Newborn screening legislation backed by Jim Kelly passes House and Senate

Program to be named for Hunter Kelly

By Douglas Turner - NEWS WASHINGTON BUREAU
Updated: 04/09/08 9:10 AM

 

WASHINGTON — Former Buffalo Bills quarterback Jim Kelly was praised Tuesday as a leader who transformed a tragedy — the death of his son, Hunter — into a national movement to medically screen all newly born children.

Sens. Hillary Rodham Clinton and Chris Dodd, and Rep. Thomas M. Reynolds joined Kelly and his wife, Jill, to mark Tuesday’s House passage of legislation Kelly has sought for almost a decade.

The legislation creates national standards for screening newborns, provides $15 million a year for information programs and $5 million to evaluate the screening programs, and creates a national advisory committee on ailments that newborns and children can inherit from their parents.

“Through this legislation,” Kelly said, “we’re going to change the lives of thousands of kids.”

Hunter Kelly died in 2005, at age 8, from Krabbe’s disease, a progressive nervous system disorder. Jim Kelly said he did not find out his son had the illness until he was four months old. The Kellys sought a medical examination after their son “cried 22 hours out of every 24.”

Had Hunter been diagnosed for the ailment at birth, his life might have been saved.

Clinton, D-N.Y., said the bill, which has passed the Senate, advances work begun in 1957 by the late Dr. Robert Guthrie of Buffalo, who was a faculty member of the University of Buffalo Medical School.

Guthrie developed an inexpensive test for a hereditary disease called phenylketonuria, or PKU, which causes severe brain damage and eventual mental retardation. The screening procedure has prevented the diseas e in tens of thousands of children. Guthrie died in 1995.

“I have come to view Jim Kelly as the quarterback of this important cause,” Clinton said, taking a break from her presidential campaign and a hearing at which she questioned Gen. David Petraeus about the troop surge in Iraq.

Kelly thanked Reynolds, R-Clarence, an original co-sponsor of the bill, whom he described as “a close personal friend,” for helping him bring the need for early-childhood screening to the attention of Clinton and other congressional leaders.

Kelly said: “It’s so easy to talk about the wins — whether football games or in business or in any other element of life. 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 also provides $5 million a year for an information clearinghouse and another $5 million for quality control in screening laboratories.

When established, it will be known as the Hunter Kelly Newborn Screening Program.

The March of Dimes, which supported the legislation, said screening programs vary widely. Pennsylvania, for example, looks for only nine treatable diseases in newborns, while New York mandates tests for 29. Science has targeted as many as 44 possible treatable diseases in newborns.

Clinton and Dodd, D-Conn., were the original Senate sponsors. In the House, the sponsor is Rep. Lucille Roybal-Allard, D-Calif.

In remarks just before passage Tuesday, Reynolds said, “It is my sincere hope that through the grants and research funding . . . every state will be able to coordinate their newborn screening tests in order to bring consistency across the country.”

The bill already has passed the Senate unanimously. But some grammar and deadlines in an earlier Senate version must be corrected before the legislation is sent to President Bush for his signature.

dturner@buffnews.com

WASHINGTON, April 8, 2008, 2008 /PRNewswire-USNewswire via COMTEX/ -- Legislation to Improve Screening of Newborns Vulnerable for Rare Metabolic Conditions

Jim Kelly, former Buffalo Bills quarterback who led the Bills to four consecutive Super Bowls, will be on Capitol Hill on Tuesday, April 8, 2008, to meet with Members of Congress asking them to approve and fund the Newborn Screening Saves Lives Act (S.1858).

Kelly will also participate in a press event with Senators Christopher Dodd and Hillary Clinton and Congressman Thomas Reynolds. Additional speakers include 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.

Kelly and his wife, Jill, established the Hunter's Hope

Foundation when their son was diagnosed with Krabbe four months after he was born in seemingly perfect health. Despite being told his health would decline rapidly and he would probably not live past fourteen months, Hunter lived eight years.

"It's so easy to talk about the wins - whether football games or in business or in any other element of life," says 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."

Newborn screening is a vital public health activity that is essential for preventing the devastating consequences of certain metabolic, hormonal, genetic and or functional disorders not clinically recognizable at birth. If all infants are diagnosed and treated early, serious problems including disability and even death can be averted. Disparities among states screening tests persist, which could have dire consequences for an infant diagnosed with one of these rare and extremely serious birth defects. Early diagnosis and proper treatment are essential and can make the difference between lifelong impairment and healthy development.

The Newborn Screening Saves Lives Act lays the groundwork for national screening guidelines and authorizes federal support for assistance to states to improve their programs, develop educational materials for parents and health professionals and provide follow-up and treatment for infants when disorder is detected.

"National guidelines will create greater consistency across state programs," says Dr. Alan Fleischman, senior vice president and medical director of the March of Dimes. "That's priority one. But we must also ensure that families and health professionals have the information necessary for follow-up and treatment. Timely referral to experts knowledgeable about how best to manage the infant's condition is essential."

The March of Dimes estimates that between 16,000 and 20,000 infants in the U.S. are affected annually with one of the 29 treatable conditions for which the American College of Medical Genetics recommends screening. Of these infants, approximately 4,000 have a metabolic disorder and 12,000 to 16,000 have a hearing impairment. The average lifetime medical costs for a child who suffers from an undetected and untreated metabolic disorder can exceed more than $1 million dollars. Treatment, on the other hand, can be as simple as a change in diet.

"With all the statistics, politics and government budgets, it is sometimes easy to overlook what newborn screening is all about - saving lives," says Jill Levy-Fisch, president of Save Babies Through Screening Foundation. "This bill will help bolster state programs and most of all, it will help families."

Senators Christopher Dodd (D-CT), Orrin Hatch (R-UT) and Hillary Clinton (D-NY) sponsored the Newborn Screening Saves Lives Act (S. 1858), which, on December 13, 2007, the U.S. Senate approved by unanimous consent. In the House of Representatives, the bill (H.R. 3825) was sponsored by Representatives Lucille Roybal-Allard (D-CA), Mike Simpson (R-ID), Tom Reynolds (R-NY), and Henry Waxman (D-CA). The House Energy and Commerce Committee favorably reported it last month, and it is scheduled to be considered by the full House on Tuesday, April 8. Due to slight technical differences between the Senate and House versions of the measure, it will have to be considered by the Senate once more before being sent to the President.

About the March of Dimes Foundation:

The March of Dimes is a national voluntary health agency whose volunteers and staff work to improve the health of infants and children by preventing birth defects, premature birth and infant mortality. Founded in 1938, the March of Dimes funds programs of research, community services, education, and advocacy. For the latest resources and information, visit marchofdimes.com or nacersano.org.

About Hunter's Hope Foundation:

Hunter's Hope was established in 1997 by Pro Football Hall of Fame member and former Buffalo Bills Quarterback, Jim Kelly, and his wife, Jill, after their infant son, Hunter, was diagnosed with Krabbe leukodystrophy, an inherited, fatal, nervous system disease. The Foundation is the Kelly's lifelong commitment to increase public awareness of leukodystrophies as well as to increase the likelihood of early detection and treatment. The major goal and highest priority of the Hunter's Hope Foundation is that through media awareness, every newborn in every state will be tested for every possible disease - saving the lives of thousands of children through the newborn screening program. Another goal of the Foundation is to fund research efforts to identify new treatments, therapies, and a cure for Krabbe and other leukodystrophies.

About Save Babies Through Screening Foundation

The Save Babies Through Screening Foundation is a non-profit volunteer advocacy organization whose mission is to improve the lives of babies by working to prevent disabilities and death resulting from disorders detectable through newborn screening. Save Babies Through Screening Foundation, is formerly known as the Tyler For Life Foundation, and is a leader in the national grass roots movement to expand newborn screening. For more information, visit the Save Babies Through Screening Foundation website at www.savebabies.org or call toll-free at 1-888-4LIFE-83.

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