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Simpson’s Newborn Screening Bill Passes House

Bill reauthorizes landmark 2008 Newborn Screening Bill

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Washington, June 25, 2014 | comments

The House of Representatives has passed H.R. 1281, the Newborn Screening Saves Lives Reauthorization Act, co-authored by Congressman Mike Simpson and Congresswoman Lucile Roybal-Allard (CA).  The bill would reauthorize programs for five years while updating and building upon the landmark 2008 Newborn Screening Saves Lives Act first offered by Simpson and Roybal-Allard.

“I am so pleased to see the House take up and pass the bipartisan Newborn Screening Saves Lives Reauthorization Act, and I am so grateful to Congresswoman Roybal-Allard for her dedication to this issue.  She has truly led the way in making this bill a reality,” said Congressman Simpson. “Though it doesn’t receive a lot of national media attention, it is as important as any bill we will pass this year. Screening detects conditions that are otherwise undetectable at birth and if left untreated can cause disability, developmental delay, illness, or even death.”

Congresswoman Roybal-Allard added, “Our collective efforts to rapidly identify and treat these disorders are making a difference between health and disability, and even life and death, for the children affected by these severe diseases.”

“Newborn screening allows us to save lives and prevent serious disability,” said March of Dimes President Dr. Jennifer L. Howse.  “Given that one in every 300 infants has a condition that can be detected through this screening, newborn screening represents an indispensable investment in health, families, and our economy.  The March of Dimes is deeply grateful to Representatives Roybal-Allard and Simpson for their steadfast leadership on this issue vital to newborn and their families.”

Newborn screening is run by individual states, but the original 2008 Newborn Screening Saves Lives Act first encouraged states to uniformly test for a recommended set of disorders, and provided resources for individual states to grow their own screening programs.   Before that legislation, state screening varied greatly, with only 10 states requiring infants to be screened for all the treatable “core conditions” recommended.  Today, most states require screening for at least 29 of the 31 core conditions.

The test 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 the test, parents may have no way of knowing heir child needs treatment.

“Besides the obvious benefit to families who suffer an enormous emotional and economic burden when a one of these conditions goes undiagnosed for too long, this legislation is a powerful tool for savings in our already overburdened health care system,” added Simpson. “As a former dentist, I have seen the value of diagnosing and treating a condition early in a child’s life.”

One example is found in a 2012 study on severe combined immunodeficiency, known as SCID, which is one of the 31 core conditions recommended for state screening.  The Medicaid cost of treating a baby with SCID in the first two years can be $2 million dollars 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.

Similar legislation has already passed in the U.S. Senate, which will need to take up the House changes before sending it to the President for his signature.

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