The Texas Department of State Health Services (DSHS) has released a report in compliance with 2023 HB 2475, a newborn screening RUSP alignment bill led by the EveryLife Foundation in partnership with the Texas Rare Alliance and rare disease advocates. The new law ensures that the Texas Department of State Health Services provides an annual report to state leadership that outlines the department’s capacity to implement additional nationally recommended newborn screening tests, including the ability to screen for conditions within two years of addition to the federal Recommended Uniform Screening Panel (RUSP).
This 2024 report highlights the progress and challenges in expanding newborn screening in Texas:
- New Disorders Addition: DSHS plans to add four new disorders—Pompe disease, MPS I, MPS II, and Krabbe disease—by mid-2025, followed by GAMT.
- Timeline Adjustment: Initially estimated for May 2024, the timeline has been extended due to the need for additional laboratory retrofitting.
- Barriers: Barriers include insufficient laboratory space, equipment updates, and staff training.
- Ongoing Efforts: DSHS continues to monitor potential additions to the screening panel and seeks ways to optimize space and resources. Legislative requests for more laboratory space are underway to ensure Texas remains aligned with national newborn screening recommendations.
The report has streamlined communication between the state and stakeholders, which is crucial to the state-wide coordination of efforts to enhance the newborn screening system. Texas advocates are encouraged to continue collaborating with the EveryLife Foundation, department, and state to ensure ongoing improvements in the newborn screening program.
To read the DSHS report, click here.
To learn more about RUSP alignment legislation or newborn screening, click here.
