Long COVID: Context,Considerations,and Calls for Change

Al-Aly Z Davis H McCorkell L , et al. Long COVID science, research and policy. Nat Med. 2024;30(8):2148-2164. doi:10.1038/s41591-024-03173-6

LCA statements - long-COVID alliance. https://longcovidalliance.org/resources/lca-statements/. Accessed September 9, 2024.

What is Health Equity? Health equity. CDC. https://www.cdc.gov/health-equity/what-is/index.html. Accessed 10 September 2024.

Advancing equity at HHS. HHS.gov. 2024. https://www.hhs.gov/equity/index.html. Accessed September 19, 2024.

Fact Sheet . Advancing health equity across HHS. HHS.gov. https://www.hhs.gov/equity/fact-sheet-advancing-health-equity-across-hhs/index.html. Accessed 10 September 2024.

Presidential COVID-19 Health Equity Task Force Final Report and Recommendations . Presidential COVID-19 health equity task force; 2021. https://s3.us-gov-west-1.amazonaws.com/cg-d102dd1b-a880-440b-9eae-e2445148aee9/s3fs-public/documents/PresidentialCOVID19HealthEquityTaskForceFinalRecommendations.pdf. Accessed 30 August 2024.

Tsampasian V Elghazaly H Chattopadhyay R , et al. Risk factors associated with post−COVID-19 condition: a systematic review and meta-analysis. JAMA Intern Med. 2023;183(6):566-580. doi:10.1001/JAMAINTERNMED.2023.0750

Khullar D Zhang Y Zang C , et al. Racial/ethnic disparities in post-acute sequelae of SARS-CoV-2 infection in New York: an EHR-based cohort study from the RECOVER program. J Gen Intern Med. 2023;38(5):1127-1136. doi:10.1007/S11606-022-07997-1

Centers for Disease Control and Prevention . Nearly one in five American adults who have had COVID-19 still have “long COVID”. National Center for Health Statistics. https://www.cdc.gov/nchs/pressroom/nchs_press_releases/2022/20220622.htm. Accessed 10 September 2024.

Pfaff ER Girvin AT Bennett TD , et al. Identifying who has long COVID in the USA: a machine learning approach using N3C data. Lancet Digit Heal. 2022;4(7):e532-e541. doi:10.1016/S2589-7500(22)00048-6

Banerjee A . Disparities by social determinants of health: links between long COVID and cardiovascular disease. Can J Cardiol. 2024;40(6):1123-1134. doi:10.1016/j.cjca.2024.02.017

Asthma and Allergy Foundation of America . Asthma disparities in America: a roadmap to reducing burden on racial and ethnic minorities. 2020. Retrive from: https://aafa.org/wp-content/uploads/2022/08/asthma-disparities-in-america-burden-by-race-ethnicity-executive-summary.pdf

Boehmer TK Koumans EH Skillen EL , et al. Racial and ethnic disparities in outpatient treatment of COVID-19 ― United States, January–July 2022. MMWR Morb Mortal Wkly Rep. 2022;71(43):1359-1365. doi:10.15585/MMWR.MM7143A2

Xie Y Choi T Al-Aly Z . Association of treatment with nirmatrelvir and the risk of post–COVID-19 condition. JAMA Intern Med. 2023;183(6):554-564. doi:10.1001/jamainternmed.2023.0743

Kachen A Pharr JR . Health care access and utilization by transgender populations: a United States transgender survey study. Transgend Health. 2020;5(3):141-148. doi:10.1089/TRGH.2020.0017

Au L Capotescu C Eyal G Finestone G . Long covid and medical gaslighting: dismissal, delayed diagnosis, and deferred treatment. SSM Qual Res Heal. 2022;2:100167. doi:10.1016/J.SSMQR.2022.100167

Health equity task force . Office of minority health. https://minorityhealth.hhs.gov/health-equity-task-force. Accessed 19 September 2024.

Javed Z Haisum Maqsood M Yahya T , et al. Race, racism, and cardiovascular health: applying a social determinants of health framework to racial/ethnic disparities in cardiovascular disease. Circ Cardiovasc Qual Outcomes. 2022;15(1):e007917. doi:10.1161/CIRCOUTCOMES.121.007917

Braveman PA Arkin E Proctor D Kauh T Holm N . Systemic and structural racism: definitions, examples, health damages, and approaches to dismantling. Health Aff. 2022;41(2):171-178. doi:10.1377/HLTHAFF.2021.01394

Alegría M Araneta MR Rivers B . The national advisory Council on minority health and health disparities reflection. Am J Public Health. 2019;109(Suppl 1):S14-S15. doi:10.2105/AJPH.2019.304961

Owens B . Mapping biomedical research in the USA. Lancet. 2014;384(9937):11-14. doi:10.1016/S0140-6736(14)61114-4

Implementation Plan Office of the Assistant Secretary for Health . The implementation of the government-wide response to long COVID. 2024. Retrieved from: https://www.hhs.gov/sites/default/files/long-covid-update-2024.pdf

Packalen M Bhattacharya J . NIH funding and the pursuit of edge science. Proc Natl Acad Sci U S A. 2020;117(22):12011-12016. https://www.pnas.org/doi/abs/10.1073/pnas.1910160117

The National Institutes of Health (NIH) funds studies to advance the understanding, diagnosis, and treatment of post-acute sequalae of SARS-CoV-2 (PASC), including Long COVID. [Review of the National Institutes of Health (NIH) funds studies to advance the understanding, diagnosis, and treatment of post-acute sequalae of SARS-CoV-2 (PASC), including Long COVID.]. RECOVER- Researching COVID to Enhance Recovery; National Institutes of Health. Retrieved September 5, 2024, from: https://recovercovid.org/funding

New Long COVID research launched by PolyBio’s global consortium of scientists. BioSpace. 2024. https://www.biospace.com/new-longcovid-research-launched-by-polybio-s-global-consortium-of-scientists

McCorkell L Peluso MJ . Long COVID research risks losing momentum–we need a moonshot. Nature. 2023;622(7983):457-460. https://www.nature.com/articles/d41586-023-03225-w

Byambasuren O Stehlik P Clark J Alcorn K Glasziou P . Effect of covid-19 vaccination on long covid: systematic review. BMJ Med. 2023;2(1):e000385. doi:10.1136/bmjmed-2022-000385

Thaweethai T Jolley SE Karlson EW , et al. Development of a definition of postacute sequelae of SARS-CoV-2 infection. JAMA. 2023;329(22):1934-1946. doi:10.1001/JAMA.2023.8823

Gross RS Thaweethai T Kleinman LC , et al. Characterizing long COVID in children and adolescents. JAMA. 2024;332:1174-1188. doi:10.1001/JAMA.2024.12747

Ganesan A Arimondo PB Rots MG Jeronimo C Berdasco M . The timeline of epigenetic drug discovery: from reality to dreams. Clin Epigenetics. 2019;11(1):174. doi:10.1186/S13148-019-0776-0

Kaplan K Mendenhall E . Framing long Covid through patient activism in the United States: patient, provider, academic, and policymaker views. Soc Sci Med. 2024;350:116901. doi:10.1016/j.socscimed.2024.116901

Gardner E Lockrey A Stoesser KL , et al. Challenges in receiving care for long COVID: a qualitative interview study among primary care patients about expectations and experiences. Ann Fam Med. 2024;22:369-374. doi:10.1370/afm.3145

National Academies of Sciences, Engineering, and Medicine . A Long COVID Definition: A Chronic, Systemic Disease State with Profound Consequences. Washington, DC: The National Academies Press; 2024.

Whittington Grace . AAPM&R long COVID consensus guidance statements published on diagnosing and treating long COVID symptoms of breathing discomfort and cognitive symptoms. https://www.aapmr.org/members-publications/newsroom/member-news/2021/12/14/aapm-r-long-covid-consensus-guidance-statements-published-on-diagnosing-and-treating-long-covid-symptoms-of-breathing-discomfort-and-cognitive-symptoms. Published December 14, 2021. Accessed September 23, 2024.

Khan S Chambers D Neta G . Revisiting time to translation: implementation of evidence-based practices (EBPs) in cancer control. Cancer Causes Control. 2021;32:221-230. doi:10.1007/s10552-020-01376-z

Davis HE Assaf GS McCorkell L , et al. Characterizing long COVID in an international cohort: 7 months of symptoms and their impact. EClinicalMedicine. 2021;38:101019. doi:10.1016/j.eclinm.2021.101019

Al-Aly Z Xie Y Bowe B . High-dimensional characterization of post-acute sequelae of COVID-19. Nature. 2021;594:259-264. doi:10.1038/s41586-021-03553-9

Davis HE McCorkell L Vogel JM Topol EJ . Author correction: long COVID: major findings, mechanisms and recommendations. Nat Rev Microbiol. 2023;21(3):133-146. doi:10.1038/s41579-022-00846-2

Chou R Herman E Ahmed A , et al. Long COVID definitions and models of care: a scoping review. Ann Intern Med. 2024;177:929-940. doi:10.7326/M24-0677

Karpman M Zuckerman S Morriss S . Health care access and affordability among US adults aged 18 to 64 years with self-reported post-COVID-19 condition. JAMA Netw Open. 2023;6(4):e237455. doi:10.1001/jamanetworkopen.2023.7455

AHRQ long COVID care network. Agency for Healthcare Research and Quality. https://www.ahrq.gov/coronavirus/long-covid/care-network.html. Accessed September 18, 2024.

McGough M Winger A Rakshit S Amin K . How has U.S. spending on healthcare changed over time? - Peterson-KFF Health System Tracker. https://www.healthsystemtracker.org/chart-collection/u-s-spending-healthcare-changed-time/. Accessed 23 September 2024.

Average annual deductible per enrolled employee in employer-based health insurance for single and family coverage. KFF. https://www.kff.org/other/state-indicator/average-annual-deductible-per-enrolled-employee-in-employer-based-health-insurance-for-single-and-family-coverage/?currentTimeframe=0&sortModel=%7B%22colId%22:%22Location%22,%22sort%22:%22asc%22%7D. Accessed September 23, 2024.

Witters D . In U.S., affording healthcare more of a struggle since 2022. Gallup. https://news.gallup.com/poll/646994/affording-healthcare-struggle-2022.aspx. Published 2024. Accessed 23 September 2024.

Health insurance coverage of the total population. KFF. https://www.kff.org/other/state-indicator/total-population/?currentTimeframe=0&sortModel=%7B%22colId%22:%22Location%22,%22sort%22:%22asc%22%7D. Accessed September 24, 2024.

Perlis RH Lunz Trujillo K Safarpour A , et al. Association of post-COVID-19 condition symptoms and employment status. JAMA Netw Open. 2023;6(2):e2256152. doi:10.1001/jamanetworkopen.2022.56152

Finegold K Conmy A Chu RC Bosworth A Sommers BD . February 2021 issue Brief 1. https://www.cdc.gov/nchs/nhis/healthinsurancecoverage.htm. Published online online 2021. Accessed 23 September 2024.

New HHS report shows national uninsured rate reached all-time low in 2023 after record-breaking ACA enrollment period. HHS.gov. https://www.hhs.gov/about/news/2023/08/03/new-hhs-report-shows-national-uninsured-rate-reached-all-time-low-2023-after-record-breaking-aca-enrollment-period.html. Accessed September 23, 2024.

Cutler DM . The costs of long COVID. JAMA Health Forum. 2022;3(5):e221809. doi:10.1001/jamahealthforum.2022.1809

Medicare Coverage Determination Process . Centers for medicare and medicaid services. https://www.cms.gov/medicare/coverage/determination-process. Updated September 10, 2024. Accessed 17 September 2024.

Pike J Kompaniyets L Lindley MC Saydah S Miller G . Direct medical costs associated with post–COVID-19 conditions among privately insured children and adults. Prev Chronic Dis. 2023;20:E06. doi:10.5888/pcd20.220292

Sherman A . Safety net effective at fighting poverty but has weakened for the very poorest. https://www.cbpp.org/research/safety-net-effective-at-fighting-poverty-but-has-weakened-for-the-very-poorest. Published online 2009. Accessed 9 September 2024.

Moses J . The Facts About Americans Who Receive Public Benefits - Center for American Progress; 2011. https://www.americanprogress.org/article/the-facts-about-americans-who-receive-public-benefits/. Accessed 9 September 2024.

Glassman B . Household pulse survey shows 31.1% reported symptoms three months or longer after they had COVID-19. https://www.census.gov/library/stories/2023/05/long-covid-19-symptoms-reported.html. Published May 1, 2023. Accessed 9 September 2024.

Department of Health and Human Services, Office of the Assistant Secretary for Health. Services and supports for longer-term impacts of COVID-19, 200 Independence Ave SW, Washington, DC 20201. 2022.

Fisher KA Mazor KM Epstein MM , et al. Long COVID awareness and receipt of medical care: a survey among populations at risk for disparities. Front Public Health. 2024;12:1360341. doi:10.3389/fpubh.2024.1360341

Long COVID - NCHS rapid surveys system. https://www.cdc.gov/nchs/rss/round1/long-covid.html#table1. Accessed September 9, 2024.

COVID-19 vaccination public education campaign saved thousands of lives, billions of dollars. HHS.gov. https://www.hhs.gov/about/news/2024/05/06/covid-19-vaccination-public-education-campaign-saved-thousands-lives-billions-dollars.html. Accessed September 9, 2024.

MacMonegle AJ Nonnemaker J Duke JC , et al. Cost-effectiveness analysis of the real cost campaign’s effect on smoking prevention. Am J Prev Med. 2018;55(3):319-325. doi:10.1016/J.AMEPRE.2018.05.006

Shrestha SS Davis K Mann N , et al. Cost effectiveness of the tips from former smokers® campaign-U.S., 2012-2018. Am J Prev Med. 2021;60(3):406-410. doi:10.1016/j.amepre.2020.10.009

COVID.gov . Resources about long COVID. https://www.covid.gov/tools-and-resources/resources/resources-about-long-covid. Updated June 23, 2023. Accessed 30 August 2024.

Denison B Dahlen H Kim JEC , et al. Evaluation of the “we can do this” campaign paid media and COVID-19 vaccination uptake, United States, December 2020-January 2022. J Health Commun. 2023;28(9):573-584. doi:10.1080/10810730.2023.2236976

Turner S Kranzler EC Trigger S , et al. Benefit-cost analysis of the HHS COVID-19 campaign: April 2021-March 2022. Am J Prev Med. 2024;67(2):258-264. doi:10.1016/j.amepre.2024.03.018

Eitze S Sprengholz P Korn L Shamsrizi P Felgendreff L Betsch C . Vicarious experiences of long COVID: a protection motivation theory analysis for vaccination intentions. Vaccine X. 2023;16:100417. doi:10.1016/j.jvacx.2023.100417

Long covid survey report. Prevent epidemics. 2021. https://preventepidemics.org/covid19/science/insights/long-covid-report/. Accessed September 16, 2024.

HHS launches national public education campaign ahead of respiratory virus season. Department of Health and Human Services. 2024. https://www.hhs.gov/about/news/2024/08/19/hhs-launches-national-public-education-campaign-ahead-respiratory-virus-season.html. Accessed August, 30, 2024.

KFF COVID-19 vaccine monitor dashboard. KFF. https://www.kff.org/coronavirus-covid-19/dashboard/kff-covid-19-vaccine-monitor-dashboard/. Accessed September 10, 2024.

Kirzinger A Presiado M Vlades I Hamel L Brodie M . The COVID-19 pandemic: insights from three years of KFF polling. KFF. https://www.kff.org/health-misinformation-and-trust/poll-finding/the-covid-19-pandemic-insights-from-three-years-of-kff-polling/. Published March 7, 2023. Accessed 10 September 2024.

Memorandum on addressing the long-term effects of COVID-19. The White House. https://www.whitehouse.gov/briefing-room/presidential-actions/2022/04/05/memorandum-on-addressing-the-long-term-effects-of-covid-19/. Accessed September 18, 2024.