ALS Better Care Act
Sponsored By: Representative Schakowsky
Introduced
Summary
Medicare coverage for ALS-related services would be created so people with amyotrophic lateral sclerosis can get coordinated, ALS-specific care under a single, dedicated payment model. The bill would also set payment rules and require recurring Comptroller General reports plus a separate short report on ALS clinical trial administration.
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- Patients & families: Covers a bundle of ALS services including specialized physician or nurse practitioner support, occupational and physical therapy, speech pathology, dietary and respiratory support, registered nurse services, and coordination of durable medical equipment. No cost sharing is allowed.
- Providers: Establishes a 'qualified provider' category to furnish ALS-related services and receive a single per-visit payment. Payments require an ALS ICD-10-CM diagnosis code and can include adjustments for providers participating in NIH clinical trials.
- Medicare payments & oversight: Sets a base per-visit payment of $800 for 2027 and $800 for 2028, then ties later increases to an ALS services market basket and to Comptroller General recommendations every three years. The Comptroller General would publish an initial report by January 1, 2027 and then every third year to recommend payment amounts.
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Bill Overview
Analyzed Economic Effects
2 provisions identified: 2 benefits, 0 costs, 0 mixed.
New Medicare ALS outpatient payments
If enacted, Medicare would cover a new bundled category called "ALS-related services" for outpatient care starting January 1, 2027. The bill would pay a single per-visit amount to qualified providers and would ban cost sharing for beneficiaries. The base payment would be $800 in 2027 and $800 in 2028 unless the Comptroller General recommends a higher amount; later years would be updated by an ALS services market basket or by Comptroller General recommendations in certain years. Providers must bill using the ALS ICD-10 code, the Secretary would set qualified-provider rules through notice-and-comment rulemaking, and outpatient department payments would still apply where allowed.
Report on ALS clinical trial staffing
If enacted, the Secretary of HHS would have to publish a report within 90 days about administration and staffing challenges for ALS clinical trials. The report would be prepared through the NINDS Director and published on the agency website. It would list actions NINDS can take and include any legislative recommendations and requests for appropriations to improve trial administration.
Sponsors & CoSponsors
Sponsor
Schakowsky
IL • D
Cosponsors
Fitzpatrick
PA • R
Sponsored 2/3/2026
Crow
CO • D
Sponsored 2/3/2026
Quigley
IL • D
Sponsored 2/3/2026
Bacon
NE • R
Sponsored 2/20/2026
Morelle
NY • D
Sponsored 2/20/2026
Roll Call Votes
No roll call votes available for this bill.
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