Bill Text: TX SB1641 | 2019-2020 | 86th Legislature | Introduced
Bill Title: Relating to the establishment of the Texas Rare Disease Advisory Council.
Spectrum: Partisan Bill (Democrat 1-0)
Status: (Introduced - Dead) 2019-03-14 - Referred to Health & Human Services [SB1641 Detail]
Download: Texas-2019-SB1641-Introduced.html
86R13822 SCL-D | ||
By: Miles | S.B. No. 1641 |
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relating to the 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.0001. DEFINITION. In this chapter, "advisory | ||
council" means the Texas Rare Disease Advisory Council established | ||
under this chapter. | ||
Sec. 101A.0002. ESTABLISHMENT. (a) The department shall | ||
establish the Texas Rare Disease Advisory Council to advise the | ||
legislature, governor, and state agencies and private entities that | ||
provide services or care to individuals with rare diseases. | ||
(b) The department shall designate a nonprofit organization | ||
operating in this state and with experience in the field of rare | ||
diseases to provide administrative support to the advisory council. | ||
Sec. 101A.0003. INITIAL MEMBERS AND REPORT. (a) The | ||
governor or the governor's designee shall appoint the initial chair | ||
and vice chair of the advisory council. | ||
(b) The chair and vice chair of the advisory council shall | ||
jointly appoint the other initial members of the advisory council. | ||
(c) On appointment of all initial advisory council members, | ||
the advisory council shall develop and submit to the governor and | ||
the legislature a written description of the intended mission of | ||
the advisory council, including a list of any state agencies and | ||
legislative committees that the advisory council intends to advise. | ||
Sec. 101A.0004. TERMS; VACANCY. (a) Advisory council | ||
members serve two-year terms. | ||
(b) If a vacancy occurs on the advisory council, a person | ||
shall be appointed to fill the vacancy for the unexpired term. | ||
Sec. 101A.0005. MEMBERSHIP PROCEDURES. After initial | ||
members are appointed under Section 101A.0003, the advisory council | ||
shall determine the procedures for appointing members to the | ||
advisory council provided that: | ||
(1) the advisory council membership may not exceed 20 | ||
members; | ||
(2) members appointed under this section must be | ||
approved by a majority vote of the advisory council members; | ||
(3) the advisory council may not modify a member's term | ||
established under Section 101A.0004; | ||
(4) members serve on the advisory council until | ||
replaced; and | ||
(5) a majority of advisory council members constitute | ||
a quorum for purposes of conducting a meeting. | ||
Sec. 101A.0006. DUTIES. The advisory council shall: | ||
(1) advise the legislature, governor, and state | ||
agencies and private entities that provide services or care to | ||
individuals with rare diseases; | ||
(2) coordinate with community-based organizations and | ||
private entities in this state to ensure greater cooperation on | ||
research, diagnosis, and treatment of rare diseases by: | ||
(A) providing to the state agencies and private | ||
entities the outcomes of the advisory council's research, best | ||
practices, and policy recommendations; and | ||
(B) using common research collection and | ||
publication procedures; | ||
(3) study and determine the most appropriate methods | ||
for collecting information on rare diseases in this state and other | ||
information the advisory council determines necessary and | ||
appropriate to collect; | ||
(4) study and identify priorities relating to the | ||
quality, cost-effectiveness, and access to treatment and services | ||
provided to individuals with rare diseases and develop related | ||
policy recommendations; | ||
(5) identify best practices for rare disease care | ||
implemented by other state and federal agencies that may improve | ||
rare disease care in this state; | ||
(6) develop effective strategies to increase public | ||
awareness of rare diseases in this state; | ||
(7) ensure that the duties of the advisory council are | ||
performed in a manner compatible with similar research conducted by | ||
state and federal agencies; and | ||
(8) develop a list of existing, publicly accessible | ||
resources on research, diagnosis, treatment, and education | ||
relating to rare diseases, in collaboration with medical schools, | ||
public health schools, and hospitals in this state. | ||
Sec. 101A.0007. REPORT. (a) The advisory council shall | ||
prepare and submit a biennial report on the advisory council's | ||
activities, findings, and recommendations to the governor, | ||
department, and the standing committees of the senate and house of | ||
representatives with primary jurisdiction over rare diseases. | ||
(b) Not later than the 90th day after the date the report | ||
described by Subsection (a) is received, the governor and | ||
department shall provide a written response to the advisory council | ||
on the governor's or department's efforts to improve state policies | ||
on the identification, treatment, and care of individuals with rare | ||
diseases. | ||
(c) Not later than the 120th day after the date the report | ||
described by Subsection (a) is received, the appropriate | ||
legislative committees shall convene a hearing on the | ||
identification of rare diseases and the treatment and care provided | ||
to individuals with rare diseases. | ||
Sec. 101A.0008. FUNDING. The advisory council may solicit | ||
and accept gifts, grants, and donations to establish and operate | ||
the advisory council. | ||
Sec. 101A.0009. EXPIRATION; DONATION OF UNEXPENDED MONEY. | ||
(a) This chapter expires and the advisory council is abolished | ||
December 1, 2028. | ||
(b) On abolishment, the advisory council shall donate any | ||
unexpended money to an organization for improving the treatment and | ||
care of individuals with rare diseases, including conducting | ||
research on specific rare diseases. | ||
SECTION 2. Not later than December 1, 2019, the governor | ||
shall appoint the Texas Rare Disease Advisory Council members as | ||
required by Chapter 101A, Health and Safety Code, as added by this | ||
Act. | ||
SECTION 3. This Act takes effect immediately if it receives | ||
a vote of two-thirds of all the members elected to each house, as | ||
provided by Section 39, Article III, Texas Constitution. If this | ||
Act does not receive the vote necessary for immediate effect, this | ||
Act takes effect September 1, 2019. |