RARE Daily

Texas Governor Signs Bill to Enhance Newborn Screening

June 13, 2023

Rare Daily Staff

Texas Governor Greg Abbott signed legislation that will align the state’s newborn screening with the federal Recommended Uniform Screening Panel, a list of disorders the Secretary of the Department of Health and Human Services recommends for states to screen as part of their universal newborn screening programs.

Texas becomes the 11th state to pass Recommended Uniform Screening Panel alignment legislation.

The law establishes a three-year timeline in which the screening must begin for new conditions added to the federal Recommended Uniform Screening Panel and ensures that the Texas Department of State Health Services provide an annual report to state leadership that outlines the department’s capacity to implement additional nationally recommended newborn screening tests, including the ability to add conditions within two years of addition to the federal recommendations.

Although more than 1,200 newborns in Texas every year receive life-saving diagnoses through newborn screening, Texas currently does not screen newborns for several recommended conditions. The delayed implementation creates disparities in clinical care and leaves hundreds of babies undetected and without timely treatment.

EveryLife Foundation, which worked with the Texas Rare Alliance and more than 60 patient advocacy organizations to garner support for the legislation, noted that the legislation includes language within the state budget that will help ensure that the newborn screening program will predictably receive the funding required to conduct newborn screening.

“The bill symbolizes a collective dedication to promoting the safety, health, and well-being of those born with rare conditions,” said Annie Kennedy, chief of policy, advocacy, and patient engagement at the EveryLife Foundation. “The signing of this bill into law sends a powerful message: Texas prioritizes the well-being of its newborns. Continued efforts to improve the state’s newborn screening process will save lives and bring hope to families facing challenging medical journeys.”

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