88R11093 MPF-F
 
  By: Miles S.B. No. 1408
 
 
 
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.