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FOR IMMEDIATE RELEASE
June 10, 2008
CONTACT:
Carol Maravic
717-787-6725
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Senator Orie and Pro Football Hall of Fame Member Jim Kelly Call for PA to Adopt Improved Newborn Screenings Bill

Former Buffalo Bills quarterback Jim Kelly joined Sen. Jane Orie (R-Allegheny) at a press conference today at the State Capitol to urge members of the legislature to approve and fund the Newborn Child Testing Act (House Bill 883).  

The bill, which is similar to legislation that Sen. Orie introduced in the Senate, was approved unanimously by the House and the Senate Public Health and Welfare Committee, and is awaiting action by the Senate Appropriations Committee.   

Orie said the legislation would require all Pennsylvania hospitals to screen newborns for 28 new genetic conditions that are serious but treatable if caught early. 

The legislation would provide a $2 million appropriation to establish a program, track results and support four treatment facilities across Pennsylvania that would provide the treatment to newborns who suffer from the genetic conditions.   

"I'd like to especially thank Jim Kelly for joining us and offering his support for legislation to expand newborn screening," Orie said.  "He has been a steadfast supporter of this effort and helped to bring this issue to the national forefront." 

Kelly founded Hunter's Hope Foundation, in honor of his son, to increase awareness about newborn diseases and to raise funding for research on treatments and cures.   

Thanks in part to that foundation, newborn screening legislation was signed into law by President Bush on April 24, 2007.  The bill created national standards by expanding screenings of newborn babies and by authorizing a grant program to expand the funding to state and local health agencies. 

Pennsylvania began its first newborn screening program in 1965, and today requires screening for eight metabolic disorders and hearing impairments.  While most hospitals also offer screening for the other 20 "core" genetic conditions recommended by American College of Medical Genetics and endorsed by the March of Dimes and American Academy of Pediatrics, they are not required to do so by law.  That means screening for any non-required conditions could be potentially eliminated or reduced. 

"The legislation we are pushing for would require screening for hearing impairments and 29 genetic and metabolic conditions, which, if left untreated, could results either in long term disability or death," Orie said.  "And according to the Department of Health, the average lifetime medical costs for a child can exceed more than $1 million dollars."    

Treatment, on the other hand, can be as simple as a change in diet.  For some conditions, the parents must feed the newborn every few hours, not allowing the child to sleep through a regular meal period.  Other conditions may require less protein, or more fat, to provide sufficient calories for growth.   

"Each and every baby born in our state deserves the opportunity for a healthy start.  Newborn screening is a vital public health activity that provides early identification and treatment for infants affected by certain metabolic, hormonal, genetic and or functional disorders," Orie said. "The lack of a requirement that Pennsylvania newborns be screened for all 29 treatable disorders means that babies in our state are at risk of disability or even death.    It's time for Pennsylvania to act on behalf of our smallest and youngest citizens and their families by supporting this bill."