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Congressman Chris Collins

Representing the 27th District of New York

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Kelly goes to Washington to push for newborn screening

Sep 18, 2013
In The News
WASHINGTON – Inspired by the memory of his late son, Buffalo Bills great Jim Kelly returned to Capitol Hill on Wednesday to push Congress to renew legislation that helps states to expand their newborn health screening programs.
And he won bipartisan support for his effort, as Rep. Chris Collins, R-Clarence, and Sen. Charles E. Schumer, D-N.Y., both met with him and pledged to do what they can to get the measure passed.
“The bottom line is that all states need to be screening for as many diseases as possible,” Kelly said. “Federal support, including the Newborn Screening Saves Lives Reauthorization Act, can help ensure that newborn screening in the United States continues to be a priority so that future generations do not have to suffer and die needlessly, like my son Hunter and so many others.”
Hunter Kelly died in 2005 at age 8 of Krabbe disease, an inherited disorder that leads to fatal damage of the nervous system.
Jim Kelly and his wife, Jill, have devoted much of their time in recent years to the Hunter’s Hope Foundation, which aims to broaden public awareness of Krabbe disease and other rare conditions and to increase funding for research and testing.
Kelly’s efforts helped lead to the passage of the Newborn Screening Saves Lives Act five years ago. That legislation is set to expire at the end of this year, prompting Kelly to travel to Washington to press for its renewal.
The Hall of Fame Bills quarterback held a briefing to discuss the issue in a House conference room and then joined Schumer for the senator’s weekly conference call with reporters.
After the briefing, Collins said he expects Congress to reauthorize the bill by the end of the year, probably in tandem with a number of other, similar measures.
“I think this is bipartisan,” said Collins, who said the bill “will positively impact families and children across the country by providing the necessary funding for screening, counseling and other services related to heritable disorders.”
Similarly, Schumer voiced support for the bill, which authorizes $25.8 million in annual funding for newborn screening programs through 2018.
“This year marks the 50th anniversary of newborn screening in the United States – and Jim Kelly and I are fighting to make sure that on the 100th anniversary, we are doing more of these tests and saving more lives,” Schumer said.
Kelly said he’s also pushing states to expand the number of conditions for which they test newborns, given that early testing and treatment saves lives.
“I’m not a politician. I’m not a doctor. I’m a father, and I know enough about this to be dangerous,” Kelly said. “But I’m passionate about what I believe in, and I’m not stopping.”