Congresswoman Lucille Roybal-Allard (CA-34) and Congressman Mike Simpson (ID-02) introduced legislation this week to eliminate preventable newborn deaths and severe disabilities through the increased use of comprehensive and standardized newborn screening tests.

“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.  “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, our legislation would help increase awareness among doctors and parents about the tremendous importance of newborn screening and the need for immediate and coordinated follow-up care.”

Approximately four thousand babies are diagnosed each year in the United States with detectable and treatable diseases through the process of newborn screening.  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 detects these life-threatening genetic illnesses before any symptoms begin, allowing crucial time for early treatment to prevent long-term damage. 

“Over four million babies are born in the United States each year. Using a blood sample from the newborn’s foot identifies infants with genetic or other conditions that can be treated effectively,” Congressman Simpson said. “This bill gives parents additional resources so that early identification and early treatment can be available for their baby.”

In 2004, the American College of Medical Genetics recommended that every baby born in the United States be screened for a minimum of 29 specific disorders that include: Phenylketonuria (a rare disorder that prevents the normal metabolism of protein foods); sickle cell disease (an inherited blood disorder); and homocystinuria (an amino acid disorder).  Unfortunately, there is great disparity from state to state in the quality and number of newborn screening tests an infant may receive.  As a result, the March of Dimes estimates that as many as one thousand babies born every year in the United States do not receive comprehensive newborn screening that includes their particular disorder.

“We have the ability to make a profound difference in the lives of newborns and their families through early diagnosis of certain serious illnesses,” Congresswoman Lucille Roybal-Allard said.

Currently only 11 states and the District of Columbia test for all 29 of the recommended disorders. California screens for 26 of the 29 disorders for which the American College of Medical Genetics (ACMG), the American Academy of Pediatrics and the March of Dimes recommend screening.  Two additional disorders, cystic fibrosis (a hereditary disease that affects the lungs and digestive system, causing progressive disability and early death) and Biotinidase Deficiency (an inherited disorder that can lead to seizures, developmental delay and hearing loss) are newly required by law and will be added to the panel of required screening tests this year.

The Newborn Screening Saves Lives Act of 2007 (HR 1634) would establish 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 health care 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. 

The measure, which is endorsed by the March of Dimes and the Association of Public Health Laboratories, is the House companion to S.634, introduced last month by Senators Chris Dodd of Connecticut and Orrin Hatch of Utah.  Congresswoman Lucille Roybal-Allard has been honored by the March of Dimes and the National Healthy Mothers, Healthy Babies Coalition for her leadership on numerous bills to improve the health of mothers, infants, and children, including the newborn screening initiative and the "Folic Acid Education Act of 2000," which directed the Centers for Disease Control and Prevention to undertake a public education campaign on the importance of folic acid in preventing birth defects.
 

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