ALS Better Care Act

The "ALS Better Care Act" proposes to amend Title XVIII of the Social Security Act to establish comprehensive Medicare coverage for individuals diagnosed with amyotrophic lateral sclerosis (ALS). This legislation introduces a new category of "ALS-related services," which includes crucial support such as specialized physician or nurse practitioner care, occupational and physical therapy, speech pathology, dietary and respiratory support, registered nurse assistance, and coordination of durable medical equipment. A key provision of the bill is the creation of a new payment system for these services, with an initial base payment of $800 per visit for qualified providers starting January 1, 2027. This payment amount will be adjusted annually based on an ALS services market basket percentage increase and periodically reviewed by the Comptroller General to ensure adequate reimbursement. Importantly, these ALS-related services will be furnished without any cost-sharing for the covered individuals. The bill also mandates payment adjustments for qualified providers participating in ALS clinical trials to account for increased costs, and for new, significant medical services or technologies. Furthermore, it requires the Secretary of Health and Human Services to submit a report to Congress identifying challenges in the administration and staffing of ALS clinical trials, along with recommendations for improvement, within 90 days of enactment.