Nationwide, an estimated 23.5 million COVID-19 survivors will develop long COVID

Washington (March 17, 2022) – Senators Edward J. Markey (D-Mass.), Tim Kaine (D-Va.), and Tammy Duckworth (D-Ill.) today called on the Biden Administration to improve guidance for those living with post-COVID conditions, also known as long COVID, who apply for disability benefits. Existing Social Security Administration (SSA) guidance requires applicants for disability benefits to provide a positive COVID-19 test or diagnosis with limited exceptions, which many Americans living with long COVID cannot produce due to barriers in accessing testing, especially for communities of color, and the difficulties in diagnosing long COVID patients who also experience disorders like Postural Orthostatic Tachycardia Syndrome (POTS) and Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS). Research suggests that one-third to over one-half of surviving COVID patients will develop symptoms of long COVID, which could include symptoms such as debilitating fatigue, brain fog, shortness of breath, chest pain, heart palpitations, exercise intolerance, and chronic joint or muscle pain.

“We are concerned that, as currently drafted, this guidance may inappropriately limit access to disability benefits for those with long COVID,” write the Senators to Social Security Administration Acting Commissioner Kilolo Kijakazi. “We urge you to revise this testing requirement to acknowledge that at many times throughout the pandemic, COVID testing has been inaccessible, especially for communities of color, and to do more to ensure individuals experiencing disability due to long COVID have the support they need when applying for disability benefits.”

A copy of the Senators’ letter can be found HERE.

Senators Markey, Kaine, and Duckworth request responses to questions that include:

• How many applications to date has SSA received for adult disability cases including an allegation or diagnosis of COVID-19?
• Was the lack of a diagnostic test consistent with COVID-19 symptoms such as lung abnormalities the primary reason for any denials? If so, how many denials resulted from the lack of presentation on scans or tests?
• Has SSA considered alternatives to the testing or diagnostic testing requirements for disability qualification?
• What has SSA done to ensure materials are accessible to everyone, including those who may lack access to the internet and individuals with limited English proficiency?
• What has SSA done to ensure patients with COVID and long COVID are aware of long COVID symptoms, diagnosis, and SSA disability guidance?
  
   
  Earlier this month, the Senators introduced the CARE for Long COVID Act, which would help people living with long-term COVID-19 symptoms, including by supporting legal aid and social service assistance to long COVID patients and encouraging additional federal guidance on long COVID as a disability.
  
   

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