HB3554 - Relating to establishment of the Texas Rare Disease Advisory Council.

  89R13770 MPF-D     By: Simmons, Lalani, Oliverson, Howard, Rose H.B. No. 3554       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)     "Rare disease" means a disease, disorder, or   condition that affects fewer than 200,000 individuals in the United   States.           Sec.   101A.002.     ESTABLISHMENT. (a) The Texas Rare Disease   Advisory Council is established to advise the governor, state   agencies, and private entities that provide health care services or   other treatment to individuals diagnosed with rare diseases in this   state on strategies for improving health outcomes for those   individuals.           (b)     The department shall provide to the advisory council   resources, personnel, and other administrative support as   necessary for the council to carry out its duties under this   chapter.           Sec.   101A.003.     ADVISORY COUNCIL MEMBERS. (a) The advisory   council is composed of 23 members appointed as follows:                 (1)  11 members appointed by the governor as follows:                       (A)  one representative of the department;                       (B)  one representative of the commission;                       (C)     one representative of the Texas Department of   Insurance;                       (D)     one representative of the Texas Education   Agency;                       (E)  one geneticist practicing in this state;                       (F)     one registered nurse or advanced practice   registered nurse licensed and practicing in this state with   experience in treating rare diseases;                       (G)     one hospital administrator of a hospital in   this state that provides care to individuals diagnosed with a rare   disease;                       (H)     one pharmacist licensed and practicing in   this state with experience dispensing prescription drugs used in   treating rare diseases;                       (I)     one representative of the biotechnology   industry;                       (J)     one representative of a health insurance   company; and                       (K)     one physician licensed and practicing in this   state with experience in treating rare diseases;                 (2)     six members appointed by the lieutenant governor   as follows:                       (A)     one representative of an academic research   institution in this state that receives grant funding for rare   disease research;                       (B)     one physician licensed and practicing in this   state with experience in treating rare diseases;                       (C)     one individual who is 18 years of age or older   and who is diagnosed with a rare disease;                       (D)     two individuals who are, or previously served   as, caregivers for an individual diagnosed with a rare disease; and                       (E)     one representative of an organization that   provides care or other support to individuals diagnosed with a rare   disease in this state; and                 (3)     six members appointed by the speaker of the house   of representatives as follows:                       (A)     one representative of an academic research   institution in this state that receives grant funding for rare   disease research;                       (B)     one physician licensed and practicing in this   state with experience in treating rare diseases;                       (C)     one individual who is 18 years of age or older   and who is diagnosed with a rare disease;                       (D)     two individuals who are, or previously served   as, caregivers for an individual diagnosed with a rare disease; and                       (E)     one representative of an organization that   provides care or other support to individuals diagnosed with a rare   disease in this state.           (b)     Advisory council members serve staggered four-year   terms, with the terms of one-half of the members, or as near to   one-half as possible, expiring February 1 of each odd-numbered   year.           (c)     A vacancy on the advisory council shall be filled for   the unexpired term in the same manner as the original appointment.           Sec.   101A.004.     PRESIDING OFFICER; ASSISTANT PRESIDING   OFFICER. The governor shall annually select from among the   advisory council members a presiding officer and an assistant   presiding officer.           Sec.   101A.005.     COUNCIL MEETINGS. (a) The advisory council   shall meet:                 (1)     at the call of the advisory council's presiding   officer; and                 (2)     on request by a majority of the advisory council   members.           (b)     A majority of the voting members of the advisory council   constitutes a quorum.           (c)     A meeting conducted under this section may be in person   or by video conference call, as determined by the advisory   council's presiding officer.           (d)     The advisory council shall provide notice of upcoming   advisory council meetings on the department's Internet website.           Sec. 101A.006.  DUTIES. (a) The advisory council shall:                 (1)     consult with experts on rare diseases and solicit   public comment to develop policy recommendations for improving the   treatment of rare diseases in this state;                 (2)     develop strategy recommendations for academic   research institutions of higher education in this state to   facilitate continued research on rare diseases;                 (3)     develop strategy recommendations for health care   providers to better recognize and diagnose rare diseases to improve   patient treatment; and                 (4)     make recommendations to the department and other   state agencies on matters affecting individuals diagnosed with a   rare disease, including emergency preparedness and response   resources for a pandemic or natural disaster.           (b)     The advisory council shall provide the department with   the strategy recommendations developed under Subsection (a)(3) for   publication on the department's Internet website.           Sec.   101A.007.     ANNUAL REPORT. (a) Not later than September   1 of each year, the advisory council shall prepare and submit to the   governor and commissioner a report that includes:                 (1)     a summary of the advisory council's activities for   the preceding year; and                 (2)     recommendations for legislative or other action on   rare disease research and care.           (b)     The advisory council shall publish the report prepared   and submitted under Subsection (a) on the department's Internet   website.           Sec.   101A.008.     APPLICABILITY OF OTHER LAW. Section   2110.008, Government Code, does not apply to the advisory council.          SECTION 2.  Not later than December 1, 2025, the appropriate   appointing authority shall appoint the initial members to the Texas   Rare Disease Advisory Council as required by Section 101A.003(a),   Health and Safety Code, as added by this Act, with the initial   members' terms expiring as follows:                (1)  the terms of five members appointed under Section   101A.003(a)(1), of three members appointed under Section   101A.003(a)(2), and of three members appointed under Section   101A.003(a)(3) expiring February 1, 2029; and                (2)  the terms of six members appointed under Section   101A.003(a)(1), of three members appointed under Section   101A.003(a)(2), and of three members appointed under Section   101A.003(a)(3) expiring February 1, 2031.          SECTION 3.  Notwithstanding Section 101A.005, Health and   Safety Code, as added by this Act, the Texas Rare Disease Advisory   Council shall conduct the council's first meeting not later than   January 1, 2026.          SECTION 4.  Notwithstanding Section 101A.007, Health and   Safety Code, as added by this Act, the Texas Rare Disease Advisory   Council shall submit the first report required by that section not   later than September 1, 2026.          SECTION 5.  This Act takes effect September 1, 2025.