H.B. No. 181
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 52A to read as follows:
CHAPTER 52A. SICKLE CELL DISEASE REGISTRY
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
voting.
______________________________
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: _____________________
Date
_____________________
Governor