Clinton Calls for Final Passage of Legislation to Improve Newborn Screening

April 8, 2008

Urges Congress to Send the Newborn Screening Saves Lives Act to the President for Signature into Law

Washington, DC—Senator Hillary Rodham Clinton today called on Congress to pass legislation that will support vital research to improve newborn screening. At a press event with former Buffalo Bills Quarterback Jim Kelly; Dr. Alan Fleischman, Senior Vice President and Medical Director of the March of Dimes; and Jill Levy-Fisch, President of the Save Babies Through Screening Foundation, Senator Clinton urged final passage of the Newborn Screening Saves Lives Act, which would create the Hunter Kelly Research Program at the National Institutes of Health. The bill, which she introduced with Senators Christopher Dodd (D-CT) and Orrin Hatch (R-UT), passed the Senate last December and is expected to be approved by the House today.

“There are far too many tragic reminders of why every child must have access to early screening and treatment. Jim and Jill Kelly, Jill Levy-Fisch, and the March of Dimes have done tremendous work to promote vital newborn screening and research. Congress must now do its part and pass the Newborn Screening Saves Lives Act and I strongly urge the President to sign it into law so that the best screening methods, accurate diagnostic techniques, and advanced treatments are accessible to all families,” said Senator Clinton.

“It’s so easy to talk about the wins – whether football games or in business or in any other element of life,” said Kelly. “But it’s the losses that we learn from – and no loss compares with that of losing a child. That grief is nothing you ever want anyone to go through. That’s why newborn screening for ‘Every Child, Every Time, Everywhere’ is so critical.”

"The Newborn Screening Saves Lives Act is an investment in the health and the future of our children, and Senator Clinton played a critical role in authoring and securing approval of this important legislation,” said Dr. Jennifer Howse, president of the March of Dimes. “It is not just the March of Dimes that owes Senator Clinton our thanks, but families in every community across the country.”

“With all the statistics, politics, and government budgets, it is sometimes easy to overlook what newborn screening is all about--saving lives. Once this bill is approved by the House and the President signs it into law, state newborn screening programs will expand toward comprehensive universal newborn screening so that each and every baby born in the USA will have an equal opportunity for early diagnosis and lifesaving treatment. Most of all, what this means is that the new law will help American families at a time when they need it most,” said Jill Levy-Fisch, President of the Save Babies Through Screening Foundation.

The Newborn Screening Saves Lives Act would create the Hunter Kelly Research Program at the NIH. This program, named after Hunter Kelly, son of former Buffalo Bills Quarterback Jim Kelly and his wife, Jill, will continue vital research in improvements to newborn screening technology and treatments for conditions which can be detected through such screening, but currently have no effective medical interventions. In 1997, the Kellys established Hunter’s Hope Foundation after their infant son, Hunter, was diagnosed with Krabbe Leukodystrophy, an inherited, fatal, nervous system disease. The Foundation is the Kelly’s life long commitment to increase public awareness of leukodystrophies as well as to increase the likelihood of early detection and treatment.

Senator Clinton has long been an advocate for improving access to newborn screening, and has worked with Jim and Jill Kelly and the Hunters Hope Foundation to press for change at the federal level. In the 109th and 110th Congress, she introduced the Screening for Health of Infants and Newborns (SHINE) Act, to create a clearinghouse of newborn screening information to increase understanding of newborn diseases and screening services and improve efforts to develop new screening tools for additional life-threatening disorders. These provisions were incorporated into the Newborn Screening Saves Lives Act.

###