Texas 2019 - 86th Regular

Texas Senate Bill SB1641 Compare Versions

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

Old	New	Differences
1	1	86R13822 SCL-D
2	2	By: Miles S.B. No. 1641
3	3
4	4
5	5	A BILL TO BE ENTITLED
6	6	AN ACT
7	7	relating to the 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.0001. DEFINITION. In this chapter, "advisory
14	14	council" means the Texas Rare Disease Advisory Council established
15	15	under this chapter.
16	16	Sec. 101A.0002. ESTABLISHMENT. (a) The department shall
17	17	establish the Texas Rare Disease Advisory Council to advise the
18	18	legislature, governor, and state agencies and private entities that
19	19	provide services or care to individuals with rare diseases.
20	20	(b) The department shall designate a nonprofit organization
21	21	operating in this state and with experience in the field of rare
22	22	diseases to provide administrative support to the advisory council.
23	23	Sec. 101A.0003. INITIAL MEMBERS AND REPORT. (a) The
24	24	governor or the governor's designee shall appoint the initial chair
25	25	and vice chair of the advisory council.
26	26	(b) The chair and vice chair of the advisory council shall
27	27	jointly appoint the other initial members of the advisory council.
28	28	(c) On appointment of all initial advisory council members,
29	29	the advisory council shall develop and submit to the governor and
30	30	the legislature a written description of the intended mission of
31	31	the advisory council, including a list of any state agencies and
32	32	legislative committees that the advisory council intends to advise.
33	33	Sec. 101A.0004. TERMS; VACANCY. (a) Advisory council
34	34	members serve two-year terms.
35	35	(b) If a vacancy occurs on the advisory council, a person
36	36	shall be appointed to fill the vacancy for the unexpired term.
37	37	Sec. 101A.0005. MEMBERSHIP PROCEDURES. After initial
38	38	members are appointed under Section 101A.0003, the advisory council
39	39	shall determine the procedures for appointing members to the
40	40	advisory council provided that:
41	41	(1) the advisory council membership may not exceed 20
42	42	members;
43	43	(2) members appointed under this section must be
44	44	approved by a majority vote of the advisory council members;
45	45	(3) the advisory council may not modify a member's term
46	46	established under Section 101A.0004;
47	47	(4) members serve on the advisory council until
48	48	replaced; and
49	49	(5) a majority of advisory council members constitute
50	50	a quorum for purposes of conducting a meeting.
51	51	Sec. 101A.0006. DUTIES. The advisory council shall:
52	52	(1) advise the legislature, governor, and state
53	53	agencies and private entities that provide services or care to
54	54	individuals with rare diseases;
55	55	(2) coordinate with community-based organizations and
56	56	private entities in this state to ensure greater cooperation on
57	57	research, diagnosis, and treatment of rare diseases by:
58	58	(A) providing to the state agencies and private
59	59	entities the outcomes of the advisory council's research, best
60	60	practices, and policy recommendations; and
61	61	(B) using common research collection and
62	62	publication procedures;
63	63	(3) study and determine the most appropriate methods
64	64	for collecting information on rare diseases in this state and other
65	65	information the advisory council determines necessary and
66	66	appropriate to collect;
67	67	(4) study and identify priorities relating to the
68	68	quality, cost-effectiveness, and access to treatment and services
69	69	provided to individuals with rare diseases and develop related
70	70	policy recommendations;
71	71	(5) identify best practices for rare disease care
72	72	implemented by other state and federal agencies that may improve
73	73	rare disease care in this state;
74	74	(6) develop effective strategies to increase public
75	75	awareness of rare diseases in this state;
76	76	(7) ensure that the duties of the advisory council are
77	77	performed in a manner compatible with similar research conducted by
78	78	state and federal agencies; and
79	79	(8) develop a list of existing, publicly accessible
80	80	resources on research, diagnosis, treatment, and education
81	81	relating to rare diseases, in collaboration with medical schools,
82	82	public health schools, and hospitals in this state.
83	83	Sec. 101A.0007. REPORT. (a) The advisory council shall
84	84	prepare and submit a biennial report on the advisory council's
85	85	activities, findings, and recommendations to the governor,
86	86	department, and the standing committees of the senate and house of
87	87	representatives with primary jurisdiction over rare diseases.
88	88	(b) Not later than the 90th day after the date the report
89	89	described by Subsection (a) is received, the governor and
90	90	department shall provide a written response to the advisory council
91	91	on the governor's or department's efforts to improve state policies
92	92	on the identification, treatment, and care of individuals with rare
93	93	diseases.
94	94	(c) Not later than the 120th day after the date the report
95	95	described by Subsection (a) is received, the appropriate
96	96	legislative committees shall convene a hearing on the
97	97	identification of rare diseases and the treatment and care provided
98	98	to individuals with rare diseases.
99	99	Sec. 101A.0008. FUNDING. The advisory council may solicit
100	100	and accept gifts, grants, and donations to establish and operate
101	101	the advisory council.
102	102	Sec. 101A.0009. EXPIRATION; DONATION OF UNEXPENDED MONEY.
103	103	(a) This chapter expires and the advisory council is abolished
104	104	December 1, 2028.
105	105	(b) On abolishment, the advisory council shall donate any
106	106	unexpended money to an organization for improving the treatment and
107	107	care of individuals with rare diseases, including conducting
108	108	research on specific rare diseases.
109	109	SECTION 2. Not later than December 1, 2019, the governor
110	110	shall appoint the Texas Rare Disease Advisory Council members as
111	111	required by Chapter 101A, Health and Safety Code, as added by this
112	112	Act.
113	113	SECTION 3. This Act takes effect immediately if it receives
114	114	a vote of two-thirds of all the members elected to each house, as
115	115	provided by Section 39, Article III, Texas Constitution. If this
116	116	Act does not receive the vote necessary for immediate effect, this
117	117	Act takes effect September 1, 2019.