H.B. No. 107         AN ACT   relating to the establishment of the sickle cell disease registry.          BE IT ENACTED BY THE LEGISLATURE OF THE STATE OF TEXAS:          SECTION 1.  Subtitle B, Title 2, Health and Safety Code, is   amended by adding Chapter 52B to read as follows:   CHAPTER 52B. SICKLE CELL DISEASE REGISTRY          Sec. 52B.001.  DEFINITION. In this chapter, "health care   facility" means:                (1)  a hospital licensed under Chapter 241; or                (2)  any other facility that provides diagnostic or   treatment services to patients with sickle cell disease.          Sec. 52B.002.  REGISTRY; CONTENTS. (a) The department shall   establish and maintain a sickle cell disease registry in accordance   with this chapter for use as a single repository of accurate,   complete records of sickle cell disease cases to aid in the cure and   treatment of sickle cell disease in this state.          (b)  The sickle cell disease registry must include:                (1)  a record of sickle cell disease cases that occur in   this state; and                (2)  any other information concerning sickle cell   disease cases the executive commissioner considers necessary and   appropriate to assist with the cure or treatment of sickle cell   disease.          Sec. 52B.003.  DATA FROM HEALTH CARE FACILITIES. A health   care facility shall provide to the department, in the form and   manner the department prescribes, data the department considers   necessary and appropriate concerning sickle cell disease cases.          Sec. 52B.004.  DEPARTMENT POWERS; RULES.  (a)  To implement   this chapter, the department may:                (1)  execute necessary contracts;                (2)  receive data from health care facilities   concerning sickle cell disease cases to record and analyze the data   directly related to the disease; and                (3)  compile and publish statistical and other studies   derived from data obtained under this chapter to provide, in an   accessible form, information useful to physicians, other medical   personnel, and the public.          (b)  The executive commissioner shall adopt rules to   implement this chapter.          (c)  The executive commissioner by rule shall develop   guidelines to:                (1)  obtain data from health care facilities regarding   sickle cell disease cases;                (2)  require consent of an individual or the   individual's legally authorized representative before any   information relating to the individual is included in the sickle   cell disease registry;                (3)  allow the individual or the individual's legally   authorized representative to withdraw consent for inclusion of the   individual's information in the registry;                (4)  protect the confidentiality of individuals   diagnosed with sickle cell disease in accordance with Section   159.002, Occupations Code; and                (5)  ensure the registry is developed in a manner   consistent with:                      (A)  the Health Insurance Portability and   Accountability Act of 1996 (Pub. L. No. 104-191) and regulations   adopted under that Act; and                      (B)  other applicable laws and rules governing the   disclosure of health information.          (d)  The executive commissioner shall ensure the rules   adopted under this section provide protections to restrict the use   or disclosure of Medicaid information to purposes only directly   connected with the administration of the Medicaid program.          Sec. 52B.005.  CONFIDENTIALITY. (a) Reports, records, and   information obtained under this chapter:                (1)  are not public information;                (2)  are not subject to the requirements of Chapter   552, Government Code;                (3)  are not subject to subpoena; and                (4)  may not otherwise be released or made public   except as provided by this section or Section 52B.004.          (b)  The reports, records, and information obtained under   this chapter are for the confidential use of the department and the   persons or public or private entities the department determines are   necessary to carry out the purposes of this chapter.          (c)  Medical or epidemiological information may be released:                (1)  for statistical purposes in a manner that prevents   identification of individuals, health care facilities, clinical   laboratories, or health care practitioners; or                (2)  with the consent of each person identified in the   information.          (d)  A state employee may not testify in a civil, criminal,   special, or other proceeding as to the existence or contents of   records, reports, or information concerning an individual's   medical records used in submitting information required under this   chapter unless the individual consents in advance.          (e)  Information furnished to a sickle cell disease registry   or a sickle cell researcher under Subsection (c) is for the   confidential use of the sickle cell disease registry or the sickle   cell researcher, as applicable, and is subject to Subsection (a).          (f)  The department's institutional review board established   under Chapter 108 shall review and approve requests for access to   information that identifies individuals in the sickle cell disease   registry.          Sec. 52B.006.  REPORTS. (a) The department shall submit an   annual report to the legislature on the information obtained under   this chapter.          (b)  The department, in cooperation with other sickle cell   disease reporting organizations and research institutions, may   publish reports the department determines are necessary to carry   out the purposes of this chapter.          SECTION 2.  The Department of State Health Services is   required to implement a provision of this Act only if the   legislature appropriates money specifically for that purpose. If   the legislature does not appropriate money specifically for that   purpose, the department may, but is not required to, implement a   provision of this Act using other money available for that purpose.          SECTION 3.  As soon as practicable after the effective date   of this Act, the executive commissioner of the Health and Human   Services Commission shall adopt rules necessary to implement   Chapter 52B, Health and Safety Code, as added by this Act.          SECTION 4.  This Act takes effect September 1, 2025.       ______________________________ ______________________________      President of the Senate Speaker of the House                   I certify that H.B. No. 107 was passed by the House on April   28, 2025, by the following vote:  Yeas 110, Nays 33, 1 present, not   voting; and that the House concurred in Senate amendments to H.B.   No. 107 on May 28, 2025, by the following vote:  Yeas 96, Nays 31, 2   present, not voting.     ______________________________   Chief Clerk of the House               I certify that H.B. No. 107 was passed by the Senate, with   amendments, on May 20, 2025, by the following vote:  Yeas 25, Nays   6.     ______________________________   Secretary of the Senate      APPROVED: __________________                   Date                       __________________                 Governor