06/21/04 - SCHUMER AND JIM & JILL KELLY UNVEIL NEW 4-POINT PLAN TO SCREEN NEWBORNS FOR DISEASES

New federal approach would devote more funds for screening children and educate parents about the necessity and availability of such tests

US Senator Charles E. Schumer today teamed up with Buffalo Bills great Jim Kelly and his wife Jill to unveil a four point plan to ensure that babies born in all states will receive the necessary blood tests required to fully screen them for a range of diseases. Medical experts believe that early detection of many diseases leads to better treatment and care for newborns. The Kellys’ son Hunter has Krabbe Disease, a genetic illness that does not allow for proper nerve development in the brain but with early detection Krabbe can be treated with a cord blood transplant.

"Not only was Jim Kelly a hero on the field, but he is also a special man and father," Schumer said. "By taking the lead to make sure that all babies receive proper screening for diseases as newborns, Jim and Jill are using both their celebrity and their personal experience with Krabbe Disease in a positive way. I am thrilled to work with them so that we can help educate other families about the importance of getting their children thoroughly tested at a very young age."

Early detection and treatment of many diseases can lead to a much higher quality of life and can even add years to the lives of children who have genetic and degenerative diseases. Currently, newborns in some states are screened for as few as four diseases while others test for as many as 48, meaning that babies born in some states could be at a disadvantage when it comes to detecting and treating diseases.

Jim and Jill have started the Hunter's Hope Foundation to raise awareness and funding to research this disease which is passed on by both the mother and father. Hunter's Hope is a nationally recognized foundation that has been instrumental in bringing the newborn screening issue to the national stage.

Earlier this month, Schumer met with Jim Kelly in Washington DC to discuss ways in which the federal government can help parents like Jim and Jill detect illnesses in their children at the earliest possible stage. Schumer and the Kellys today unveiled a four point plan to improve screening throughout the country by devoting more federal money for the testing of newborns and by increasing awareness among parents of the necessity and availability of these tests. Specifically, the plan would:

• Provide $25 million to the states for programs that encourage screening. Schumer is urging the Senate Appropriations Committee to fully fund Title XXVI of the Children's Health Act of 2000 by providing $25 million to grants to the states. The grants would be used to assist local and state public health agencies with providing screening and with counseling and health care for newborns who are at risk for hereditary diseases.
• Pass the Newborn Screening Saves Lives Act. Schumer is co-sponsoring the Newborn Screening Saves Lives Act, which would require the Secretary of Health and Human Services (HHS), Tommy Thompson, to award new grants to improve newborn screening, to increase awareness of screening tests available for expecting parents and to train screeners. The measure is being sponsored by Senators Christopher Dodd and Mike DeWine and would add $15 million in new grant programs.
• Increase Awareness about Screening Tests Available. Many expecting parents are not made aware of additional screening tests that are available beyond what is required by state law. Because of the large gap between the number of tests required in individual states, Schumer is working to improve and standardize screening notification nationwide. Schumer is working with the Advisory Committee on Heritable Diseases and Genetic Disorders in Newborns & Children in HHS's Maternal and Child Health Bureau to find ways to increase education and make it mandatory for states to provide information including a comprehensive list of tests to every expecting parent.
• Encourage New York State to require testing notification now. Schumer and the Kellys urged the New York State legislature to pass a law similar to one recently passed in New Jersey that would require that parents be notified about supplemental screening tests that are available.

The Kellys’ son Hunter has Krabbe Disease, a genetic disease passed on by both the mother and father that does not allow for proper nerve development in the brain. Each nerve in the body is surrounded by a myelin sheath which carries the electrical impulses to every other nerve. In Krabbe Disease, this sheath does not form correctly, preventing a full and proper message to be carried to other nerves. Although there is no newborn screening test today for Krabbe, one is in the pipeline and due to be available within a few years. Schumer said that increased testing of newborns will impact millions of children at risk for this and other types of hereditary diseases that can be screened for and treated as early as possible.

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