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Newborn Screening Saves Lives Act

Floor Speech

Location: Washington, DC

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 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.

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