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REPORT COVIDHealth and Social ProgramsInequalityLong COVIDUSWorkers

Understanding and Addressing Long COVID

This report was published in conjunction with the Congressional Progressive Caucus Center. You can view the entire report here.

Executive Summary

Key Findings

  • Commonly reported symptoms of Long COVID include difficulty concentrating or thinking, difficulty breathing, fatigue that interferes with daily life, post-exertional malaise, and muscle and joint pain. 
  • Long COVID is similar in various respects to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), an often-disabling illness. If research on ME/CFS had been better funded in the past, the U.S. would be in a better position today to address Long COVID.
  • According to a May 2022 GAO report, 10 to 30 percent of COVID-19 survivors develop Long COVID. Subsequent research is generally consistent with this range. 
  • The Census Household Pulse Survey (HPS) added questions about post-COVID conditions in June 2022. In early August 2022, about 7.6 percent of all U.S. adults reported currently having one or more symptoms lasting 3 months or longer that they did not have prior to having COVID-19.
  • Currently, the best US estimate is that at least 3 to 5 million US adults were living with activity-limiting symptoms of post-COVID conditions in November 2021. The first data from the HPS on Long-COVD-related disabilities will be available in October 2022. 
  • In the monthly Current Population Survey, the number of prime working-age adults reporting disabilities in at least one of six categories has spiked in the aftermath of the initial COVID-19 crisis. The largest single increase is due to people reporting difficulties concentrating or remembering.
  • About 1.5 million Americans had ME/CFS prior to COVID-19, and that total ME/CFS prevalence could rise to over 5 million people due to COVID-19 and Long COVID.  
  • The body of research on the labor market impacts of Long COVID on US workers is relatively limited, but growing. A recent working paper estimates that somewhere around 500,000 to 750,000 people may have left the labor force by June 2022 due to post-COVID conditions. 

Key Recommendations

Prevention

  • Invest at least $7.84 billion over the next five years to modernize the currently fragmented and underfunded public health information system. 
  • Provide additional funding for COVID-19 prevention to combat future surges and accelerate vaccine distribution. 
  • Provide funding for global vaccination efforts, as previously requested by the Biden administration.
  • Support a new issuance of at least $650 billion in Special Drawing Rights (SDRs), international reserve assets, at the International Monetary Fund.  
  • Promote and invest in improvements to indoor air quality. 

Medical Research and Health Care

  • Establish and adequately fund a National Institute on Complex Chronic Conditions (including Long COVID, ME/CFS, Post-Treatment Lyme Disease Syndrome; Mast Cell Activation Syndrome (MCAS), and Ehlers-Danlos syndrome) at the National Institutes of Health. 
  • This new institute should be structured in a way that is consistent with recommendations made by members of the Long-COVID and associated-conditions patient community earlier this year. 
  • Ensure that people with Long COVID and other complex chronic conditions have access to free or affordable health insurance that provides the care and treatments they need. 
  • Providing funding to ensure equitable access to Long COVID treatment, multidisciplinary Long COVID clinics, public education, and medical-legal partnerships that help individuals with Long COVID access employment accommodations and social services.

Social Insurance

  • Ensure that all workers have access to paid leave, paid sick days, and temporary disability insurance. 
  • Remove barriers, including lengthy waiting periods, to Social Security Disability Insurance and Supplemental Security Income for people with long-term disabilities.
  • Increase access and eligibility to Unemployment Insurance for people with Long COVID and other medical conditions and disabilities. 
  • Provide HUD rental housing assistance to all eligible people with disabilities.

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