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

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Governor