Yesterday, the EveryLife Foundation for Rare Diseases applauded the signing of HB 927, a bill that will help save the lives of more than 100 babies born in Mississippi each year. The law, referred to as RUSP alignment legislation, implements a three-year timeline in which screening must begin for new conditions added to the federal Recommended Uniform Screening Panel (RUSP) and ensures that the Mississippi Department of Health provides a report on the status of addition every 12 months the addition is delayed. Mississippi is the first state to adopt RUSP alignment legislation this year and the eighth 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 Mississippi will keep up with those developments,” said Annie Kennedy, EveryLife Foundation for Rare Diseases chief of policy, advocacy, and patient engagement. “We are grateful for the Mississippi Assembly for passing, and to the Governor for signing this impactful legislation, that will ensure Mississippi 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 Mississippi each year benefit from the early detection and delivery of life-saving treatments. Yet, as new technology allows for screening of more diseases, Mississippi 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 partnered with more than 40 patient advocacy organisations to support the legislation, including Mississippi Metabolics. The bill was championed by Representative Missy McGee and Senator Chris Johnson and passed unanimously in both the House and Senate.

“I feel incredibly hopeful by the recent passage of RUSP alignment legislation and the lifesaving implications that it will have for newborns in Mississippi. Our state has been a leader for newborn screening initiatives in the past, and I commend our legislators and governor for continuing to ensure babies born in Mississippi are diagnosed and treated within days or weeks of birth,” said Shannah Hudson, founder of Mississippi Metabolics Foundation and mother of a child diagnosed with glutaric acidemia type 1. “This law will provide early diagnosis and treatment for our newborns, preventing debilitating and life-threatening consequences from treatable diseases. As a parent of a child diagnosed and saved by newborn screening legislation in Mississippi, I know firsthand the blessings that come from a speedy diagnosis and treatment and want every family to be given the same lifesaving opportunities which they deserve.”

The EveryLife Foundation’s newborn screening advocacy program is made possible by the support of Sanofi Genzyme, and other industry partners including Alexion Pharmaceuticals and Orchard Therapeutics.

To learn more about the legislation and how to support newborn screening, visit RareScreening.org.

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