HB 107

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