Legislation targets Medicare gaps limiting access to specialized ALS care and clinical trials
ARLINGTON, Va., Feb. 3, 2026 /PRNewswire/ — The ALS Association today applauded the reintroduction of the ALS Better Care Act bipartisan legislation to expand access to high-quality multidisciplinary care and clinical trials for people living with amyotrophic lateral sclerosis (ALS). ALS is a rapidly progressive and fatal neurodegenerative disease. Most people live just two to five years after diagnosis. As the disease advances, people lose the ability to move, speak, swallow, and breathe, making fast access to coordinated, specialized care essential. Research shows that people living with ALS who receive multidisciplinary care live longer and experience a higher quality of life. Many ALS clinics are struggling to keep their doors open. Medicare reimbursement fails to reflect the complexity, frequency, and team-based nature of ALS care, leaving even top-tier clinics underfunded, overstretched, and forced to limit the number of patients they can see. These barriers delay diagnosis, restrict access to care, and prevent many people from being evaluated for clinical trials, where time is critical. “For people living with ALS, access to specialized care is not optional, it’s life-extending,” said Melanie Lendnal, Esq., senior vice president of policy and advocacy at the ALS Association. “The ALS Better Care Act fixes a broken Medicare payment system so clinics can provide the timely, coordinated care that improves quality of life, extends survival, and gives more people a chance to participate in clinical trials.” The bill would establish a supplemental $800 Medicare add-on payment per visit, ensuring providers are properly reimbursed for the multidisciplinary, team-based care ALS requires. Multidisciplinary ALS care brings together specialists across multiple disciplines, including occupational and physical therapy, respiratory care, speech and communication support, nutrition and dietary services, and palliative care. People living with ALS are often seen every two to three months, with these visits shown to improve quality of life, support caregivers, and reduce preventable complications such as falls and hospitalizations. The ALS Association urges Congress to advance the ALS Better Care Act and ensure that people living with ALS can access the care and hope they need without delay. Tell Your Members of Congress to Cosponsor the ALS Better Care Act. About the ALS AssociationThe ALS Association is the largest ALS organization in the world. The ALS Association funds global research collaborations, assists people with ALS and their families through its nationwide network of care and certified clinical care centers, and advocates for better public policies for people with ALS. The mission of the ALS Association is to make ALS livable and cure it. For more information about the ALS Association, visit our website at www.als.org. About ALS
Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. Over the course of the disease, people lose the ability to move, to speak, and eventually, to breathe. The disease is always fatal, usually within five years of diagnosis. Few treatment options exist, resulting in a high unmet need for new therapies to address functional deficits and disease progression. SOURCE The ALS Association
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