Source: United States Senator for Massachusetts Ed Markey
Legislation would improve research and boost access to resources and education regarding the condition
Washington (March 15, 2023) – Amid Long COVID Awareness Day, Senators Edward J. Markey (D-Mass.), Tim Kaine (D-Va.), and Tammy Duckworth (D-Ill.) reintroduced the Comprehensive Access to Resources and Education (CARE) For Long COVID Act, legislation to help people living with long-term COVID-19 symptoms by improving research and providing resources for people with Long COVID. Representatives Don Beyer (VA-08) and Jack Bergman (MI-01) are leading companion legislation in the House of Representatives.
“While the public health emergency may be coming to an end, the suffering of millions of people across our country experiencing Long COVID is not,” said Senator Markey. “As our nation continues to emerge from the pandemic, we must expand research on Long COVID, improve access to treatment and provide economic supports so that no American needlessly suffers these long-term mental and physical symptoms. I will continue to fight to make sure that everyone has access to the critical resources they need to support their overall health and well-being.”
“While my own Long COVID case is mild, I’m determined to highlight the experiences of many Virginians who are living with debilitating symptoms. I’ve heard from Virginians whose Long COVID is so bad they were forced to leave the workforce or struggle to take care of their families. And to make matters worse, so many Virginians and people across the country are not believed when they seek care for this condition,” said Senator Kaine. “It’s clear that much more needs to be done to support Americans with Long COVID—from improving research to connecting patients with resources—and the CARE for Long COVID Act does just that.”
“Even if COVID-19 disappeared tomorrow, millions of Americans who contracted this virus will continue to suffer from enduring respiratory, neurological and other devastating impacts of long COVID,” said Senator Duckworth. “As we continue our work to rise out of this pandemic stronger than before, I’m proud to join Senators Kaine and Markey to re-introduce the CARE for Long COVID Act so we can better understand long COVID and support survivors of this horrible virus.”
“Our bill would take key steps to help millions of Americans suffering from long Covid, many of whom still are not receiving the support they need,” said Representative Beyer. “The CARE For Long COVID Act would boost research and data sharing to identify and disseminate causes and, we hope, effective treatments. It is important to build on the research Congress has already funded and do all we can to address this enormous public health problem.”
“This legislation will foster the research and provide the resources necessary to help those living with the effects of Long COVID, which is a threat to our ability to fully recover from the pandemic,” said Representative Bergman. “Those who have Long COVID deserve proper care, transparency, and understanding of the virus and its long term effects.”
Long COVID or post-COVID conditions are a wide range of new, returning, or ongoing health problems that people experience after being infected with the virus that causes COVID-19. These symptoms range from mild to debilitating and can last for months and even years. The Centers for Disease Control and Prevention (CDC) indicates that over 53% of adults in the U.S. report having had COVID-19, with 28% of adults who had COVID-19 experiencing some form of Long COVID. In Virginia, nearly 53% of adults report ever having had COVID-19, with over 27% of adult Virginians who had COVID-19 experiencing some form Long COVID. Currently, 5.8% of Americans and 5.5% of Virginians have Long COVID.
To help those Americans, the CARE for Long COVID Act would:
- Accelerate Long COVID research by authorizing the Secretary of the Department of Health and Human Services (HHS), in coordination with the Patient-Centered Outcomes Research Institute (PCORI), to centralize and synthesize robust data-sets regarding patient experiences with Long COVID and related conditions for future research;
- Improve understanding of Long COVID treatment efficacy and disparities by authorizing HHS to study the health care system’s response to Long COVID and provide recommendations for how to improve that response;
- Educate Long COVID patients and medical providers through efforts at the CDC to develop and disseminate information on common symptoms and treatment for Long COVID and related conditions;
- Facilitate interagency coordination to educate the public, including employers and schools, on the impact of Long COVID and the rights associated with employment, disability status, and education for individuals with Long COVID; and
- Develop partnerships between community-based organizations, social service providers, and legal assistance providers to help individuals with Long COVID access needed services.
The CARE for Long COVID Act is endorsed by Allergy and Asthma Network, Alliance for Headache Disorders Advocacy, Alliance for Patient Access, Alzheimer’s Association, Alzheimer’s Impact Movement, American Academy of Allergy, Asthma & Immunology, American Academy of Neurology, American Academy of Physical Medicine and Rehabilitation, American Association of Neurological Surgeons, American Brain Coalition, American Epilepsy Society, American Federation of State, County, and Municipal Employees (AFSCME), American Gastroenterological Association, American Geriatrics Society, American Heart Association, American Physical Therapy Association, American Society of Anesthesiologists, American Society of Neuroradiology, American Society of Pediatric Nephrology, Anxiety and Depression Association of America, Association of Academic Physiatrists, Association for University Centers on Disabilities, Ballad Health, Brain Injury Association of America, Cohen Veterans Bioscience, Community Legal Services of Philadelphia, Congress of Neurological Surgeons, COVID-19 Health and Safety Taskforce, COVID-19 Longhauler Advocacy Project, Derma Care Access Network, Dysautonomia International, Federation of American Hospitals, Hope for HIE, International Association of Fire Fighters, Kennedy Krieger Institute, Long COVID Families, National Association of State Head Injury Administrators, National Center for Health Research, National Organization of Social Security Claimants’ Representatives (NOSSCR), National Council of Urban Indian Health, National Hispanic Medical Association, Pandemic Patients, Partnership to Advance Cardiovascular Health, Patient-Led Research Collaborative, Social Security Action, Society for Cardiovascular Angiography and Interventions, Society of Interventional Radiology, Solve M.E., Survivor Corps, The Arc, The Headache and Migraine Policy Forum, and The Michael J. Fox Foundation for Parkinson’s Research.
Senators Kaine, Markey, and Duckworth were joined in the reintroduction by Senators Richard Blumenthal (D-Conn.), Tina Smith (D-Minn.), Amy Klobuchar (D-Minn.), Alex Padilla (D-Calif.), Sheldon Whitehouse (D-R.I.), Debbie Stabenow (D-Mich.), Jack Reed (D-R.I.), and Angus King (I-Maine).
The bill text can be found here. A summary of the legislation is available here.
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