ALS Better Care Act
- Bill Number
- H.R. 7336
- Origin Chamber
- House
- Congress
- 119th Congress, Session 2
- Policy Area
- Health
- Status
- Introduced
- Latest Action
- 2026-02-03: Referred to the Committee on Energy and Commerce, and in addition to the Committee on Ways and Means, for a period to be subsequently determined by the Speaker, in each case for consideration of such provisions as fall within the jurisdiction of the committee concerned.
- Last Updated
- 2026-06-10T08:07:28Z
AI-Generated Summary
Purpose of the Legislation
The ALS Better Care Act (H.R. 7336) aims to improve Medicare coverage for people diagnosed with amyotrophic lateral sclerosis (ALS), a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord, leading to muscle weakness and eventual paralysis. It seeks to ensure access to specialized outpatient services that help manage ALS symptoms, extend lifespans, and enhance quality of life, while addressing reimbursement challenges for healthcare facilities and supporting clinical trials.
Key Provisions
- Coverage of ALS-Related Services: Starting January 1, 2027, Medicare will cover a bundle of ALS-related services provided in outpatient settings to individuals diagnosed with ALS. These services include:
- Specialized support from physicians or nurse practitioners.
- Occupational therapy (to help with daily activities).
- Speech pathology (to address communication and swallowing issues).
- Physical therapy (to maintain mobility).
- Dietary support (nutrition guidance).
- Respiratory support (breathing assistance).
- Registered nurse support.
- Coordination for durable medical equipment (items like wheelchairs or ventilators needed for long-term use).
- Payment System: Medicare will make a single bundled payment to "qualified providers" (healthcare facilities or professionals certified to deliver these services) for each patient visit, in addition to other standard payments. Key details:
- Base payment: $800 per visit in 2027, with potential increases based on cost-of-living adjustments (called the "ALS services market basket percentage increase") or recommendations from a government report.
- Adjustments: Extra payments for providers participating in ALS clinical trials (to cover added costs) and for new medical services or technologies.
- No cost-sharing: Patients pay nothing out-of-pocket; payments are made only if the provider accepts Medicare's assigned rate.
- Claims process: Providers submit claims using a specific diagnostic code for ALS from the International Classification of Diseases (ICD-10-CM, a standard medical coding system).
- Qualified Providers: Defined as facilities or professionals able to furnish these services, with certification requirements set by the Secretary of Health and Human Services (HHS) through public input from patients, doctors, and ALS organizations.
- Reports and Oversight:
- The U.S. Comptroller General (an independent auditor for the government) must submit reports every three years starting in 2027, recommending payment amounts based on utilization data, private insurance payments, or expert estimates.
- HHS, through the National Institute of Neurological Disorders and Stroke (part of the National Institutes of Health), must submit a report within 90 days of enactment identifying challenges in staffing and administering ALS clinical trials, along with solutions and funding requests.
- Implementation: HHS can use program instructions for most parts but must use formal rulemaking (a public comment process) to define qualified providers. Conforming changes ensure these payments work with existing Medicare rules for outpatient services.
Significant Changes to Existing Law
- Amends Section 1861 of the Social Security Act (which defines Medicare-covered benefits) to add ALS-related services as a new category, separate from standard fee-for-service payments.
- Introduces a dedicated bundled payment system under Section 1834, which is not currently available for ALS care, addressing inadequate reimbursements that lead to long wait times and limited innovation.
- Modifies outpatient payment rules (Section 1833) to allow supplemental payments for ALS services without reducing other benefits.
- Expands the definition of "arrangements" for services (Section 1861) to include ALS-specific care, ensuring flexibility in how providers deliver bundled services.
Potential Impacts
- On Citizens: ALS patients (about 30,000 in the U.S., with 5,000 new diagnoses yearly) will gain better access to coordinated care, potentially reducing travel burdens (especially in rural areas via telehealth, as noted in findings), improving symptom management, and extending survival by months or years based on studies cited. Families and caregivers may face less strain from coordinating multiple services.
- On Government Agencies: HHS and Medicare will see increased administrative workload for implementation, claims processing, and reports, plus higher short-term spending (estimated bundled payments could add costs, though not quantified in the bill). The National Institutes of Health may pursue more ALS trial funding to address identified challenges, potentially accelerating research.
- On International Relations: No direct impact; the bill focuses on domestic Medicare policy.
- Broader Effects: Could reduce overall healthcare costs long-term by preventing hospitalizations through better outpatient management, but might strain Medicare's budget without offsetting savings.
Main Stakeholders Affected
- ALS Patients and Families: Primary beneficiaries, gaining no-cost access to vital services.
- Healthcare Providers and Facilities: ALS clinics and specialists (e.g., neurologists, therapists) benefit from better reimbursements, enabling staffing, innovation, and trial participation; rural providers may expand telehealth.
- Government Entities: HHS, Medicare Administration, National Institutes of Health, and the Comptroller General, responsible for oversight, payments, and reporting.
- Researchers and Non-Profits: ALS organizations (e.g., advocacy groups) involved in consultations; clinical trial staff gain support to overcome funding and staffing barriers.
- Taxpayers: Indirectly affected through Medicare funding, which comes from federal budgets and premiums.
Notable Legal, Constitutional, or Political Implications
- Legal: Expands Medicare entitlements under the Social Security Act, potentially setting a precedent for bundled payments in other rare diseases. Requires HHS rulemaking, ensuring transparency via public input, but could face challenges if payment calculations are seen as arbitrary. No cost-sharing aligns with Medicare's goal of accessibility but may invite scrutiny over fiscal equity.
- Constitutional: No major issues; falls under Congress's spending power to regulate interstate commerce and provide for public welfare, consistent with prior Medicare expansions.
- Political: Bipartisan sponsorship (Democrats and Republicans) highlights rare disease advocacy; addresses rural healthcare disparities, appealing to broad constituencies. Could influence future budgets for ALS research (e.g., via NIH appropriations) and spark debates on Medicare sustainability amid rising chronic disease costs. The bill's emphasis on clinical trials supports innovation without mandating new spending, leaving funding to future legislation.
This summary was generated by AI and may contain inaccuracies. Refer to the official source document for the authoritative text.
Sponsor
Rep. Schakowsky, Janice D. [D-IL-9]
Cosponsors (12)
Rep. Fitzpatrick, Brian K. [R-PA-1], Rep. Crow, Jason [D-CO-6], Rep. Quigley, Mike [D-IL-5], Rep. Bacon, Don [R-NE-2], Rep. Morelle, Joseph D. [D-NY-25], Rep. Budzinski, Nikki [D-IL-13], Rep. Grijalva, Adelita S. [D-AZ-7], Rep. Magaziner, Seth [D-RI-2], Rep. Bynum, Janelle S. [D-OR-5], Rep. Schweikert, David [R-AZ-1], Rep. Schneider, Bradley Scott [D-IL-10], Rep. Pettersen, Brittany [D-CO-7]
Recent Actions
- 2026-02-03: Referred to the Committee on Energy and Commerce, and in addition to the Committee on Ways and Means, for a period to be subsequently determined by the Speaker, in each case for consideration of such provisions as fall within the jurisdiction of the committee concerned.
- 2026-02-03: Referred to the Committee on Energy and Commerce, and in addition to the Committee on Ways and Means, for a period to be subsequently determined by the Speaker, in each case for consideration of such provisions as fall within the jurisdiction of the committee concerned.
- 2026-02-03: Introduced in House
- 2026-02-03: Introduced in House
Bill Versions
- ALS Better Care Act — issued 2026-02-03 — PDF (14 pages)