Several U.S. senators called on the Social Security Administration to take steps to make it easier for people with Long COVID to access disability benefits, measures disability rights advocates and patients say are urgently needed.
Senators Tim Kaine (D-Virginia), Ed Markey (D-Massachusetts), Tammy Duckworth (D-Illinois), Bernie Sanders (I-Vermont), Tina Smith (D-Minnesota), Angus King (I-Maine) and Richard Blumenthal (D-Connecticut) signed the letter released Monday. They said the agency should make the process more transparent, track and publish data on long-COVID claims and consider expanding the list of impairments the SSA considers in benefit applications.
“In some situations, these symptoms can be debilitating and prevent a person from working, caring for their family, managing their home, or participating in social activities,” the senators wrote to SSA Commissioner Martin O’Malley.
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Long COVID is a chronic condition that often causes fatigue, difficulty concentrating, and shortness of breath after a COVID-19 infection. According to KFF’s April analysis of Long COVID data, about three in 10 American adults have had Long COVID at some point. As of March 2024, that number was about 17 million people. In 2021, the U.S. Department of Health and Human Services published guidance on Long COVID as a disability under the Americans with Disabilities Act.
Kaine has spoken openly about his own experience with Long COVID, and Sanders introduced a bill this month that would provide $1 billion annually for 10 years for Long COVID research at the National Institutes of Health.
Lisa McCorkell, co-founder of the Patient Led Research Collaborative, a group of long-COVID patients and patients with related conditions, told States Newsroom, “Creating a policy or list would be a huge improvement – such specific guidance on documenting long-COVID, the diagnoses associated with it and the impairments associated with it would help physicians who may not be as well versed in long-COVID.”
The SSA administers disability benefits through the Social Security Disability Insurance and Supplemental Security Income programs. The first program requires past Social Security contributions. The second program has no such restrictions and is based on financial need. However, to receive benefits, applicants must show that they are considered disabled. The average monthly Social Security Disability Insurance disability benefit is $1,538.
The economic costs of Long COVID
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 decimated the labor force by 500,000 people and that the average loss of labor was equivalent to $9,000 in earnings. More than 25% of people with Long COVID reported that their condition had an impact on their employment or work hours, according to a 2022 paper from the Minneapolis Fed.
“Long Covid” is not going away, especially because there are “significant deficiencies” in government protections at the federal, state and local levels to contain the spread of Covid-19, says Marissa Ditkowsky, an economic justice adviser for people with disabilities 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 affects women, people with disabilities, people of color, and the people most affected are already struggling with access to adequate health care, access to employment, access to decent wages,” said Ditkowsky, who herself has long COVID. “Many people may be working in low-paying service sector jobs and are constantly outside and are at higher risk of contracting COVID. It starts not only with the programs to deal with people with long COVID, but also how to protect people from long COVID.”
In the meantime, people with long Covid and other people with disabilities would benefit from the changes called for by the senators, she said. These include the reinstatement of the “treating physician rule” that was repealed in 2017. This rule allowed the agency to give more weight to medical evidence from a doctor who has treated a patient for years than, for example, that of a doctor who only examines a patient once.
“It is extremely important to give your doctor the importance he or she deserves,” said Ditkowsky.
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 overhaul how the agency administers disability benefits. Given the aging population, there is more reason than ever that the agency needs to significantly improve the application process. Advocates for people with disabilities say it is also imperative to increase funding for the agency.
“Not only are we seeing an increase in disabilities among younger people, but we’re also seeing the baby boomer generation getting older… We’re going to see tremendous pressure on the (SSA) and we need to see real change and funding and think of ways to deal with the many different experiences that people have, to deal with the differences in applying for these benefits,” she said.
