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Rep. Roybal-Allard’s Newborn Screening Saves Lives Reauthorization Act Passes Congress

Bill Supports Newborn Screening Tests Proven to Curb Preventable Newborn Deaths and Severe Disabilities

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Washington, December 10, 2014 | Ben Soskin ((202) 225-1766) | comments
Today, Congresswoman Lucille Roybal-Allard (CA-40) celebrated the passage of her Newborn Screening Saves Lives Reauthorization Act (H.R. 1281) by Congress.  The bill, which renews funding for her Newborn Screening Saves Lives Act of 2007, seeks to eliminate preventable newborn deaths and severe disabilities through the increased use of comprehensive and standardized newborn screening tests.  The House of Representatives, which had previously passed the bill on June 24 of this year, agreed today to an amended version of the bill that passed the Senate on Monday.  The bill will now go to President Obama for his signature.

“I introduced the Newborn Screening Saves Lives Reauthorization Act because all babies deserve the same opportunity to be screened and treated for life-threatening illnesses, no matter where they are born or how much money their families have,” said Congresswoman Roybal-Allard following the bill’s passage by the House. “Newborn screening tests are able to detect genetic and metabolic diseases in about 12,000 babies each year.  By identifying and treating these conditions as early as possible, we give children the best chance to lead long, healthy, and active lives.  The programs in this bill will promote newborn screening policies that are high-quality and available to all.  I am very glad that Congress has reauthorized this critical bill, and I look forward to the President signing it into law.”

“I extend my sincere thanks to my lead co-sponsor, Congressman Michael Simpson, for his decade-long history of championing newborn screening services and his original co-sponsorship of the first version of this legislation,” Congresswoman Roybal-Allard added.  “I also commend Senators Kay Hagan and Orrin Hatch, the sponsors of the Senate companion bill, for working across the aisle to develop the strong and effective compromise bill that Congress has just passed.  And I thank the March of Dimes, the Association of Public Health Laboratories, and our other public health partners for their tireless efforts to promote and sustain support for our newborn screening legislation over many years.”

“I am so pleased to see the House pass the Newborn Screening Saves Lives Reauthorization Act and send it to the President for his signature,” said Congressman Michael K. Simpson (ID-02). “I have repeatedly said that this bill is as important as any we will pass this year. These crucial screening tests detect conditions that are too often undetectable at birth and if left untreated can cause disability, developmental delay, illness, or even death.”

“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,” Congressman Simpson added. “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.”

“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. Lucille Roybal-Allard for being a tireless champion of the Newborn Screening Saves Lives Reauthorization Act.  With this legislation, we have ensured that the over 500,000 babies born in California each year will continue to receive potentially life-saving newborn screening tests.”

Summary of H.R. 1281, The Newborn Screening Saves Lives Reauthorization Act

Congresswoman Roybal-Allard’s bill will continue providing babies with a simple blood test to identify many life-threatening genetic and metabolic illnesses before symptoms begin.   The screenings covered under this act are of critical importance to the approximately 12,000 babies who test positive for one of these illnesses each year.  Fifty years ago, before the development of newborn screening tests, these illnesses would have gone undetected until symptoms appeared, and the afflicted children would have died or suffered lifelong disability as a result.  Today, thanks to newborn screening, they have the chance to live relatively normal lives.

Before the original Newborn Screening Saves Lives Act was enacted in 2008, only ten states and the District of Columbia required infants to be screened for a complete panel of recommended disorders, and there was no federal repository of information on the diseases.  But today, 29 of the 31 core treatable conditions are screened in 44 states, and parents and professionals have access to a central database of newborn screening information when a baby is diagnosed with one of these disorders.

Unfortunately, critical gaps and challenges still remain.  There are discrepancies in the number of screening tests given from state to state, and approximately 1,000 infants still face death or permanent disability each year as a result of what would have been treatable disorders.  The Newborn Screening Saves Lives Reauthorization Act will help to avoid these preventable tragedies by providing states with the resources they need to improve their newborn screening programs and to uniformly test for all recommended disorders.  It will also provide states with assistance in developing follow-up and tracking programs.  These provisions will help our financially burdened health care system by saving billions of dollars throughout the lives of these children.

In addition, the bill renews the Secretary’s Advisory Committee for Heritable Disorders, and requires the CDC to ensure the quality of laboratories involved in newborn screening.  The bill also continues the Hunter Kelly Newborn Screening Program, which helps researchers at the National Institutes of Health to develop better detection, prevention, and treatment strategies.

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Tags: Health