HARRISBURG—Legislation introduced by Senator John DiSanto (Dauphin/Perry) to ensure newborn babies are comprehensively screened for all recommended disorders was unanimously approved in the House of Representatives today and is now on its way to the Governor’s desk. Newborn screening is essential for early detection so prompt treatment can be provided to prevent instances of permanent disability or even death. The Governor has ten days to act on Senate Bill 983.
The Department of Health administers Pennsylvania’s Newborn Screening Program and maintains a short list of mandatory screenings and a longer list of optional ones whereby some hospitals choose to screen for all disorders while others do not.
Senator DiSanto’s Hershey constituent Lesa Brackbill experienced firsthand how the health of newborns is dependent on which hospital at which a baby is born after losing her young daughter, Tori, in 2016 before the age of two after a battle with Krabbe—a treatable disease when diagnosed at birth.
The lack of a comprehensive screening mandate cost Tori her life, and Lesa partnered with Senator DiSanto on this legislation to ensure health providers screen every child equally for every disorder recommended by the federal government and the Pennsylvania Newborn Screening and Technical Advisory Board. The bill also empowers the advisory board to add clinically recommended disorders for screening in the future without being subject to Department of Health budget limitations.
“Lesa has worked tirelessly over the past four years to improve Pennsylvania’s newborn screening program so that we may prevent similar tragedies from happening to other young families and newborns,” DiSanto said. “It has been my honor to join Lesa in protecting the lives of Pennsylvania’s newborns by detecting and treating disorders early.”
“Our family is eternally grateful to Senator DiSanto, the Pennsylvania General Assembly, the Newborn Screening Advisory Board, and all those on our ‘team’ who made this possible,” said Lesa Brackbill. “This legislation can’t save our daughter, but it can and will save the lives of babies yet to be born in Pennsylvania and ensure that fewer families endure the loss of a child. That means the world to us.”
CONTACT: Chuck Erdman 717-787-6801 cerdman@pasen.gov