Newborn Screening Saves Lives Reauthorization Act of 2014

Floor Speech

Mr. SIMPSON. Mr. Speaker, I am proud to join with my friend and colleague from California, Congresswoman ROYBAL-ALLARD, to thank the House of Representatives and leaders on both sides of the aisle for their support of H.R. 1281, the Newborn Screening Saves Lives Reauthorization Act, which passed the House last night.

In 2008, Congresswoman ROYAL-ALLARD and I introduced the original Newborn Screening Saves Lives Act, which encouraged states to uniformly test for a recommended set of disorders and provided resources for states to expand and improve their screening programs.

Before this legislation, state screening tests varied greatly, and only 10 states and DC required infants to be screened for all the ``core conditions'' recommended by the Advisory Committee on Heritable Disorders in Newborns and Children.

Today, most states require screening for at least 29 of the 31 treatable core conditions.

This bipartisan reauthorization builds upon the foundation of the original bill and ensures infants continue to receive comprehensive screenings--which consists of a simple prick on the heel of newborns before they leave the hospital.

That blood sample tests for serious genetic, metabolic, or hearing disorders that may not be apparent at birth. Without this test, parents may have no way of knowing their child needs treatment.

Mr. Speaker, the importance of newborn screening is undeniable.

About one in every 300 newborns in the United States has a condition that can be detected through screening. Left untreated, these conditions can lead to serious illness, lifetime disabilities, or even death. These newborns appear healthy, but their conditions can deteriorate quickly and with no warning.

In addition, newborn screening is a powerful tool for savings in our overburdened health care system As a former dentist, I have seen the value of diagnosing and treating a condition early in a child's life.

One example of the merit of newborn screening comes from a 2012 study on severe combined immunodeficiency, known as SCID. SCID is one of the 31 conditions recommended for state screening.

The Medicaid cost of treating a baby with SCID in the first two years can be $2 million or more. Yet an infant diagnosed early can be cured through a bone marrow transplant in the first three months of life, costing $100,000. Without the early intervention, families suffer enormous economic and emotional burdens.

Mr. Speaker, I want to thank all those who have worked so hard to make this legislation a reality, particularly Congresswoman ROYBAL-ALLARD, who has led the way in making this a reality, and the public health organizations who worked day and night to help move this bill through the process. I look forward to my Senate colleagues passing this important legislation and sending it to the President's desk.

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