Bill Text: TX SB1408 | 2023-2024 | 88th Legislature | Introduced
Bill Title: Relating to establishment of the Texas Rare Disease Advisory Council.
Spectrum: Partisan Bill (Democrat 1-0)
Status: (Introduced - Dead) 2023-03-16 - Referred to Health & Human Services [SB1408 Detail]
Download: Texas-2023-SB1408-Introduced.html
88R11093 MPF-F | ||
By: Miles | S.B. No. 1408 |
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relating to establishment of the Texas Rare Disease Advisory | ||
Council. | ||
BE IT ENACTED BY THE LEGISLATURE OF THE STATE OF TEXAS: | ||
SECTION 1. Subtitle E, Title 2, Health and Safety Code, is | ||
amended by adding Chapter 101A to read as follows: | ||
CHAPTER 101A. TEXAS RARE DISEASE ADVISORY COUNCIL | ||
Sec. 101A.001. DEFINITIONS. In this chapter: | ||
(1) "Advisory council" means the Texas Rare Disease | ||
Advisory Council established under this chapter. | ||
(2) "Institution of higher education" means an | ||
institution of higher education or a private or independent | ||
institution of higher education, as those terms are defined by | ||
Section 61.003, Education Code. | ||
Sec. 101A.002. ESTABLISHMENT OF ADVISORY COUNCIL. (a) The | ||
Texas Rare Disease Advisory Council is established to advise the | ||
legislature, the governor, state agencies, and private entities | ||
that provide services or care to individuals with rare diseases on | ||
the needs of individuals with rare diseases in this state. | ||
(b) The department shall designate an institution of higher | ||
education in this state willing to provide administrative support | ||
to the advisory council in discharging its duties under this | ||
chapter. | ||
Sec. 101A.003. ADVISORY COUNCIL MEMBERS. (a) The advisory | ||
council is composed of the following members: | ||
(1) one representative of the institution of higher | ||
education providing administrative support under Section 101A.002; | ||
(2) one representative of the department; | ||
(3) one representative of the commission whose duties | ||
involve the medical assistance program under Chapter 32, Human | ||
Resources Code; | ||
(4) one representative of the Texas Department of | ||
Insurance; | ||
(5) one geneticist licensed and practicing in this | ||
state; | ||
(6) one registered nurse or advanced practice | ||
registered nurse licensed and practicing in this state with | ||
experience treating rare diseases; | ||
(7) one physician licensed and practicing in this | ||
state with experience treating rare diseases; | ||
(8) one hospital administrator, or the hospital | ||
administrator's designee, of a hospital in this state that provides | ||
care to persons diagnosed with a rare disease; | ||
(9) at least two persons with a rare disease; | ||
(10) at least one caregiver of a person with a rare | ||
disease; | ||
(11) one representative of a rare disease patient | ||
organization that operates in this state; | ||
(12) one pharmacist with experience dispensing drugs | ||
used to treat rare diseases; | ||
(13) one representative of the biopharmaceutical | ||
industry; | ||
(14) one representative of a health insurance company; | ||
and | ||
(15) one member of the scientific community who is | ||
engaged in rare disease research, including a medical researcher | ||
with experience conducting research on rare diseases. | ||
(a-1) Notwithstanding Subsection (a) and Section 101A.005 | ||
and not later than December 1, 2023, the initial presiding officer | ||
of the advisory council appointed under Section 101A.004(b-1) shall | ||
appoint the initial members of the advisory council to staggered | ||
terms with the terms of one-third of the members, or as near to | ||
one-third as possible, expiring each year. An initial advisory | ||
council member appointed under this subsection may serve a | ||
two-year, three-year, or four-year term. This subsection expires | ||
September 1, 2029. | ||
(b) Except as otherwise provided by Subsection (c), an | ||
individual must be a resident of this state to be eligible for | ||
appointment as a member of the advisory council. | ||
(c) The representative of the biopharmaceutical industry | ||
appointed under Subsection (a)(13) may be a resident of any state. | ||
(d) If a vacancy occurs on the advisory council, the members | ||
of the advisory council shall fill the vacancy by a majority vote, | ||
in a timely manner and in compliance with the requirements of this | ||
section. The advisory council shall conduct the member appointment | ||
process in a transparent manner to provide interested individuals | ||
an opportunity to apply for membership on the advisory council. | ||
Sec. 101A.004. PRESIDING OFFICER. (a) Members of the | ||
advisory council shall select from among the advisory council's | ||
members a presiding officer. | ||
(b) A person who holds an elected or appointed state | ||
governmental position or a state employee may not be appointed as | ||
the presiding officer of the advisory council. | ||
(b-1) Notwithstanding Subsection (a) or Section 101A.005 | ||
and not later than October 1, 2023, the governor, or the governor's | ||
designee, shall appoint an initial presiding officer of the | ||
advisory council to serve a three-year term. This subsection | ||
expires September 1, 2027. | ||
Sec. 101A.005. TERMS. (a) Members of the advisory council | ||
serve staggered three-year terms, with the terms of one-third of | ||
the members, or as near to one-third as possible, expiring each | ||
year. | ||
(b) The presiding officer of the advisory council serves a | ||
two-year term. | ||
Sec. 101A.006. DUTIES. The advisory council shall: | ||
(1) consult with experts on rare diseases to develop | ||
policy recommendations for improving patient access to: | ||
(A) rare disease specialists; | ||
(B) affordable and comprehensive health care | ||
coverage; | ||
(C) relevant diagnostic procedures for rare | ||
diseases; | ||
(D) timely and quality treatment for rare | ||
diseases; and | ||
(E) other needed services, as determined by the | ||
advisory council; | ||
(2) make recommendations to state agencies and | ||
insurers that provide services to persons with a rare disease on the | ||
impact on the provision of treatment and care for the person of | ||
prior authorization requirements, cost-sharing requirements, | ||
benefits tiering, or other utilization management procedures; | ||
(3) make recommendations to improve coverage under the | ||
state Medicaid program of drugs for rare disease patients, | ||
including engagement with the Drug Utilization Review Board, to | ||
improve health benefit plan coverage of diagnostic procedures, and | ||
to facilitate access to necessary health care providers with | ||
expertise in the treatment of rare diseases; | ||
(4) identify best practices to reduce health | ||
disparities and achieve health equity in the research, diagnosis, | ||
and treatment of rare diseases in this state; and | ||
(5) identify best practices to ensure continuity of | ||
care for rare disease patients transitioning from pediatric to | ||
adult care. | ||
Sec. 101A.007. BIENNIAL REPORT. (a) Not later than | ||
September 1 of each even-numbered year, the advisory council shall | ||
prepare and submit a report to the governor, department, and | ||
standing committees of the senate and house of representatives with | ||
primary jurisdiction over health care and appropriations a report | ||
on the advisory council's activities, funding, and legislative | ||
recommendations. | ||
(b) Before finalizing and submitting the report under | ||
Subsection (a), a draft of the report must be made available for | ||
public comment and discussion at an open public meeting. | ||
Sec. 101A.008. FUNDING. The advisory council may solicit | ||
and accept gifts, grants, and donations to establish and operate | ||
the advisory council. | ||
Sec. 101A.009. COUNCIL MEETINGS. (a) The advisory council | ||
shall meet at least once each quarter. | ||
(b) A meeting conducted under this section may be in person | ||
or by video conference call, as determined by the presiding | ||
officer. | ||
(c) Not later than January 1, 2024, the advisory council | ||
shall hold an initial meeting. During the 2024 calendar year, the | ||
advisory council shall meet at least once per month. This | ||
subsection expires September 1, 2025. | ||
Sec. 101A.010. PUBLIC OUTREACH. The advisory council | ||
shall: | ||
(1) provide opportunities to inform the public about | ||
the advisory council's work and for the public to provide comments | ||
on that work; and | ||
(2) create and maintain a public Internet website to: | ||
(A) provide public access to meeting minutes; | ||
(B) provide notice of upcoming advisory council | ||
meetings; and | ||
(C) allow for the submission of public comments. | ||
SECTION 2. (a) Not later than October 1, 2023, the governor | ||
or the governor's designee shall appoint the initial presiding | ||
officer to the Texas Rare Disease Advisory Council as required by | ||
Section 101A.004, Health and Safety Code, as added by this Act. | ||
(b) Not later than December 1, 2023, the initial presiding | ||
officer of the Texas Rare Disease Advisory Council shall appoint | ||
the initial members of the advisory council as required by Section | ||
101A.003, Health and Safety Code, as added by this Act. | ||
SECTION 3. This Act takes effect September 1, 2023. |