89R392 MPF-F
By: Miles S.B. No. 1140
A BILL TO BE ENTITLED
AN ACT
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 in
this state on the needs of those individuals.
(b) The department shall designate an institution of higher
education in this state on agreement of the institution to provide
administrative support to the advisory council in discharging
duties under this chapter.
Sec. 101A.003. ADVISORY COUNCIL MEMBERS. (a) The advisory
council is composed of:
(1) one representative of the institution of higher
education providing administrative support under Section 101A.002,
appointed by the president of the institution;
(2) one representative of the department, appointed by
the commissioner;
(3) one representative of the commission whose duties
involve the medical assistance program under Chapter 32, Human
Resources Code, appointed by the executive commissioner;
(4) one representative of the Texas Department of
Insurance, appointed by the commissioner of insurance; and
(5) the following members, appointed by majority vote
of the members of the advisory council described by Subdivisions
(1)-(4):
(A) one geneticist licensed and practicing in
this state;
(B) one registered nurse or advanced practice
registered nurse licensed and practicing in this state with
experience treating rare diseases;
(C) one physician licensed and practicing in this
state with experience treating rare diseases;
(D) 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;
(E) at least two persons with a rare disease;
(F) at least one caregiver of a person with a rare
disease;
(G) one representative of a rare disease patient
organization that operates in this state;
(H) one pharmacist with experience dispensing
drugs used to treat rare diseases;
(I) one representative of the biopharmaceutical
industry;
(J) one representative of a health insurance
company; and
(K) 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 not later than
December 1, 2025, the initial members of the advisory council shall
be appointed as follows:
(1) the appropriate appointing authority shall
appoint the members described by Subsections (a)(1)-(4); and
(2) the initial presiding officer of the advisory
council appointed under Section 101A.004(b-1) shall appoint the
members described by Subsection (a)(5).
(a-2) This subsection and Subsection (a-1) expire September
1, 2031.
(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)(5)(I) may be a resident of any
state.
(d) If a vacancy occurs on the advisory council, the
appropriate appointing authority shall, in a timely manner and in
compliance with the requirements of this section, appoint a
successor to serve for the remainder of the unexpired term.
(e) 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(b)
and not later than October 1, 2025, the governor, or the governor's
designee, shall appoint an initial presiding officer of the
advisory council. This subsection expires September 1, 2031.
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.
(a-1) Notwithstanding Subsection (a), an initial advisory
council member appointed under Section 101A.003(a-1) may serve a
two-year, three-year, or four-year term. This subsection expires
September 1, 2031.
(b) The presiding officer of the advisory council serves a
two-year term.
(b-1) Notwithstanding Subsection (b), the initial presiding
officer of the advisory council appointed under Section
101A.004(b-1) serves a three-year term. This subsection expires
September 1, 2031.
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 treatment provision 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 a meeting open to the public.
Sec. 101A.008. FUNDING. The advisory council may solicit
and accept gifts, grants, and donations from any source to
establish and operate the advisory council.
Sec. 101A.009. ADVISORY 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, 2026, the advisory council
shall hold an initial meeting. During the 2026 calendar year, the
advisory council shall meet at least once per month. This
subsection expires September 1, 2027.
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. This Act takes effect September 1, 2025.