Texas Representative Stephanie Klick and Senator Blanco recently introduced H.B. 2478 and S.B. 1697 to eliminate unnecessary delays in the state’s newborn screening processes and ensure that babies born with debilitating and life-threatening diseases are diagnosed and treated at the earliest age possible. Patient organizations are encouraged to support this legislation by signing the letter of support led by the EveryLife Foundation for Rare Diseases using this link. Texas residents are encouraged to ask their state representatives to support this legislation by using our easy online form. The form is pre-filled and automatically sends a message to the advocate’s representatives. It takes less than a minute to complete.
Every year, hundreds of thousands of babies born in Texas are screened immediately after birth to detect life-threatening conditions that require urgent medical intervention. Many states, including Texas, screen for conditions on the Recommended Uniform Screening Panel (RUSP) which is periodically updated using a thorough, science and evidence-based deliberative review process involving a committee of experts in newborn screening. However, it can take years for states to add new RUSP conditions to their screening programs, delaying life-changing diagnoses for newborns. H.B. 2478 and S.B. 1697 provide a thoughtful approach to expanding newborn screening in Texas that ensures that all conditions on the RUSP are added to the state’s screening panel in a reasonable amount of time.
By removing unnecessary delays to screening for new conditions, medical professionals can detect potentially fatal diseases and provide life-saving interventions as early as possible, minimizing irreversible disease progression for the state’s youngest and most vulnerable patients and providing families with valuable information about their child’s health. If diagnosed early, many of these disorders can be managed successfully and at a lower long-term cost – not only saving lives but also saving state funds.
Take Action! As an advocate for patients with rare diseases, using your voice makes a life-saving difference. Urge Your Texas State Legislators to Support H.B. 2478 and S.B. 1697
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To learn more about the legislation and how to support newborn screening, visit RareScreening.org.
