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S 465

SC Society of Association Executives Day

2025-2026 Regular Session Introduced by Russell Ott

Expands Massachusetts ALS home-care access to patients of all ages.

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Bill Summary · S 465

Summary — S.465 (2025): "An Act supporting individuals suffering with amyotrophic lateral sclerosis and their families"

Bill number: S.465
Introduced: Feb 6, 2025
Primary sponsor (filed in MA Senate): Sal N. DiDomenico
Status (as provided): RECOMMIT, ENACTING CLAUSE STRICKEN (see Procedural Notes)

Purpose

The bill aims to (1) expand access to home care services for people diagnosed with amyotrophic lateral sclerosis (ALS) regardless of age, and (2) require state health agencies to apply patient-centered standards when using research and economic analyses to make coverage, payment, or policy decisions—while prohibiting the use of dollars-per-quality-adjusted-life-year (dollars-per-QALY) or similar measures.

Key provisions

  • Section 1 — Home care eligibility

    • Directs the Executive Office of Elder Affairs to amend the Massachusetts Home Care regulations (651 CMR 3.00) to require that home care program services be made available to persons diagnosed with ALS regardless of age, provided they otherwise meet program eligibility.
    • Requires the Secretary of Health and Human Services to ensure related agencies promulgate necessary implementing regulations.

  • Section 2 — Patient-centeredness standard for the Division of Medical Assistance (MassHealth)

    • Adds Section 79 to Chapter 118E establishing that research and analyses relied upon for decision-making that impact enrollee access must meet patient-centeredness standards.
    • Enumerated expectations include:
    • Evaluations that include outcomes prioritized by patients and people with disabilities (and commissioning patient surveys if needed).
    • Analyses that consider relevant patient subgroups.
    • Scientific rigor: consideration of the full range of relevant peer‑reviewed evidence (including real‑world evidence) and caution against over‑interpreting inconclusive findings.
    • Prohibits the use of dollars-per-QALY or similar measures in determining cost‑effectiveness, coverage, reimbursement, cost‑sharing, or incentive policies.
    • Requires policies that limit access to include appeals and physician override mechanisms; prohibits discrimination against physicians for using overrides.

  • Section 3 — Patient-centeredness standard for the Health Policy Commission (HPC)

    • Adds an analogous Section 20 to Chapter 6D, imposing the same patient-centered research standards and the same prohibition on dollars‑per‑QALY or similar measures for HPC analyses that influence coverage or valuation decisions.

Who is affected

  • Primary beneficiaries: People with ALS in Massachusetts (expanded access to home care regardless of age).
  • Agencies: Executive Office of Elder Affairs, Division of Medical Assistance (MassHealth), Health Policy Commission.
  • Secondary affected parties: health care providers, insurers, manufacturers and contracted researchers/vendors who supply evidence or analyses used in state decision-making; physicians (through physician-override protections); patient advocacy groups.

Potential impacts

  • Expands program access for ALS patients and may increase demand for home care services and associated funding.
  • Changes the evidentiary and analytic standards state agencies must use when assessing treatments or setting policy; may limit use of standard cost‑effectiveness tools (like QALYs), potentially affecting coverage decisions, formularies, and reimbursement policies.
  • May increase administrative requirements for state agencies and contractors (to document patient-centeredness and provide appeals/override mechanisms).

Procedural notes and document inconsistencies

  • The bill text filed in the Massachusetts Senate (filed by Sen. Sal DiDomenico, D‑Middlesex & Suffolk) focuses on ALS and patient-centeredness. Legislative action entries provided list multiple committee referrals, a May 12, 2025 hearing, and a July 14, 2025 favorable report to Health Care Financing.
  • The supplied metadata also contains conflicting or unrelated items (alternate titles such as "GRID Power Act," other sponsor lists that appear to be federal senators, and references to confirmatory adoptions/multi‑parent custody). Those items appear to be errors or artifacts from other bills and are not reflected in the Massachusetts bill text summarized above.
  • Readers should consult the official Massachusetts legislative website (bill S.465 / Senate Docket No. 1754) for the authoritative text and current status.

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

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