"A child's health shouldn't be influenced by a line drawn on a map," said Dodd. "Newborn screening is a valuable tool in efforts to treat children's health problems, and - as such - we need to ensure that every family and every health provider all across America has access to information about this critical resource. This is one test where failing shouldn't be an option."

Each year, over four million infants have blood taken from their heels to detect congenital conditions such as L-CHAD, a disorder that prevents the body from turning fat into energy, and sickle-cell diseases. As a result, approximately 1,000 infants each year are diagnosed with one of these disorders and can therefore receive treatment to help protect their lives and long-term health. However, each year more than 2,000 babies are estimated to be born with potentially detectable disorders that go undiagnosed because they are not screened - placing them at risk of disability or death from a condition which could have been treated had it been detected immediately after birth.

The Newborn Screening Saves Lives Act seeks to address the shocking lack of information available to health care professionals and parents about newborn screening. The bill would authorize grants to provide education and training to health care professionals, state laboratory personnel, families, and consumer advocates. The bill would also provide funds for grants to develop a coordinated system of follow-up care for those children diagnosed with a disorder detected through newborn screening, and would supplement ongoing efforts to establish national recommendations for newborn screening programs.

Although recent advances in medical technology have made it possible to screen for at least thirty genetic and metabolic disorders, states often lack the resources or the equipment to conduct a full battery of tests. Only Connecticut and Massachusetts screen children for thirty disorders; the vast majority of states test for eight or fewer. Many health care professionals, and many more parents, are unaware of the possibility of screening for disorders beyond those required by their state.

Earlier this year, Senator Dodd, who chairs the Senate Subcommittee on Children and Families, joined with Senator Mike DeWine (R-Ohio) to write a letter to the General Accounting Office (GAO) calling for a study of each state's newborn screening programs. The letter requested the GAO to report on individual states' efforts; how they test for disorders; the coordination among families, physicians, and laboratories involved; and the procedures and quality of data. The letter also requested a report on how states protect the privacy of this sensitive and critical health information. In June, Senator Dodd chaired a hearing of the Subcommittee on Children and Families, which received testimony on this issue from administration officials, parents, and health care professionals.

Oregon will be adding CAH to its screening program in January, 2003 and New York should begin CAH screening this month.

Utah needs our help now! They are looking at expanding their newborn screening program, but only to include those diseases that can be screened using Tandem Mass Spectrometry (MS/MS). CAH cannot be screened for with this equipment, so it will not be added at this time. CARES has written to V. Fan Tait, M.D., Director of CSHCN, Utah Department of Health, 44 North Medical Drive, Salt Lake City, Utah 84113 urging Utah to implement a comprehensive newborn screening expansion that also includes those diseases that cannot be screened for using MS/MS such as CAH. We strongly urge our families to write to Dr. Tait, even if you do not live in Utah. She needs to hear from families who have experienced the devastation and trauma of having a child with CAH detected late. Please help if you can.