89R6037 MCF-D
 
  By: Simmons H.B. No. 107
 
 
 
A BILL TO BE ENTITLED
 
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)  protect the confidentiality of individuals
  diagnosed with sickle cell disease in accordance with Section
  159.002, Occupations Code; and
               (3)  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 regulations
  governing disclosure of health information.
         Sec. 52B.005.  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.  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 3.  This Act takes effect September 1, 2025.