Sponsors (13)
Official title: To amend title XVIII of the Social Security Act to provide coverage of ALS-related services under the Medicare program for individuals diagnosed with amyotrophic lateral sclerosis, and for other purposes.
Introduced February 3, 2026 by Janice D. Schakowsky · Last progress February 3, 2026
The bill creates a new Medicare outpatient benefit and financial supports that substantially improve coordinated care and clinical trial access for people with ALS, but does so at increased federal/Medicare cost and with risks of uneven access, provider underpayment in complex cases, and short-term administrative or research-resource trade-offs.
Medicare beneficiaries with ALS gain a new, statutory outpatient benefit (starting Jan 1, 2027) that covers coordinated multidisciplinary ALS services (PT/OT/speech/respiratory/diet/nursing/durable equipment coordination), reducing out-of-pocket gaps and improving care coordination and quality of life.
People with ALS and researchers/trial sites benefit from stronger incentives and supports for clinical trials — additional payment adjustments for trial costs, potential funding to encourage facility investment, and NINDS actions to identify and fix staffing/administrative bottlenecks — likely speeding trial recruitment and access to investigational therapies.
ALS patients in rural areas may have improved access through expanded telehealth options, reducing travel burdens and enabling more timely specialist input.
The bill increases federal/Medicare spending (new benefit, higher reimbursements, trial supports and possible appropriation requests), creating budget pressure that could raise taxes, premiums, or require offsets elsewhere.
Eliminating patient cost sharing for the ALS outpatient benefit shifts costs entirely to Medicare, reducing beneficiary cost-control incentives and raising the risk of higher utilization and program costs.
Relying more on telehealth risks leaving patients without reliable broadband or digital skills—particularly in rural and low-income communities—worse off, limiting the benefit's reach.
Based on analysis of 4 sections of legislative text.
Adds a Medicare outpatient benefit for defined ALS-related services with a single-visit payment starting Jan 1, 2027 and sets a statutorily guided update process.
Creates a new Medicare outpatient benefit covering a bundle of multidisciplinary ALS-related services and establishes a single-visit payment to qualified providers beginning January 1, 2027. It sets a statutory payment formula with a base amount and periodic updates tied to an ALS services market-basket index and triennial Comptroller General recommendations, and requires a NINDS report on ALS clinical trial administration and staffing with legislative recommendations. The bill defines which services qualify as ALS-related (specialized physician/NP care, OT, PT, speech pathology, dietary, respiratory, registered nursing, and durable medical equipment coordination), mandates a single annual base payment amount schedule, directs the Comptroller General to issue payment recommendations every three years, and tasks NIH/NINDS with identifying trial challenges and possible fixes within 90 days of enactment.