[Congressional Record (Bound Edition), Volume 159 (2013), Part 3]
[Extensions of Remarks]
[Pages 4186-4187]
[From the U.S. Government Publishing Office, www.gpo.gov]




                   NEWBORN SCREENING SAVES LIVES ACT

                                  _____
                                 

                        HON. MICHAEL K. SIMPSON

                                of idaho

                    in the house of representatives

                       Wednesday, March 20, 2013

  Mr. SIMPSON. Mr. Speaker, I am proud to join with my friend and 
colleague from California, Congresswoman Roybal-Allard, to introduce 
the Newborn Screening Saves Lives Reauthorization Act of 2013. This 
legislation would reauthorize critical federal programs that assist 
states in improving and expanding their newborn screening programs, 
supporting parent and provider newborn screening education, and 
ensuring laboratory quality and surveillance.
  Over 4 million babies will be born across the United States this 
year, and each and every one will be touched by newborn screening. Most 
screenings are done using a simple ``heel stick'' blood sample 
collected before the newborn leaves the hospital. These screenings test 
for serious genetic, metabolic or hearing disorders that may not be 
apparent at birth.
  Approximately 1 in every 300 newborns in the United States has a 
condition that can be detected through screening. If left untreated, 
these conditions can cause serious illness, lifetime disabilities and 
even death. Without early interventions, these infants and their 
families suffer enormous emotional and economic burdens. Imagine the 
burden of knowing that your child died or is suffering from a disease 
that could have been prevented if identified through newborn screening. 
No baby should suffer or die if a screening test can prevent it.
  Newborn screening not only saves lives but, it also saves money. As a 
former dentist, I know well the importance of diagnosing and treating a 
condition early in a child's life. According to a 2012 study on severe 
combined immunodeficiency (SCID)--one of the 31 core, treatable 
conditions recommended for state newborn screening programs--the 
Medicaid cost of treating a baby with SCID in the first two years of 
life can cost more than $2 million dollars. Yet, an infant diagnosed 
early can be cured through a simple bone marrow transplant--costing 
just $100,000 if performed in the first three months of life.
  In 2008, Congresswoman Roybal-Allard and I introduced the original 
Newborn Screening Saves Lives Act (P.L. 110-204), which encouraged 
states to uniformly test for a recommended set of disorders and 
provided resources for states to expand and improve their newborn 
screening programs. Prior to passage, the number and quality of newborn 
screening tests varied greatly from state to state. In 2007, only 10 
states and the District of Columbia required infants to be screened for 
all of the ``core conditions'' recommended by the Secretary's Advisory 
Committee on Heritable Disorders in Newborns and Children. Today, 44 
states and the District of Columbia require screening for at least 29 
of the 31 treatable core conditions.
  The Newborn Screenings Saves Lives Reauthorization Act builds upon 
the foundation laid by the original legislation and will ensure that 
infants continue to receive comprehensive and effective screenings. The 
legislation reauthorizes programs at the Health Resources and Services 
Administration to assist states' efforts to improve their screening 
programs, educate parents and health care providers, and improve 
follow-up care for infants with

[[Page 4187]]

conditions detected through newborn screening. The legislation also 
renews the Secretary's Advisory Committee on Heritable Disorders in 
Newborns and Children, which maintains and updates the Recommended 
Uniform Screening Panel that states use to adopt and implement new 
conditions. Improvement of data quality is also needed to track the 
clinical outcomes of children more effectively and to refine protocols 
for short-term and long-term follow-up of children with conditions 
identified through newborn screening. That is why the Reauthorization 
Act establishes a grant program within the Centers for Disease Control 
and Prevention to assist states in developing follow-up and tracking 
programs.
  Mr. Speaker, I ask that my colleagues join with me in supporting this 
critical legislation--because no baby should die or suffer the 
devastating health consequences of a condition that could have been 
treated or prevented if identified through newborn screening.

                          ____________________