BILL ANALYSIS

H.B. 107

By: Simmons

Public Health

Committee Report (Unamended)

BACKGROUND AND PURPOSE

According to the National Institutes of Health, sickle cell disease (SCD) is a group of inherited disorders that affects a person's red blood cells and leads to a lifetime of health complications. The Department of State Health Services (DSHS) estimates that one out of every 2,000 newborns in Texas has SCD, predominantly affecting African American populations. However, the bill author has informed the committee that Texans who live with SCD are unable to receive adequate treatment due to the lack of a diagnosis, clinician awareness of an individual's diagnosis, and overall data on the disease. While DSHS's Newborn Screening Unit includes screening for SCD, the state's Sickle Cell Task Force recommended in its 2024 SCD annual report that DSHS establish and maintain a statewide, population-based sickle cell data collection system to improve treatment and health care access to patients across Texas and provide the evidence needed for funding SCD research. H.B. 107 seeks to implement this recommendation by requiring DSHS to establish and maintain a sickle cell disease registry to aid the state in its efforts to cure and treat individuals with SCD while ensuring that the privacy of those individuals' health information is maintained.

CRIMINAL JUSTICE IMPACT

It is the committee's opinion that this bill does not expressly create a criminal offense, increase the punishment for an existing criminal offense or category of offenses, or change the eligibility of a person for community supervision, parole, or mandatory supervision.         

RULEMAKING AUTHORITY

It is the committee's opinion that rulemaking authority is expressly granted to the executive commissioner of the Health and Human Services Commission in SECTION 1 of this bill.

ANALYSIS

H.B. 107 amends the Health and Safety Code to require the Department of State Health Services (DSHS) to establish and maintain a sickle cell disease registry for use as a single repository of accurate, complete records of sickle cell disease cases to aid in the cure and treatment of the disease in Texas. The bill requires the registry to include a record of sickle cell disease cases that occur in Texas, and any other information concerning such cases that the executive commissioner of the Health and Human Services Commission considers necessary and appropriate to assist with the cure or treatment of the disease. The bill requires a health care facility, defined by the bill as a licensed hospital or any other facility that provides diagnostic or treatment services to patients with sickle cell disease, to provide DSHS with data that DSHS considers necessary and appropriate concerning sickle cell disease cases in the form and manner DSHS prescribes.

H.B. 107 authorizes DSHS to do the following for purposes of implementing the bill's provisions:

·execute necessary contracts;

·receive data from health care facilities concerning sickle cell disease cases to record and analyze the data directly related to the disease; and

·compile and publish statistical and other studies derived from the data to provide, in an accessible form, information useful to physicians, other medical personnel, and the public.

The bill requires the executive commissioner to adopt rules to implement the bill's provisions and to develop by rule guidelines to obtain data from health care facilities regarding sickle cell disease cases, protect the confidentiality of individuals diagnosed with the disease in accordance with Occupations Code provisions relating to confidential physician-patient communications, and ensure that the registry is developed in a manner consistent with the federal Health Insurance Portability and Accountability Act of 1996 and related regulations, and other applicable laws and regulations governing disclosure of health information.

H.B. 107 requires DSHS to submit an annual report to the legislature on information obtained under the bill's provisions and authorizes DSHS, in cooperation with other sickle cell disease reporting organizations and research institutions, to publish reports it determines are necessary to carry out the bill's purposes.

EFFECTIVE DATE

September 1, 2025.