Vermont 2025-2026 Regular Session

Vermont House Bill H0046 Compare Versions

Only one version of the bill is available at this time.

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1	1	BILL AS INTRODUCED H.46
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6	6	H.46 1
7	7	Introduced by Representatives Donahue of Northfield, Noyes of Wolcott, and 2
8	8	Stone of Burlington 3
9	9	Referred to Committee on 4
10	10	Date: 5
11	11	Subject: Health; rare diseases; advisory council 6
12	12	Statement of purpose of bill as introduced: This bill proposes to establish the 7
13	13	Rare Disease Advisory Council. 8
14	14	An act relating to the Rare Disease Advisory Council 9
15	15	It is hereby enacted by the General Assembly of the State of Vermont: 10
16	16	Sec. 1. 18 V.S.A. chapter 19 is added to read: 11
17	17	CHAPTER 19. RARE DISEASES 12
18	18	§ 981. RARE DISEASE ADVISORY COUNCIL 13
19	19	(a) Creation. There is created the Rare Disease Advisory Council within 14
20	20	the Department of Health to provide guidance and recommendations to the 15
21	21	public, General Assembly, and other government agencies and departments, as 16
22	22	necessary, regarding the needs of individuals living with rare diseases in 17
23	23	Vermont. 18
24	24	(b) Membership. 19 BILL AS INTRODUCED H.46
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29	29	(1) The Advisory Council shall be composed of the following members, 1
30	30	with members potentially fulfilling multiple roles if the member meets 2
31	31	qualifications of more than one subdivision: 3
32	32	(A) the Commissioner of Health or designee; 4
33	33	(B) the Commissioner of Vermont Health Access or designee; 5
34	34	(C) the Commissioner of Financial Regulation or designee; 6
35	35	(D) the Director of the Office of Racial Equity or designee; 7
36	36	(E) two individuals living with a rare disease, one appointed by the 8
37	37	Speaker of the House and one appointed by the Senate Committee on 9
38	38	Committees; 10
39	39	(F) a representative of an academic research institution in the State 11
40	40	that receives grant funding for rare disease research, appointed by the Speaker 12
41	41	of the House; 13
42	42	(G) a caregiver of a person living with a rare disease, appointed by 14
43	43	the Senate Committee on Committees; 15
44	44	(H) a physician practicing in Vermont with experience treating a rare 16
45	45	disease, appointed by the Vermont Medical Society; 17
46	46	(I) a nurse practicing in Vermont with experience treating a rare 18
47	47	disease, appointed by the Vermont chapter of the American Nurses 19
48	48	Association; 20 BILL AS INTRODUCED H.46
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53	53	(J) a geneticist or genetic counselor, appointed by the Senate 1
54	54	Committee on Committees; 2
55	55	(K) a representative of health insurance companies serving 3
56	56	Vermonters, appointed jointly by Blue Cross Blue Shield of Vermont and 4
57	57	MVP Health Care; 5
58	58	(L) a representative of the biopharma industry doing business in 6
59	59	Vermont, appointed by the Speaker of the House; and 7
60	60	(M) a representative of a rare disease patient organization 8
61	61	operating in Vermont, appointed by the Governor. 9
62	62	(2) In event there is an even number of members on the 10
63	63	Advisory Council after the appointments are made pursuant to 11
64	64	subdivision (1) of this section, the Governor shall appoint one 12
65	65	additional member, provided the member aligns with the Advisory 13
66	66	Council’s purpose and prioritizes representation of patients and 14
67	67	caregivers. 15
68	68	(c) Powers and duties. The Advisory Council shall conduct the following 16
69	69	activities for the benefit of individuals impacted by rare diseases in Vermont: 17
70	70	(1) convene public hearings, make inquiries, and solicit comments from 18
71	71	the general public to assist the Advisory Council with an initial needs 19
72	72	assessment of individuals with a rare disease in Vermont and the needs of their 20
73	73	caregivers and providers; 21 BILL AS INTRODUCED H.46
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78	78	(2) provide testimony and comments on pending legislation and rules 1
79	79	that impact Vermont’s rare disease community before the General Assembly 2
80	80	and other State agencies; 3
81	81	(3) consult with experts on rare diseases to develop policy 4
82	82	recommendations that: 5
83	83	(A) improve patient access to and quality of services provided by rare 6
84	84	disease specialists; 7
85	85	(B) advance affordable and comprehensive health care coverage; 8
86	86	(C) provide relevant diagnostic services and improve programs such 9
87	87	as the State’s newborn screening program; and 10
88	88	(D) ensure timely treatment and other needed services; 11
89	89	(4) publish a list of existing, publicly accessible resources on research, 12
90	90	diagnosis, and treatment, including education resources for health care 13
91	91	providers, relating to rare diseases on the Advisory Council’s website; 14
92	92	(5) review the Department of Health’s January 2025 presentation 15
93	93	describing the public health impact of rare diseases in Vermont and the 16
94	94	Department’s role in addressing rare diseases statewide as required by 2024 17
95	95	Acts and Resolved No. 164, Sec. 2; and 18
96	96	(6) any other priorities identified by the Department of Health or a 19
97	97	majority of the Advisory Council. 20 BILL AS INTRODUCED H.46
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102	102	(d) Assistance. The Advisory Council shall have the administrative, 1
103	103	technical, and legal assistance of the Department of Health. 2
104	104	(e) Report. Annually, on or before December 15, the Advisory Council 3
105	105	shall submit a written report to the House Committees on Health Care and on 4
106	106	Human Services and to the Senate Committee on Health and Welfare with its 5
107	107	findings and any recommendations for legislative action, including: 6
108	108	(1) a description of the activities and progress of the Advisory Council 7
109	109	during the previous year; and 8
110	110	(2) an update on the status of the Advisory Council’s funding needs. 9
111	111	(f) Meetings. 10
112	112	(1) The Commissioner of Health or designee shall call the first meeting 11
113	113	of the Advisory Council. 12
114	114	(2) The Commissioner of Health or designee shall serve as the chair. 13
115	115	(3) During the first year of enactment, the Advisory Council shall meet 14
116	116	on at least a monthly basis and thereafter by the call of the Chair. Meetings 15
117	117	may be held in person or remotely on an electronic platform as determined by 16
118	118	the Chair. 17
119	119	(4) A majority of the membership shall constitute a quorum. 18
120	120	(5) The Advisory Council shall maintain a web page on the Department 19
121	121	of Health’s website containing notices of upcoming meetings, meeting 20
122	122	minutes, public comments, and previous annual reports. 21 BILL AS INTRODUCED H.46
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127	127	(g) Compensation and reimbursement. The members of the Advisory 1
128	128	Council not otherwise compensated for their participation shall be entitled to 2
129	129	per diem compensation and reimbursement of expenses as permitted under 3
130	130	32 V.S.A. § 1010 for not more than 12 meetings annually. These payments 4
131	131	shall be made from monies appropriated to the Department of Health. 5
132	132	Sec. 2. EFFECTIVE DATE 6
133	133	This act shall take effect on July 1, 2025. 7