HARRISBURG—Today the Senate unanimously approved legislation authored by Senator John DiSanto (Dauphin/Perry) to ensure children born in Pennsylvania are comprehensively screened for all recommended disorders so that newborns may receive prompt treatment and prevent instances of permanent disability or even death.
Currently, the Department of Health administers the 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 the full panel while others do not.
Senator DiSanto’s constituent Lesa Brackbill of Hershey experienced firsthand how the health of newborns may be dependent on which hospital at which a baby is born after losing her young daughter, Tori, in 2016 when she was only 20 months old 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 has partnered with Senator DiSanto on Senate Bill 983 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 legislation also empowers the advisory board to add any clinically recommended disorders for screening in the future without being subject to limitations in the Department of Health’s annual budget.
“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. “No child should die or suffer when its possible to detect early and treat the disorder, and it’s my honor to join Lesa in protecting the lives of Pennsylvania’s newborns.”
The bill now advances to the House of Representatives for consideration.
CONTACT: Chuck Erdman 717-787-6801 cerdman@pasen.gov