H.B. No. 181
  relating to the establishment of the sickle cell disease registry.
         SECTION 1.  Subtitle B, Title 2, Health and Safety Code, is
  amended by adding Chapter 52A to read as follows:
         Sec. 52A.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. 52A.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 cases of sickle cell disease 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 cases of sickle cell disease that occur
  in this state; and
               (2)  any other information concerning cases of sickle
  cell disease that the executive commissioner considers necessary
  and appropriate for the cure or treatment of sickle cell disease.
         Sec. 52A.003.  DATA FROM HEALTH CARE FACILITIES. A health
  care facility shall provide to the department, in the form and
  manner prescribed by the department, data the department considers
  necessary and appropriate concerning cases of sickle cell disease.
         Sec. 52A.004.  DEPARTMENT POWERS; RULES.  (a)  To implement
  this chapter, the department may:
               (1)  execute necessary contracts;
               (2)  receive data from health care facilities
  concerning cases of sickle cell disease 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 that is useful to physicians, other
  medical personnel, and the public.
         (b)  The executive commissioner shall adopt rules as
  necessary to implement this chapter.
         (c)  The executive commissioner by rule shall develop
  guidelines to:
               (1)  obtain information from health care facilities
  regarding cases of sickle cell disease;
               (2)  protect the confidentiality of individuals
  diagnosed with sickle cell disease in accordance with Section
  159.002, Occupations Code; and
               (3)  ensure that the registry is developed in a manner
  consistent with:
                     (A)  the Health Insurance Portability and
  Accountability Act of 1996 (Pub. L. No. 104-191);
                     (B)  regulations adopted under that Act; and
                     (C)  other applicable laws and regulations
  governing disclosure of health information.
         Sec. 52A.005.  REPORTS. (a) The department shall submit an
  annual report to the legislature of 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 52A, Health and Safety Code, as added by this Act.
         SECTION 3.  This Act takes effect September 1, 2023.
  ______________________________ ______________________________
     President of the Senate Speaker of the House     
         I certify that H.B. No. 181 was passed by the House on May 3,
  2023, by the following vote:  Yeas 99, Nays 48, 1 present, not
  Chief Clerk of the House   
         I certify that H.B. No. 181 was passed by the Senate on May
  22, 2023, by the following vote:  Yeas 25, Nays 6.
  Secretary of the Senate    
  APPROVED:  _____________________