This Long COVID Awareness Month, the President Must Take Action for the 1 in 5 Living with Long COVID

Why is it important for you to take action & spread the word?

Long COVID is one of the most serious public health and disability crises facing our country, affecting millions of Americans and their families. Yet far too many people still lack access to timely diagnosis, appropriate care, disability supports, and accurate information.

Constituent outreach is one of the most effective ways to drive action. Lawmakers prioritize the issues they hear about directly from the people they represent. By contacting President Trump and Vice President Vance today, you can help ensure they understand the urgency of Long COVID and take meaningful action through funding, oversight, research, and coordinated federal response.

Please consider taking just one minute to complete this action and make your voice heard. Your outreach can help move Long COVID from awareness to action, and improve outcomes for millions.

Background

Long COVID 1 is a serious chronic, disabling, and potentially fatal condition that can follow COVID-19 infection. In fall 2022, CDC serology data indicated that over three-quarters of the U.S. population had already been infected with SARS-CoV-2 (infection-induced antibodies),2 and CDC survey surveillance estimated that the prevalence of Long COVID among those previously infected was approximately 1 in 5 (~20%).3 This suggests that more than 55 million Americans may have already been living with some form of Long COVID more than three years ago. While prevalence estimates continue to vary across studies, NIH’s RECOVER Initiative has similarly reported Long COVID in the range of ~10–26% of infected adults (depending on case definition), consistent with commonly cited estimates of ~10–30%.4

A growing body of research confirms that Long COVID is associated with immune dysregulation and the development or worsening of secondary conditions, including autoimmune disease, cognitive impairment and decline, cardiovascular disease, organ damage, autonomic dysfunction and other neurological conditions, cancer, and increased risk of other serious long-term outcomes, including death. CDC/NCHS mortality surveillance identified 3,544 U.S. deaths (Jan 2020–Jun 2022) with Long COVID/PASC explicitly mentioned in death certificate text, demonstrating that Long COVID can be fatal; subsequent CDC-linked updates have reported that the national tally now exceeds 5,000 deaths, although experts emphasize this remains a substantial undercount due to inconsistent recognition and coding.5

BLS Current Population Survey (CPS) disability data show a substantial rise in disability during the pandemic era. Among the civilian noninstitutional population (age 16+), the number of Americans identified as having a disability increased from approximately 34.5 million in January 2020 to approximately 46.7 million in December 2025, an increase of about 35.5%, based on CPS monthly disability counts published in the Bureau of Labor Statistics’ Employment Situation tables (Table A-6).6,7 Labor market indicators reflect the same pattern: CPS data show the number of people with a disability in the U.S. civilian labor force (age 16+) rose from 6.42 million (February 2020) to 8.62 million (December 2024) (~34% increase), reaching 9.17 million in December 2025 (~43% above early-2020 levels).8 Independent analysis aligns with these trends; the Center for American Progress estimated that by the end of 2021 the United States had ~1.2 million more disabled people than in 2020, consistent with COVID-related impacts.9,10

Children are also significantly affected by Long COVID. NIH’s RECOVER-Pediatrics research has estimated that Long COVID may affect ~14% of adolescents and up to ~20% of school-aged children who have been infected.11 Because many children have difficulty describing symptoms, recognition often depends on caregivers and clinicians identifying changes in function and pursuing appropriate medical evaluation and care. In fact, analyses of pediatric burden suggest that Long COVID may now affect more children than asthma, historically the most common chronic condition in childhood, underscoring the scale of this crisis and the need for urgent public health and clinical response.12

RECOVER EHR-based analyses across 2020–2024 demonstrate that Long COVID incidence is ongoing, sustained, and growing, not resolving.13 Reinfections matter as each infection further increases the risk and burden of developing Long COVID.14, 15, 16

Long COVID represents one of the most serious public health and disability crises of our lifetime. It is affecting tens of millions of Americans, straining families and caregivers, disrupting educational attainment, and placing mounting pressure on healthcare systems and disability supports. It also threatens workforce participation and productivity, critical infrastructure resilience, and long-term economic stability.17, 18 Effects on the labor market are significant with estimates that Long COVID may account for 15% to 18% of unfilled jobs.19, 20

Evidence-based education and consistent public health messaging are among the most immediate, scalable tools available to strengthen prevention, accelerate progress toward treatments and cures, and improve timely clinical recognition and care. These efforts directly improve surveillance and data quality, which drives better research, faster innovation, and more effective policy, improving outcomes for millions. To succeed, however, programs must be built with patients, not just for patients, with patient-led and community-based partners fully engaged in program design, implementation, evaluation, and public trust-building.


References:

  1. Biden, J. R. (2022, April 5). Addressing the long-term effects of COVID-19 (Memorandum for the heads of executive departments and agencies). Federal Register.
    https://www.federalregister.gov/documents/2022/04/08/2022-07756/addressing-the-long-term-effects-of-covid-19

  2. U.S. Department of Health and Human Services. (2022, August). National Research Action Plan on Long COVID.
    https://www.autoimmuneinstitute.org/wp-content/uploads/2025/03/The-National-Research-Action-Plan-on-Long-COVID.pdf

  3. U.S. Department of Health and Human Services. (2023, August 1). Establishment of the Office of Long COVID Research and Practice. Federal Register.
    https://www.federalregister.gov/documents/2023/08/01/2023-16251/establishment-of-the-office-of-long-covid-research-and-practice

  4. American Hospital Association. (2023, April 6). HHS provides update on federal efforts to respond to Long COVID.
    https://www.aha.org/news/headline/2023-04-06-hhs-provides-update-federal-efforts-respond-long-covid

  5. U.S. Department of Health and Human Services. (2025). HHS advances fight against Long COVID with patient roundtables and new national efforts.
    https://www.hhs.gov/press-room/hhs-secretary-kennedy-long-covid-roundtables-action.htm

  6. National Academies of Sciences, Engineering, and Medicine. A Long COVID Definition: A Chronic, Systemic Disease State with Profound Consequences. Washington, DC: National Academies Press; 2024.
    https://www.nationalacademies.org/read/27768/chapter/1

  7. Clarke KE, Jones JM, Deng Y, et al. Seroprevalence of infection-induced SARS-CoV-2 antibodies—United States, September 2021–February 2022. MMWR Morb Mortal Wkly Rep. 2022;71:606–608.
    https://doi.org/10.15585/mmwr.mm7117e3

  8. Centers for Disease Control and Prevention, National Center for Health Statistics. Nearly one in five American adults who have had COVID-19 still have “Long COVID.” Published June 22, 2022.
    https://www.cdc.gov/nchs/pressroom/releases/20220622.html

  9. Hou Y, Gu T, Ni Z, et al. Global prevalence of long COVID, its subtypes, and risk factors: An updated systematic review and meta-analysis. Open Forum Infectious Diseases. 2025;12(9):ofaf533.
    https://doi.org/10.1093/ofid/ofaf533

  10. Rapaport L. Long COVID has caused thousands of US deaths: New CDC data. Medscape Medical News. January 3, 2024.
    https://www.medscape.com/viewarticle/long-covid-has-caused-thousands-us-deaths-new-cdc-data-2024a100006l

  11. U.S. Bureau of Labor Statistics. Table A-6. Employment status of the civilian population by sex, age, and disability status, not seasonally adjusted. Last modified January 9, 2026.
    https://www.bls.gov/news.release/empsit.t06.htm

  12. U.S. Bureau of Labor Statistics. The Employment Situation. Economic News Release. Last modified January 9, 2026.
    https://www.bls.gov/news.release/empsit.toc.htm

  13. Federal Reserve Bank of St. Louis. Civilian labor force—With a disability, 16 years and over (LNU01074597). Updated January 9, 2026.
    https://fred.stlouisfed.org/series/LNU01074597

  14. Roberts L, Ives-Rublee M, Khattar R. COVID-19 likely resulted in 1.2 million more disabled people by the end of 2021—Workplaces and policy will need to adapt. Center for American Progress. February 9, 2022.
    https://www.americanprogress.org/article/covid-19-likely-resulted-in-1-2-million-more-disabled-people-by-the-end-of-2021-workplaces-and-policy-will-need-to-adapt/

  15. Cusak J. Release: COVID-19 likely resulted in 1.2 million more disabled people by the end of 2021, according to new CAP analysis. Center for American Progress. February 9, 2022.
    https://www.americanprogress.org/press/release-covid-19-likely-resulted-in-1-2-million-more-disabled-people-by-the-end-of-2021-according-to-new-cap-analysis/

  16. National Institutes of Health RECOVER Initiative. NIH-funded study finds long COVID affects adolescents differently than younger children. Published August 21, 2024.
    https://recovercovid.org/news/nih-funded-study-finds-long-covid-affects-adolescents-differently-younger-children

  17. Gross RS, Carmilani M, Stockwell MS. Long COVID in young children, school-aged children, and teens. JAMA Pediatrics. 2025;179(7):809.
    https://jamanetwork.com/journals/jamapediatrics/fullarticle/2834486

  18. Mandel H, Yoo YJ, Allen AJ, et al; RECOVER EHR Cohort. Long COVID incidence proportion in adults and children between 2020 and 2024: An electronic health record-based study from the RECOVER Initiative. Clinical Infectious Diseases. 2025;80(6):1247–1261.
    https://doi.org/10.1093/cid/ciaf046

  19. Centers for Disease Control and Prevention. Long COVID basics. Updated July 24, 2025.
    https://www.cdc.gov/long-covid/about/index.html

  20. Bowe B, Xie Y, Al-Aly Z. Acute and postacute sequelae associated with SARS-CoV-2 reinfection. Nature Medicine. 2022;28:2398–2405.
    https://doi.org/10.1038/s41591-022-02051-3

  21. Babalola TK, et al. SARS-CoV-2 reinfection and incidence of post-acute sequelae of COVID-19 (PASC) among essential workers in New York: A retrospective cohort study. The Lancet Regional Health – Americas. 2024;42:100984.
    https://www.thelancet.com/journals/lanam/article/PIIS2667-193X%2824%2900311-9/fulltext

  22. Waters A. Long COVID: Government failure to recognise disease as occupational is “unconscionable,” say unions. BMJ. 2025;391:r2407.
    https://www.bmj.com/content/391/bmj.r2407

  23. Silver SR, Li J, Ford ND, Shi D, Saydah SH. Prevalence of COVID-19 and long COVID by industry and occupation: Behavioral Risk Factor Surveillance System, 2022. American Journal of Industrial Medicine. 2025;68(1):26–52.
    https://pmc.ncbi.nlm.nih.gov/articles/PMC11649465/

  24. Centers for Disease Control and Prevention, National Institute for Occupational Safety and Health. Long COVID and occupational medicine practice. CDC NIOSH Science Blog. January 22, 2024.
    https://www.cdc.gov/niosh/blogs/2024/long-covid.html

  25. New York State Insurance Fund. NYSIF releases report on long-term impacts of COVID-19. Published January 24, 2023. https://ww3.nysif.com/en/FooterPages/Column1/AboutNYSIF/NYSIF_News/2023/20230124LongCovid/