ALS Better Care Act
- Sponsor
- Rep. Schakowsky, Janice D. [D-IL-9]
- Committees
- Ways and Means Committee (primary)
- Last action
- Feb 3, 2026
Bottom line
This bill aims to improve access to and quality of multidisciplinary care for ALS patients under Medicare by establishing a dedicated, supplemental payment for specialized services and eliminating patient cost-sharing for these services.
What it actually does
The bill, titled the "ALS Better Care Act," amends the Social Security Act to expand Medicare coverage for individuals diagnosed with Amyotrophic Lateral Sclerosis (ALS). It establishes a new, supplemental payment system for a comprehensive set of "ALS-related services" furnished in outpatient settings by qualified providers, beginning January 1, 2027. These services include specialized medical, therapeutic, and nursing support, along with coordination of durable medical equipment. The bill also mandates a report on challenges in ALS clinical trials.
Proponents argue
Proponents argue that ALS is a devastating neurodegenerative disease requiring complex, multidisciplinary care, which is currently under-reimbursed by Medicare. They contend that inadequate reimbursement leads to long wait times, hinders innovation, and limits access, especially for patients in rural areas who could benefit from telehealth. By providing a dedicated, supplemental payment and eliminating cost-sharing, the bill would extend lifespans, improve quality of life for ALS patients, and encourage investment in specialized care and research.
Opponents contend
While direct opposition to improving care for ALS patients is rare, potential concerns from a fiscal conservative perspective might focus on the open-ended nature of the "market basket percentage increase" and the potential for the Comptroller General's recommendations to significantly increase federal spending without strict budgetary controls. Concerns could also be raised about the administrative complexity of establishing a new payment system and the potential for unintended consequences in the broader healthcare market.
The bill is relatively short and clearly structured, making it accessible for a reader to understand its core provisions within a reasonable timeframe.
Section 3(a), amending Section 1861(s)(2) and adding 1861(nnn)
Medicare Coverage of ALS-Related Services
This provision adds a new category of "ALS-related services" to Medicare coverage, effective January 1, 2027. These services encompass a multidisciplinary approach to ALS care, including specialized medical, therapeutic, and nursing support, as well as coordination for durable medical equipment, all furnished in an outpatient setting to individuals medically diagnosed with ALS.
Supporters argue
Supporters argue that explicitly covering these essential, multidisciplinary services under Medicare is crucial for managing the complex and progressive needs of ALS patients, improving their quality of life and potentially extending their lifespans, as evidenced by studies on ALS clinics.
Critics contend
No specific opposition is typically raised against the explicit coverage of essential medical services for a debilitating disease like ALS, especially when framed as improving patient outcomes.
Tradeoffs
The primary tension is the increased federal expenditure for these services versus the improved health outcomes and quality of life for ALS patients.
Section 3(b), adding Section 1834(aa)
Establishment of a Supplemental Payment System for ALS Care
This section directs the Secretary of HHS to implement a new payment system that provides a single, supplemental payment to qualified providers for ALS-related services furnished during a visit. This payment is in addition to any other Medicare payments for those services, aiming to address current inadequate reimbursement rates for comprehensive ALS care.
Section 3(b), adding Section 1834(aa)(2)
Initial Payment Rate and Future Adjustments
The bill sets the initial supplemental payment at $800 per visit for 2027 and 2028. For 2029 and subsequent years, this amount will be adjusted annually by an "ALS services market basket percentage increase." Crucially, every third year starting in 2030, the payment amount can be updated based on recommendations from the Comptroller General, which are derived from per-patient utilization data from Medicare or private insurance, or expert recommendations, if higher than the market basket adjusted amount.
Section 3(b), adding Section 1834(aa)(5)
Elimination of Patient Cost Sharing
This provision mandates that payments for ALS-related services under the new system will be made on an assignment-related basis, explicitly stating that there shall be "no cost sharing" for covered ALS individuals. This means patients will not be responsible for deductibles, copayments, or coinsurance for these specific services.
Section 4
Study and Report on ALS Clinical Trial Challenges
This section requires the Secretary of Health and Human Services, through the Director of the National Institute of Neurological Disorders and Stroke (NINDS), to submit a report to Congress within 90 days of the Act's enactment. The report must identify challenges in administering and staffing ALS clinical trials, propose actions NINDS can take to address these challenges, and offer legislative recommendations, including appropriation requests, to improve trial administration.
Defines "qualified provider" as a provider capable of furnishing ALS-related services and meeting requirements prescribed by the Secretary through regulation, in consultation with ALS stakeholders.
Section 3(b), adding Section 1834(aa)(6)
Why it matters:This is standard legislative practice to allow agencies to develop detailed, technical rules with expert input, rather than embedding complex operational specifics directly in statute.
Case for: Supporters argue that deferring to rulemaking allows for flexibility and expert input from the ALS community, ensuring that the qualification criteria are appropriate and responsive to the evolving needs of ALS care.
Case against: Critics might argue that deferring such a critical definition to regulation introduces uncertainty for providers and could allow for administrative discretion that deviates from congressional intent, or could delay the full implementation of the program.
Estimated impact: The definition of "qualified provider" will determine the universe of entities eligible for the new supplemental payments, directly influencing the reach and cost of the program.