[Congressional Record (Bound Edition), Volume 152 (2006), Part 6]
[House]
[Pages 8193-8194]
[From the U.S. Government Publishing Office, www.gpo.gov]




                     NEWBORN SCREENING SAVES LIVES

  The SPEAKER pro tempore. Pursuant to the order of the House of 
January 31, 2006, the gentlewoman from California (Ms. Roybal-Allard) 
is recognized during morning hour debates for 5 minutes.
  Ms. ROYBAL-ALLARD. Mr. Speaker, this past Sunday was Mother's Day. 
Across our Nation, 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. Today, to help ensure that mothers 
receive that most precious of gifts, I am introducing the Newborn 
Screening Saves Lives Act of 2006.
  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 5,000 babies are 
born each year 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 a national newborn

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screening law does not exist 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. Consequently, each year 
approximately 2,000 infants are permanently disabled or die from 
otherwise treatable disorders. This bill could prevent these tragedies 
and save millions of dollars in health care costs to both families and 
States.
  The Newborn Screening Act of 2006 seeks to eliminate these 
unnecessary deaths and severe disabilities by educating parents and 
health care professionals about the advisability of newborn screening 
and improves the system for follow-up care for infants detected with an 
illness through the newborn screening tests. The bill encourages States 
to uniformly test for all recommended disorders and provides resources 
for States to expand and improve their newborn screening programs. It 
also requires the CDC 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.
  Mr. Speaker, somewhere in our country today, there is a mother 
holding her newborn son or daughter totally unaware that her seemingly 
healthy baby is being attacked by a genetic disease because her State 
or birthing facility did not offer the one test that could have 
provided her with this critical information. If she knew, she could 
have begun the treatment needed to protect her baby from permanent 
disability or death.
  Mr. Speaker, we have the power to help prevent this tragedy. By 
passing the Newborn Screening Saves Lives Act of 2006, we can ensure 
that parents and health providers are knowledgeable about newborn 
screening and that babies receive the comprehensive and consistent 
testing they need. It is a challenge we simply cannot ignore.
  I urge my colleagues to join me in presenting a Mother's Day gift to 
the 4 million women who give birth each year by becoming cosponsors of 
the Newborn Screening Saves Lives Act of 2006 and helping to pass it 
into law.

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