Today, the EveryLife Foundation for Rare Diseases applauded the signing of SF 2345, a bill that will help saves the lives of more than 100 babies born in Iowa each year. The law, referred to as RUSP alignment legislation, implements a two-and-a-half-year timeline in which screening must begin for new conditions added to the federal Recommended Uniform Screening Panel (RUSP). In addition, the law ensures that the Iowa Department of Health provides an annual status report on newborn screening, including new conditions added to Iowa’s panel and why the addition of a disorder has been delayed. Iowa is the second state to adopt RUSP alignment legislation this year and the ninth overall, resulting from increased advocacy efforts in recent years.
“As new treatments and new diagnostic tests are developed each year, an increasing number of disease communities will be able to utilize newborn screening to deliver life-saving diagnosis early in life. RUSP alignment legislation ensures that Iowa will keep up with those developments,” said EveryLife Foundation Chief of Policy, Advocacy, and Patient Engagement, Annie Kennedy. “We are grateful for the Iowa Assembly for passing, and to the Governor for signing this impactful legislation, that will ensure Iowa remains a leading state for newborn screening.”
For over 50 years, every newborn in the US has been afforded the chance to be screened for a range of debilitating and deadly diseases. Over 100 babies born in Iowa each year benefit from the early detection and delivery of life-saving treatments. Yet, as new technology allows for screening of more diseases, Iowa still does not screen for all 35 federally recommended tests. As a result, children and their families miss the opportunity to receive treatment and avoid life-long disability or death.
The EveryLife Foundation partnered with more than 60 patient advocacy organizations and a committed group of rare disease parent advocates to support the legislation. The bill was championed by Iowa State Representative Ann Meyer and Senator Jeff Edler. The bill passed unanimously in both the House and Senate.
“What a privilege to join with other parent advocates and work alongside the EveryLife Foundation for Rare Diseases to see bipartisan newborn screening legislation passed in Iowa. Our excellent state hygienic lab is a hub and screens babies in South Dakota, North Dakota, and Alaska as well as in Iowa – meaning that this legislation potentially updates newborn screening in four states, not just our own,” said Carol Cross, Iowa resident and parent of two children diagnosed with Krabbe disease. “Babies with these newly added, life-threatening, treatable disorders will now have a chance for effective treatment because of early diagnosis. What a significant step forward for our rare disease community.”
The EveryLife Foundation’s newborn screening advocacy program is made possible by the support of Sanofi, and other industry partners including Alexion Pharmaceuticals, Orchard Therapeutics, Pfizer, and Spark Therapeutics.
To learn more about the legislation and how to support newborn screening, visit RareScreening.org.
