HARRISBURG—Today the Senate Aging and Youth Committee advanced legislation authored by Senator John DiSanto (Dauphin/Perry) to strengthen the Commonwealth’s newborn screening program to better protect infants from rare diseases. Newborn screening performs a critical role in early recognition and treatment of genetic diseases and disorders which, without intervention, may result in permanent disability or death of a child.
Under current law, the Department of Health 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 many others do not. This has created a system in which the testing of newborns is dependent on where they are born in the state or whether their parents have knowledge of these screening panels.
DiSanto’s Senate Bill 983 seeks to ensure children born in Pennsylvania are screened equally for every disease on the federally recommended screening panel, as well as those conditions recommended by Pennsylvania’s Newborn Screening and Technical Advisory Board. The legislation makes the current supplemental screening panel mandatory and empowers the advisory board to add any clinically recommended disorders for screening in the future.
DiSanto offer this solution after meeting with constituent Lesa Brackbill of Hershey, who tragically lost her young daughter, Tori, before the age of two. The Krabbe Disease that claimed Tori’s life was treatable had it been detected early; however, it was not because Pennsylvania’s program did not mandate screening for this disease.
“I commend Lesa for her leadership and passionate advocacy over the past four years. She has worked tirelessly to improve Pennsylvania’s deficient screening program that failed to protect her child,” DiSanto said. “My legislation seeks to prevent similar tragedies from happening to other young families and newborns.”
With committee passage, Senate Bill 983 moves to the full Senate for consideration.
CONTACT: Chuck Erdman 717-787-6801 cerdman@pasen.gov