Arkansas 2025 Regular Session

Arkansas House Bill HB1532 Compare Versions

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

Old	New	Differences
1	1	Stricken language would be deleted from and underlined language would be added to present law.
2	2	JMB357 02/19/2025 10:15:04 AM JMB357
3	3	State of Arkansas 1
4	4	95th General Assembly A Bill 2
5	5	Regular Session, 2025 HOUSE BILL 1532 3
6	6	4
7	7	By: Representative L. Johnson 5
8	8	6
9	9	7
10	10	For An Act To Be Entitled 8
11	11	AN ACT TO CREATE THE ARKANSAS RARE DISEASE ADVISORY 9
12	12	COUNCIL; AND FOR OTHER PURPOSES. 10
13	13	11
14	14	12
15	15	Subtitle 13
16	16	TO CREATE THE ARKANSAS RARE DISEASE 14
17	17	ADVISORY COUNCIL. 15
18	18	16
19	19	BE IT ENACTED BY THE GENERAL ASSEMBLY OF THE STATE OF ARKANSAS: 17
20	20	18
21	21	SECTION 1. Arkansas Code Title 20, Chapter 8, is amended to add an 19
22	22	additional subchapter to read as follows: 20
23	23	Subchapter 12 — Arkansas Rare Disease Advisory Council 21
24	24	22
25	25	20-8-1201. Legislative findings. 23
26	26	The General Assembly finds that: 24
27	27	(1) A rare disease, sometimes called an orphan disease, is 25
28	28	defined as a disease that affects fewer than two hundred thousand (200,000) 26
29	29	people in the United States; 27
30	30	(2) There are more than ten thousand (10,000) known rare 28
31	31	diseases affecting more than thirty million (30,000,000) Americans with more 29
32	32	than half of this number being children; 30
33	33	(3) Approximately ninety -five percent (95%) of rare diseases do 31
34	34	not have a United States Food and Drug Administration approved treatment; 32
35	35	(4) While the exact cause for many rare diseases remains 33
36	36	unknown, many rare diseases are genetic in origin and can be linked to 34
37	37	mutations in a single gene or in multiple genes that can be passed down from 35
38	38	generation to generation; 36 HB1532
39	39
40	40	2 02/19/2025 10:15:04 AM JMB357
41	41	(5) People with rare diseases face many obstacles, including 1
42	42	delays in obtaining an accurate diagnosis, finding a healthcare provider with 2
43	43	expertise in their condition, and a lack of affordable access to therapies 3
44	44	and medication used to treat rare diseases that may result in significant 4
45	45	physical, mental, and financial challenges; and 5
46	46	(6) A state-based advisory council composed of qualified 6
47	47	professionals and persons living with rare diseases and their caregivers 7
48	48	could educate or advise medical professionals, government agencies, 8
49	49	legislators, and the public about rare diseases as an important public health 9
50	50	issue to encourage research or support the development of new and better 10
51	51	policies to diagnose and treat rare diseases. 11
52	52	12
53	53	20-8-1202. Arkansas Rare Disease Advisory Council — Creation — 13
54	54	Membership. 14
55	55	(a) There is created the Arkansas Rare Disease Advisory Council within 15
56	56	the Department of Health, to consist of the following eight (8) members: 16
57	57	(1) A representative from an academic research institution in 17
58	58	the state that receives grant funding for rare disease research; 18
59	59	(2) A representative from the Department of Human Services who 19
60	60	is knowledgeable about the Arkansas Medicaid Program; 20
61	61	(3) A geneticist or genetic counselor, appointed by the 21
62	62	Secretary of the Department of Health; 22
63	63	(4) At least two (2) patients who have a rare disease, appointed 23
64	64	by the secretary; 24
65	65	(5) At least one (1) caregiver of a person with a rare disease, 25
66	66	appointed by the secretary; 26
67	67	(6) A person who is a member of the scientific community, a 27
68	68	member of the biopharmaceutical industry, or a pharmacist who has experience 28
69	69	with or is engaged in rare disease research, including without limitation a 29
70	70	medical researcher with experience conducting research on rare diseases, 30
71	71	appointed by the secretary; and 31
72	72	(7) A mental health provider, registered nurse, advanced 32
73	73	practice registered nurse, or physician with experience treating patients who 33
74	74	have rare diseases in this state, appointed by the secretary. 34
75	75	(b)(1) All members of the advisory council shall be full -time 35
76	76	residents of this state. 36 HB1532
77	77
78	78	3 02/19/2025 10:15:04 AM JMB357
79	79	(2) The membership of the council shall include a diverse set of 1
80	80	stakeholders representative of the geographic and population diversity of the 2
81	81	state. 3
82	82	(c)(1) The secretary shall appoint the Chair of the Arkansas Rare 4
83	83	Disease Advisory Council for an initial term of three (3) years. 5
84	84	(2) The chair shall not hold a position within the state 6
85	85	government. 7
86	86	(3) At the end of the initial three (3) year term, and every two 8
87	87	(2) years thereafter, the members of the council shall appoint, by a majority 9
88	88	vote, a new chair. 10
89	89	(d)(1) Members shall serve no longer than three (3) years. 11
90	90	(2) However, during the initial five (5) years after the 12
91	91	establishment of the council, members may serve up to four (4) years. 13
92	92	(e) If a vacancy occurs, the secretary shall fill the vacancy in a 14
93	93	timely manner and based on the requirements under subsection (a) of this 15
94	94	section. 16
95	95	(f)(1) The initial meeting of the council shall occur within the first 17
96	96	ninety (90) days after the effective date of this section. 18
97	97	(2) During the first year after the effective date of this 19
98	98	section, the council shall meet no less than one (1) time per month for a 20
99	99	time period determined by the chair either in person or via an online meeting 21
100	100	platform. 22
101	101	(3) After the first year after the effective date of this 23
102	102	section, the council shall meet no less than one (1) time per quarter either 24
103	103	in person or via an online meeting platform as determined by the chair. 25
104	104	26
105	105	20-8-1203. Powers and duties. 27
106	106	The Arkansas Rare Disease Advisory Council shall: 28
107	107	(1) Provide guidance and recommendations to educate the public, 29
108	108	the General Assembly, and other government agencies and departments on the 30
109	109	needs of individuals with rare diseases living in this state; 31
110	110	(2) Convene public hearings, make inquiries, and solicit 32
111	111	comments from the general public in this state to assist the Arkansas Rare 33
112	112	Disease Advisory Council with a first -year landscape or survey of the needs 34
113	113	of rare disease patients, caregivers, and providers in the state; 35
114	114	(3) Provide testimony and comments on pending legislation and 36 HB1532
115	115
116	116	4 02/19/2025 10:15:04 AM JMB357
117	117	rules before the General Assembly, or the Legislative Council when not in a 1
118	118	legislative session, and other state agencies that impact the rare disease 2
119	119	community in this state; 3
120	120	(4) Consult with experts on rare diseases to develop policy 4
121	121	recommendations to improve patient access to, and the quality of, rare 5
122	122	disease specialists, affordable and comprehensive healthcare coverage, 6
123	123	relevant diagnostics, timely treatment, and other needed services; 7
124	124	(5) Research and make recommendations to state agencies and 8
125	125	insurers that provide services to persons with a rare disease on the impact 9
126	126	of orphan drug pricing, prior authorization, cost -sharing, or other barriers 10
127	127	to the provision of treatment and care for patients; 11
128	128	(6) Establish best practices and protocols to include in state 12
129	129	planning related to natural disasters, public health emergencies, or other 13
130	130	emergency declarations to enable continuity of care for rare disease patients 14
131	131	and ensure safeguards against discrimination for rare disease patients are in 15
132	132	place; 16
133	133	(7) Evaluate and make recommendations to improve the Arkansas 17
134	134	Medicaid Program and state -regulated private health insurance coverage of 18
135	135	drugs for rare disease patients to improve coverage of diagnostics and 19
136	136	facilitate access to necessary healthcare providers with expertise in the 20
137	137	treatment of rare diseases; 21
138	138	(8) Publish a list of existing, publicly accessible resources on 22
139	139	research, diagnosis, treatment, and education relating to the rare diseases 23
140	140	on the website of the Department of Health; 24
141	141	(9) Identify areas of unmet need for research and opportunities 25
142	142	for collaboration across stakeholders and other state rare disease advisory 26
143	143	councils that can inform future studies and work done by the Arkansas Rare 27
144	144	Disease Advisory Council; 28
145	145	(10) Identify and distribute educational resources for 29
146	146	healthcare providers to foster recognition and optimize treatment of rare 30
147	147	diseases in this state; 31
148	148	(11) Research and identify best practices to reduce health 32
149	149	disparities and achieve health equity in the research, diagnosis, and 33
150	150	treatment of rare diseases in this state; and 34
151	151	(12) Provide opportunities for the public to hear updates and 35
152	152	provide input into the work of the Arkansas Rare Disease Advisory Council. 36 HB1532
153	153
154	154	5 02/19/2025 10:15:04 AM JMB357
155	155	1
156	156	20-8-1204. Reports. 2
157	157	(a)(1) The Arkansas Rare Disease Advisory Council shall submit a 3
158	158	report to the Governor and the Legislative Council within one (1) year of 4
159	159	enactment of the Arkansas Rare Disease Advisory Council and annually 5
160	160	thereafter. 6
161	161	(2) Before submission of the report under subdivision (a)(1) of 7
162	162	this section, a draft of the report shall be made available for public 8
163	163	comment and discussed at an open public meeting. 9
164	164	(b) The report under subsection (a) of this section shall: 10
165	165	(1) Describe the activities and progress of the Arkansas Rare 11
166	166	Disease Advisory Council; 12
167	167	(2) Provide an update on the status of funding of the Arkansas 13
168	168	Rare Disease Advisory Council, including without limitation the grants that 14
169	169	were sought out, accepted, or used, and the remaining balance of funds of the 15
170	170	Arkansas Rare Disease Advisory Council; and 16
171	171	(3) Provide recommendations to the Governor and the General 17
172	172	Assembly on ways to address the needs of people living with rare diseases in 18
173	173	this state. 19
174	174	20
175	175	20-8-1205. Funding. 21
176	176	(a) The members of the Arkansas Rare Disease Advisory Council may 22
177	177	solicit funds on behalf of the council. 23
178	178	(b) The council shall: 24
179	179	(1) Set up a method to securely hold and distribute funds to 25
180	180	support the functioning of the council; and 26
181	181	(2) Report funding sources in report required under § 20 -8-1203. 27
182	182	28
183	183	29
184	184	30
185	185	31
186	186	32
187	187	33
188	188	34
189	189	35
190	190	36