Senators urge better access to disability payments for long COVID patients

Several U.S. senators have called on the Social Security Administration to take steps to make it easier for people with long COVID to access disability benefits, actions that disability rights advocates and patients say are desperately needed.

Senators Tim Kaine (D-VA), Ed Markey (D-MA), and Tammy Duckworth (D-IL), Bernie Sanders (I-VT), Tina Smith (D-MN), Angus King (I-ME), and Richard Blumenthal (D-CT) signed the letter released on Monday. They said the agency should make the process more transparent, track and publish data on long COVID applications, and consider expanding the listing of impairments the SSA considers in applications for benefits.

"In some situations, these symptoms can be debilitating and prevent an individual from being able to work, take care of their family, manage their household, or participate in social activities," the senators wrote to SSA Commissioner Martin O'Malley.

Long COVID is a chronic health condition, which often includes fatigue, brain fog, and shortness of breath, following a COVID-19 infection. About three in 10 American adults have had long COVID at some point according to KFF's April analysis of long COVID data. About 17 million people had it in March 2024. In 2021, the U.S. Department of Health and Human Services released guidance on long COVID as a disability under the Americans with Disabilities Act.

Kaine has been outspoken about his own experience with long COVID and Sanders introduced legislation this month to provide $1 billion in funding each year for 10 years to support long COVID research by the National Institutes of Health.

Lisa McCorkell, co-founder of the Patient Led Research Collaborative, a group of long COVID patients and patients with associated illnesses, told States Newsroom, "Creating a ruling or listing would be a huge improvement — having that specific guidance for how to document long COVID, its related diagnoses, and its associated impairment would assist physicians who may not be as knowledgeable about long COVID."

The SSA administers disability benefits through Social Security Disability Insurance and Supplemental Security Income programs. The former program requires past employment payment into Social Security. The latter one does not have those restrictions and is based on financial need but to receive benefits, applicants have to prove they qualify as having a disability. The average monthly disability benefit for Social Security Disability Insurance is $1,538.

Long COVID's economic cost

Researchers and economists are still trying to understand the full impact of COVID-19 infections and long COVID on the workforce. A 2023 study estimated that COVID-19 brought down the labor force by 500,000 people and that the average loss of labor is equivalent to $9,000 in earnings. More than 25% of people with long COVID said their condition had an impact on their employment or work hours, according to a 2022 Minneapolis Fed paper.

Long COVID is not going to go away, particularly as government protections on the federal, state, and local level to reduce the spread of COVID are "severely lacking," said Marissa Ditkowsky, who serves as the disability economic justice counsel at the National Partnership for Women & Families, an organization focused on health, economic justice, and reproductive rights for women and families.

"While COVID continues to be a reality, we know that COVID disproportionately impacts women, disabled folks, and people of color, and the folks who are most impacted already have issues with access to appropriate health care, access to employment, and access to equitable wages," said Ditkowsky, who has long COVID herself. "A lot of folks might be working in low-wage jobs where they're in the service industry and constantly out there and more likely to contract COVID. It starts not just with the programs for how to deal with folks with long COVID, but how to prevent people from getting long COVID."

In the meantime, she said people with long COVID, as well as other people with disabilities, would benefit from the changes senators are advocating, such as restoring the treating physician rule, which was repealed in 2017. The rule allowed the agency to give greater weight to medical evidence from a physician who treated a patient for years compared to, say, a doctor who examines a patient once.

"Giving your own doctor the weight [they] deserve is huge," Ditkowsky said.

Mia Ives-Rublee, senior director of the disability justice initiative at the Center for American Progress, a liberal think tank, said there is an opportunity for the Biden administration or the next administration to revamp how the agency administers disability benefits. She said that given the aging population, there is more reason than ever for the agency to make significant improvements to the application process. Advocates for people with disabilities say it's also imperative to boost funding for the agency.

"Not only are we seeing an increase in disability in younger folks, but we're also looking at the big boomer generation getting older … We're going to see a huge pressure on the [SSA] and we need to see real changes and funding and think of ways to manage the wide variety of experiences that people have in order to deal with differences in applying for these benefits," she said.