Kaine, Duckworth, Markey Press Social Security Administration to Help Those with Long COVID Overcome Barriers to Disability Benefits

WASHINGTON, D.C. - Today, U.S. Senators Tim Kaine (D-VA) and Ed Markey (D-MA), who serve on the Senate Health, Education, Labor and Pensions (HELP) Committee, alongside Senator Tammy Duckworth (D-IL), led their colleagues in sending a letter to push the Social Security Administration (SSA) to address the barriers those with Long COVID face when applying for disability benefits with the Social Security Administration.

"According to recent estimates from the Centers for Disease Control and Prevention (CDC), 18.4 percent of U.S. adults have experienced Long COVID and over 25 percent of people with Long COVID say they experience significant limitations due to their condition," the senators wrote to SSA Commissioner Martin O'Malley. "…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."

"SSA should address the barriers those living with Long COVID face in accessing the benefits they have earned. There are straightforward steps SSA can take to make the disability application process easier and more transparent," the senators continued.

Specifically, the senators call on the SSA to:

• Track and publish data on applications that may be related to Long COVID by tracking applications that submit documentation related to COVID, Long COVID, and common Long COVID diagnoses. Data published should include the number of applications received, number of applications approved, number of applications denied, including the reason for denial, and number of applications appealed.
• Thoroughly review the conclusions of a report published by the National Academies of Sciences, Engineering, and Medicine and, if appropriate, create a new Long COVID ruling or expand the Listing of Impairments to include health effects identified in the report. Such ruling or listing should include guidance for evaluating claims involving common Long COVID diagnoses and be developed with input from Long COVID patient groups and attorneys specializing in these cases to establish criteria for evaluating claims related to Long COVID.
• Allow appointed representatives to see all exhibits at the initial and reconsideration disability claim stages. This would allow claimants' advocates to explain the basis for SSA's denials and possibly fix issues with the application.
• Restore the "treating physician rule" so a claimant's primary care physician or Long COVID specialist can have their medical opinion given the weight it deserves.

Kaine, Duckworth, and Markey have long advocated for those with Long COVID. Together, they introduced the Comprehensive Access to Resources and Education (CARE) For Long COVID Act,legislation to help people living with long-term COVID-19 symptoms by improving research and providing resources for people with Long COVID.

Last year, Kaine introduced the bipartisan Long COVID Support Act, which would accelerate research on Long COVID and provide information to patients and medical providers about Long COVID. Also last year, Kaine teamed up with the U.S. Department of Health and Human Services' (HHS) Agency for Healthcare Research and Quality (AHRQ) to host a first-of-its kind in-person summit in Richmond for providers treating Virginians living with Long COVID and Virginians experiencing Long COVID. That summit included Rachel Beale from Southampton County, who shared her experience applying for SSDI benefits after she was separated from her job due to the severity of her Long COVID symptoms. Beale also shared her story in a HELP Committee hearing in January 2024.

The letter was cosigned by Senators Angus King (I-MN), Bernie Sanders (I-VT), Richard Blumenthal (D-CT), and Tina Smith (D-MN).

Full text of the letter is available here and below:

Dear Commissioner O'Malley,

We are writing concerning claimants who apply for disability benefits from the Social Security Administration (SSA) because they live with disabling Long COVID. According to recent estimates from the Centers for Disease Control and Prevention (CDC), 18.4 percent of U.S. adults have experienced Long COVID and over 25 percent of people with Long COVID say they experience significant limitations due to their condition. The symptoms of Long COVID vary. However, those with Long COVID most commonly report post-exertional malaise, cognitive or neurological symptoms (i.e., "brain fog"), fatigue, dizziness, and gastrointestinal symptoms. 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.

At a hearing before the Senate Committee on Health, Education, Labor and Pensions, Rachel Beale, a witness from Virginia, shared her experience applying for Social Security Disability Insurance (SSDI) benefits after she was separated from her job as a human resource professional due to the severity of her Long COVID symptoms. Rachel took on the arduous task of filling out forms and collecting medical records for her SSDI application as she fought nausea, dizziness, and chronic fatigue. Despite Long COVID being recognized as a disability under the Americans with Disabilities Act, since her initial application in December 2021, Rachel has been denied benefits twice by SSA and is now awaiting a hearing in front of an Administrative Law Judge.

Recognizing the complexity of Long COVID, SSA commissioned a report from the National Academies of Sciences, Engineering, and Medicine (NASEM) on Long COVID and disability. The report found that Long COVID can result in the "inability to return to work (or school for children and adolescents) … for 6 months to 2 years or longer after the resolution of acute infection" with COVID. While the report found some overlap with SSA's current Listing of Impairments, the report also found "most individuals with Long COVID applying for Social Security disability benefits will do so on the basis of health effects not covered in the [SSA's Listing of Impairments]." SSA should address the barriers those living with Long COVID face in accessing the benefits they have earned. There are straightforward steps SSA can take to make the disability application process easier and more transparent. We request SSA take the following actions:

• SSA should track and publish data on applications that may be related to Long COVID by tracking applications that submit documentation related to COVID, Long COVID, and common Long COVID diagnoses. Data published should include number of applications received, number of applications approved, number of applications denied, including the reason for denial, and number of applications appealed.
• SSA should thoroughly review the conclusions of the NASEM report and, if appropriate, create a new Long COVID ruling or expand the Listing of Impairments to include health effects identified in the report. Such ruling or listing should include guidance for evaluating claims involving common Long COVID diagnoses and be developed with input from Long COVID patient groups and attorneys specializing in these cases to establish criteria for evaluating claims related to Long COVID. This will decrease the wait time for benefits by reducing the need for a hearing with a vocational witness.
• Advocates have also highlighted additional changes that would improve the SSDI process and make it easier for people with disabilities, including people with disabling Long COVID, to navigate the SSDI and Supplemental Security Income (SSI) process.
  1. SSA should allow appointed representatives to see all exhibits at the initial and reconsideration disability claim stages. This would allow claimants' advocates to explain the basis for SSA's denials and possibly fix issues with the application.
  2. SSA should restore the "treating physician rule" so a claimant's primary care physician or Long COVID specialist can have their medical opinion given the weight it deserves. Prior to 2017, SSA adjudicators could give deference to a patient's treating physician when a claimant had multiple medical opinions in their application. This meant that the physician a claimant relied upon for their care plan, or had the strong doctor-patient relationship with, had greater weight than physicians a patient only saw once for a consultation. In 2017, SSA eliminated the "treating physician rule." Restoring this rule would mean SSA applicants' physicians who are in charge of, and familiar with, their care would be given due consideration.

We request a response by September 30, 2024 on the actions SSA is taking to address issues facing those living with Long COVID. Thank you for your attention to this critical matter.

Sincerely,

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