Jul 13, 2022

Understanding the Implications of Long COVID

The Honorable Patty Murray
Chair, Senate Committee on Health, Education, Labor, and Pensions
Washington, DC 20510

The Honorable Richard Burr
Ranking Member, Senate Committee on Health, Education, Labor, and Pensions
Washington, DC 20510

The Honorable Frank Pallone
Chair, House Committee on Energy and Commerce
Washington, DC 20515

The Honorable Cathy McMorris Rodgers
Ranking Member, House Committee on Energy and Commerce
Washington, DC 20515

Re: Understanding the implications of Long COVID

Dear Chairs Murray and Pallone, and Ranking Members Burr and McMorris Rodgers:

The undersigned organizations, representing millions of patients that have been or will be affected by “Long COVID”, i.e. post-acute sequelae of SARS-CoV-2 infection (PASC), and the physicians who care for them, urge Congress to explore this growing issue. The undersigned organizations remain dedicated to enhancing our understanding and ensuring adequate resources are being invested into the impact of PASC on patients and hope your committees will consider this a priority issue.

Since 2020, our knowledge of COVID-19 has significantly grown. With science at the forefront of policymaking, synthesizing research to formulate the best path forward is imperative. Ultimately, there are over 87 million survivors of COVID in the US, and it is estimated that 33 percent have PASC. According to one study, one-third of patients diagnosed with COVID-19 developed psychiatric or neurologic disorders within six months, including depression, anxiety, stroke, and dementia. In that same study, researchers who evaluated more than 230,000 electronic health records, which includes anonymous data from 81 million patients, primarily in the US, found that among COVID-19 patients admitted to an intensive care unit (ICU), the incidence of developing a psychiatric or neurologic disorder rose to an unprecedented 46 percent. 1

In another study, researchers identified post-COVID health problems in many different organ systems, including the heart, lungs and kidneys.2 Other issues identified in the study involved blood circulation, the musculoskeletal system and the endocrine system; gastrointestinal conditions, neurological problems and psychiatric symptoms. The study examined over 353,000 patients that were diagnosed with COVID-19 at the start of the pandemic, and it found that COVID-19 patients had twice the risk of uninfected people of developing respiratory symptoms and lung problems, including pulmonary embolism. Post-COVID patients aged 65 and older were at greater risk than the younger group of developing kidney failure, neurological conditions and most mental health conditions. These findings have been reinforced by another study that found that after the first 30 days of infection, individuals with COVID-19 are at increased risk of incident cardiovascular disease spanning several categories, including cerebrovascular disorders, dysrhythmias, ischemic and non-ischemic heart disease, pericarditis, myocarditis, heart failure and thromboembolic disease.3 If left unchecked, PASC could leave many unable to perform their jobs, severely impacting the workforce, and increasing costs of health care in the long term.

Given the number of COVID-19 cases across the US, the impact of post-COVID symptoms is likely enormous, and without proper information sharing, patients could suffer devastating consequences and misdiagnoses. Additionally, understanding the core causes of PASC will make it easier for providers to identify patients who are more at risk of developing its chronic symptoms, and potentially providing early interventions.

We ask you to explore this issue further by convening hearings to explore potential solutions, encompassing broad themes such as: unifying definitions and language around PASC; enhancing research, data collection, and surveillance and identifying additional opportunities; focusing on patient diversity in research and mitigating disparities in care; defining outcomes; educating medical professionals and patients about PASC; and the development of guidance for clinical treatment and care coordination across primary care and several specialty providers.

Several bills have been introduced to Congress that focus on these broad themes that could serve as a potential starting point for assessing this rapidly developing issue. These include: the Cures 2.0 Act (H.R. 6000); the COVID-19 Long Haulers Act (H.R. 2754); the CARE for Long COVID Act (S. 3726); the TREAT Long COVID Act (H.R. 7482/S. 4015); and the Brycen Gray and Ben Price COVID–19 Cognitive Research Act (H.R. 7180/S. 4014), which was recently reported favorably by the House Committee on Science, Space and Technology.

Additionally, such hearings would be timely due to the Biden Administration’s recent directive to coordinate efforts across the federal government to develop and issue the first-ever interagency national research action plan on PASC. We agree that focused attention on this issue will help advance progress in prevention, diagnosis, treatment, and provision of services, supports, and interventions for individuals experiencing PASC. Ultimately, we believe that we must follow the science as it relates to researching and caring for people affected by PASC. To do this, we must enhance our understanding of this condition and how to treat it. Providing a national spotlight on this issue will help continue the national dialogue with leading experts, ensure that progress is being made on key priorities, and identify areas for continued federal investment.

In conclusion, we hope the committee will consider PASC a priority and look forward to working with Congress to ensure patients suffering from PASC can receive the timely care coordination they need. If you have any questions or require additional information, please do not hesitate to contact Derek Brandt, Director of Congressional Affairs at the American Academy of Neurology at dbrandt@aan.com. We look forward to working with you as we all strive to improve care for Americans who are struggling with the lingering effects of COVID-19.


Alliance for Patient Access

ALS Association

Alzheimer's Association

Alzheimer's Impact Movement

American Academy of Allergy, Asthma & Immunology

American Academy of Family Physicians

American Academy of Hospice and Palliative Medicine

American Academy of Neurology

American Academy of Physical Medicine & Rehabilitation

American Association of Child and Adolescent Psychiatry

American Association of Clinical Urologists

American Association of Neurological Surgeons

American Association of Orthopaedic Surgeons

American Brain Coalition

American College of Cardiology

American College of Emergency Physicians

American College of Rheumatology

American Epilepsy Society

American Gastroenterological Association

American Geriatrics Society

American Headache Society

American Heart Association

American Psychiatric Association

American Society of Anesthesiologists

American Society of Hematology

American Society of Neuroimaging

American Society of Neuroradiology

American Society of Pediatric Nephrology

Anxiety and Depression Association of America

Association of Academic Physiatrists

Association of University Professors of Neurology

Bobby Jones Chiari & Syringomyelia Foundation

Brain Injury Association of America

California Neurology Society

Center for Law, Brain & Behavior, Massachusetts General Hospital

CHAMP - Coalition for Headache and Migraine Patients

Child Neurology Society

Chronic Migraine Awareness, Inc

Cohen Veterans Bioscience

Commonwealth Neurological Society

Congress of Neurological Surgeons

Epilepsy Foundation

Federation of American Hospitals

Florida Society of Neurology

Georgia Neurological Society

Heart Failure Society of America

Hope for HIE

Hydrocephalus Association

Infectious Diseases Society of America

Alliance for Headache Disorders Advocacy

Massachusetts Neurologic Association

Miles for Migraine

MLD Foundation

Multiple Sclerosis Association of America

National Association of State Head Injury Administrators

National MS Society

National Organization for Tardive Dyskinesia

North Carolina Neurological Society

Parkinson's Foundation

Peripheral Nerve Society

Renal Physicians Association

Society for Cardiovascular Angiography and Interventions

Society for Neuroscience

Society for Vascular Surgery

Society of General Internal Medicine

Society of Interventional Radiology

Solve M.E.

SynGAP Research Fund, 501c3

Texas Neurological Society

Texas Tech University Health Sciences Center El Paso

The Headache and Migraine Policy Forum

The Michael J. Fox Foundation for Parkinson's Research

The Society of Thoracic Surgeons

United Council for Neurologic Subspecialties

Wisconsin Neurological Society (WNS)



  1. https://journals.lww.com/neurotodayonline/Fulltext/2021/06030/6_Months_After_COVID_19_Infection,_1_in_3_Develop.4.aspx
  2. https://www.nytimes.com/2022/05/24/health/long-covid-infections.html
  3. https://www.nature.com/articles/s41591-022-01689-3