HARRISBURG—Senator John DiSanto (Dauphin/Perry) announced today his Senate Bill 983 which seeks to strengthen the Commonwealth’s newborn screening program to better protect infants from rare diseases. Newborn screening performs a critical role in the early recognition and treatment of genetic diseases and disorders which, without intervention, may result in permanent disability or the 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 health of newborns is dependent on where they are born or whether their parents have knowledge of these diseases.
Doctor Jerry Vockley, chief of Medical Genetics and Director of the Center for Rare Disease Therapy at UPMC Children’s Hospital of Pittsburgh, said “the current newborn screening program suffers from inadequate funding from Department of Health budget restrictions. Senator DiSanto’s legislation creates a newborn screening fee to bring financial stability to the program as is the practice in 47 other states.”
Dr. Vockley continued, “The legislation also addresses the problematic structure of the mandated and optional screenings as it calls for a single panel of tests based on the best scientific evidence available. Newborn screenings—a simple and inexpensive test given at birth—saves lives and all babies should share in that benefit.”
Senator DiSanto decided to offer SB 983 after meeting constituents who tragically lost their 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 of Pennsylvania’s deficient newborn screening program.
Senator DiSanto said, “I greatly admire the Brackbill family’s resiliency to turn the tragedy of losing a child into passionate advocacy. We must ensure every newborn in Pennsylvania is screened equally and for every federally recommended disorder so that every child is able to receive the necessary life-saving treatments.”
Tori’s mother, Lesa Brackbill, said “we are grateful Senator DiSanto has taken this issue seriously and put actions to his support by introducing this legislation. No parent should have to lose a child to a treatable rare disease—like we did—and that is why we fight for equal and improved newborn screening in Pennsylvania. We can do better.”
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