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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) "Rare disease" means a disease, disorder, or |
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condition that affects fewer than 200,000 individuals in the United |
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States. |
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Sec. 101A.002. ESTABLISHMENT. (a) The Texas Rare Disease |
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Advisory Council is established to advise the governor, state |
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agencies, and private entities that provide health care services or |
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other treatment to individuals diagnosed with rare diseases in this |
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state on strategies for improving health outcomes for those |
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individuals. |
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(b) The department shall provide to the advisory council |
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resources, personnel, and other administrative support as |
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necessary for the council to carry out 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 23 members appointed as follows: |
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(1) 11 members appointed by the governor as follows: |
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(A) one representative of the department; |
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(B) one representative of the commission; |
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(C) one representative of the Texas Department of |
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Insurance; |
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(D) one representative of the Texas Education |
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Agency; |
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(E) one geneticist practicing in this state; |
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(F) one registered nurse or advanced practice |
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registered nurse licensed and practicing in this state with |
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experience in treating rare diseases; |
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(G) one hospital administrator of a hospital in |
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this state that provides care to individuals diagnosed with a rare |
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disease; |
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(H) one pharmacist licensed and practicing in |
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this state with experience dispensing prescription drugs used in |
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treating rare diseases; |
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(I) one representative of the biotechnology |
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industry; |
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(J) one representative of a health insurance |
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company; and |
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(K) one physician licensed and practicing in this |
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state with experience in treating rare diseases; |
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(2) six members appointed by the lieutenant governor |
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as follows: |
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(A) one representative of an academic research |
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institution in this state that receives grant funding for rare |
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disease research; |
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(B) one physician licensed and practicing in this |
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state with experience in treating rare diseases; |
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(C) one individual who is 18 years of age or older |
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and who is diagnosed with a rare disease; |
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(D) two individuals who are, or previously served |
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as, caregivers for an individual diagnosed with a rare disease; and |
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(E) one representative of an organization that |
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provides care or other support to individuals diagnosed with a rare |
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disease in this state; and |
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(3) six members appointed by the speaker of the house |
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of representatives as follows: |
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(A) one representative of an academic research |
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institution in this state that receives grant funding for rare |
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disease research; |
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(B) one physician licensed and practicing in this |
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state with experience in treating rare diseases; |
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(C) one individual who is 18 years of age or older |
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and who is diagnosed with a rare disease; |
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(D) two individuals who are, or previously served |
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as, caregivers for an individual diagnosed with a rare disease; and |
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(E) one representative of an organization that |
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provides care or other support to individuals diagnosed with a rare |
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disease in this state. |
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(b) Advisory council members serve staggered four-year |
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terms, with the terms of one-half of the members, or as near to |
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one-half as possible, expiring February 1 of each odd-numbered |
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year. |
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(c) A vacancy on the advisory council shall be filled for |
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the unexpired term in the same manner as the original appointment. |
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Sec. 101A.004. PRESIDING OFFICER; ASSISTANT PRESIDING |
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OFFICER. The governor shall annually select from among the |
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advisory council members a presiding officer and an assistant |
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presiding officer. |
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Sec. 101A.005. COUNCIL MEETINGS. (a) The advisory council |
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shall meet: |
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(1) at the call of the advisory council's presiding |
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officer; and |
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(2) on request by a majority of the advisory council |
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members. |
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(b) A majority of the voting members of the advisory council |
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constitutes a quorum. |
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(c) A meeting conducted under this section may be in person |
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or by video conference call, as determined by the advisory |
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council's presiding officer. |
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(d) The advisory council shall provide notice of upcoming |
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advisory council meetings on the department's Internet website. |
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Sec. 101A.006. DUTIES. (a) The advisory council shall: |
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(1) consult with experts on rare diseases and solicit |
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public comment to develop policy recommendations for improving the |
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treatment of rare diseases in this state; |
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(2) develop strategy recommendations for academic |
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research institutions of higher education in this state to |
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facilitate continued research on rare diseases; |
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(3) develop strategy recommendations for health care |
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providers to better recognize and diagnose rare diseases to improve |
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patient treatment; and |
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(4) make recommendations to the department and other |
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state agencies on matters affecting individuals diagnosed with a |
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rare disease, including emergency preparedness and response |
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resources for a pandemic or natural disaster. |
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(b) The advisory council shall provide the department with |
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the strategy recommendations developed under Subsection (a)(3) for |
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publication on the department's Internet website. |
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Sec. 101A.007. ANNUAL REPORT. (a) Not later than September |
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1 of each year, the advisory council shall prepare and submit to the |
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governor and commissioner a report that includes: |
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(1) a summary of the advisory council's activities for |
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the preceding year; and |
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(2) recommendations for legislative or other action on |
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rare disease research and care. |
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(b) The advisory council shall publish the report prepared |
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and submitted under Subsection (a) on the department's Internet |
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website. |
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Sec. 101A.008. APPLICABILITY OF OTHER LAW. Section |
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2110.008, Government Code, does not apply to the advisory council. |
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SECTION 2. Not later than December 1, 2025, the appropriate |
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appointing authority shall appoint the initial members to the Texas |
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Rare Disease Advisory Council as required by Section 101A.003(a), |
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Health and Safety Code, as added by this Act, with the initial |
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members' terms expiring as follows: |
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(1) the terms of five members appointed under Section |
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101A.003(a)(1), of three members appointed under Section |
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101A.003(a)(2), and of three members appointed under Section |
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101A.003(a)(3) expiring February 1, 2029; and |
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(2) the terms of six members appointed under Section |
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101A.003(a)(1), of three members appointed under Section |
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101A.003(a)(2), and of three members appointed under Section |
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101A.003(a)(3) expiring February 1, 2031. |
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SECTION 3. Notwithstanding Section 101A.005, Health and |
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Safety Code, as added by this Act, the Texas Rare Disease Advisory |
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Council shall conduct the council's first meeting not later than |
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January 1, 2026. |
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SECTION 4. Notwithstanding Section 101A.007, Health and |
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Safety Code, as added by this Act, the Texas Rare Disease Advisory |
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Council shall submit the first report required by that section not |
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later than September 1, 2026. |
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SECTION 5. This Act takes effect September 1, 2025. |