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March 15, 2024

On Long COVID Awareness Day, Pressley Keeps Up Fight for COVID Long Haulers

Pressley Has Led Efforts in Congress to Expand Access to Long COVID Treatment, Invest in Research, and More

WASHINGTON – Today, Congresswoman Ayanna Pressley (MA-07) issued the following statement marking Long COVID Awareness Day while continuing her fight in Congress to support the millions of people in America still living with COVID-19.

“Long COVID remains a national crisis in America that demands a bold, federal response that ensures no one is ignored, left out, or left behind in our recovery. On Long COVID Awareness Day, I’m proud to join national and grassroots advocates across the country to demand action from lawmakers to provide our COVID Long Haulers with the resources and treatment they need and deserve,” said Rep. Pressley. “Congress must immediately pass my TREAT Long COVID Act with Rep. Beyer and Rep. Blunt Rochester to expand access to Long COVID clinics and help Long Haulers access care right in their communities, as well as fully fund the U.S. Department of Health and Human Services’ Office of Long COVID Research and Practice, and make bold federal investments in Long COVID research. As we heal from the COVID-19 pandemic, I want our Long Haulers to know that we see them, their experiences are real, and we will never stop fighting for them.”

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, and more than 65 million people are suffering worldwide. These complications affect people of all ages and all walks of life, with disproportionate impacts reported on women and people of color.

In Congress, Rep. Pressley, along with Representatives Don Beyer and Lisa Blunt Rochester, has introduced the 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 would 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. A summary of the bill can be found here, and the bill text is available here.

Rep. Pressley has also held a series of virtual and in-person roundtable discussions with patients, health care providers, and advocates in the Massachusetts 7th to discuss the Long COVID crisis. Watch their roundtable here.

Congresswoman Pressley has nominated two constituents to serve on HHS’ Federal Advisory Committee on Long COVID.

Rep. Pressley has been a longtime champion 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 October 2023, Rep. Pressley joined Boston RECOVER in discussing policy priorities to address Long COVD and advance health equity.
  • 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.
  • 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.