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Opinion | Long covid research foreshadows a disability wave

Opinion | Long covid research foreshadows a disability wave

Long covid, the symptoms that can linger for months or even years after infection with the pandemic virus, is still a subject of considerable uncertainty. The virus can damage the body in a multitude of ways, leading researchers to list more than 200 symptoms, and there is no single diagnostic test or cure. But even with the unknowns, evidence suggests that long covid could burden millions of people. Its effects — on individuals, but also on society at large — could be protracted and expensive.

This is the implication of two just-published studies from the National Academies of Sciences, Engineering and Medicine. The first study, published on June 5, examined the potential impairment and disability caused by long covid. The second study, published on June 11, provided a much-needed consensus definition — there have been numerous different ones previously — to help patients, doctors, researchers and policymakers work from the same page.

The new definition states that long covid is “an infection-associated chronic condition” that occurs after SARS-CoV-2 infection, “is present for at least 3 months” and is a “continuous, relapsing and remitting, or progressive disease state that affects one of more organ systems.” The definition adds that long covid can manifest itself in multiple ways, can range from mild to severe; impact children and adults; follow asymptomatic, mild or severe covid; and exacerbate preexisting health conditions.

The first study says the symptoms of long covid include: chronic fatigue, cognitive difficulties, sleep disturbances, muscle and joint pain, and “brain fog” that encompasses inattention, forgetfulness and inability to concentrate or form words. Long covid “can impact people across the life span, from children to older adults, as well as across sex, gender, racial, ethnic, and other demographic groups,” the study found. There is as yet no diagnostic test for long covid, and because pandemic viral testing was so uneven, the study suggests that a positive coronavirus test should not be the sole criterion for diagnosing long covid. New research from Washington University in St. Louis and the Veterans Affairs St. Louis Health Care system finds that patients who were hospitalized with covid are more likely to have serious health impacts several years later.

Researchers are just beginning to characterize the mechanisms and health effects of long covid. Still unknown is the degree to which it will add to the burden of disability, over the baseline morbidity people would have experienced without it. Along with the health effects might come a fiscal one: If long covid prevents people from working or studying, it could lead to a wave of disability claims to governments, a significant new social expense.

The first study notes that the Social Security Administration runs two programs to provide disability benefits: Social Security Disability Insurance, or SSDI, and Supplemental Security Income, or SSI. As of December, 8.5 million Americans received benefits through SSDI and 7.4 million Americans through SSI. Based on population surveys, the researchers found, in 2022 approximately 8.9 million adults in the United States reported long covid symptoms. Just recently, a separate study found an estimated 6.9 percent of adults — 17.8 million — had ever had long covid as of early 2023. So far, applications for disability benefits have remained flat since the onset of the pandemic. But if some fraction of those who had long covid apply and qualify for benefits, that would mean sizable new spending.

To receive U.S. disability benefits today, an applicant must meet a statutory definition of disability, which for adults is the “inability to engage in any substantial gainful activity by reason of any medically determinable physical or mental impairment” that can lead to death or “can be expected to last for a continuous period of not less than 12 months.” The process of determining whether an individual qualifies is based in part on the Social Security Administration’s Listing of Impairments — so far, long covid is not included, although disability from long covid can be established with certain medical evidence. Importantly, the study points out there are three frequently reported health effects that can significantly interfere with the ability to perform work or school activities and might not be captured in the listings: chronic fatigue, cognitive impairment, and dysfunction of the nerves that control body functions such as heart rate, body temperature, breathing rate, digestion and sensation.. According to the first study, the Social Security Administration is already expanding its guidance for dealing with long covid applicants.

These studies are early warnings in what will probably be a long process. The nation must prepare to cope accurately and compassionately with a wave of illness and impairment that might come.

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