The EveryLife Foundation for Rare Diseases applauds Representative Sharon Cooper (R-East Cobb) for spearheading HB 1054, legislation that would: 1.) Require the state to screen newborns for any disorder recommended by the federal Recommended Uniform Screening Panel (RUSP), 2.) Require screening to begin for newly added diseases within two and a half years, and 3.) Provide for immediate consideration by the Georgia Department of Public Health (DPH) for funding the implementation of newly added diseases. The bill unanimously passed the Georgia House of Representatives today and will now be considered by the Georgia State Senate.
For over 50 years, every newborn in the U.S. has been afforded the chance to be screened for a range of debilitating and deadly diseases. Over 400 babies born in Georgia each year benefit from the early detection and delivery of life-saving treatments. Yet, as new technology allows for screening of more diseases, Georgia has lagged in implementing these tests. As a result, children and their families miss the opportunity to receive treatment and avoid life-long disability or death.
“Each year, new tests are developed to diagnose diseases before it’s too late to receive treatment. Representative Cooper’s bill will require Georgia to keep up with science,” said EveryLife Foundation Executive Director Julia Jenkins. “We’ve seen a growing interest in states in passing this common-sense legislation and are thrilled that Georgia is taking the lead. Families are counting on it and we’re grateful to Representative Cooper for addressing this critical issue.”
The U.S. Department of Health and Human Services states: “Disorders on the RUSP are chosen based on evidence that supports the potential net benefit of screening, the ability of states to screen for the disorder, and the availability of effective treatments. It is recommended that every newborn be screened for all disorders on the RUSP.” Georgia currently screens for 32 of the 35 diseases on the RUSP (Georgia babies are currently not screened for X-ALD, MPS-I and Pompe Disease).
Learn more about newborn screening.
About the EveryLife Foundation for Rare Diseases
The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to advancing the development of treatment and diagnostic opportunities for rare disease patients through science-driven public policy. The Foundation does not speak for patients, but instead provides the training, education, resources and opportunities to make patient voices heard. By activating the patient advocate, the Foundation believes it can change public policy and save lives.
