Earlier this week, Iowa Representative Ann Meyer and Senator Jeff Edler introduced HSB 690 and SSB 3122, legislation that would help save the lives of more than 100 babies born in Iowa annually. 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. Iowa 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.
HSB 690 and SSB 3122 provide a thoughtful approach to expanding newborn screening in Iowa that ensures that all conditions on the federal Recommended Uniform Screening Panel (RUSP) are added to the screening panel in a reasonable amount of time. The RUSP is periodically updated using a thorough, science and evidence-based deliberative review process involving a national committee of experts in newborn screening.
By allowing Iowa to take advantage of the work done by these medical experts, we can remove the obstacles to early detection and ensure that Iowa babies have access to these life-saving diagnoses as soon as possible. For the more than 100 Iowa babies expected to receive a diagnosis due to newborn screening each year, this critical program allows for successful management of diseases at a lower-long term cost- not only saving lives, but also saving state funds.
