‘Concern is real’ about long Covid’s impact on Americans and disability claims, report says

The Covid pandemic has been called a “mass-disabling event” since early on — the kind of once-in-a-generation public health crisis that could shape millions of people’s lives forever. But while more people self-identified as disabled since the pandemic began, applications for disability benefits have stayed level, according to data from the Social Security Administration. 

That could change as the burden of long Covid becomes clearer. A new report commissioned by the SSA in 2022 captures what we know so far about long Covid, and hints at how the nation’s disability benefits system might need to shift in the wake of the pandemic. 

Over 15 million people in the United States received benefits as of December through Social Security Disability Insurance and Supplemental Security Income. “Concern is real that [long Covid] may result in an increase in applications for disability,” the report says. 

As of April, 5.3% of U.S. adults — 13.7 million people — had long Covid, according to survey data from the Centers for Disease Control and Prevention. Studies suggest women are nearly twice as likely as men to experience long Covid.

However, long Covid is difficult to map onto the agency’s existing eligibility requirements for disability insurance, says Stephanie Rennane, an economist at the RAND Corporation who’s studied disability benefits. “The severity and duration of the condition can vary a lot, and in ways that we can’t fully predict yet. Even after 4 years, the research landscape in this area is evolving quickly and summary reports like this are a helpful way to translate the state of knowledge into something actionable for policymakers,” she said in an email. 

A group of experts from across medical disciplines met seven times under the direction of the National Academies of Science, Engineering and Medicine to distill the scientific literature. The outcome is a 200-plus-page document outlining long Covid’s wide reach, both in the population and in individual people’s bodies — taking a toll on various organ systems. 

“We conclude that long Covid is a real condition,” committee chair Paul Volberding, a professor emeritus of medicine at UCSF, said in a video conference Wednesday. “People suffering from it have to be listened to and have to be believed and deserve the best access possible to the management strategies.”

The Social Security Administration has not yet said what it will do with the report’s conclusions. The agency is in the process of updating its long Covid guidance.

Here are key takeaways from the report, released this week:

Long Covid is most likely a long-term chronic illness

People with persistent long Covid symptoms “generally improve over time,” the report says, but recovery can plateau six to 12 months after the initial infection. Just 22% of people who have symptoms at six months post-infection make a full recovery by one year. Among those who don’t improve by one year, most remain stable but some worsen. Given large, ongoing studies of long Covid, the public should have more information soon on what recovery trajectories look like after one year.

Despite long Covid’s persistence, there are no treatments for it. For many people, care looks like a combination of non-pharmacological approaches: reducing stressors and triggers, getting mobility supports or aides, working on nutrition and energy management. 

However, data is building on what drugs or other treatments might help long Covid patients. A handful of studies have shown enhanced external counterpulsation, or EECP, could provide some benefit to long Covid patients with endothelial dysfunction, a form of coronary artery disease without blockages. A clinical trial is underway to validate those findings. Cognitive behavioral therapy, or CBT, is also being investigated for long Covid, since mental health disorders may be part of a cocktail of issues worsening people’s quality of life. However, attributing long Covid “just to anxiety or preoccupation with health” runs contrary to scientific evidence, said one of the report’s authors, Mount Sinai clinical neuropsychologist Jacqueline Becker.  

Some medications are also being studied, including rintatolimod (brand name Ampligen), which trials suggest might help increase exercise tolerance in people with insurmountable fatigue or whose symptoms worsen after exerting themselves. Those two symptoms are common hallmarks of long Covid and myalgic encephalomyelitis, or ME. The diabetes drug metformin is also being tried for long Covid after some research found it could reduce the incidence of the condition. In fibromyalgia patients, metformin was found to help cells better manage energy usage.

Better grasp of childhood long Covid is needed

Long Covid also affects children and adolescents, with important implications for young people’s development. The NASEM report highlights researchers’ alarm over a potential link between Covid and diabetes. Studies found a higher incidence rate of type 1 diabetes among children in the first year of the pandemic compared with pre-pandemic period, and again in the second year of the pandemic. (Increases in rates of type 2 diabetes after infection have been identified in adults.) More study is needed to figure out what the connection might be, the reports’ authors said, and to understand how long Covid can affect children differently than adults. 

Rates of long Covid are thought to be lower in children and teens than in adults. But studies from a dozen countries show children are dealing with similar symptoms: in children, fatigue was found to be the most prevalent long Covid symptom, followed by headaches. These problems may cause children to miss school or other daily activities.

Some small studies have also reported that children who have had Covid experienced more issues with attention, mood and anxiety. Children with long Covid may also experience new or worsening mental health conditions or psychiatric symptoms, which can lead to behavioral problems at school, changes to eating or sleeping, and other signs associated with pediatric depression or anxiety, the report says.

Long Covid showing up in many ways, and maybe as other conditions

There is a list of over 200 symptoms associated with long Covid, which makes defining the condition particularly daunting. In order to describe the full range of possible effects from long Covid, the NASEM committee pulled average estimates for impacts on different body systems based on the scientific literature. The experts report:

• About 4% of people who had Covid had long-term cardiovascular health effects.
• About 6% of people who had Covid developed neurological and psychiatric conditions.
• Another 6% experienced gastrointestinal disorders, though the rate of GI issues varied widely across studies.
• The prevalence of respiratory problems at 6 months to two years was around 2% – 4%.
• About 1% – 2% of people previously infected have endocrine conditions, about the same levels as estimates of genitourinary disorders post-Covid.

Some of the most common and costly symptoms of long Covid — ones that can really impact function and are difficult to manage — include chronic fatigue, post-exertional symptom exacerbation (PEM), post-Covid cognitive impairment (PCCI), and autonomic dysfunction. 

Fatigue is “the most dominant symptom of long Covid in several studies, ranging from 19% to 76.3% of patients,” the report says. PEM is when minor effort — physical or mental — can wipe out a person’s energy and cause a worsening of symptoms in the days following. A recent analysis found 87% of long Covid patients had PEM. Cognitive impairment includes difficulties with thinking, memory, attention, processing information quickly, language, and executive functions like problem-solving or multitasking (the strongest studies found about 24% of people had PCCI after infection, and it lasted anywhere from several months to over a year). Black, Hispanic, older-aged people and women seem to be most vulnerable to PCCI, the report says. 

Autonomic dysfunction, which is also called dysautonomia, is a malfunctioning of the autonomic nervous system that can cause balance problems, lightheadedness, brain fog, an elevated heart rate, and nausea, among other symptoms. It occurs in 25% to 66% of long Covid patients, according to the scientific literature. And dysautonomia can present as postural orthostatic tachycardia syndrome, or POTS, which is thought to be underdiagnosed. 

Some people with long Covid also report changes to their sense of taste and smell, or visual and auditory changes, like blurry vision, or ringing ears. Kidney function is also known to be harmed in cases of severe acute Covid, but may also be imperiled in those with long Covid, the report says.

Making for an even greater diagnostic challenge, long Covid has many similarities to an array of other complex chronic conditions. Patients share similarities to those with ME/CFS, fibromyalgia, POTS, post-treatment Lyme disease and hypermobile Ehlers-Danlos syndrome. On average, scientific literature finds 40% – 70% of long Covid patients meet the criteria for ME/CFS, though rates vary depending on the disease definition that is used. And up to 39% meet the criteria for fibromyalgia (which itself is often confused with other diseases and disorders).

Disability listings might not capture long Covid

Long Covid’s chameleonic nature poses a challenge to the Social Security Administration, which determines whether people are so disabled by their condition that they can’t work. The agency has a listing of conditions and impairments that are considered severe enough to interrupt someone’s working life. Long Covid isn’t on the list. Neither are conditions like ME/CFS or fibromyalgia.

That means “most individuals with long Covid applying for Social Security disability benefits will do so on the basis of health effects not covered in the Listings,” the report’s authors write. And while the administration has issued guidance to its adjudicators on how to field long Covid applications, “it does not provide sufficient guidance for assessing functional status or weighing severity,” the report says.

To receive disability benefits, a person has to meet the statutory definition of disability, which for adults means they have a serious and “medically determinable” physical or mental disability that keeps them from participating in the labor force and earning income for at least a year. Children are considered disabled if they have “severe functional limitations” due to a severe physical or mental disability.

Proving disability status to gain benefits can be a long and arduous process. If someone’s disability doesn’t match the list of pre-approved impairments, the agency then determines whether it thinks the applicant could hold any job based on their documented level of function (or, for children, whether they could generally participate in their lives). 

Currently, SSA requires people applying for disability because of long Covid to provide records that include a thorough medical history, details on their diagnosis, the onset and duration of symptoms, and a prognosis, as well as listing any related conditions, treatments and functional limitations (physical and mental). SSA doesn’t require a positive SARS-CoV2 test result for a long Covid diagnosis.

“The ambiguity in diagnosis and variation in symptoms, severity and duration of long COVID and limited knowledge base make it difficult to include long COVID as a listed impairment for SSA at this point,” said Rennane, the economist. “But hopefully this report will give some guidance as to indicators to watch for (such as a prior hospitalization for COVID) which may help determine when the impacts and duration could be severe enough to meet SSA’s eligibility standards for disability insurance.”

STAT’s coverage of chronic health issues is supported by a grant from Bloomberg Philanthropies. Our financial supporters are not involved in any decisions about our journalism.