Schakowsky, Bipartisan Colleagues Reintroduce ALS Better Care Act to Expand Access to Specialized Care

WASHINGTON - Today, U.S. Representatives Jan Schakowsky (IL-09), Brian Fitzpatrick (PA-01), Jason Crow (CO-06), and Mike Quigley (IL-05) reintroduced the ALS Better Care Act, bipartisan legislation to expand access to specialized, multidisciplinary care for people living with amyotrophic lateral sclerosis (ALS) at no cost by creating a supplemental, facility-based payment in Medicare for ALS-related services. U.S. Senators Lisa Murkowski (R-AK) and Chris Coons (D-DE) introduced companion legislation in the Senate.

"Every year, thousands of people in the United States are newly diagnosed with ALS, with an average of 15 new cases each day. I watched as one of my dear friends suffered from this debilitating disease with little hope. While significant challenges remain, meaningful progress is being made in ALS clinical care," said Congresswoman Jan Schakowsky. "Specialized, multidisciplinary care has been shown to extend survival and improve quality of life for people with ALS. Our bill, the ALS Better Care Act, provides hope and ensures clinics can continue delivering lifesaving, comprehensive care to ALS patients."

"For people living with ALS, time is precious-and the health care system should never waste it. As Co-Chair of the ALS Caucus, I've spent years working alongside patients, families, clinicians, and advocates to strengthen access to the coordinated care ALS demands," said Congressman Brian Fitzpatrick. "Multidisciplinary care has been proven to extend life and improve quality of life, yet outdated Medicare rules continue to stand in the way. This two-party solution removes those barriers by fully covering team-based care, supporting telehealth, and allowing families to focus on what matters most: their health and their time together."

"ALS is a brutal disease. It's already painful enough for those with the disease and their loved ones, without having to worry about getting care," said Congressman Jason Crow, Co-Chair of the ALS Caucus. "As co-chair of the ALS Caucus, I'll always support efforts to cut down on red tape and ensure folks living with ALS have access to the high-quality, affordable health care they need."

"ALS is a devastating disease, and people living with it deserve care that matches its complexity," said Congressman Mike Quigley. "Multidisciplinary care is proven to improve patients' health outcomes and quality of life, which is why I'm proud to join my colleagues in introducing the ALS Better Care Act-to bring comprehensive ALS care to patients nationwide."

"ALS remains one of the most indiscriminate and devastating diseases. This legislation will provide critical investments in research and care to improve the quality of life for those living with ALS," said Senator Lisa Murkowski. "We must come together as legislators, healthcare providers, researchers, advocates, and caretakers to use every last resource at our disposal to show up for those affected by this ruthless disease."

"To act on ALS is to address cruelty," said Senator Chris Coons. "To know people living with ALS and to know those caring for them is to know hope, determination, and passion in the face of that cruelty. That's why I'm proud to introduce the bipartisan ALS Better Care Act to help fight one of the most devastating diseases our friends and neighbors face. Together we can keep working to end this cruel disease."

The ALS Better Care Act would strengthen Medicare coverage for multidisciplinary ALS clinic services, ensuring patients can receive coordinated care from neurologists, respiratory therapists, physical and occupational therapists, speech-language pathologists, social workers, and other specialists in a single, integrated setting.

Leading ALS advocacy organizations, clinicians, patients, and caregivers support the legislation, emphasizing that access to multidisciplinary care is essential to improving outcomes and quality of life for people living with ALS.

"People with ALS live longer and more fulfilling lives when they have access to multidisciplinary ALS care," said Laura Freveletti, CEO of the Les Turner ALS Foundation. "ALS is a challenging and complex disease, but we know how to treat it: at clinics that combine the expertise of occupational, respiratory, and physical therapists, along with other health care professionals. The ALS Better Care Act is a critical step forward that will reduce wait times and provide relief for people living with ALS and care teams everywhere."

"The Muscular Dystrophy Association is proud to endorse the ALS Better Care Act. This legislation represents a critical step toward removing financial and structural barriers that prevent people living with ALS from accessing optimal care. If enacted, the bill would reduce the need for frequent travel, support more coordinated and comprehensive care both in and outside the clinic, and expand opportunities for research participation. Together, these improvements would significantly strengthen access to the high-quality care the ALS community deserves," said Sharon Hesterlee, PhD, President and CEO, Muscular Dystrophy Association.

"Multidisciplinary care has been proven to help people with ALS live longer and with a better quality of life. Every person living with ALS deserves access to this level of care, which our nationwide network of certified multidisciplinary clinics provides," said Calaneet Balas, CEO of the ALS Association. "We are grateful to Senators Coons and Murkowski and Representatives Schakowsky and Fitzpatrick for championing the ALS Better Care Act, which supports the needs of people living with ALS, their families, and the professionals who care for them."

"ALS is a complex and demanding disease. For many people, coordinated clinic-based care is one of the few evidence-based approaches that can extend survival and improve quality of life. Unfortunately, inadequate Medicare reimbursement makes it difficult for multidisciplinary ALS clinics to sustain the comprehensive services patients need," said Jerry Dawson, President and CEO of ALS United. "The ALS Better Care Act addresses this urgent gap by providing supplemental Medicare support so clinics can continue delivering the collaborative care patients depend on and expand access for families who may live hours from the nearest clinic. We commend Senators Coons and Murkowski and Representatives Schakowsky and Fitzpatrick for their leadership on the ALS Better Care Act and their commitment to improving care for people living with ALS and their families."

ALS is a progressive and fatal neurodegenerative disease that affects thousands of Americans each year. Studies have shown that patients receiving coordinated, multidisciplinary care live longer and experience improved quality of life.

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