April 7, 2022
Pressley, Duckworth, Beyer, Colleagues Unveil TREAT Long COVID Act to Expand Access to Treatment
WASHINGTON – Today, Congresswoman Ayanna Pressley (MA-07), alongside Senator Tammy Duckworth (D-IL), Representatives Don Beyer (VA-08) and Lisa Blunt Rochester (D-DE), and Senators Tim Kaine (D-VA) and Edward J. Markey (D-MA), introduced 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. The first-of-its-kind 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.
Rep. Pressley, Rep. Beyer, and advocates unveiled the legislation at a virtual press conference earlier today. Full video of the press conference is available here.
“A just and equitable pandemic recovery must include the millions of people living with Long COVID, a community whose voices and suffering have been ignored for far too long. This pandemic has had prolonged health impacts on our most vulnerable individuals and families—particularly in Black, brown, and historically marginalized communities—and it is long past time we provide accessible treatment for our long haulers who have been living with the physical and mental anguish without adequate care,” said Rep. Pressley (MA-07). “By helping folks with Long COVID get critical treatment right in their communities, the TREAT Long COVID Act will help save lives and support our long-term recovery from this pandemic. People struggling with Long COVID deserve accessible and affordable medical care and treatment now, and Congress must pass our bill without delay.”
“Even if COVID-19 disappeared tomorrow, millions of Americans who contracted this disease—including people of color who continue to bear the brunt of this pandemic—would continue to suffer from long COVID, with symptoms ranging from heart palpitations to brain fog,” said Senator Duckworth (D-IL). “A holistic approach to treatment is absolutely necessary, particularly for those communities who face the harshest barriers to obtaining healthcare. That’s one of the reasons why, as Democrats continue our work to make sure people have access to tests, vaccines and therapeutics, I’m proud to introduce the TREAT Long COVID Act with Senators Markey and Kaine and Congresswoman Pressley. It would help all those living with long COVID gain better access to medical care and treatment options in their communities so we can help save lives and make sure no one is left behind on the road to recovery.”
“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 (VA-08). “Our bill would provide crucial funding to support the creation and expansion of Long Covid clinics to provide affected Americans with treatment and care. There is a staggering amount of need for these services, which still are not receiving the level of attention and response from policymakers that they deserve. Our bill would complement recent actions announced by the Biden-Harris Administration to meet that need and help the large and growing number of Americans living with this illness.”
“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 (D-DE). “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.”
“After talking to Virginians who are living with long COVID and meeting with medical providers across the Commonwealth, it’s clear we must do more to support health facilities that provide needed services for people dealing with the long-term impacts of the virus,” said Senator Kaine (D-VA). “I’m proud to support the TREAT Long COVID Act to ensure clinics that help people with long COVID have access to critical funding and resources to continue their vital work.”
“As we’ve learned, COVID-19 presents itself differently in different patients – some are asymptomatic, and others have serious and even fatal complications. This wide range of health impacts from COVID-19 is also true for patients dealing with Long COVID,” said Senator Markey (D-MA). “There is no one-size-fits all approach to Long COVID treatment, which is why we must expand access to comprehensive, individualized care. The TREAT Long COVID Act provides funding for multidisciplinary Long COVID clinics, helping ensure patients are at the center of our approach to this illness that impacts so many.”
According to the Centers for Disease Control and Prevention, people with Long COVID may experience a combination of symptoms, ranging from extreme fatigue and cognitive dysfunction or “brain fog,” to muscle pain and gastrointestinal issues, to difficulty breathing, insomnia, and heart palpitations. Although there is no official count of people suffering from Long COVID, a conservative estimate of only ten percent of documented COVID-19 survivors could mean nearly 8 million people are impacted across the United States. Currently, there is no federal program focused on expanding treatment options for this unique and growing population. The absence of specialized support contributes to patients experiencing greater physical and mental anguish, disruption in employment and education, and reduced quality of life.
The TREAT Long COVID Act would expand treatment for Long COVID nationwide by:
- Authorizing the Department of Health and Human Services to award grants up to $2,000,000 to health care providers, including community health centers;
- Granting funding for the creation and expansion of multidisciplinary Long COVID clinics to address the physical and mental health needs of patients;
- Prioritizing funding for health providers that plan to engage medically underserved populations and populations disproportionately impacted by COVID-19;
- Ensuring that treatment is not denied based on insurance coverage, date or method of diagnosis, or previous hospitalization;
- Encouraging ongoing medical training for physicians in Long COVID Clinics and other health care workers serving patients; and
- Requiring grantees to submit an annual report on its activities that includes evaluations from patients.
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., American Association on Health and Disability, and Lakeshore Foundation.
COVID-19 Longhauler Advocacy Project: “We are pleased to see lawmakers recognizing the need for additional training and resources to treat those suffering with Long COVID. It’s essential to provide training in the associated conditions being seen in Long COVID such as Dysautonomia, Myalgic Encephalomyelitis and Mast Cell Activation Syndrome so that we can properly identify and treat the conditions Longhaulers experience. These conditions, most commonly occurring in Longhaulers, lack specialists or have extremely long wait times. We hope this bill can provide funding to facilitate an interest in these specialties, creating more available and knowledgeable providers for the millions of Longhaulers who so desperately need specialized care for multiple complex chronic conditions due to Long COVID.”
Anglea M. Vazquez, President of Body Politic: “The TREAT Long COVID Act will ensure that patients living with protracted symptoms of a COVID-19 infection, including those from historically marginalized communities, receive appropriate, coordinated care and that clinicians are better prepared to treat this and other complex infection-triggered chronic conditions now and in the future.”
Patient-Led Research Collaborative: “Too many people with Long COVID are not receiving adequate care – whether due to lack of access, lack of insurance, or lack of provider education on the illness and its associated conditions. The Treat Long COVID Act will start to solve these issues by establishing accessible, equitable, and informed treatment for all people with Long COVID. Patient-Led Research Collaborative is proud to endorse.”
American Physical Therapy Association: “APTA is grateful to Rep. Pressley for her leadership in helping address the needs of the growing number of individuals who have post-acute sequelae of SARS-CoV-2 infections, also known as Long COVID. 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 will require health care providers, including physical therapists, to collaborate in a multidisciplinary approach to ensure equitable access to care for those impacted by Long COVID.”
Steven R. Flanagan, MD, FAAPMR, President-Elect, American Academy of Physical Medicine and Rehabilitation: “As we continue to build our long-term understanding of Long COVID, it is critical that we make sure the millions of Americans dealing with long-term symptoms of this disease today are not left behind. Physical medicine and rehabilitation physicians and our other partners across the medical profession have seen firsthand the importance of multidisciplinary, specialized care to helping patients reach their highest levels of recovery, and this legislation will be essential to supporting access to this treatment. We are grateful to Congresswoman Pressley, Reps. Blunt Rochester and Beyer, and Sens. Duckworth, Kaine, and Markey for their leadership and for championing the care needs of individuals with Long COVID.”
Mbadika: “Long COVID has greatly impacted the Roxbury community. As residents, STEM educators, and Long COVID sufferers, we understand first hand the impact of this post-viral condition to our lives. We support this legislation to provide support and relief to those who’ve suffered in silence while being the backbone of not only the Greater Boston community and this country as a whole.”
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.
Last month, 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 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.
- 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 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 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 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 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 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 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 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 July 2021, Rep. Pressley and Senator Warren urged Governor Baker to continue reporting demographic data on COVID-19 hospitalizations.
- 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 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 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 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.
- In late January, she held a virtual roundtable with healthcare providers, advocates, and patients on how to address the crisis of Long COVID.
- In March 2022, Rep. Pressley led 23 of her colleagues 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.