ALS Better Care Act
Summary
What This Bill Does
This bill treats ALS care as a Medicare-covered service package rather than a set of separately underpaid supports. It defines ALS-related services to include specialized physician or nurse-practitioner support, occupational therapy, speech pathology, physical therapy, dietary and respiratory support, registered nurse support, and durable-medical-equipment coordination for covered ALS individuals. Beginning January 1, 2027, Medicare would pay ALS care providers a supplemental single payment, initially $800, with market-basket updates, GAO-recommended resets every third year, clinical-trial participation adjustments, new-service or technology adjustments, ICD-10-CM claim mechanics, and no beneficiary cost sharing.
Who Benefits and How
ALS patients, Medicare beneficiaries with ALS, ALS care providers, telehealth providers, and ALS clinical trial researchers benefit from covered multidisciplinary outpatient care and a dedicated Medicare reimbursement stream. The payment adjustment for clinical-trial participation gives ALS research centers a clearer way to absorb trial-related care costs.
Who Bears the Burden and How
CMS, the Department of Health and Human Services, the HHS Office of the Secretary, Medicare claims administrators, the Comptroller General, the National Institutes of Health, and NINDS staff must implement the coverage category, payment mechanism, claims code requirements, provider qualifications, GAO payment recommendations, and clinical-trial staffing report.
Key Provisions
- Adds ALS-related outpatient services to Medicare coverage for covered ALS individuals beginning January 1, 2027.
- Creates a supplemental single-payment system starting at $800 in 2027, with inflation updates, GAO-recommended resets, clinical-trial adjustments, and no beneficiary cost sharing.
- Requires qualified-provider standards to be developed through rulemaking after consultation with ALS patients, physicians, and nonprofit experts.
- Directs NINDS to report to Congress on ALS clinical-trial staffing, administration challenges, corrective actions, and legislative recommendations.
Evidence Chain:
This summary is generated from the full bill text using AI analysis. Expand "Detailed Analysis" below for identified beneficiaries/burden bearers with clause-level evidence links.
At a Glance
What This Bill Does
Adds Medicare coverage and a dedicated payment system for ALS-related outpatient services, including a $800 base payment in 2027 and required GAO reviews of payment adequacy.
Key Policy Areas
Healthcare, Medicare, Research
Primary Purpose
Adds Medicare coverage and a dedicated payment system for ALS-related outpatient services, including a $800 base payment in 2027 and required GAO reviews of payment adequacy.
Policy Domains
Substantive provisions
Identified Gains
- ALS patients
- Medicare beneficiaries with ALS
- ALS care providers
- Telehealth providers
- ALS clinical trial researchers
Identified Costs
- CMS
- Department of Health and Human Services
- HHS Office of the Secretary
- Medicare claims administrators
- Comptroller General
- National Institutes of Health
- NINDS staff
Sponsors
Legislative Progress
In CommitteeReferred to the Committee on Energy and Commerce, and in …
Introduced in House
Ms. Schakowsky (for herself, Mr. Fitzpatrick, Mr. Crow, and Mr. …
Stakeholder Effects
cui bono?How this legislation distributes effects. Mention counts reflect frequency, not effect magnitude.
CMS, Medicare beneficiaries with ALS
Positive-direction: Medicare beneficiaries with ALS
Negative-direction: CMS
ALS clinical trial sites, ALS researchers, NINDS
Positive-direction: ALS clinical trial sites, ALS researchers
Negative-direction: NINDS
Bill Structure & Actor Mappings
Who is "The Secretary" in each section?
- "Director"
- → Director of the National Institute of Neurological Disorders and Stroke
- "Secretary"
- → Secretary of Health and Human Services
- "Comptroller General"
- → Comptroller General of the United States
Key Definitions
Terms defined in this bill
A multidisciplinary outpatient package for covered ALS individuals including physician, therapy, dietary, respiratory, nursing, and durable-medical-equipment coordination services.
We use a combination of our own taxonomy and classification in addition to large language models to assess meaning and potential beneficiaries. High confidence means strong textual evidence. Always verify with the original bill text.
Learn more about our methodology