SB1140 - Relating to establishment of the Texas Rare Disease Advisory Council.

  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 &#xA [Text truncated for display. Full text available on LegiScan.]