Georgia Newborn Screening Legislation
February 27, 2020
The Honorable Sharon Cooper
436 State Capitol
Atlanta, GA 30334
RE: HB 1054 – Newborn Screening
Dear Representative Sharon Cooper,
As patient organizations representing patients in Georgia and across the United States, we write today to thank you for your leadership on newborn screening and express our support for HB 1054. Every year, millions of babies born in the U.S. are screened for a variety of potentially devastating and fatal diseases and conditions that might otherwise go undetected. These simple screens help provide lifesaving early identification allowing for the earliest diagnosis and access to potentially life-saving treatments for babies. In many cases, early detection can avert costly and risky medical procedures later in life.
HB 1054 provides a thoughtful approach to expanding newborn screening in Georgia that ensures that all federal Recommended Uniform Screening Panel (RUSP) conditions are added to the screening panel in a reasonable amount of time with the appropriate funding. 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 Georgia to take advantage of the work done by these medical experts at the federal level, we can remove the obstacles to needed testing and minimize the suffering that comes from untreated diseases.
Georgia passed much needed funding in 2019 to add four new diseases to its newborn screening panel. While securing this funding was a great achievement, it also highlighted the inconsistency in Georgia’s newborn screening program with one of the four additions having been recommended seven years ago. This legislation would empower the Georgia Department of Public Health (DPH) to ensure that the state implements new screening recommendations within two and a half years. It would also codify the existing DPH Advisory Committee and require it to consider new diseases added to the federal Recommended Uniform Screening Panel (RUSP) within one year, ensuring babies born in Georgia have the same opportunity for diagnosis and treatments as babies born across state lines.
For these reasons, we are proud to support HB 1054. We are grateful for your leadership on this issue and look forward to working with you and your offices to ensure these bills become law.
Sincerely,
EveryLife Foundation for Rare Diseases