(April 24, 2008) Washington, D.C. – Congresswoman Lucille Roybal-Allard (CA-34) announced today the signing into law of legislation she authored to eliminate preventable newborn deaths and severe disabilities through the increased use of comprehensive and standardized newborn screening tests.

“I thank my colleagues for supporting this critical legislation,” said Congresswoman Lucille Roybal-Allard following the bill’s final passage in Congress on April 8. “With the passage of the Newborn Screening Saves Lives Act, this Congress has taken a giant step towards ensuring that parents and health providers are knowledgeable about newborn screening, and that babies receive the comprehensive and consistent testing they need.”

“I extend my sincere thanks to my House colleagues Michael Simpson, Tom Reynolds and Henry Waxman for their original co-sponsorship of the Newborn Screening Saves Lives Act. Their commitment and steadfast efforts have helped make possible the final passage of this significant piece of legislation. I also thank Senators Chris Dodd and Hillary Clinton for championing the Senate companion bill, which passed that body in December of 2007. I am also grateful to the coalition of public health groups, especially the March of Dimes, for working with us over the last four years on this critical issue. They are all to be commended for their dedication and commitment to the prevention and treatment of birth defects in our country.”

The Newborn Screening Saves Lives Act of 2007 (S 1858/HR 3825) establishes national newborn screening guidelines intended to make comprehensive newborn screening widely available throughout the country. The bill also provides federal funding to educate parents and healthcare professionals about the importance of newborn screening, and improves the systems for follow-up care for infants detected with an illness through the newborn screening tests. In addition, the bill requires the Centers for Disease Control and Prevention to ensure the quality of laboratories involved in newborn screening, and establishes a system for collecting and analyzing data that will help researchers develop better detection, prevention and treatment strategies.

Approximately five thousand babies are born each year in the United States with detectable and treatable diseases. Forty years ago, these infants’ disorders would have gone undetected until symptoms appeared, leading to possible death or lifelong disability. Today, a simple blood test can detect life-threatening genetic illnesses before any symptoms begin, allowing crucial time for early treatment to prevent long-term damage.

Unfortunately, there is great disparity from state to state in the quality and number of newborn screening tests an infant may receive. In 2004, the American College of Medical Genetics recommended that every baby born in the United States be screened for a minimum of 29 metabolic and functional disorders that include Phenylketonuria (a rare disorder that prevents the normal metabolism of protein foods) and sickle cell disease (an inherited blood disorder). However, only 19 states and the District of Columbia currently test for all 29 of the recommended disorders.

According to the March of Dimes, the lives of 500,000 newborns hang in the balance because they still are not being screened for the 29 core conditions. The tragic result is that hundreds of infants suffer lifelong disabling consequences or even death from otherwise treatable disorders.

“It is unacceptable that babies continue to be born in this country each year with diseases that can be detected by a simple blood test, and then treated to prevent serious complications,” Congresswoman Lucille Roybal-Allard said. “Our legislation is a major step towards correcting these disparities by encouraging all states to uniformly test for all recommended disorders and by providing resources for states to expand and improve their newborn screening programs. This bill will empower parents and health care professionals with knowledge about the importance of newborn screening and follow-up care, and has the potential to save millions of dollars in health care costs.”

Dr. Jennifer Howse, President of the March of Dimes, said: “The Newborn Screening Saves Lives Act is an investment in the health and the future of our children, and Congresswoman Roybal-Allard played a critical role in authoring and securing approval of this important legislation. It is not just the March of Dimes that owes Congresswoman Roybal-Allard our thanks, but families in every community across the country.”

The congresswoman’s home state of California currently requires that all newborns receive screening for 28 of the 29 disorders recommended by the American College of Medical Genetics (ACMG) and endorsed by the March of Dimes and the American Academy of Pediatrics. In addition, California passed a state law adding the final condition, which is hearing screening, to the state newborn screening panel. Efforts are currently underway to implement this law more fully to ensure that all newborns receive hearing screening in the state.

For her leadership on numerous bills to improve the health of mothers, infants, and children, Congresswoman Lucille Roybal-Allard has been honored by the March of Dimes and the National Healthy Mothers, Healthy Babies Coalition. The organizations recognized the congresswoman for her efforts to promote newborn screening as well as the "Folic Acid Education Act of 2000." The folic acid law, which was sponsored by the congresswoman, directed the Centers for Disease Control and Prevention to undertake a public education campaign on the importance of folic acid in preventing birth defects. In addition, the March of Dimes noted the congresswoman’s continued leadership as a member of the Appropriations Health Subcommittee in securing federal funding for folic acid education, newborn screening and prematurity research.