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SENATE DOCKET, NO. 1754 FILED ON: 1/16/2025
SENATE . . . . . . . . . . . . . . No. 465
The Commonwealth of Massachusetts
_________________
PRESENTED BY:
Sal N. DiDomenico
_________________
To the Honorable Senate and House of Representatives of the Commonwealth of Massachusetts in General
Court assembled:
The undersigned legislators and/or citizens respectfully petition for the adoption of the accompanying bill:
An Act supporting individuals suffering with amyotrophic lateral sclerosis and their families.
_______________
PETITION OF:
NAME:DISTRICT/ADDRESS :Sal N. DiDomenicoMiddlesex and Suffolk 1 of 4
SENATE DOCKET, NO. 1754 FILED ON: 1/16/2025
SENATE . . . . . . . . . . . . . . No. 465
By Mr. DiDomenico, a petition (accompanied by bill, Senate, No. 465) of Sal N. DiDomenico
for legislation to support individuals suffering with amyotrophic lateral sclerosis and their
families. Elder Affairs.
The Commonwealth of Massachusetts
_______________
In the One Hundred and Ninety-Fourth General Court
(2025-2026)
_______________
An Act supporting individuals suffering with amyotrophic lateral sclerosis and their families.
Be it enacted by the Senate and House of Representatives in General Court assembled, and by the authority
of the same, as follows:
1 SECTION 1. The executive office of elder affairs, under authority granted in section 4 of
2chapter 19A of Massachusetts general laws, shall amend the Massachusetts home care
3regulations (651 CMR 3.00). Such amendment shall require home care program services be
4made available to persons diagnosed with amyotrophic lateral sclerosis regardless of their age, if
5they are otherwise eligible for such services. The secretary for health and human services shall
6ensure that the relevant agencies under her purview promulgate regulations as necessary to
7implement this act.
8 SECTION 2. Chapter 118E: DIVISION OF MEDICAL ASSISTANCE of the
9Massachusetts General Laws, as appearing in the 2018 Official Edition, is hereby amended by
10adding the following section:
11 Section 79: Patient-Centeredness 2 of 4
12 Section 79 (a) Standards for Patient-Centeredness in Research & Analysis. The Division
13of Medical Assistance shall ensure that any portfolio of research and analysis relied upon for
14decision-making, whether provided by a state agency or a third party, impacting enrollee access
15to healthcare treatments and services, meets standards of patient-centeredness. The Division of
16Medical Assistance shall publicly provide a summary of patient-centeredness standards for any
17such analysis that includes, but is not limited to:
18 1) Evaluation of a range of research and analysis that includes outcomes prioritized by
19patients and people with disabilities within a specific disease area. If necessary, the Division of
20Medical Assistance will commission a survey of patients to identify relevant outcomes within a
21disease area.
22 2) Evaluation of a range of research and analysis that looks at relevant patient subgroups
23to ensure consideration of important differences in preferences and clinical characteristics within
24patient subpopulations.
25 3) Scientific Rigor: The Division of Medical Assistance shall require research and
26analysis to comply with good research practices, defined as consideration of the full range of
27relevant, peer-reviewed evidence (e.g., real-world evidence, research from range of sponsors
28including manufacturers), avoid patient harm through over-interpretation of findings of
29“inconclusive” evidence of clinical differences and instead allow time for conduct of additional
30research.
31 (b) Prohibition on Reliance on Discriminatory Measures. The Division of Medical
32Assistance shall not develop or utilize, directly or indirectly through a contracted entity or other
33third-party, a dollars-per-quality adjusted life year or any similar measures or research in 3 of 4
34determining whether a particular health care treatment is cost effective, recommended, the value
35of a treatment, or in determining coverage, reimbursement, appropriate payment amounts, cost-
36sharing, or incentive policies or programs.
37 (c) Appeals and Physician Override Mechanisms. The Division of Medical Assistance
38may not implement any policy limiting patient access to healthcare treatment and services which
39does not contain an appeals or physician override mechanism. Physicians may not be
40discriminated against or otherwise negatively impacted for utilizing available physician override
41mechanisms.
42 SECTION 3. Chapter 6D of the General Laws, as appearing in the 2018 Official Edition,
43is hereby amended by adding the following section:
44 Section 20. Patient-Centeredness Standards for Health Policy Commission Reviews
45 Section 20 (a) Standards for Patient-Centeredness in Research & Analysis. The Health
46Policy Commission shall ensure that any portfolio of research and analysis relied upon for
47determining the value of a healthcare treatment or service , whether provided by a state agency
48or a third party, impacting enrollee access to healthcare treatments and services, meets standards
49of patient-centeredness. The Health Policy Commission shall publicly provide a summary of
50patient-centeredness standards for any such analysis that includes, but is not limited to:
51 1) Evaluation of a range of research and analysis that includes outcomes prioritized by
52patients and people with disabilities within a specific disease area. If necessary, the Health Policy
53Commission will commission a survey of patients to identify relevant outcomes within a disease
54area. 4 of 4
55 2) Evaluation of a range of research and analysis that looks at relevant patient subgroups
56to ensure consideration of important differences in preferences and clinical characteristics within
57patient subpopulations.
58 3) Scientific Rigor: The Health Policy Commission shall require research and analysis to
59comply with good research practices, defined as consideration of the full range of relevant, peer-
60reviewed evidence (e.g., real-world evidence, research from range of sponsors including
61manufacturers), avoid patient harm through over-interpretation of findings of “inconclusive”
62evidence of clinical differences and instead allow time for conduct of additional research.
63 (b) Prohibition on Reliance on Discriminatory Measures. The Health Policy Commission
64shall not develop or utilize, directly or indirectly through a contracted entity or other third-party,
65a dollars-per-quality adjusted life year or any similar measures or research in determining
66whether a particular health care treatment is cost effective, recommended, the value of a
67treatment, or in determining coverage, reimbursement, appropriate payment amounts, cost-
68sharing, or incentive policies or programs.