Texas 2025 - 89th Regular

Texas House Bill HB3554 Compare Versions

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Old	New	Differences
1	1	89R13770 MPF-D
2	2	By: Simmons H.B. No. 3554
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7	7	A BILL TO BE ENTITLED
8	8	AN ACT
9	9	relating to establishment of the Texas Rare Disease Advisory
10	10	Council.
11	11	BE IT ENACTED BY THE LEGISLATURE OF THE STATE OF TEXAS:
12	12	SECTION 1. Subtitle E, Title 2, Health and Safety Code, is
13	13	amended by adding Chapter 101A to read as follows:
14	14	CHAPTER 101A. TEXAS RARE DISEASE ADVISORY COUNCIL
15	15	Sec. 101A.001. DEFINITIONS. In this chapter:
16	16	(1) "Advisory council" means the Texas Rare Disease
17	17	Advisory Council established under this chapter.
18	18	(2) "Rare disease" means a disease, disorder, or
19	19	condition that affects fewer than 200,000 individuals in the United
20	20	States.
21	21	Sec. 101A.002. ESTABLISHMENT. (a) The Texas Rare Disease
22	22	Advisory Council is established to advise the governor, state
23	23	agencies, and private entities that provide health care services or
24	24	other treatment to individuals diagnosed with rare diseases in this
25	25	state on strategies for improving health outcomes for those
26	26	individuals.
27	27	(b) The department shall provide to the advisory council
28	28	resources, personnel, and other administrative support as
29	29	necessary for the council to carry out its duties under this
30	30	chapter.
31	31	Sec. 101A.003. ADVISORY COUNCIL MEMBERS. (a) The advisory
32	32	council is composed of 23 members appointed as follows:
33	33	(1) 11 members appointed by the governor as follows:
34	34	(A) one representative of the department;
35	35	(B) one representative of the commission;
36	36	(C) one representative of the Texas Department of
37	37	Insurance;
38	38	(D) one representative of the Texas Education
39	39	Agency;
40	40	(E) one geneticist practicing in this state;
41	41	(F) one registered nurse or advanced practice
42	42	registered nurse licensed and practicing in this state with
43	43	experience in treating rare diseases;
44	44	(G) one hospital administrator of a hospital in
45	45	this state that provides care to individuals diagnosed with a rare
46	46	disease;
47	47	(H) one pharmacist licensed and practicing in
48	48	this state with experience dispensing prescription drugs used in
49	49	treating rare diseases;
50	50	(I) one representative of the biotechnology
51	51	industry;
52	52	(J) one representative of a health insurance
53	53	company; and
54	54	(K) one physician licensed and practicing in this
55	55	state with experience in treating rare diseases;
56	56	(2) six members appointed by the lieutenant governor
57	57	as follows:
58	58	(A) one representative of an academic research
59	59	institution in this state that receives grant funding for rare
60	60	disease research;
61	61	(B) one physician licensed and practicing in this
62	62	state with experience in treating rare diseases;
63	63	(C) one individual who is 18 years of age or older
64	64	and who is diagnosed with a rare disease;
65	65	(D) two individuals who are, or previously served
66	66	as, caregivers for an individual diagnosed with a rare disease; and
67	67	(E) one representative of an organization that
68	68	provides care or other support to individuals diagnosed with a rare
69	69	disease in this state; and
70	70	(3) six members appointed by the speaker of the house
71	71	of representatives as follows:
72	72	(A) one representative of an academic research
73	73	institution in this state that receives grant funding for rare
74	74	disease research;
75	75	(B) one physician licensed and practicing in this
76	76	state with experience in treating rare diseases;
77	77	(C) one individual who is 18 years of age or older
78	78	and who is diagnosed with a rare disease;
79	79	(D) two individuals who are, or previously served
80	80	as, caregivers for an individual diagnosed with a rare disease; and
81	81	(E) one representative of an organization that
82	82	provides care or other support to individuals diagnosed with a rare
83	83	disease in this state.
84	84	(b) Advisory council members serve staggered four-year
85	85	terms, with the terms of one-half of the members, or as near to
86	86	one-half as possible, expiring February 1 of each odd-numbered
87	87	year.
88	88	(c) A vacancy on the advisory council shall be filled for
89	89	the unexpired term in the same manner as the original appointment.
90	90	Sec. 101A.004. PRESIDING OFFICER; ASSISTANT PRESIDING
91	91	OFFICER. The governor shall annually select from among the
92	92	advisory council members a presiding officer and an assistant
93	93	presiding officer.
94	94	Sec. 101A.005. COUNCIL MEETINGS. (a) The advisory council
95	95	shall meet:
96	96	(1) at the call of the advisory council's presiding
97	97	officer; and
98	98	(2) on request by a majority of the advisory council
99	99	members.
100	100	(b) A majority of the voting members of the advisory council
101	101	constitutes a quorum.
102	102	(c) A meeting conducted under this section may be in person
103	103	or by video conference call, as determined by the advisory
104	104	council's presiding officer.
105	105	(d) The advisory council shall provide notice of upcoming
106	106	advisory council meetings on the department's Internet website.
107	107	Sec. 101A.006. DUTIES. (a) The advisory council shall:
108	108	(1) consult with experts on rare diseases and solicit
109	109	public comment to develop policy recommendations for improving the
110	110	treatment of rare diseases in this state;
111	111	(2) develop strategy recommendations for academic
112	112	research institutions of higher education in this state to
113	113	facilitate continued research on rare diseases;
114	114	(3) develop strategy recommendations for health care
115	115	providers to better recognize and diagnose rare diseases to improve
116	116	patient treatment; and
117	117	(4) make recommendations to the department and other
118	118	state agencies on matters affecting individuals diagnosed with a
119	119	rare disease, including emergency preparedness and response
120	120	resources for a pandemic or natural disaster.
121	121	(b) The advisory council shall provide the department with
122	122	the strategy recommendations developed under Subsection (a)(3) for
123	123	publication on the department's Internet website.
124	124	Sec. 101A.007. ANNUAL REPORT. (a) Not later than September
125	125	1 of each year, the advisory council shall prepare and submit to the
126	126	governor and commissioner a report that includes:
127	127	(1) a summary of the advisory council's activities for
128	128	the preceding year; and
129	129	(2) recommendations for legislative or other action on
130	130	rare disease research and care.
131	131	(b) The advisory council shall publish the report prepared
132	132	and submitted under Subsection (a) on the department's Internet
133	133	website.
134	134	Sec. 101A.008. APPLICABILITY OF OTHER LAW. Section
135	135	2110.008, Government Code, does not apply to the advisory council.
136	136	SECTION 2. Not later than December 1, 2025, the appropriate
137	137	appointing authority shall appoint the initial members to the Texas
138	138	Rare Disease Advisory Council as required by Section 101A.003(a),
139	139	Health and Safety Code, as added by this Act, with the initial
140	140	members' terms expiring as follows:
141	141	(1) the terms of five members appointed under Section
142	142	101A.003(a)(1), of three members appointed under Section
143	143	101A.003(a)(2), and of three members appointed under Section
144	144	101A.003(a)(3) expiring February 1, 2029; and
145	145	(2) the terms of six members appointed under Section
146	146	101A.003(a)(1), of three members appointed under Section
147	147	101A.003(a)(2), and of three members appointed under Section
148	148	101A.003(a)(3) expiring February 1, 2031.
149	149	SECTION 3. Notwithstanding Section 101A.005, Health and
150	150	Safety Code, as added by this Act, the Texas Rare Disease Advisory
151	151	Council shall conduct the council's first meeting not later than
152	152	January 1, 2026.
153	153	SECTION 4. Notwithstanding Section 101A.007, Health and
154	154	Safety Code, as added by this Act, the Texas Rare Disease Advisory
155	155	Council shall submit the first report required by that section not
156	156	later than September 1, 2026.
157	157	SECTION 5. This Act takes effect September 1, 2025.