The ALS Better Care Act expands Medicare coverage to pay for specialized care services that help people with amyotrophic lateral sclerosis (ALS), a serious neurodegenerative disease that progressively weakens muscles. Starting January 1, 2027, Medicare will cover a comprehensive package of ALS-related services including specialized doctor or nurse practitioner visits, occupational therapy, speech therapy, physical therapy, dietary support, respiratory support, nursing care, and coordination of medical equipment. These services will be paid through a single bundled payment to qualified providers rather than separate payments for each service, which should reduce paperwork and make care more efficient.

The bill sets the initial payment at $800 per visit in 2027 and 2028, with adjustments in future years based on cost increases and recommendations from the Comptroller General. The payment system includes special adjustments for providers participating in ALS clinical trials and for new medical technologies. Importantly, patients won't have to pay any out-of-pocket costs for these covered services. The bill also recognizes the importance of telehealth for ALS patients, especially those in rural areas or areas with limited specialist access, allowing remote care options as part of the coverage. Additionally, the National Institute of Neurological Disorders and Stroke must report to Congress within 90 days on challenges facing ALS clinical trials and recommend ways to improve them.