| 4 | 3 | | |
|---|
| 5 | 4 | | |
|---|
| 6 | 5 | | A BILL TO BE ENTITLED |
|---|
| 7 | 6 | | AN ACT |
|---|
| 8 | 7 | | relating to the establishment of a sickle cell disease registry. |
|---|
| 9 | 8 | | BE IT ENACTED BY THE LEGISLATURE OF THE STATE OF TEXAS: |
|---|
| 10 | 9 | | SECTION 1. Subtitle B, Title 2, Health and Safety Code, is |
|---|
| 11 | 10 | | amended by adding Chapter 52A to read as follows: |
|---|
| 12 | 11 | | CHAPTER 52A. SICKLE CELL DISEASE REGISTRY |
|---|
| 13 | 12 | | Sec. 52A.001. DEFINITION. In this chapter, "health care |
|---|
| 14 | 13 | | facility" means: |
|---|
| 15 | 14 | | (1) a hospital licensed under Chapter 241; or |
|---|
| 16 | 15 | | (2) any other facility that provides diagnostic or |
|---|
| 17 | 16 | | treatment services to patients with sickle cell disease. |
|---|
| 18 | 17 | | Sec. 52A.002. REGISTRY; CONTENTS. (a) The department shall |
|---|
| 19 | 18 | | establish and maintain a registry of individuals diagnosed with |
|---|
| 20 | 19 | | sickle cell disease in accordance with this chapter for use as a |
|---|
| 21 | 20 | | single repository of accurate, complete records to aid in the cure |
|---|
| 22 | 21 | | and treatment of sickle cell disease in this state. |
|---|
| 23 | 22 | | (b) The sickle cell disease registry must include: |
|---|
| 24 | 23 | | (1) a record of individuals in this state who have been |
|---|
| 25 | 24 | | diagnosed with sickle cell disease; and |
|---|
| 26 | 25 | | (2) any other information regarding individuals who |
|---|
| 27 | 26 | | have been diagnosed with sickle cell disease that the executive |
|---|
| 28 | 27 | | commissioner considers necessary and appropriate for inclusion on |
|---|
| 29 | 28 | | the registry. |
|---|
| 30 | 29 | | Sec. 52A.003. DATA FROM HEALTH CARE FACILITIES. A health |
|---|
| 31 | 30 | | care facility shall provide to the department, in the form and |
|---|
| 32 | 31 | | manner prescribed by the department, data regarding individuals who |
|---|
| 33 | 32 | | have been diagnosed with sickle cell disease. |
|---|
| 34 | 33 | | Sec. 52A.004. RULES. The executive commissioner by rule |
|---|
| 35 | 34 | | shall develop guidelines to: |
|---|
| 36 | 35 | | (1) obtain information regarding individuals |
|---|
| 37 | 36 | | diagnosed with sickle cell disease from health care facilities; |
|---|
| 38 | 37 | | (2) protect the confidentiality of the individuals in |
|---|
| 39 | 38 | | accordance with Section 159.002, Occupations Code; and |
|---|
| 40 | 39 | | (3) ensure that the registry is developed in a manner |
|---|
| 41 | 40 | | consistent with the Health Insurance Portability and |
|---|
| 42 | 41 | | Accountability Act of 1996 (Pub. L. No. 104-191), regulations |
|---|
| 43 | 42 | | adopted under that Act, and other applicable laws and regulations |
|---|
| 44 | 43 | | governing disclosure of health information. |
|---|
| 45 | 44 | | Sec. 52A.005. REPORTS. (a) The department shall publish an |
|---|
| 46 | 45 | | annual report to the legislature of the information obtained under |
|---|
| 47 | 46 | | this chapter. |
|---|
| 48 | 47 | | (b) The department, in cooperation with other sickle cell |
|---|
| 49 | 48 | | disease reporting organizations and research institutions, may |
|---|
| 50 | 49 | | publish reports the department determines are necessary to carry |
|---|
| 51 | 50 | | out the purposes of this chapter. |
|---|
| 52 | 51 | | SECTION 2. As soon as practicable after the effective date |
|---|
| 53 | 52 | | of this act, the executive commissioner of the Health and Human |
|---|
| 54 | 53 | | Services Commission shall adopt rules necessary to implement |
|---|
| 55 | 54 | | Chapter 52A, Health and Safety Code, as added by this Act. |
|---|
| 56 | 55 | | SECTION 3. This Act takes effect September 1, 2021. |
|---|