Newborn Foundation Applauds Introduction of SHINE Act to Enhance Universal Newborn Screening for Critical Congenital Heart Disease

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SAINT PAUL, MN – June 16, 2016 — The Newborn Foundation and the Newborn Coalition applaud the introduction of the SHINE Act (H.R. 5479) by Rep. Betty McCollum (MN-4) in the U.S. House of Representatives on Tuesday. The legislation – Screening Hearts in Newborns - will provide funding for public health infrastructure to enhance state-based implementation, quality improvement and data collection programs associated with newborn screening for Critical Congenital Heart Disease (CCHD). Congenital heart defects are the most common and deadly birth defect – accounting for the majority of birth-defect related deaths in infancy. Of the estimated 40,000 babies born each year in the U.S. with CHD, more than 25% are “critical” heart problems, requiring significant medical intervention in the first days or weeks of life. CCHD screening was added to the U.S. Routine Uniform Screening Panel (RUSP) by the Department of Health and Human Services in 2011. 47 out of 50 states and the District of Columbia now require the test by law or statute.

“Babies with critical congenital heart defects may look perfectly healthy, so early diagnosis is imperative in getting them the treatment they need,” said Congresswoman McCollum (@BettyMcCollum04). “The SHINE Act provides public health support for CCHD screening to help ensure quality and timely assessment of screening results benefiting these babies, their families, and our health care system as a whole.”

Among the newest conditions to be added to the RUSP, CCHD screening has thus far lacked the dedicated federal funds appropriated to every other medical condition currently on the federally recommended newborn screening panel. The Foundation is joined by the Patient Safety Movement Foundation and other advocates in supporting legislation that ensures timely, safe and high quality newborn screening, including CCHD screening.

“We are grateful to the many clinicians and public officials who have taken this new screening to heart since we first advocated for it back in 2010,” said Annamarie Saarinen, Co-founder and CEO, Newborn Foundation | Coalition and mother of a daughter diagnosed at 2 days old with critical heart defects. “This legislation will help improve what has become a vital bedside test by supporting the public health, data and technology needs of newborn CCHD screening.”

Unlike newborn bloodspot screening, pulse oximetry screening is a non-invasive, painless, test – similar to a vital sign assessment - that measures the amount of oxygen in the blood. It is estimated that 98% of U.S. newborns are already receiving CCHD screening for “hidden” heart defects and other serious health complications that can be diagnosed through early detection of hypoxemia (low blood oxygen levels). Prior to universal CCHD screening, it is estimated that nearly 1/3 of babies with critical heart defects risked leaving the hospital nursery undiagnosed. Delays in diagnosis and treatment can cause severe cognitive, physical disabilities and even death. Early treatment can prevent the irreversible complications of heart defects, providing cost savings and ensuring better health outcomes for babies. States such as California have documented saving $9.32 in health care costs for every dollar spent on newborn screening.