Rhode Island 2025 Regular Session

Rhode Island House Bill H5023 Compare Versions

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

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5	5	2025 -- H 5023
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7	7	LC000507
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9	9	S T A T E O F R H O D E I S L A N D
10	10	IN GENERAL ASSEMBLY
11	11	JANUARY SESSION, A.D. 2025
12	12	____________
13	13
14	14	A N A C T
15	15	RELATING TO HEALTH AND SAFETY -- RARE DISEASE ADVISORY COUNCIL
16	16	Introduced By: Representatives Kennedy, Spears, Diaz, Donovan, Cotter, Carson,
17	17	Azzinaro, Kazarian, Edwards, and Serpa
18	18	Date Introduced: January 10, 2025
19	19	Referred To: House Health & Human Services
20	20
21	21
22	22	It is enacted by the General Assembly as follows:
23	23	SECTION 1. Legislative findings. 1
24	24	The general assembly hereby finds and declares: 2
25	25	(1) A rare disease, sometimes called an orphan disease, is defined as a disease that affects 3
26	26	fewer than 200,000 people in the United States. 4
27	27	(2) There are more than 7,000 known rare diseases affecting approximately 25-30 million 5
28	28	Americans, more than half of which are children. 6
29	29	(3) More than 90% of rare diseases do not have a Food and Drug Administration (FDA) 7
30	30	approved treatment. 8
31	31	(4) While the exact cause for many rare diseases remains unknown, many rare diseases are 9
32	32	genetic in origin and can be linked to mutations in a single gene or in multiple genes, which can be 10
33	33	passed down from generation to generation. 11
34	34	(5) People with rare diseases face many challenges, including delays in obtaining an 12
35	35	accurate diagnosis, finding a health care provider with expertise in their condition, and a lack of 13
36	36	affordable access to therapies and medication used to treat rare diseases. 14
37	37	(6) A state-based advisory council composed of qualified professionals and persons living 15
38	38	with rare diseases and their caregivers could educate medical professionals, government agencies, 16
39	39	legislators, and the public about rare diseases as an important public health issue and encourage 17
40	40	research into the development of new ways to diagnose and treat rare diseases. 18
41	41	SECTION 2. Title 23 of the General Laws entitled "HEALTH AND SAFETY" is hereby 19
42	42
43	43
44	44	LC000507 - Page 2 of 6
45	45	amended by adding thereto the following chapter: 1
46	46	CHAPTER 87.1 2
47	47	RARE DISEASE ADVISORY COUNCIL 3
48	48	23-87.1-1. Short title. 4
49	49	This chapter shall be known and may be cited as the "Rare Disease Advisory Council." 5
50	50	23-87.1-2. Establishment. 6
51	51	(a) There is established in the department of health the office of rare disease advisory 7
52	52	council. 8
53	53	(b) The purpose of the council is to provide guidance and recommendations to educate the 9
54	54	public, legislature, as well as other government agencies, on the needs of individuals with rare 10
55	55	diseases living in Rhode Island. 11
56	56	(c) The council shall conduct the following activities to benefit those impacted by rare 12
57	57	diseases in Rhode Island. The duties of the council shall include: 13
58	58	(1) Convene public hearings, make inquiries, and solicit comments from the general public 14
59	59	in Rhode Island to assist the council with a first-year landscape or survey of the needs of rare 15
60	60	disease patients, caregivers, and providers in the state. 16
61	61	(2) Provide testimony and comments on pending legislation and regulations before the 17
62	62	legislature and other state agencies that impact Rhode Island's rare disease community. 18
63	63	(3) Consult with experts on rare diseases to develop policy recommendations to improve 19
64	64	patient access to, and quality of, rare disease specialists, affordable and comprehensive health care 20
65	65	coverage, relevant diagnostics, timely treatment and other needed services. 21
66	66	(4) Research and make recommendations to state agencies and insurers that provide 22
67	67	services to persons with a rare disease on the impact of prior authorization, cost-sharing, tiering, or 23
68	68	other utilization management procedures on the provision of treatment and care for patients. 24
69	69	(5) Establish best practices and protocols to include in-state planning related to natural 25
70	70	disasters, public health emergencies or other emergency declarations to enable continuity of care 26
71	71	for rare disease patients and ensure safeguards against discrimination for rare disease patients are 27
72	72	in place. 28
73	73	(6) Evaluate and make recommendations to implement improvements to newborn infant 29
74	74	screening programs. 30
75	75	(7) Evaluate and make recommendations to improve Medicaid coverage of drugs for rare 31
76	76	disease patients, including engagement with the drug utilization review board, to improve coverage 32
77	77	of diagnostics, and facilitate access to necessary healthcare providers with expertise in the treatment 33
78	78	of rare diseases. 34
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81	81	LC000507 - Page 3 of 6
82	82	(8) Publish a list of existing, publicly accessible resources on research, diagnosis, 1
83	83	treatment, and education relating to the rare diseases on the council's website. For purposes of this 2
84	84	chapter, "rare disease" or "orphan disease" means a disease that affects fewer than two hundred 3
85	85	thousand (200,000) people in the United States. 4
86	86	(9) Identify areas of unmet need for research and opportunities for collaboration across 5
87	87	stakeholders that can inform future studies and reports by the council. 6
88	88	(10) Identify and distribute educational resources for health care providers to foster 7
89	89	recognition and optimize treatment of rare diseases. 8
90	90	(11) Research and identify best practices to reduce health disparities and achieve health 9
91	91	equity in the research, diagnosis and treatment of rare diseases. 10
92	92	(12) Research and identify best practices to ensure continuity of care for rare disease 11
93	93	patients transitioning from child/youth services to adult care. 12
94	94	23-87.1-3. Membership of council. 13
95	95	(a) All members of the council shall be full-time residents of Rhode Island and membership 14
96	96	shall include a diverse set of stakeholders. 15
97	97	(b) The governor shall appoint all members and shall designate a chair of the council within 16
98	98	thirty (30) days of enactment. The chair shall not hold any position within the government of Rhode 17
99	99	Island and shall serve for a term of three (3) years. 18
100	100	(c) The governor shall appoint the following members: 19
101	101	(1) One representative from academic research institutions in the state that receives any 20
102	102	grant funding for rare disease research; 21
103	103	(2) One representative from the Rhode Island department of health's office of minority 22
104	104	health; 23
105	105	(3) One representative from the Rhode Island Medicaid agency; 24
106	106	(4) One representative from the Rhode Island department of business regulation insurance 25
107	107	division; 26
108	108	(5) One registered nurse or advanced practice registered nurse licensed and practicing in 27
109	109	Rhode Island with experience treating rare diseases; 28
110	110	(6) One physician practicing in Rhode Island with experience treating rare diseases; 29
111	111	(7) One hospital administrator, or designee, from a hospital in Rhode Island that provides 30
112	112	care to persons diagnosed with a rare disease; 31
113	113	(8) At least two (2) patients who have a rare disease; 32
114	114	(9) At least one caregiver of a person with a rare disease; 33
115	115	(10) One representative of a rare disease patient organization that operates in Rhode Island; 34
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118	118	LC000507 - Page 4 of 6
119	119	(11) A pharmacist with experience dispensing drugs used to treat rare diseases; 1
120	120	(12) A representative of the biopharma industry; 2
121	121	(13) A representative of a health plan company; and 3
122	122	(14) A member of the scientific community who is engaged in rare disease research, 4
123	123	including, but not limited to, a medical researcher with experience conducting research on rare 5
124	124	diseases. 6
125	125	23-87.1-4. Terms and vacancies for council members. 7
126	126	(a) Term of members. Council members shall serve no longer than three (3) years, except 8
127	127	that, to facilitate a staggered rotation of members to retain continuity and knowledge transfer, 9
128	128	during the initial five (5) years after the establishment of the council, members may serve up to a 10
129	129	four (4) year term. 11
130	130	(b) Vacancy. If a vacancy occurs, the vacancy shall be filled in a like manner as required 12
131	131	pursuant to this section. 13
132	132	23-87.1-5. Reporting requirements. 14
133	133	(a) The council shall submit a report to the governor, the speaker of the house and the 15
134	134	president of the senate, and the chairs of the house and senate health and finance committees within 16
135	135	one year of enactment of the council and annually thereafter. Prior to submission, a draft of the 17
136	136	annual report shall be made available for public comment and discussed at an open public meeting. 18
137	137	(b) Annual reports shall: 19
138	138	(1) Describe the activities and progress of the council under this section; 20
139	139	(2) Provide an update on the status of funding of the council; and 21
140	140	(3) Provide recommendations to the governor and legislature on ways to address the needs 22
141	141	of people living with rare diseases in the state. 23
142	142	23-87.1-6. Funding for council. 24
143	143	(a) The council members may solicit funds on behalf of the council. 25
144	144	(b) The council shall establish a restricted receipt account and all funds designated or raised 26
145	145	by or for the advisory council shall be placed in the restricted receipt account to support the 27
146	146	activities of the council necessary to carry out the provisions of this chapter. 28
147	147	(c) The council shall report funding sources in the annual reports outlined in § 23-87.1-29
148	148	5(b). 30
149	149	23-87.1-7. Meeting requirements. 31
150	150	(a) Frequency. 32
151	151	(1) The initial meeting of the council shall occur within the first ninety (90) days after 33
152	152	enactment. 34
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155	155	LC000507 - Page 5 of 6
156	156	(2) During the first twelve (12) months after the initial meeting, the council shall meet each 1
157	157	month. 2
158	158	(3) Thereafter, the council shall meet once per quarter in person or via online meeting 3
159	159	platform as determined by the chair. 4
160	160	(b) Notice. 5
161	161	(1) The council shall, in compliance with chapter 46 of title 42 ("open meetings"): 6
162	162	(i) Provide opportunities for the public to hear updates and provide input into their work; 7
163	163	and 8
164	164	(ii) Create and maintain a public website where meeting minutes, notices of upcoming 9
165	165	meetings, and public comments can be submitted. 10
166	166	SECTION 3. This act shall take effect upon passage. 11
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168	168	LC000507
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171	171
172	172	LC000507 - Page 6 of 6
173	173	EXPLANATION
174	174	BY THE LEGISLATIVE COUNCIL
175	175	OF
176	176	A N A C T
177	177	RELATING TO HEALTH AND SAFETY -- RARE DISEASE ADVISORY COUNC IL
178	178	***
179	179	This act would establish a rare disease advisory council within the department of health. 1
180	180	The council would provide guidance and recommendations to educate health care providers and 2
181	181	the citizens of the state. 3
182	182	This act would take effect upon passage. 4
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184	184	LC000507
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