88R11093 MPF-F
By: A. Johnson of Harris H.B. No. 4619
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 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.