[Congressional Record (Bound Edition), Volume 146 (2000), Part 13]
[Extensions of Remarks]
[Pages 19001-19002]
[From the U.S. Government Publishing Office, www.gpo.gov]



 INTRODUCTION OF THE HEREDITARY DISORDERS NEWBORN SCREENING ACT OF 2000

                                 ______
                                 

                        HON. FRANK PALLONE, JR.

                             of new jersey

                    in the house of representatives

                      Thursday, September 21, 2000

  Mr. PALLONE. Mr. Speaker, there is no uniform federal standard for 
screening newborn

[[Page 19002]]

infants for hereditary disorders. Currently, states decide for 
themselves on an individual basis the types of disorders for which 
newborns are screened. As a result of this piecemeal approach, a 
haphazard system prevails under which detectable disorders--disorders 
that can profoundly affect the health of an infant for life--may or may 
not be found early enough to make a difference depending on the state 
in which a newborn lives. If a newborn lives in a state that happens 
not to screen for a particular disorder, the failure to screen could 
result in a tragic outcome that might have been different had the 
infant simply lived in another state. This system essentially subjects 
newborns with detectable disorders to a game of ``Russian Roulette''.
  Last month, the Newborn Screening Task Force, which was convened by 
the American Academy of Pediatrics (AAP) at the request of the Health 
Resources and Services Administration, published a report on newborn 
screening in the AAP journal Pediatrics. Among the report's 
recommendations is a call to ``adhere to nationally recognized 
recommendations and standards for the validity of tests.'' ``State 
newborn screening systems'' the Task Force observed ``have a 
responsibility to review the appropriateness of existing tests [and] 
tests for additional conditions.'' In other words, the Task Force is 
calling on the states to eliminate the disparities that exist in 
newborn screening by expanding their programs to test for a common set 
of core disorders.
  Achieving this goal is no small task for the states. The technology 
for screening, which continues to advance at a rapid pace, is extremely 
expensive, and there needs to be a more coordinated system for 
developing and implementing an expanded newborn screening program. The 
federal government can and should assist in creating this system.
  Today I am introducing legislation that will work towards eliminating 
the disparities that exist between states and improving the newborn 
screening system. The Hereditary Disorders Newborn Screening Act of 
2000 will establish a grant program for the states to be administered 
by the Health Resources and Services Administration to achieve this and 
other important related goals in an effort to strengthen our nation's 
newborn screening system.
  I urge all of my colleagues to join me in eliminating these testing 
disparities and the preventable tragedies they produce by cosponsoring 
the Hereditary Disorders Newborn Screening Act of 2000.

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