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A BILL TO BE ENTITLED
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AN ACT
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relating to establishment of the Texas Rare Disease Advisory |
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Council. |
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BE IT ENACTED BY THE LEGISLATURE OF THE STATE OF TEXAS: |
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SECTION 1. Subtitle E, Title 2, Health and Safety Code, is |
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amended by adding Chapter 101A to read as follows: |
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CHAPTER 101A. TEXAS RARE DISEASE ADVISORY COUNCIL |
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Sec. 101A.001. DEFINITIONS. In this chapter: |
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(1) "Advisory council" means the Texas Rare Disease |
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Advisory Council established under this chapter. |
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(2) "Institution of higher education" means an |
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institution of higher education or a private or independent |
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institution of higher education, as those terms are defined by |
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Section 61.003, Education Code. |
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Sec. 101A.002. ESTABLISHMENT OF ADVISORY COUNCIL. (a) The |
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Texas Rare Disease Advisory Council is established to advise the |
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legislature, the governor, state agencies, and private entities |
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that provide services or care to individuals with rare diseases on |
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the needs of individuals with rare diseases in this state. |
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(b) The department shall designate an institution of higher |
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education in this state willing to provide administrative support |
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to the advisory council in discharging its duties under this |
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chapter. |
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Sec. 101A.003. ADVISORY COUNCIL MEMBERS. (a) The advisory |
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council is composed of the following members: |
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(1) one representative of the institution of higher |
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education providing administrative support under Section 101A.002; |
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(2) one representative of the department; |
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(3) one representative of the commission whose duties |
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involve the medical assistance program under Chapter 32, Human |
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Resources Code; |
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(4) one representative of the Texas Department of |
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Insurance; |
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(5) one geneticist licensed and practicing in this |
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state; |
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(6) one registered nurse or advanced practice |
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registered nurse licensed and practicing in this state with |
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experience treating rare diseases; |
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(7) one physician licensed and practicing in this |
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state with experience treating rare diseases; |
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(8) one hospital administrator, or the hospital |
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administrator's designee, of a hospital in this state that provides |
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care to persons diagnosed with a rare disease; |
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(9) at least two persons with a rare disease; |
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(10) at least one caregiver of a person with a rare |
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disease; |
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(11) one representative of a rare disease patient |
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organization that operates in this state; |
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(12) one pharmacist with experience dispensing drugs |
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used to treat rare diseases; |
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(13) one representative of the biopharmaceutical |
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industry; |
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(14) one representative of a health insurance company; |
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and |
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(15) one member of the scientific community who is |
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engaged in rare disease research, including a medical researcher |
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with experience conducting research on rare diseases. |
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(a-1) Notwithstanding Subsection (a) and Section 101A.005 |
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and not later than December 1, 2023, the initial presiding officer |
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of the advisory council appointed under Section 101A.004(b-1) shall |
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appoint the initial members of the advisory council to staggered |
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terms with the terms of one-third of the members, or as near to |
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one-third as possible, expiring each year. An initial advisory |
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council member appointed under this subsection may serve a |
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two-year, three-year, or four-year term. This subsection expires |
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September 1, 2029. |
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(b) Except as otherwise provided by Subsection (c), an |
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individual must be a resident of this state to be eligible for |
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appointment as a member of the advisory council. |
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(c) The representative of the biopharmaceutical industry |
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appointed under Subsection (a)(13) may be a resident of any state. |
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(d) If a vacancy occurs on the advisory council, the members |
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of the advisory council shall fill the vacancy by a majority vote, |
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in a timely manner and in compliance with the requirements of this |
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section. The advisory council shall conduct the member appointment |
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process in a transparent manner to provide interested individuals |
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an opportunity to apply for membership on the advisory council. |
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Sec. 101A.004. PRESIDING OFFICER. (a) Members of the |
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advisory council shall select from among the advisory council's |
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members a presiding officer. |
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(b) A person who holds an elected or appointed state |
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governmental position or a state employee may not be appointed as |
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the presiding officer of the advisory council. |
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(b-1) Notwithstanding Subsection (a) or Section 101A.005 |
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and not later than October 1, 2023, the governor, or the governor's |
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designee, shall appoint an initial presiding officer of the |
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advisory council to serve a three-year term. This subsection |
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expires September 1, 2027. |
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Sec. 101A.005. TERMS. (a) Members of the advisory council |
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serve staggered three-year terms, with the terms of one-third of |
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the members, or as near to one-third as possible, expiring each |
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year. |
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(b) The presiding officer of the advisory council serves a |
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two-year term. |
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Sec. 101A.006. DUTIES. The advisory council shall: |
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(1) consult with experts on rare diseases to develop |
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policy recommendations for improving patient access to: |
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(A) rare disease specialists; |
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(B) affordable and comprehensive health care |
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coverage; |
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(C) relevant diagnostic procedures for rare |
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diseases; |
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(D) timely and quality treatment for rare |
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diseases; and |
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(E) other needed services, as determined by the |
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advisory council; |
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(2) make recommendations to state agencies and |
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insurers that provide services to persons with a rare disease on the |
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impact on the provision of treatment and care for the person of |
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prior authorization requirements, cost-sharing requirements, |
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benefits tiering, or other utilization management procedures; |
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(3) make recommendations to improve coverage under the |
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state Medicaid program of drugs for rare disease patients, |
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including engagement with the Drug Utilization Review Board, to |
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improve health benefit plan coverage of diagnostic procedures, and |
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to facilitate access to necessary health care providers with |
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expertise in the treatment of rare diseases; |
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(4) identify best practices to reduce health |
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disparities and achieve health equity in the research, diagnosis, |
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and treatment of rare diseases in this state; and |
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(5) identify best practices to ensure continuity of |
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care for rare disease patients transitioning from pediatric to |
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adult care. |
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Sec. 101A.007. BIENNIAL REPORT. (a) Not later than |
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September 1 of each even-numbered year, the advisory council shall |
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prepare and submit a report to the governor, department, and |
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standing committees of the senate and house of representatives with |
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primary jurisdiction over health care and appropriations a report |
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on the advisory council's activities, funding, and legislative |
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recommendations. |
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(b) Before finalizing and submitting the report under |
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Subsection (a), a draft of the report must be made available for |
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public comment and discussion at an open public meeting. |
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Sec. 101A.008. FUNDING. The advisory council may solicit |
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and accept gifts, grants, and donations to establish and operate |
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the advisory council. |
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Sec. 101A.009. COUNCIL MEETINGS. (a) The advisory council |
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shall meet at least once each quarter. |
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(b) A meeting conducted under this section may be in person |
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or by video conference call, as determined by the presiding |
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officer. |
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(c) Not later than January 1, 2024, the advisory council |
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shall hold an initial meeting. During the 2024 calendar year, the |
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advisory council shall meet at least once per month. This |
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subsection expires September 1, 2025. |
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Sec. 101A.010. PUBLIC OUTREACH. The advisory council |
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shall: |
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(1) provide opportunities to inform the public about |
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the advisory council's work and for the public to provide comments |
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on that work; and |
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(2) create and maintain a public Internet website to: |
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(A) provide public access to meeting minutes; |
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(B) provide notice of upcoming advisory council |
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meetings; and |
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(C) allow for the submission of public comments. |
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SECTION 2. (a) Not later than October 1, 2023, the governor |
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or the governor's designee shall appoint the initial presiding |
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officer to the Texas Rare Disease Advisory Council as required by |
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Section 101A.004, Health and Safety Code, as added by this Act. |
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(b) Not later than December 1, 2023, the initial presiding |
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officer of the Texas Rare Disease Advisory Council shall appoint |
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the initial members of the advisory council as required by Section |
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101A.003, Health and Safety Code, as added by this Act. |
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SECTION 3. This Act takes effect September 1, 2023. |