More than three in four Americans (~249 million) over the age of sixteen had contracted COVID-19 by the end of 2022, according to estimates from the Centers for Disease Control and Prevention. [1] Long COVID impacts twenty percent, or one-in-five people (~50 million), who are infected with COVID-19 [2], and the risk of developing Long COVID increases with each reinfection. [3] Long COVID has left over four million people [4] and counting unable to work, costs an estimated four trillion dollars per year to the U.S. economy [5], and has significantly contributed to U.S. disability rates hitting thirty-four million people, an all-time high. [6]

Long-COVID has a significant effect on health-related quality of life (HR-QOL), health care equity, and health care costs. [7-9] Long-COVID is a heterogeneous condition with potentially multiple overlapping and coexisting etiologies such as viral persistence, immune dysregulation, autoimmunity, and severe organ damage that occurred during the acute and longitudinal illness. [10--12] HHS currently defines Long COVID as “signs, symptoms, and conditions that continue or develop after initial SARS-CoV-2 infection. The signs, symptoms, and conditions are present four weeks or more after the initial phase of infection; may be multisystemic; and may present with a relapsing–remitting pattern and progression or worsen over time, with the possibility of severe and life-threatening events even months or years after infection. Long COVID is not one condition. It represents many potentially overlapping entities, likely with different biological causes and different sets of risk factors and outcomes.” [13]

Due to the multisystemic nature of Long COVID, most patients go on to develop a collection of medical issues and chronic conditions making care management and coordination extremely difficult, causing patients to experience continued adverse health effects.[14] Communities that experience health inequities, driven by social determinants of health (SDOH), were disproportionately impacted by acute COVID-19 and subsequently disproportionately burdened by Long COVID. [15, 16]

To address some of the issues presented by Long COVID, we need to fund the creation and expansion of multidisciplinary Long COVID centers with providers with expertise in treating Long COVID and its associated conditions, as well as other infection-associated chronic conditions. [17] We need to promote ongoing medical training and education for physicians, Long COVID clinics, and other health care workers [18]. We need to ensure that treatment is not denied based on insurance coverage or the date or method of diagnosis, or previous hospitalization, and expand access for treatment within Medicaid and CHIP. Long COVID centers must offer equity centered resources and engage with Long COVID patient organizations and medically underserved populations to develop and disseminate regularly updated information regarding Long COVID, including resources on how Long COVID affects rights associated with employment, disability status, and education. We need expansion of and access to legal assistance such as obtaining Social Security and other benefits and accessing medical care and services, especially those that address social needs that can interfere with treatment. Long COVID centers should disseminate best practices and strategies, in partnership with Long COVID patients, to mitigate disparities and treatment approaches and their effectiveness. We need to conduct or support basic, clinical, epidemiological, behavioral, and translational research and public health surveillance related to the pathogenesis, prevention, diagnosis, and treatment of the long-term health effects of Long COVID and related conditions, especially amongst our pediatric population. We need a Long COVID patient registry that can assist with data collection and help expedite research, and we need to be able to de-identify data so it can become more widely available to researchers who can help advance scientific solutions. Additionally, the public as well as providers, would benefit from a website and wide-spread public health messaging that educated them about Long COVID.

In broader pandemic preparedness and public health needs, we need to improve medical readiness and response capabilities. This includes examining alternative models for directly funding or stimulating investment in biomedical research and development and that delink research and development costs from the prices of drugs. We need to create a strategic framework for the rapid development, validation, authorization, manufacture, procurement, and distribution of diagnostic tests, and for rapid scaling of testing capacity. Public health communication must be strengthened which can be done through a Public Health Communications Advisory Committee that makes recommendations to the Secretary and reports on critical aspects of communication and dissemination of scientific and evidence-based public health information during public health emergencies. Lastly, we need assessment of the COVID-19 mitigation policies as well as compensation for injuries relating to the public health emergency caused by SARS-COV-2 and support for individuals with disabilities, older adults, and other at-risk individuals during emergency responses.

COVID-19 is endemic [19] and here to stay and will continue to contribute to the number of Long COVID cases and their systemic implications, especially in the absence of mitigation efforts, treatment, or a cure for Long COVID. There are currently several bills that you can support, or help get a colleague to support, to assist the approximately fifty million people in the U.S., and their families, impacted by Long COVID. Please consider supporting several, or all of the below bills that can help millions in the U.S. The COVID-19 Longhauler Advocacy Project is grassroots, patient-led 501(c)(3) with a chapter in each state and U.S. territory as well as several community-specific chapters. [20] We are happy to connect your office with constituents to discuss and help educate you on their experiences and needs related to Long COVID and its associated conditions. We can be reached at contact@Longhauler-Advocacy.org

The Treat long COVID Act, (H.R. 3258) allows HHS to award grants up to $2 million to healthcare providers, including community health centers, and provides grant funding for the creation and expansion of multidisciplinary long COVID clinics to address the needs of patients. Centers must offer equity centered resources, information, and training to safety net health systems and disseminate best practices and treatment approaches that enhance access to high quality care to everyone where they live. The bill prioritizes funding for health providers that submit a plan to engage with long COVID patient organizations and medically underserved populations disproportionately impacted by COVID-19 and who demonstrate the capacity or intent to facilitate patient access to multidisciplinary healthcare providers with expertise in treating long COVID it's associated conditions as well as other infection associated chronic conditions. The bill ensures that treatment is not denied based on insurance coverage or the date or method of diagnosis or previous hospitalization. Lastly, the bill encourages ongoing medical training for physicians and long COVID clinics and other health care workers serving patients.

The Long COVID Recovery Now Act (H.R. 1114) establishes grants for treating Long COVID at health clinics and primary care providers and addresses social needs that can interfere with treatment. It also aims to set up or expand specialized clinics or programs using a multidisciplinary approach and to support the development of evidence and other resources related to treatments. The bill also establishes grants for Long COVID patient registries and support for research on the long COVID *pediatric* population. The bill additionally calls for the Office of the National Coordinator for Health Information Technology to convene stakeholders to identify best practices to make deidentified data related to Long COVID available to researchers. Lastly, the bill calls for HHS to set up a website to educate healthcare providers and the public about Long COVID and issue guidance on ways to assist individuals with long COVID through Medicaid and the Children's Health Insurance Program, as well as expand access for treatment within Medicaid and CHIP.

The Care for long COVID Act (H.R. 1616/ S. 801) requires research, education, and other activities to support individuals who have Long COVID or related conditions that may result directly or indirectly from COVID-19 infection. The bill calls for the support of a voluntary patient registry to collect information about individuals with Long COVID and related conditions, such as their symptoms, treatment and demographic characteristics. It also calls for research on the effectiveness of treatments and strategies to mitigate disparities and health outcomes and calls for education of the public and healthcare providers about treatments for conditions associated with, and other aspects of Long COVID and related conditions. It also disseminates information and resources on how Long COVID affects rights associated with employment, disability status, and education. Lastly, the bill calls for expansion of access to legal assistance for individuals with Long COVID and related conditions, including assistance with obtaining Social Security and other benefits and accessing medical care and services.

The Long COVID Support Act (S. 2560) will task HHS with creating a regularly updated voluntary patient registry of individuals with suspected or confirmed Long COVID and related conditions, subject to all applicable privacy protections under Federal and State law. The bill will coordinate activities among relevant Federal departments and agencies and continue to conduct or support basic, clinical, epidemiological, behavioral, and translational research and public health surveillance related to the pathogenesis, prevention, diagnosis, and treatment of the long-term health effects of Long COVID and related conditions. AHRQ will be tasked with conducting or supporting the improvement of health care delivery and the development or identification of assessment tools and management strategies. The bill would also develop and disseminate to the public regularly updated information regarding Long COVID in consultation with representatives from impacted communities and health care providers who treat such communities or individuals. The bill will also help develop and disseminate continuing medical education programs that advance the education of such providers for the purpose of ensuring that health care providers remain informed about current information on Long COVID and related conditions.

Pandemic and All-Hazards Preparedness and Response Act (S.2333) will help improve medical readiness and response capabilities in the event of a public health emergency. This program would allow temporary reassignment of state and local personnel during a public health emergency and enhance participation of EMS organizations in the Hospital Preparedness program. The bill would help develop an emergency system for advanced registration of volunteer health professionals or a volunteer medical reserve corp. The bill would help develop an emerging pathogens preparedness program to facilitate the development, review, licensure, approval, and clearance of countermeasures, and products that could potentially be countermeasures and would task N.A.S.E.M with conducting a study to examine alternative models for directly funding, or stimulating investment in, biomedical research and development that delink research and development costs from the prices of drugs, including the progressive replacement of patents and regulatory exclusivities on new drugs with a combination of expanded support for research and innovation prizes to reward the successful development of drugs or achievement of related milestones. The bill would produce several pilot programs addressing support for state and medical stockpiles and wastewater surveillance for pathogen detection. The bill would also create a pilot program for public health data availability to leverage the relevant public health data across HHS and facilitate communication, including bidirectional communication or other means of communication, to enable timely information sharing with State, local, and Tribal public health officials, between agencies and offices of the HHS, and with health care providers, as applicable and appropriate. The bill would task ASPR with submitting a coordinated strategy for medical countermeasures to address chemical, biological, radiological, and nuclear threats, informed by the requirements developed pursuant to subsection to the HELP committee, and the NHS is to create a strategic framework for the rapid development, validation, authorization, manufacture, procurement, and distribution of diagnostic tests, and for rapid scaling of testing capacity. The Secretary of Health and Human Services shall work to strengthen public health communication by establishing an advisory committee to be known as the Public Health Communications Advisory Committee that makes recommendations to the Secretary and reports on critical aspects of communication and dissemination of scientific and evidence-based public health information during public health emergencies. Lastly, the bill supports the development of fellowship and training programs, and an assessment of the COVID-19 mitigation policies as well as a compensation for injuries relating to the public health emergency caused by SARS-COV-2 and support for individuals with disabilities, older adults, and other at-risk individuals during emergency responses.

National Task Force on the COVID-19 Pandemic Act (S. 1489) will establish a task force to examine, assess, and report upon the United States preparedness for, and response to, the COVID–19 pandemic, build upon existing or ongoing evaluations and avoid unnecessary duplication, by reviewing the findings, conclusions, and recommendations of other appropriate task forces, committees, commissions, or entities established by other public or nonprofit private entities related to the United States preparedness for, and response to, the COVID–19 pandemic. The bills will identify gaps in public health preparedness and medical response policies, processes, and activities, including disparities in COVID–19 infection and mortality rates among people of color, older adults, people with disabilities, and other vulnerable or at-risk groups, and how such gaps impacted the ability of the United States to respond to the COVID–19 pandemic, and submit a report to the President and to Congress on its findings, conclusions, and recommendations to improve the United States preparedness for, and response to, future public health emergencies, including a public health emergency resulting from an emerging infectious disease.

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2. CDC. (2022, June 22). Nearly One in Five American Adults Who Have Had COVID-19 Still Have “Long COVID.” Www.cdc.gov. https://www.cdc.gov/nchs/pressroom/nchs_press_releases/2022/20220622.htm

3. Bowe, B., Xie, Y., & Al-Aly, Z. (2022). Acute and postacute sequelae associated with SARS-CoV-2 reinfection. Nature Medicine, 1–8. https://doi.org/10.1038/s41591-022-02051-3

4. Bach, K. (2022, August 24). New data shows long Covid is keeping as many as 4 million people out of work. Brookings. https://www.brookings.edu/articles/new-data-shows-long-covid-is-keeping-as-many-as-4-million-people-out-of-work/

5. Cutler, D. (n.d.). The Economic Cost of Long COVID: An Update. https://scholar.harvard.edu/files/cutler/files/long_covid_update_7-22.pdf

6. U.S. Bureau of Labor Statistics. (2008, June 1). Population - With a Disability, 16 Years and over. FRED, Federal Reserve Bank of St. Louis. https://fred.stlouisfed.org/series/LNU00074597

7. Larsen, N. W., Stiles, L. E., Shaik, R., Schneider, L., Muppidi, S., Tsui, C. T., Geng, L. N., Bonilla, H., & Miglis, M. G. (2022). Characterization of autonomic symptom burden in long COVID: A global survey of 2,314 adults. Frontiers in Neurology, 13. https://doi.org/10.3389/fneur.2022.1012668

8. COVID-19 Longhauler Advocacy Project. (2022, January). OPEN LETTER | COVID-19 Longhauler Advocacy Project | C-19 LAP. Covid 19 Longhauler. https://www.longhauler-advocacy.org/open-letter

9. Karpman, M., Zuckerman, S., & Morriss, S. (2023). Health Care Access and Affordability Among US Adults Aged 18 to 64 Years With Self-reported Post–COVID-19 Condition. JAMA Network Open, 6(4), e237455. https://doi.org/10.1001/jamanetworkopen.2023.7455

10. Davis, H. E., McCorkell, L., Vogel, J. M., & Topol, E. J. (2023). Long COVID: major findings, mechanisms and recommendations. Nature Reviews Microbiology, 21(3), 1–14. https://doi.org/10.1038/s41579-022-00846-2

11. Sharma, C., & Bayry, J. (2023). High risk of autoimmune diseases after COVID-19. Nature Reviews Rheumatology. https://doi.org/10.1038/s41584-023-00964-y

12. Proal, A. D., VanElzakker, M. B., Aleman, S., Bach, K., Boribong, B. P., Buggert, M., Cherry, S., Chertow, D. S., Davies, H. E., Dupont, C. L., Deeks, S. G., Eimer, W., Ely, E. W., Fasano, A., Freire, M., Geng, L. N., Griffin, D. E., Henrich, T. J., Iwasaki, A., & Izquierdo-Garcia, D. (2023). SARS-CoV-2 reservoir in post-acute sequelae of COVID-19 (PASC). Nature Immunology, 24(10), 1616–1627. https://doi.org/10.1038/s41590-023-01601-2

13. HHS. (n.d.). COVID.gov - About Long COVID. COVID.gov. Retrieved October 5, 2023, from https://www.covid.gov/longcovid/about#term

14. Malesevic, S., Sievi, N. A., Baumgartner, P., Roser, K., Sommer, G., Schmidt, D., Vallelian, F., Jelcic, I., Clarenbach, C. F., & Kohler, M. (2023). Impaired health-related quality of life in long-COVID syndrome after mild to moderate COVID-19. Scientific Reports, 13(1), 7717. https://doi.org/10.1038/s41598-023-34678-8

15. BERGER, Z., ALTIERY DE JESUS, V., ASSOUMOU, S. A., & GREENHALGH, T. (2021). Long COVID and Health Inequities: The Role of Primary Care. The Milbank Quarterly, 99(2), 519–541. https://doi.org/10.1111/1468-0009.12505

16. Tanne, J. H. (2023). Covid-19: US studies show racial and ethnic disparities in long covid. BMJ, p535. https://doi.org/10.1136/bmj.p535

17. (2023). Nationalacademies.org. https://www.nationalacademies.org/our-work/toward-a-common-research-agenda-in-infection-associated-chronic-illnesses-a-workshop-to-examine-common-overlapping-clinical-and-biological-factors#:~:text=This%20workshop%20aims%20to%20bring%20together%20clinicians%2C%20researchers%2C

18. (2023). Nationalacademies.org. https://www.nationalacademies.org/event/06-22-2023/examining-the-working-definition-for-long-covid-workshop

19. Biancolella, M., Colona, V. L., Mehrian-Shai, R., Watt, J. L., Luzzatto, L., Novelli, G., & Reichardt, J. K. V. (2022). COVID-19 2022 update: transition of the pandemic to the endemic phase. Human Genomics, 16(1). https://doi.org/10.1186/s40246-022-00392-1

20. Our Work | COVID-19 Longhauler Advocacy Project | C-19 LAP. (n.d.). Covid 19 Longhauler. https://www.longhauler-advocacy.org/our-work