global health crisis, afflicting millions of people with neurological issues, cognitive difficulties, breathing problems and organ damage months after they fell ill.<ul><li>It&#x27;s also testing already overtaxed health systems with waves of chronic illness and patients who may never truly get better.</li></ul>

The U.S. faces a range of health care flashpoints — unaffordable drugs, opioids, vaping — as we debate whether to adopt universal care. For now, the Affordable Care Act is the law of the land, but Republicans want to issue it a final death blow.

Health

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Data: PLOS Medicine; Chart: Thomas Oide/Axios

Long COVID is likely not just a single illness, but instead a number of different types of disorders sparked to life by a COVID infection.

Why it matters: The hydra-headed nature of the condition is just one of the complexities researchers are only beginning to tease out as they try to understand why some people develop multiple chronic symptoms after what often starts as a mild coronavirus infection.

The big picture: Long COVID symptoms include everything from brain fog and fatigue to organ damage, chest and joint pains, loss of senses of smell and taste, cough, headache, and gastrointestinal and cardiac issues.

"We've ended up seeing a lot of patients with mild or moderate, mostly stay-at-home infections that came in with a wide range of symptoms. It was bizarre," Bradley Sanville, a pulmonary and critical care physician who is part of the UC Davis Post-COVID-19 Clinic, tells Axios.

Though there's still a lot we don't know about long COVID, here's a look at what we do (kind of) know so far.

Who's at increased risk: Women and girls appear to experience long COVID symptoms more often than men, according to a study published in Infectious Diseases.

The presence of certain autoantibodies, as well as having Type 2 diabetes or the reactivation of the usually dormant Epstein-Barr virus, could mean a patient has a higher chance of developing long COVID, a study published earlier this year in the medical journal Cell found.  

Vaccinated adults were about 41% less likely to report lingering COVID symptoms, a study out of the U.K. reported.

Among children, adolescents seem more likely to get it than younger kids, although that may be because they are more likely to be able to communicate their symptoms, Alexandra Yonts, an infectious diseases physician at Children's National Hospital, tells Axios. 

"The coughing, persistent wheezing and shortness of breath is not as common in kids," Yonts said, compared to what she's reading in the literature about adults. "They seem to have more GI symptoms as part of their presentation, as well as the non-specific dizziness, light-headedness [and] brain fog."

How it's diagnosed: There's no test to definitively diagnose long COVID, but "we are making headway on having a more unified definition," Yonts said.

The World Health Organization defines long COVID as having persistent symptoms lasting at least two months after a confirmed or suspected COVID infection that can't be explained by an alternative diagnosis.

What causes it: There are several theories about the mechanisms behind long COVID, such as it being a vascular or nervous system dysfunction or the result of persistent replication of the virus in the body, says Michael Brode, medical director at UT Health Austin's Post COVID-19 program.  

State of play: Multiple ongoing studies in the U.S. are examining populations of long COVID patients, the causes of their symptoms and effective therapies.

More than 60 hospitals across the country have pulled together multiple specialists into long-COVID teams — including experts in cardiology, pulmonology, rheumatology and gastroenterology — because the condition can impact every part of patients' bodies.

Therapies: Treatment often comes down to trial and error and symptom management. The condition has parallels with chronic fatigue syndrome and also draws comparisons with the blood flow disorder postural orthostatic tachycardia syndrome, or POTS.

"We're basically taking what see from other diseases," Brode says.

Multiple studies have suggested a gradual increase in exercise through physical therapy can be helpful in alleviating symptoms, although it's an open question how hard to push people since exercise greatly exacerbates problems in many patients. 

There are also a number of common drugs that warrant more study, such as antihistamines, said Melissa Pinto, a nurse scientist at the University of California at Irvine. 

Pinto published a case report in the Journal for Nurse Practitioners in March about two long COVID patients who rapidly recovered from brain fog and fatigue symptoms after taking antihistamines.

Brode and Pinto also pointed to studies that have connected the virus to serotonin — a chemical produced by the body — as well as the vagus nerve, which impacts digestion, heart rate and the immune system. That has led researchers to explore whether antidepressants or vagal nerve stimulators may be effective for some patients.

But, but, but: It's important to note that research into treatments is still in its early stages. A therapy that might show promise in one patient might be harmful in another, says Kristen Sexson Tejtel, a pediatric cardiologist at Texas Children's Hospital. 

Even effective therapies can come with significant drawbacks, Tejtel says. 

"In kids, stimulants definitely seem to help with the brain fog and the fatigue," says Tejtel. "But then they want to be active and start to spiral" as they experience extreme fatigue following exercise.

The bottom line: A growing army of medical providers and researchers are starting to piece together some answers. 

But since we still don't know just how prevalent long COVID really is, what causes it and what treatments will ultimately work on a particular patient, there's still a long way to go.

2. What we know about long COVID

What the symptoms are, who's likely to get it, and some treatments that have worked.

Long COVID is likely not just a single illness, but instead a number of different types of disorders sparked to life by a COVID infection.Why it matters: The hydra-headed nature of the condition is just one of the complexities researchers are only beginning to tease out as they try to understand why some people develop multiple chronic symptoms after what often starts as a mild coronavirus infection.

Americans suffering from long COVID are running into the obstacles presented by health and safety net systems that are difficult to navigate in the best scenarios —and certainly aren't set up to deal with the ambiguity of a new chronic disease.

Why it matters: Long COVID patients can be hit with the financial double whammy of expensive medical bills and a reduction of income, if the condition impairs their ability to work.

But they may struggle to receive help, as their condition is difficult to diagnose, no standard treatment guidelines exist and policy hasn't kept up with the pandemic. 

The big picture: Many Americans haven't been impacted financially by the virus itself — at least, not yet.

The federal government purchased vaccines and COVID treatments, which it then made available for free. And early on in the pandemic, insurers voluntarily waived cost-sharing requirements for COVID treatment, although many have since lifted the waivers.

That's made the financial effects of getting COVID very different from most other diseases. But having long COVID could in some cases resemble living with HIV, or any other chronic condition that requires ongoing care — and may keep someone out of work.

"We are still understanding long COVID and what all it entails, what services are needed, but we generally know that folks pursuing treatment often have to see a range of physicians," says Audrey Richardson, a policy analyst at Families USA.

"That all adds up, when you have a bunch of different appointments you need to pay for."

Yes, but: What sets long COVID apart is how new and poorly understood it is, especially given its prevalence.

​​"One of the key things we hear from patients is that they have trouble getting a diagnosis," Francesca Beaudoin, faculty director of Brown University's Long Covid Initiative, tells Axios. "A crux of the issue with long COVID is there is no uniformly accepted definition of long COVID."

"Long COVID is different in that we lack the evidence to guide treatment and policy right now because it is so new, so that's an additional burden long COVID poses to patients that other diseases might not,” she adds.

State of play: Like health insurance, there are both private and public sources of disability insurance. But to qualify for either, someone has to prove they have long COVID and that it prevents them from being able to work — a difficult task when there are varying definitions of the condition and no standard diagnostic tool.

That designation can be elusive for people who never received a positive COVID test or who don't have access to a provider who can certify their health status has changed. Many patients are denied benefits, the Washington Post reported earlier this year.

"It is not as simple as you call someone, you say, 'I had COVID,' and they start sending you [a portion of] your salary," says Matthew Cortland, a senior resident fellow at Data for Progress.

Policy updates could help smooth the process of obtaining federal benefits, experts say. 

The Biden administration has released guidance stating that long COVID can be considered a disability under civil rights laws. But it hasn't clarified how long COVID is identified by the Social Security Administration, which administers Social Security Disability Insurance (SSDI) and Supplemental Security Insurance (SSI).

For other conditions, the agency has specific guidelines for how someone can prove they have the disability and thus qualify for benefits, although it can be a long process.

But "it is not possible to do that for long COVID, because there is no listing. There is no criteria for, 'Here's how you can prove you have long COVID,'" Cortland says.

Qualifying for federal disability benefits can be even more difficult than private ones, because the SSA requires proof via medical evidence that the person will be unable to work for 12 months — which is a high hurdle, given the scientific uncertainty about how long patients can expect to be sick with long COVID.

Symptoms like brain fog or cognitive difficulties can be particularly hard to document and establish as durable, says T.J. Geist, director of Allsup, a company that helps people with the benefits application process.

The White House recently said it "will continue to clarify and update policy guidance as the science develops" for those programs.

What we're watching: The health system is also grappling with how to prepare for an influx of long COVID patients, and how to manage the associated costs.

The federal government has set up a billing code for the condition, which helps to streamline the payment process between insurers and providers. 

It's too soon to tell how long the condition will last, how many people will have symptoms requiring care and how much care will be necessary. That makes it nearly impossible to predict the pressure that will be put on the system or its impact on overall health care costs.

However, "I truly believe that the biggest economic component here is not direct medical costs," Michael Sherman, chief medical officer of Point32Health, tells Axios.

The bottom line: Being sick in America can be incredibly expensive — hence the huge amount of medical debt and large number of people who say they skip care due to cost.

Millions of Americans who were infected with the virus, and suffered lasting damage because of it, are about to find this out the hard way.

3. The coming coverage fight

The challenges of a poorly understood health condition.

Illustration of a health insurance claim form and a stamp saying "payment due" surrounded by bill envelopes.

Americans suffering from long COVID are running into the obstacles presented by health and safety net systems that are difficult to navigate in the best scenarios —and certainly aren&#x27;t set up to deal with the ambiguity of a new chronic disease.Why it matters: Long COVID patients can be hit with the financial double whammy of expensive medical bills and a reduction of income, if the condition impairs their ability to work.

Washington D.C.

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Dozens of health systems across the country have opened new clinics in the past two years to provide care to long COVID patients.

Why it matters: These long COVID clinics are providing a multidisciplinary approach that cuts across medical specialties to treat the wide range of symptoms patients face — but some providers say their resources are stretched thin in the face of a mounting public health crisis. 

How it works: Long COVID clinic officials tell Axios they bring in a number of specialists — including physical and occupational therapists, neurological specialists, and behavioral health providers — to tailor treatment depending on a patient's symptoms. 

At the Mayo Clinic, which began its own post-COVID clinic in the spring of 2020, providers may also treat other chronic diseases that have been exacerbated by COVID-19 infection, says Greg Vanichkachorn, a physician with the Mayo Clinic.  

But there's another component that's key to long COVID clinics: actually listening to patients.

"We often find that when patients come to get care for long-haul COVID, they feel abandoned," Vanichkachorn says. Patients, he says, may have already seen providers who didn't believe their self-described symptoms. 

Dr. Fernando Carnavali, a physician with Mount Sinai's Center for Post-COVID Care, also says listening to patients is key.

For some patients, that means guiding them through what it's like being chronically ill for the first time in their lives, he says. 

Yes, but: Unfortunately, providers say the demand for long COVID care far outstrips current capacity.

The biggest challenge is having enough multidisciplinary, well-resourced clinics to support long COVID patients, according to Janna Friedly, a professor of rehabilitation medicine at the University of Washington School of Medicine.

"So many health systems and clinics are not really well set up to be able to do that because it requires a lot of resources," she says. 

There's also a knowledge gap among providers on how to treat long COVID patients, Carnavali says, creating a further hole in resources. 

How a patient gets treated and pays for treatment in a clinic may be a challenge, too.

Patients either go directly to a long COVID clinic or are referred by a physician, providers tell Axios. Most people have to show proof they had COVID-19, although exceptions are made in some cases, including for people who got sick when testing was scarce.

But now there are fewer guarantees that their care will be covered — thanks to more skepticism by insurance companies and the rollback of pandemic policies including federal funding for COVID care for the uninsured. 

"At the very beginning, people were getting coverage everywhere. Then, insurance companies started realizing there is potentially a lot of cost associated with long COVID," Vanichkachorn says.

The Mayo Clinic sometimes has to offer additional information on necessary treatments to insurance companies that deny patients' claims. A growing number of long-haulers are challenging their denials in court. 

Most of the patients Friedly sees at the school's long COVID clinic have insurance, she says — but out-of-pocket expenses are certainly an issue.

The potential costs associated with long COVID care troubles Vanichkachorn at the Mayo Clinic. Many of the Mayo Clinic's patients, Vanichkachorn says, are people who can actually afford to take time off work or pay out-of-pocket for care that isn't covered. 

"I have not seen a lot of individuals from the labor side of the workforce," like meatpacking, he says. "We know these people get COVID. We know some of those people are experiencing long-haul COVID."

Providers who work with long COVID patients say what might help with insurance coverage and recognition of long COVID is a test that could definitively identify the condition — but such a one-size-fits-all approach isn't yet feasible since the medical underpinnings are still not well understood. 

What's next: The Biden administration proposed funding in its fiscal 2023 budget to develop more long COVID clinics. But Congress would still have to provide the money. 

4. The business of treating long COVID

Some providers say their resources are stretched thin.

Illustration of red cross surrounded by concentric circles of dollar symbols.

<a class="gtmContentClick" data-vars-link-text="Dozens of health systems" data-vars-click-url="https://www.beckershospitalreview.com/patient-safety-outcomes/13-hospitals-health-systems-that-have-launched-post-covid-19-clinics.html" data-vars-content-id="c32714c8-6082-4e05-99ab-97371275937a" data-vars-headline="The business of treating long COVID" data-vars-event-category="story" data-vars-sub-category="story" data-vars-item="in_content_link" href="https://www.beckershospitalreview.com/patient-safety-outcomes/13-hospitals-health-systems-that-have-launched-post-covid-19-clinics.html" target="_blank">Dozens of health systems</a> across the country have opened new clinics in the past two years to provide care to long COVID patients.Why it matters: These long COVID clinics are providing a multidisciplinary approach that cuts across medical specialties to treat the wide range of symptoms patients face — but some providers say their resources are stretched thin in the face of a mounting public health crisis.

Data: Axios/Ipsos poll; Chart: Simran Parwani/Axios

Most Americans think long COVID is a disability and approve of giving stronger support to people who have it, including workplace protections and free medical care, according to an Axios-Ipsos poll.

And they overwhelmingly favor requiring health insurance companies to cover treatment for it.

Why it matters: There are some partisan differences, but overall the poll suggests that Americans have sympathy for people battling long COVID and that they'd support moves to strengthen the safety net for them.

By the numbers: Seven out of 10 respondents said they'd support identifying people with long COVID as having a disability under the law and giving people workplace protections for it, while 67% said they'd support giving long COVID patients access to medical services and care for free.

Free medical care doesn't win majority support across the board. Just 47% of Republicans supported it, compared to 86% of Democrats and 67% of independents.

But workplace protections for people with long COVID won at least narrow majority support regardless of party, with 87% of Democrats, 56% of Republicans and 69% of independents favoring the idea.

The most popular policy by far: nine out 10 favored requiring health insurance companies to cover treatment for people with long COVID, including 97% of Democrats, 82% of Republicans and 90% of independents.

Methodology: This Axios/Ipsos Poll was conducted April 8-11 by Ipsos' KnowledgePanel®. This poll is based on a nationally representative probability sample of 1,043 general population adults age 18 or older.

The margin of sampling error is ±3.4 percentage points at the 95% confidence level, for results based on the entire sample of adults.

5. Axios-Ipsos poll: Americans support long COVID protections

The majority favors treating it as a disability and giving stronger support to people who have it.

Most Americans think long COVID is a disability and approve of giving stronger support to people who have it, including workplace protections and free medical care, according to an <a class="gtmContentClick" data-vars-link-text="Axios-Ipsos poll" data-vars-click-url="https://www.ipsos.com/en-us/news-polls/axios-ipsos-coronavirus-index" data-vars-item="in_content_link" href="https://www.ipsos.com/en-us/news-polls/axios-ipsos-coronavirus-index" target="_blank">Axios-Ipsos poll</a>.<ul><li>And they overwhelmingly favor requiring health insurance companies to cover treatment for it.</li></ul>

Here are some resources that might help you figure out your next steps if you have long COVID or think you might have it.

Centers for Disease Control and Prevention on long COVID

Boston Medical Center ReCOVer Long COVID Clinic

George Washington University COVID-19 Recovery Clinic

University of Washington Medicine Post-COVID-19 Rehabilitation and Recovery

Departments of Justice and Health and Human Services guidance on treating long COVID as a disability

EEOC on long COVID and the Americans with Disabilities Act

ResearchMatch.org (for people interested in participating in medical research)

6. Long COVID: Where to go for information and help

Here are some resources that might help you figure out your next steps.

Illustrator of a doctor holding a clipboard and stethoscopes arranged in a radial pattern.

Here are some resources that might help you figure out your next steps if you have long COVID or think you might have it.

Incidence of long COVID symptoms within 180 days of contracting COVID-19

What we know about long COVID

Illustration of COVID cells arranged in a radial pattern with red circles overlaid on the image. 