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Rep. Roybal-Allard’s Newborn Screening Saves Lives Reauthorization Act Passes the House of Representatives

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

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Washington, June 24, 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 the House of Representatives.  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.

“I thank my colleagues for supporting this critical legislation,” said Congresswoman Roybal-Allard following the bill’s passage by the House. “By passing the Newborn Screening Saves Lives Reauthorization Act, the House has reaffirmed the importance of ensuring that babies continue to receive a comprehensive and consistent set of screening tests, and giving parents and professionals centralized access to newborn screening information.”

“I want to offer my heartfelt thanks to my lead co-sponsor, Congressman Michael Simpson, a longtime champion of newborn screening services and an original co-sponsor of the first version of this legislation.  I also want to thank Senators Kay Hagan and Orrin Hatch for their sponsorship of the Senate companion bill, which passed that body by unanimous consent in January.  And I am grateful to the coalition of public health groups, especially the March of Dimes and the Association of Public Health Laboratories, for promoting and sustaining support for our newborn screening legislation over many years.  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.  As a result of the original bill, 44 states and the District of Columbia require screening of at least 29 of the 31 core treatable conditions.  Where a baby is born should not determine its chance for a healthy future.”

“I am so pleased to see the House take up and pass the Newborn Screening Saves Lives Reauthorization Act,” said Congressman Simpson (ID-02). “Though it doesn’t receive a lot of national media attention, this bill is as important as any we will pass this year. Screening detects conditions that are often undetectable at birth and if left untreated can cause disability, developmental delay, illness, or even death.”

“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.”

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