86R13822 SCL-D
By: Miles S.B. No. 1641
A BILL TO BE ENTITLED
AN ACT
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.