May 11, 2023
As COVID Emergency Ends, Pressley, Beyer, Blunt Rochester Unveil Bill to Support COVID Long Haulers
Bill Expands Access to Long COVID Treatment, Invests in Long COVID Clinics and Health Providers
Bill Summary (PDF) | Bill Text (PDF)
WASHINGTON – Today, as the COVID-19 public health emergency declaration ends, Congresswoman Ayanna Pressley (MA-07), alongside Representatives Don Beyer (VA-08) and Lisa Blunt Rochester (D-DE), reintroduced the Targeting Resources for Equitable Access to Treatment for Long COVID (TREAT Long COVID) Act to increase access to medical care and treatment for communities and individuals struggling with Long COVID and its associated conditions. The bill will fund the expansion of Long COVID clinics and empower health care providers—including community health centers and local public health departments—to treat Long COVID patients in their own communities.
Earlier this year, Rep. Pressley held a virtual roundtable with patients, health care providers, and advocates in the Massachusetts 7th to discuss the Long COVID crisis and the need to support COVID long-haulers with the public health emergency declaration ending. Watch their roundtable here.
“We have a moral obligation to support the millions of COVID long haulers in America and ensure they are not ignored, left out, or left behind in our recovery,” said Rep. Pressley. “We’re re-introducing the TREAT Long COVID Act to let our long haulers know that we see them and we won’t stop fighting to get them the accessible treatment that they need and deserve. Rather than leave our most vulnerable – particularly those in Black, brown, and historically marginalized communities – out in the cold, we must provide the necessary resources to set us all on a path to long-term recovery from the pandemic. This bill will help us do just that.”
“Millions of Americans suffer from Long Covid, and in many cases the symptoms of this disease are more harmful than the initial infection,” said Rep. Beyer. “Our bill would provide crucial funding to support the creation and expansion of multidisciplinary Long Covid clinics to provide affected Americans with treatment for the physical and mental toll of the disease. Even as the pandemic recedes, there remains a staggering need for these services, which still are not receiving the level of attention and response from policymakers that they deserve.”
“We know that the impacts of COVID can linger long after Americans return to testing negative. Recovery from COVID-19 is posing a new set of challenges for both patients and health care providers,” said Rep. Blunt Rochester. “Millions of individuals continue to experience long COVID, and they don’t know where to get help. That’s why I’m proud to join with Reps. Pressley & Beyer to introduce the TREAT Long COVID Act to connect people struggling with long COVID with healthcare services in their own communities.”
According to the Centers for Disease Control and Prevention (CDC), people with Long COVID may experience a combination of symptoms, ranging from extreme fatigue and cognitive dysfunction to muscle pain and gastrointestinal issues, to difficulty breathing, insomnia, and heart palpitations. Across the country, nearly one in five adults who have had COVID-19 still suffer from symptoms of Long COVID. These complications affect people of all ages and all walks of life, with disproportionate impacts reported on women and people of color.
The TREAT Long COVID Act:
- Authorizes HHS to award grants up to $2,000,000 to health care providers, including community health centers;
- Grants funding for the creation and expansion of multidisciplinary Long COVID clinics to address the physical and mental health needs of patients;
- Prioritizes funding for health providers that plan to engage Long COVID patient organizations, medically underserved populations, and populations disproportionately impacted by COVID-19;
- Ensures that treatment is not denied based on insurance coverage, date or method of diagnosis, preexisting conditions, or previous hospitalization;
- Encourages ongoing medical training for physicians in Long COVID clinics and other health care workers serving patients; and
- Requires grantees to submit an annual report on its activities that includes evaluations from patients.
A summary of the bill can be found here, and the bill text is available here.
The TREAT Long COVID Act has been endorsed by the COVID-19 Longhauler Advocacy Project, Body Politic, Patient-Led Research Collaborative, Utah COVID-19 Long Haulers, Access Living, National Health Council, American Physical Therapy Association, Massachusetts ME/CFS & FM Association, American Academy of Physical Medicine and Rehabilitation, Mbadika, Solve M.E., and Lakeshore Foundation.
“As initial co-drafters of the Treat Long COVID Act, we are proud to announce our endorsement of the bill’s re-introduction. We are pleased to see the bill now prioritize entities who will engage with Long COVID organizations and patients and highlight the need for entities to demonstrate capacity to facilitate patient access to multidisciplinary healthcare providers, and with expertise in treating Long COVID, as well as other infection-associated chronic conditions, and who are capable of providing comprehensive, systemic care,” said Karyn Bishof, President & Founder- COVID-19 Longhauler Advocacy Project. “Millions of Long COVID patients are in desperate need of quality medical care and have waited years for action. The Treat Long COVID Act can help facilitate this action, which in return, may bring forth treatment options, and better quality of life, to an ever-growing patient community. Congress must pass the Treat Long COVID Act so that Long-Haulers, who without treatment, will continue to be forced out of work, continue to be taken away from their families, and continue to build upon their economic hardships, can finally have a trusted place to turn to for equitable and quality medical care.”
“The TREAT Long COVID Act is a crucial step to ensuring equitable, adequate, and informed care for people with Long COVID,” said Lisa McCorkell, co-founder of the Patient-Led Research Collaborative. “An important aspect of this bill is that it would help ensure ongoing multidisciplinary continuing education on infection-triggered conditions for physicians – historically, healthcare providers have not been well-informed on these conditions. Additionally, Long COVID research is constantly evolving. It is critical for providers to be kept up-to-date and well-informed on existing research to ensure patients have the best treatment options available.”
“APTA is grateful to Rep. Pressley for her leadership in helping address the needs of individuals who have post-acute sequelae of SARS-CoV-2 infections, also known as Long COVID,” said Roger Herr, PT, MPA, President, American Physical Therapy Association. “These individuals often experience fatigue, pain, and mobility challenges, as well as cognitive, neurological, cardiac, vascular, and respiratory issues limiting function, activities, and participation in daily living skills. This requires continued collaboration among health care providers, including physical therapists, on a multidisciplinary approach to ensure equitable access to care for those impacted by Long COVID.”
“MassME supports the Treat for Long COVID ACT, which will help to increase funding for, and ensure equitable access to good clinical care for those Long COVID and other complex post-viral conditions,” said the Massachusetts ME/CFS& FM Association.
Cosponsors include Mike Quigley (IL-05), Sara Jacobs (CA-51), Nydia M. Velázquez (NY-07), Katie Porter (CA-47), Judy Chu (CA-28), Troy A. Carter, Sr. (LA-02), Ami Bera CA-06), Eleanor Holmes Norton (DC-D), Adam Smith (WA-09), Raúl Grijalva (AZ-07), Rashida Tlaib (MI-12), Melanie Stansbury (NM-01), Jamaal Bowman (NY-16), Emanuel Cleaver II (MO-05), Raja Krishnamoorthi (IL-08), Ilhan Omar (MN-05), James McGovern (MA-02), Nanette Diaz Barragán (CA-44), Cori Bush (MO-01), Ann McLane Kuster (NH-02), Ro Khanna (CA-17), David Trone (MD-06), and Sheila Cherfilus-McCormick (FL-20).
Rep. Pressley’s groundbreaking bill follows her continued advocacy for people suffering from Long COVID and for disaggregated demographic data on COVID-19 to better address the pandemic’s disproportionate impact on communities of color.
- In March 2023, Reps. Pressley and Blunt Rochester led 41 colleagues in a FY24 appropriations letter requesting $167.5 million for the Health Resources and Services Administration (HRSA) to support Long COVID research initiatives and deliver immediate care to those living with Long COVID.
- In December 2022, Rep. Pressley celebrated the $10 million secured in funding for Long COVID research at Agency for Healthcare Research and Quality (AHRQ) in the FY23 budget. The agreement includes $10,000,000 for health systems research on how best to deliver patient-centered, coordinated care to those living with Long COVID, including the development and implementation of new models of care to help treat the complexity of symptoms those with Long COVID experience.
- In May 2022, Rep. Pressley, in a House Financial Service subcommittee hearing, discussed the crisis of Long COVID as a disability justice issue and outlined how the status quo has relegated disabled Americans—including those with Long COVID—to a second-class standard of living.
- In March 2022, Rep. Pressley led 23 of her colleagues in urging House Speaker Nancy Pelosi and Senate Majority Leader Chuck Schumer to help ensure a just and equitable pandemic recovery by including robust, dedicated funding to support people struggling with Long COVID in a future coronavirus relief package.
- In January 2022, Rep. Pressley and Rep. Don Beyer (VA-08) sent a letter to the CDC urging it to publicly report findings on the prevalence of Long COVID, including disaggregated demographic data. Later that month, she held a virtual roundtable with healthcare providers, advocates, and patients on how to address the crisis of Long COVID.
- In late January, she held a virtual roundtable with healthcare providers, advocates, and patients on how to address the crisis of Long COVID.
- In December 2021, Rep. Pressley and Sens. Warren and Markey wrote to CDC and HHS urging them to monitor, report, and address racial and other ethnic demographic disparities in breakthrough COVID-19 cases nationwide.
- In December 2021, with omicron surging, Rep. Pressley wrote to Governor Baker urging him to pursue a data-driven and holistic statewide plan to combat COVID-19 and to continue publishing comprehensive, disaggregated data on vaccination rates and COVID infection, including breakthrough cases.
- In August 2021, with the new delta variant surging, Rep. Pressley called on Governor Baker to step up efforts to reduce COVID spread in Massachusetts and resume comprehensive data collection on who is contracting COVID-19.
- In July 2021, Rep. Pressley and Senator Warren urged Governor Baker to continue reporting demographic data on COVID-19 hospitalizations.
- In February 2021, Rep. Pressley, Senator Warren, and Rep. Sylvia Garcia (TX-29) reintroduced the COVID-19 in Corrections Data Transparency Act, bicameral legislation that would require the Federal Bureau of Prisons, the United States Marshals Service, and state governments to collect and publicly report detailed statistics about COVID-19 cases, hospitalizations, deaths, and vaccinations in federal, state, and local correctional facilities.
- In February 2021, Rep. Pressley, Senator Warren, and Senator Markey led your colleagues in re-introducing the Equitable Data Collection and Disclosure on COVID-19 Act, legislation to require the federal government to collect and publicly release racial and other demographic data on COVID-19.
- In January 2021, Rep. Pressley and Senator Warren applauded President Biden’s executive order to ensure an equitable pandemic response and recovery, which contained several provisions championed by the lawmakers.
- In December 2020, at the request of Congresswoman Pressley and Senator Warren, the Government Accountability Office (GAO) agreed to investigate how COVID-19 relief funds have been distributed to disproportionately affected communities.
- In July 2020, Congresswoman Pressley and Senator Warren wrote to the Department of Health and Human Services (HHS) asking for HHS’s report on the administration’s efforts to address racial disparities in health care access and outcomes, as required by the Patient Protection and Affordable Care Act (ACA).
- In April 2020, Rep. Pressley urged Governor Baker to rescind the Commonwealth’s proposed Crisis of Care Standards that would have disproportionately harmed Black and Brown communities and the disability community.
- In April 2020, Rep. Pressley and Senator Warren led their colleagues introducing the Equitable Data Collection and Disclosure on COVID-19 Act, legislation to require the federal government to collect and publicly release racial and other demographic data on COVID-19.
- Aspects of the legislation were included in an COVID-19 relief package signed into law later that month.
- In April 2020, Rep. Pressley, Sen. Markey, and Sen. Warren also sent a letter to the Centers for Medicare and Medicaid Services (CMS) calling on the agency to immediately release racial and ethnic data of Medicare beneficiaries who are tested or hospitalized for COVID-19.
- In March 2020, Rep. Pressley and Sen. Warren urged HHS to collect racial and ethnic demographic data on testing and treatment for COVID-19 to identify and address racial disparities.