Texas 2023 - 88th Regular

Texas Senate Bill SB1408 Compare Versions

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1	1	88R11093 MPF-F
2	2	By: Miles S.B. No. 1408
3	3
4	4
5	5	A BILL TO BE ENTITLED
6	6	AN ACT
7	7	relating to establishment of the Texas Rare Disease Advisory
8	8	Council.
9	9	BE IT ENACTED BY THE LEGISLATURE OF THE STATE OF TEXAS:
10	10	SECTION 1. Subtitle E, Title 2, Health and Safety Code, is
11	11	amended by adding Chapter 101A to read as follows:
12	12	CHAPTER 101A. TEXAS RARE DISEASE ADVISORY COUNCIL
13	13	Sec. 101A.001. DEFINITIONS. In this chapter:
14	14	(1) "Advisory council" means the Texas Rare Disease
15	15	Advisory Council established under this chapter.
16	16	(2) "Institution of higher education" means an
17	17	institution of higher education or a private or independent
18	18	institution of higher education, as those terms are defined by
19	19	Section 61.003, Education Code.
20	20	Sec. 101A.002. ESTABLISHMENT OF ADVISORY COUNCIL. (a) The
21	21	Texas Rare Disease Advisory Council is established to advise the
22	22	legislature, the governor, state agencies, and private entities
23	23	that provide services or care to individuals with rare diseases on
24	24	the needs of individuals with rare diseases in this state.
25	25	(b) The department shall designate an institution of higher
26	26	education in this state willing to provide administrative support
27	27	to the advisory council in discharging its duties under this
28	28	chapter.
29	29	Sec. 101A.003. ADVISORY COUNCIL MEMBERS. (a) The advisory
30	30	council is composed of the following members:
31	31	(1) one representative of the institution of higher
32	32	education providing administrative support under Section 101A.002;
33	33	(2) one representative of the department;
34	34	(3) one representative of the commission whose duties
35	35	involve the medical assistance program under Chapter 32, Human
36	36	Resources Code;
37	37	(4) one representative of the Texas Department of
38	38	Insurance;
39	39	(5) one geneticist licensed and practicing in this
40	40	state;
41	41	(6) one registered nurse or advanced practice
42	42	registered nurse licensed and practicing in this state with
43	43	experience treating rare diseases;
44	44	(7) one physician licensed and practicing in this
45	45	state with experience treating rare diseases;
46	46	(8) one hospital administrator, or the hospital
47	47	administrator's designee, of a hospital in this state that provides
48	48	care to persons diagnosed with a rare disease;
49	49	(9) at least two persons with a rare disease;
50	50	(10) at least one caregiver of a person with a rare
51	51	disease;
52	52	(11) one representative of a rare disease patient
53	53	organization that operates in this state;
54	54	(12) one pharmacist with experience dispensing drugs
55	55	used to treat rare diseases;
56	56	(13) one representative of the biopharmaceutical
57	57	industry;
58	58	(14) one representative of a health insurance company;
59	59	and
60	60	(15) one member of the scientific community who is
61	61	engaged in rare disease research, including a medical researcher
62	62	with experience conducting research on rare diseases.
63	63	(a-1) Notwithstanding Subsection (a) and Section 101A.005
64	64	and not later than December 1, 2023, the initial presiding officer
65	65	of the advisory council appointed under Section 101A.004(b-1) shall
66	66	appoint the initial members of the advisory council to staggered
67	67	terms with the terms of one-third of the members, or as near to
68	68	one-third as possible, expiring each year. An initial advisory
69	69	council member appointed under this subsection may serve a
70	70	two-year, three-year, or four-year term. This subsection expires
71	71	September 1, 2029.
72	72	(b) Except as otherwise provided by Subsection (c), an
73	73	individual must be a resident of this state to be eligible for
74	74	appointment as a member of the advisory council.
75	75	(c) The representative of the biopharmaceutical industry
76	76	appointed under Subsection (a)(13) may be a resident of any state.
77	77	(d) If a vacancy occurs on the advisory council, the members
78	78	of the advisory council shall fill the vacancy by a majority vote,
79	79	in a timely manner and in compliance with the requirements of this
80	80	section. The advisory council shall conduct the member appointment
81	81	process in a transparent manner to provide interested individuals
82	82	an opportunity to apply for membership on the advisory council.
83	83	Sec. 101A.004. PRESIDING OFFICER. (a) Members of the
84	84	advisory council shall select from among the advisory council's
85	85	members a presiding officer.
86	86	(b) A person who holds an elected or appointed state
87	87	governmental position or a state employee may not be appointed as
88	88	the presiding officer of the advisory council.
89	89	(b-1) Notwithstanding Subsection (a) or Section 101A.005
90	90	and not later than October 1, 2023, the governor, or the governor's
91	91	designee, shall appoint an initial presiding officer of the
92	92	advisory council to serve a three-year term. This subsection
93	93	expires September 1, 2027.
94	94	Sec. 101A.005. TERMS. (a) Members of the advisory council
95	95	serve staggered three-year terms, with the terms of one-third of
96	96	the members, or as near to one-third as possible, expiring each
97	97	year.
98	98	(b) The presiding officer of the advisory council serves a
99	99	two-year term.
100	100	Sec. 101A.006. DUTIES. The advisory council shall:
101	101	(1) consult with experts on rare diseases to develop
102	102	policy recommendations for improving patient access to:
103	103	(A) rare disease specialists;
104	104	(B) affordable and comprehensive health care
105	105	coverage;
106	106	(C) relevant diagnostic procedures for rare
107	107	diseases;
108	108	(D) timely and quality treatment for rare
109	109	diseases; and
110	110	(E) other needed services, as determined by the
111	111	advisory council;
112	112	(2) make recommendations to state agencies and
113	113	insurers that provide services to persons with a rare disease on the
114	114	impact on the provision of treatment and care for the person of
115	115	prior authorization requirements, cost-sharing requirements,
116	116	benefits tiering, or other utilization management procedures;
117	117	(3) make recommendations to improve coverage under the
118	118	state Medicaid program of drugs for rare disease patients,
119	119	including engagement with the Drug Utilization Review Board, to
120	120	improve health benefit plan coverage of diagnostic procedures, and
121	121	to facilitate access to necessary health care providers with
122	122	expertise in the treatment of rare diseases;
123	123	(4) identify best practices to reduce health
124	124	disparities and achieve health equity in the research, diagnosis,
125	125	and treatment of rare diseases in this state; and
126	126	(5) identify best practices to ensure continuity of
127	127	care for rare disease patients transitioning from pediatric to
128	128	adult care.
129	129	Sec. 101A.007. BIENNIAL REPORT. (a) Not later than
130	130	September 1 of each even-numbered year, the advisory council shall
131	131	prepare and submit a report to the governor, department, and
132	132	standing committees of the senate and house of representatives with
133	133	primary jurisdiction over health care and appropriations a report
134	134	on the advisory council's activities, funding, and legislative
135	135	recommendations.
136	136	(b) Before finalizing and submitting the report under
137	137	Subsection (a), a draft of the report must be made available for
138	138	public comment and discussion at an open public meeting.
139	139	Sec. 101A.008. FUNDING. The advisory council may solicit
140	140	and accept gifts, grants, and donations to establish and operate
141	141	the advisory council.
142	142	Sec. 101A.009. COUNCIL MEETINGS. (a) The advisory council
143	143	shall meet at least once each quarter.
144	144	(b) A meeting conducted under this section may be in person
145	145	or by video conference call, as determined by the presiding
146	146	officer.
147	147	(c) Not later than January 1, 2024, the advisory council
148	148	shall hold an initial meeting. During the 2024 calendar year, the
149	149	advisory council shall meet at least once per month. This
150	150	subsection expires September 1, 2025.
151	151	Sec. 101A.010. PUBLIC OUTREACH. The advisory council
152	152	shall:
153	153	(1) provide opportunities to inform the public about
154	154	the advisory council's work and for the public to provide comments
155	155	on that work; and
156	156	(2) create and maintain a public Internet website to:
157	157	(A) provide public access to meeting minutes;
158	158	(B) provide notice of upcoming advisory council
159	159	meetings; and
160	160	(C) allow for the submission of public comments.
161	161	SECTION 2. (a) Not later than October 1, 2023, the governor
162	162	or the governor's designee shall appoint the initial presiding
163	163	officer to the Texas Rare Disease Advisory Council as required by
164	164	Section 101A.004, Health and Safety Code, as added by this Act.
165	165	(b) Not later than December 1, 2023, the initial presiding
166	166	officer of the Texas Rare Disease Advisory Council shall appoint
167	167	the initial members of the advisory council as required by Section
168	168	101A.003, Health and Safety Code, as added by this Act.
169	169	SECTION 3. This Act takes effect September 1, 2023.