Lockport Union-Sun & Journal Online

September 19, 2013

Kelly, Schumer team up for newborn testing

BY JOE OLENICK joe.olenick@lockportjournal.com
Lockport Union-Sun & Journal

Lockport Union-Sun & Journal — It’s not Kelly to Reed, but the Kelly to Schumer connection is working toward something more important than winning football games.

Former Buffalo Bills and Hall of Fame quarterback Jim Kelly and U.S. Sen. Charles Schumer launched their fight for passage for the Newborn Screening Saves Lives Reauthorization Act of 2013. The legislation would extend federal funding and expand newborn testing for diseases, especially ones that could be fatal if not diagnosed and treated early.

The legislation ensures federal funding so newborns can receive a blood test for fatal diseases that, if caught early, can be diagnosed and treated with a greater chance of success. If the bill is not reauthorized by Sept. 30, the federal funding for newborn screenings could end, Schumer said.

“The title of this bill tells all,” he said.

Last week, Rep. Chris Collins, R-Clarence, held a House of Representatives briefing on the Act with Kelly. Collins co-hosted the briefing with Rep. Lucille Roybal-Allard, D-Calif., who is the congressional sponsor of the legislation.

“I am glad to support Jim Kelly and the Hunter’s Hope Foundation in advocating for the importance of passing the Newborn Screening Saves Lives Reauthorization Act,” Collins said. “This legislation, which I am a proud co-sponsor of, will positively impact families and children across the country by providing the necessary funding for screening, counseling and other services related to heritable disorders.”

Kelly isn’t just known for what he’s done on the field but off it as well with his work for Hunter’s Hope. The organization was established to get out information, build support and aid research with respect to Krabbe Disease and related Leukodystrophies. The group works to broaden public awareness for such diseases so early detection and treatment is possible.

Kelly’s son Hunter died at 8-years-old in 2005 from a fatal genetic disease that, if caught early, can be treated. Kelly and his wife Jill became advocates for newborn testing when his son was diagnosed with Krabbe Leukodystrophy.

“We don’t want to go backwards,” Kelly said in a conference call with reporters Wednesday. “Every child deserves a fair chance at a healthy life right from the very start.”

Schumer said the legislation would expand upon existing screenings to include testing for additional diseases and to make testing universal and accurate in all states. It would also increase education for parents and medical providers about the necessity of these tests and improve follow-up care.

Medical experts believe that early detection of many diseases leads to better treatment and care for newborns, can lessen serious and often fatal effects and potentially save lives, Schumer said.

Schumer said in Western New York there were 43,196 births between 2008-10 and an estimated 2,873 positive screenings. Niagara County had 451 positive screenings in its 6,782 births during the same time period.

“Fortunately, through these screening efforts, we catch thousands of infants each year in New York who have manageable and treatable conditions, but parts of the program are at risk if federal funding for these efforts is shut off,” Schumer said.

Prior to passage of the 2008 legislation, the number and quality of screenings varied widely from state to state. In 2007, only 10 states and the District of Columbia required infants to be screened for all “core conditions” recommended by the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children. Now, 44 states and DC require testing of at least 29 of the 31 treatable core conditions. By the end of 2013, New York will be first state to test for ALD, a nervous system disorder inhibiting transmission of signals amongst nerve cells.

The Senate’s Health, Education, Labor and Pensions committee will hold a Sept. 26 hearing on the bill. Action is expected shortly thereafter, Schumer’s office said.

Contact reporter Joe Olenick at 439-9222, ext. 6241 or follow him on Twitter @joeolenick.