The House of Representatives has unanimously passed the Newborn Screening Saves Lives Reauthorization Act, co-authored by Congressman Mike Simpson and Congresswoman Lucile Roybal-Allard (CA). The bill will reauthorize newborn screening 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 pleased to see the House pass the Newborn Screening Saves Lives Reauthorization Act and send it to the President for his signature,” said Congressman Simpson. “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.”
“I have repeatedly said that this bill is as important as any we will pass this year,” Simpson continued. “These crucial screening tests detect conditions that are too often undetected at birth and if left untreated can cause disability, developmental delay, illness, or even death. Conditions quickly identified lead to better outcomes and saved lives, often at a reduced cost. ”
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 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 their child needs treatment.
“Newborn screening represents a major public health success story that has preserved the lives and health of tens of thousands of newborns,” stated March of Dimes President Dr. Jennifer L. Howse. “The March of Dimes is deeply grateful to Rep. Mike Simpson for being a tireless champion of the Newborn Screening Saves Lives Reauthorization Act. With this legislation, we have ensured that the over 20,000 babies born in Idaho each year will continue to receive potentially life-saving newborn screening tests.”
“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, and this bill will help strengthen newborn screening across the country.”
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.
The amended bill already passed in the Senate, and now with House passage heads to the President’s desk for a signature.