Across our nation on May 14, America's mothers were honored with cards, gifts, flowers and phone calls.  But for any mother the most precious gift of all is a strong and healthy baby.  To help ensure that mothers receive that most precious of gifts, I introduced the Newborn Screening Saves Lives Act of 2006 (HR 5397).

Newborn screening is a public health intervention that involves a simple blood test used to identify many life-threatening genetic illnesses before any symptoms begin. 

Approximately five thousand babies are born each year in the United States with detectable and treatable disorders.  Forty years ago, these disorders would have gone undetected until symptoms appeared.  As a result, these children unnecessarily died or suffered lifelong disabling consequences.

Today these severe disorders - mostly inborn errors of metabolism - can be detected in newborn babies, and treated in time to prevent serious complications.  But due to the fact that national newborn screening guidelines are not available in this country, there is great disparity and variation from state to state in the quality and number of newborn screening tests an infant may receive.  For example, while California state law requires newborn screening tests for more than 40 disorders, some states require as few as seven newborn screening tests.  Consequently, each year, approximately two thousand infants in this country are permanently disabled or die from otherwise treatable disorders.    

The Newborn Screening Act of 2006 seeks to eliminate these unnecessary deaths and severe disabilities 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.  The measure also provides funding to educate parents and health care professionals about the advisability 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.

Passage of the Newborn Screening Saves Lives Act of 2006 in Congress would help to ensure that parents and health providers are knowledgeable about newborn screening, and that babies receive the comprehensive and consistent testing they need. 

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In summary, Congresswoman Roybal-Allard's Newborn Screening Saves Lives Act will:

• Authorize $15 million in 2007 (and such sums as may be necessary in 2008-2011) for grants to:
  • Educate and train health care professionals and state laboratory personnel in newborn screening and relevant new technologies;
  • Educate and inform parents, families, and patient advocacy and support groups about newborn screening; and
  • Establish a coordinated system of follow-up care for newborns and their families after screening and diagnosis.
• Provide resources to states to expand and improve their newborn screening programs, and encourage states to test for the full panel of disorders recommended by the Advisory Committee on Heritable Disorders in Newborns and Children.
• Reauthorize and expand the role of the Advisory Committee to continuously revise and update the panel of recommended tests, as well as advise the Secretary of Health and Human Services (HHS) on other steps that can be taken to improve newborn screening programs as we learn more about these rare illnesses and as new treatments and technologies are developed.
• Require the Centers for Disease Control and Prevention to ensure the quality of laboratories involved in newborn screening, so that tests are as accurate as possible and infants receive appropriate care.
• Establish a system for collecting and analyzing data from newborn screening programs, to help researchers develop a better understanding of the disorders detected by newborn screening, and how they might be better detected, prevented, treated, and cured.

(Congresswoman Lucille Roybal-Allard's office offers a wide variety of services to the community, including financial aid workshops, a service academy workshop, a scholarship directory and constituent casework services to assist district residents in resolving problems with federal agencies such as the Centers for Medicare and Medicaid Services, the Social Security Administration, the Internal Revenue Service and the U.S. Department of Veterans Affairs.  More information about federal services can be obtained by visiting Congresswoman Roybal-Allard's web site at www.house.gov/roybal-allard or by calling her district office at (213) 628-9230.)

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