Today, the EveryLife Foundation for Rare Diseases applauded the signing of HB567, a bill that will help save the lives of more than 700 babies born in Georgia each year. The legislation, which was signed into law on May 4th, requires the state to screen newborn babies for any disorder on the federal Recommended Uniform Screening Panel (RUSP), implements a timeline in which the screening must begin, and ensures that resources will be available to fund all conditions added to the RUSP in the future.
“Each year, new screening tests are developed to diagnose diseases before it is too late to receive treatment. RUSP alignment legislation will require Georgia to keep pace with science,” said EveryLife Foundation Chief of Policy and Advocacy Annie Kennedy. “We have seen a growing interest in states passing this common-sense legislation and families are counting on it to enhance and expand newborn screening. We are grateful to the Georgia Assembly for passing, and to the Governor for signing, this impactful legislation. This bill will ensure that babies born in Georgia have the same opportunity for diagnosis and treatments as babies born across state lines.”
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 700 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.
The EveryLife Foundation worked alongside more than 50 patient advocacy organizations to support the legislation. The bill was championed by Georgia State Representatives Sharon Cooper, Jan Jones, Teri Anulewicz, Katie Dempsey, and Chuck Martin, as well as State Senator Dean Burke.
“I am so grateful to our state leaders for doing the right thing and passing this life-saving newborn screening legislation. Georgia parents deserve access to diagnosis and treatment for their babies at the earliest moment possible, so they don’t waste years waiting for a diagnosis when every day counts,” said Elizabeth Snarey, parent of a child living with MPSII. “The science exists. We know how to save these babies’ lives. We need our laws to keep up with the science.”
The EveryLife Foundation’s newborn screening advocacy program is made possible by the support of Sanofi Genzyme, and other industry partners including Alexion Pharmaceuticals, Pfizer, bluebird bio, Novartis Gene Therapies, and Sarepta Therapeutics.
To learn more about the legislation and how to support newborn screening, visit RareScreening.org.
