HB107

HB107 establishes a framework for a statewide sickle cell disease registry, with patient consent and confidentiality protections. The purpose is to collect more complete information that may help treatment and research. It does not itself provide treatment, pay patients’ medical bills or guarantee a cure. Signed June 20, 2025, it took effect September 1, 2025. Final law; official history.

Implementation is tied to funding. The Department of State Health Services is required to implement a provision only if the Legislature appropriates money specifically for that purpose. Without such an appropriation, it may use other available money, but is not required to do so. The bill itself does not appropriate money. This briefing does not determine whether a separate appropriation satisfied that condition or whether the registry is fully operational. Final law, Section 2.

Under the statutory framework, the department establishes and maintains the registry as a single repository of sickle cell disease cases occurring in Texas and other information the Health and Human Services Commission’s executive commissioner considers necessary and appropriate for treatment or a cure. Hospitals and other facilities providing diagnosis or treatment must provide the prescribed data. The department may contract for implementation, analyze information and publish useful statistical studies, and must submit an annual report to the Legislature. Final law, Sections 52B.001–.004 and 52B.006.

Being diagnosed does not eliminate consent. Rules must require the individual or a legally authorized representative to consent before any information relating to that individual is included in the registry, and must allow that consent to be withdrawn. The act does not spell out a deletion timetable or every detail of the withdrawal procedure. Rules must also protect confidentiality, comply with federal health-privacy requirements and other applicable law, and restrict use or disclosure of Medicaid information to purposes directly connected with administering Medicaid. Required implementation rules were to be adopted as soon as practicable after the effective date. Final law, Section 52B.004 and bill Section 3.

Registry records are not public information, are exempt from the Public Information Act, are not subject to subpoena and cannot otherwise be released except as the statute allows. The department may use them confidentially, as may people or public/private entities it determines are necessary for the chapter’s purposes. This is a controlled-use system, not a promise that nobody besides the patient can ever access information. Final law, Section 52B.005(a)–(b).

Medical or disease-pattern information may be released for statistics in a way that prevents identification of patients, facilities, laboratories and practitioners, or with the consent of each person identified. State employees cannot testify about the existence or contents of the covered medical records without the individual’s advance consent. Information provided to a registry or researcher remains confidential, and the department’s institutional review board must review and approve requests for access to information identifying individuals. That approval requirement is an additional safeguard, not a blanket waiver of the other restrictions. Final law, Section 52B.005(c)–(f).