Bill Summary – FastDemocracy

BILL AS INTRODUCED                                                        H.573
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                                      H.573
 Introduced by Representative Stone of Burlington
 Referred to Committee on
 Date:
 Subject: Health; rare diseases; advisory council
 Statement of purpose of bill as introduced: This bill proposes to establish the
 Rare Disease Advisory Council.
    An act relating to the Rare Disease Advisory Council
 It is hereby enacted by the General Assembly of the State of Vermont:
 Sec. 1. 18 V.S.A. chapter 19 is added to read:
                        CHAPTER 19. RARE DISEASES
 § 981. RARE DISEASE ADVISORY COUNCIL
    (a) Creation. There is created the Rare Disease Advisory Council within
 the Department of Health to provide guidance and recommendations to the
 public, General Assembly, and other government agencies and departments, as
 necessary, regarding the needs of individuals living with rare diseases in
 Vermont.
    (b) Membership. The Advisory Council shall be composed of the
 following members:
         (1) the Commissioner of Health or designee;
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     BILL AS INTRODUCED                                                          H.573
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         (2) the Commissioner of Vermont Health Access or designee;
         (3) the Commissioner of Financial Regulation or designee;
         (4) the Director of the Office of Racial Equity or designee;
         (5) two individuals living with a rare disease, one appointed by the
 Speaker of the House and one appointed by the Senate Committee on
 Committees;
         (6) a representative of an academic research institution in the State that
 receives grant funding for rare disease research, appointed by the Speaker of
 the House;
         (7) a caregiver of a person living with a rare disease, appointed by the
 Senate Committee on Committees;
         (8) a physician practicing in Vermont with experience treating a rare
 disease, appointed by the Vermont Medical Society;
         (9) a nurse practicing in Vermont with experience treating a rare
 disease, appointed by the Vermont chapter of the American Nurses
 Association;
         (10) a representative of health insurance companies serving Vermonters,
 appointed jointly by Blue Cross Blue Shield of Vermont and MVP Health
 Care;
         (11) a representative of the biopharma industry doing business in
 Vermont, appointed by the Speaker of the House;
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       (12) a member of the scientific community in Vermont who is engaged
 in rare disease research, such as a medical researcher with experience
 conducting research on rare diseases, appointed by the Governor; and
       (13) a representative of a rare disease patient organization
 operating in Vermont, appointed by the Governor.
    (c) Powers and duties. The Advisory Council shall conduct the following
 activities for the benefit of individuals impacted by rare diseases in Vermont:
       (1) convene public hearings, make inquiries, and solicit comments from
 the general public to assist the Advisory Council with an initial survey of the
 needs of individuals with a rare disease in Vermont and the needs of their
 caregivers and providers;
       (2) provide testimony and comments on pending legislation and rules
 that impact Vermont’s rare disease community before the General Assembly
 and other State agencies;
       (3) consult with experts on rare diseases to develop policy
 recommendations that:
          (A) improve patient access to and quality of services provided by rare
 disease specialists;
          (B) advance affordable and comprehensive health care coverage;
          (C) provide relevant diagnostic services; and VT LEG #372740 v.1
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          (D) ensure timely treatment and other needed services, including to
 the State’s newborn screening program;
       (4) research and make recommendations to State agencies and health
 insurers that provide services to persons with a rare disease regarding the
 impact of prior authorization, cost-sharing, tiering, or other utilization
 management procedures on the provision of treatment and care to individuals
 with rare diseases;
       (5) evaluate and make recommendations to implement improvements to
 Vermont’s newborn screening programs;
       (6) evaluate and make recommendations to improve Medicaid coverage
 for drugs used by individuals with rare diseases, including engagement with
 the Drug Utilization Review Board to improve coverage of diagnostic services
 and to facilitate access to necessary health care providers with expertise in the
 treatment of rare diseases;
       (7) publish a list of existing, publicly accessible resources on research,
 diagnosis, treatment, and education relating to rare diseases on the Advisory
 Council’s website;
       (8) identify and distribute educational resources for health care
 providers to foster recognition and optimized treatment of rare diseases in
 Vermont; and VT LEG #372740 v.1
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       (9) research and identify best practices to reduce health disparities and
 achieve health equity in the research, diagnosis, and treatment of rare diseases
 in Vermont.
    (d) Assistance. The Advisory Council shall have the administrative,
 technical, and legal assistance of the Department of Health.
    (e) Report. Annually, on or before December 15, the Advisory Council
 shall submit a written report to the House Committees on Health Care and on
 Human Services and to the Senate Committee on Health and Welfare with its
 findings and any recommendations for legislative action, including:
       (1) a description of the activities and progress of the Advisory Council
 during the previous year; and
       (2) an update on the status of the Advisory Council’s funding needs.
    (f) Meetings.
       (1) The Commissioner of Health or designee shall call the first meeting
 of the Advisory Council.
       (2) The Commissioner of Health or designee shall serve as the chair.
       (3) During the first year of enactment, the Advisory Council shall meet
 on at least a monthly basis and thereafter by the call of the Chair. Meetings
 may be held in person or remotely on an electronic platform as determined by
 the Chair.
       (4) A majority of the membership shall constitute a quorum.
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     BILL AS INTRODUCED                                                       H.573
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       (5) The Advisory Council shall maintain a webpage on the Department
 of Health’s website containing notices of upcoming meetings, meeting
 minutes, public comments, and previous annual reports.
    (g) Compensation and reimbursement. The members of the Advisory
 Council not otherwise compensated for their participation shall be entitled to
 per diem compensation and reimbursement of expenses as permitted under
 32 V.S.A. § 1010 for not more than 12 meetings annually. These payments
 shall be made from monies appropriated to the Department of Health.
 Sec. 2. EFFECTIVE DATE
    This act shall take effect on July 1, 2024.
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