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SD 1754

An Act supporting individuals suffering with amyotrophic lateral sclerosis and their families

194th Legislature (2025-2026) Introduced by Sal DiDomenico

Expands ALS home-care access to patients of all ages and mandates patient-centered, evidence-based standards in MassHealth and policy reviews, banning dollar-per-QALY approaches.

House concurred
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Bill Summary · SD 1754

Summary: Senate Bill SD 1754 – An Act supporting individuals suffering with amyotrophic lateral sclerosis and their families

Overview

  • Bill number: SD 1754
  • Title: An Act supporting individuals suffering with amyotrophic lateral sclerosis and their families
  • Sponsor: Sen. Sal N. DiDomenico
  • Introduced: March 10, 2025
  • Status: House concurred (Legislative actions show referral to Elder Affairs and House concurrence on 2025-03-10)
  • Purpose: Expand access to care for people diagnosed with ALS and strengthen patient-centered standards in research, analysis, and health coverage decisions.

Key Provisions

Section 1 – ALS-compatible home care access

  • Agency: Executive Office of Elder Affairs (EOEA), under authority in M.G.L. ch. 19A, sec. 4.
  • Change: Amend 651 CMR 3.00 (Massachusetts home care regulations) to require home care program services for persons diagnosed with ALS, regardless of age, provided they meet eligibility criteria.
  • Implementation: Secretary of Health and Human Services to ensure related agencies promulgate necessary regulations to implement the act.

Section 2 – Patient-Centeredness standards for MassHealth (Massachusetts Division of Medical Assistance)

  • New provision: M.G.L. Chapter 118E, adding Section 79 (Patient-Centeredness).
  • Core requirements:
    • Standards for decision-relevant research and analysis: ensure outcomes prioritized by patients and people with disabilities are considered; may include surveys of patients to identify relevant outcomes.
    • Subgroup analysis: ensure consideration of differences across patient subpopulations.
    • Scientific rigor: require full range of relevant, peer-reviewed evidence (including real-world evidence and diverse sponsors) and avoid over-interpretation of inconclusive findings; allow additional research when needed.
  • Prohibitions:
    • No use of discriminatory measures such as dollars-per-quality-adjusted life year (QALY) in determining coverage, value, payment, cost-sharing, or incentive policies.
  • Appeals/physician override:
    • Policies affecting access must include an appeals process and physician override mechanisms; physicians cannot be penalized for using override options.

Section 3 – Patient-Centeredness standards for Health Policy Commission reviews

  • Agency: Massachusetts Health Policy Commission (Chapter 6D).
  • New provision: Section 20 (Patient-Centeredness).
  • Core requirements mirror Section 2:
    • Standards for patient-centered research and analysis used to determine the value or access to health treatments/services.
    • Public summaries of patient-centered standards.
    • Emphasis on patient outcomes, subgroup considerations, and scientific rigor.
  • Prohibitions and override:
    • Prohibition on using dollars-per-QALY or similar discriminatory measures.
    • Ensures mechanisms for appeals and physician overrides in policy decisions.

Who Is Affected

  • ALS patients and their families (expanded eligibility for home care regardless of age).
  • Home care providers and agencies serving ALS patients.
  • MassHealth enrollees and applicants.
  • Researchers, third-party analysts, and state agencies involved in coverage determinations and value assessments.
  • Physicians (due to override and appeals protections).

Implementation and Timeline

  • Regulations to be amended/promulgated by the relevant agencies (EOEA; MassHealth; Health Policy Commission) to implement the act.
  • Specific effective dates are not stated in the bill text; regulatory changes and implementation would follow enactment and administrative rulemaking processes.

Legislative History

  • Senate Docket: 1754; Filed 1/16/2025; Presented by Sen. DiDomenico.
  • Actions: Referred to the Senate Committee on Elder Affairs (2025-03-10); House concurred (2025-03-10).

Potential Impacts

  • Increased access to home-based care for ALS patients of all ages.
  • A shift toward more patient-centered decision-making in Medicaid and health policy reviews.
  • Reduced use of cost-effectiveness measures tied to QALYs in coverage decisions.
  • Administrative and regulatory workload to align programs with new standards.

Compiled from official sources — confirm details with the bill’s official record.

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