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H.46 1
Introduced by Representatives Donahue of Northfield, Noyes of Wolcott, and 2
Stone of Burlington 3
Referred to Committee on 4
Date: 5
Subject: Health; rare diseases; advisory council 6
Statement of purpose of bill as introduced: This bill proposes to establish the 7
Rare Disease Advisory Council. 8
An act relating to the Rare Disease Advisory Council 9
It is hereby enacted by the General Assembly of the State of Vermont: 10
Sec. 1. 18 V.S.A. chapter 19 is added to read: 11
CHAPTER 19. RARE DISEASES 12
§ 981. RARE DISEASE ADVISORY COUNCIL 13
(a) Creation. There is created the Rare Disease Advisory Council within 14
the Department of Health to provide guidance and recommendations to the 15
public, General Assembly, and other government agencies and departments, as 16
necessary, regarding the needs of individuals living with rare diseases in 17
Vermont. 18
(b) Membership. 19 BILL AS INTRODUCED H.46
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(1) The Advisory Council shall be composed of the following members, 1
with members potentially fulfilling multiple roles if the member meets 2
qualifications of more than one subdivision: 3
(A) the Commissioner of Health or designee; 4
(B) the Commissioner of Vermont Health Access or designee; 5
(C) the Commissioner of Financial Regulation or designee; 6
(D) the Director of the Office of Racial Equity or designee; 7
(E) two individuals living with a rare disease, one appointed by the 8
Speaker of the House and one appointed by the Senate Committee on 9
Committees; 10
(F) a representative of an academic research institution in the State 11
that receives grant funding for rare disease research, appointed by the Speaker 12
of the House; 13
(G) a caregiver of a person living with a rare disease, appointed by 14
the Senate Committee on Committees; 15
(H) a physician practicing in Vermont with experience treating a rare 16
disease, appointed by the Vermont Medical Society; 17
(I) a nurse practicing in Vermont with experience treating a rare 18
disease, appointed by the Vermont chapter of the American Nurses 19
Association; 20 BILL AS INTRODUCED H.46
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(J) a geneticist or genetic counselor, appointed by the Senate 1
Committee on Committees; 2
(K) a representative of health insurance companies serving 3
Vermonters, appointed jointly by Blue Cross Blue Shield of Vermont and 4
MVP Health Care; 5
(L) a representative of the biopharma industry doing business in 6
Vermont, appointed by the Speaker of the House; and 7
(M) a representative of a rare disease patient organization 8
operating in Vermont, appointed by the Governor. 9
(2) In event there is an even number of members on the 10
Advisory Council after the appointments are made pursuant to 11
subdivision (1) of this section, the Governor shall appoint one 12
additional member, provided the member aligns with the Advisory 13
Council’s purpose and prioritizes representation of patients and 14
caregivers. 15
(c) Powers and duties. The Advisory Council shall conduct the following 16
activities for the benefit of individuals impacted by rare diseases in Vermont: 17
(1) convene public hearings, make inquiries, and solicit comments from 18
the general public to assist the Advisory Council with an initial needs 19
assessment of individuals with a rare disease in Vermont and the needs of their 20
caregivers and providers; 21 BILL AS INTRODUCED H.46
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(2) provide testimony and comments on pending legislation and rules 1
that impact Vermont’s rare disease community before the General Assembly 2
and other State agencies; 3
(3) consult with experts on rare diseases to develop policy 4
recommendations that: 5
(A) improve patient access to and quality of services provided by rare 6
disease specialists; 7
(B) advance affordable and comprehensive health care coverage; 8
(C) provide relevant diagnostic services and improve programs such 9
as the State’s newborn screening program; and 10
(D) ensure timely treatment and other needed services; 11
(4) publish a list of existing, publicly accessible resources on research, 12
diagnosis, and treatment, including education resources for health care 13
providers, relating to rare diseases on the Advisory Council’s website; 14
(5) review the Department of Health’s January 2025 presentation 15
describing the public health impact of rare diseases in Vermont and the 16
Department’s role in addressing rare diseases statewide as required by 2024 17
Acts and Resolved No. 164, Sec. 2; and 18
(6) any other priorities identified by the Department of Health or a 19
majority of the Advisory Council. 20 BILL AS INTRODUCED H.46
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(d) Assistance. The Advisory Council shall have the administrative, 1
technical, and legal assistance of the Department of Health. 2
(e) Report. Annually, on or before December 15, the Advisory Council 3
shall submit a written report to the House Committees on Health Care and on 4
Human Services and to the Senate Committee on Health and Welfare with its 5
findings and any recommendations for legislative action, including: 6
(1) a description of the activities and progress of the Advisory Council 7
during the previous year; and 8
(2) an update on the status of the Advisory Council’s funding needs. 9
(f) Meetings. 10
(1) The Commissioner of Health or designee shall call the first meeting 11
of the Advisory Council. 12
(2) The Commissioner of Health or designee shall serve as the chair. 13
(3) During the first year of enactment, the Advisory Council shall meet 14
on at least a monthly basis and thereafter by the call of the Chair. Meetings 15
may be held in person or remotely on an electronic platform as determined by 16
the Chair. 17
(4) A majority of the membership shall constitute a quorum. 18
(5) The Advisory Council shall maintain a web page on the Department 19
of Health’s website containing notices of upcoming meetings, meeting 20
minutes, public comments, and previous annual reports. 21 BILL AS INTRODUCED H.46
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(g) Compensation and reimbursement. The members of the Advisory 1
Council not otherwise compensated for their participation shall be entitled to 2
per diem compensation and reimbursement of expenses as permitted under 3
32 V.S.A. § 1010 for not more than 12 meetings annually. These payments 4
shall be made from monies appropriated to the Department of Health. 5
Sec. 2. EFFECTIVE DATE 6
This act shall take effect on July 1, 2025. 7