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Hagan's Bipartisan Newborn Screening Bill Passes Key Senate Committee

Press Release

Location: Washington, DC

U.S. Senator Kay Hagan's bipartisan Newborn Screening Saves Lives Act moved one step closer to Senate passage today, winning unanimous approval from the Senate Heath, Education, Labor and Pensions (HELP) Committee. Hagan, Chair of the Subcommittee on Children and Families, made timeliness a key component of the bill after recent news reports uncovered serious lapses in the newborn screening system at hospitals and laboratories. The bill, which Hagan introduced with Senator Orrin Hatch (R-UT), now moves to be considered by the full Senate.

"Newborn screening saves lives every day by catching potentially serious or even fatal conditions right when babies are born, and quickly ensuring they receive the proper treatment," said Hagan. "But the system is only effective if samples are taken and screened in a timely manner. This bill increases federal support to make sure that newborn screening happens promptly, and the strong bipartisan support it received today in the HELP Committee underscores the critical need to reauthorize these programs so we can improve the lives of more children in North Carolina and across the country."

Newborn screening is the practice of testing every newborn for medical conditions that are not otherwise apparent at birth. Screening detects conditions in newborns that, if left untreated, can cause disabilities, developmental delays, illnesses, or even death. If diagnosed early, many of these disorders can be successfully managed. Some conditions detected through newborn screening require immediate medical attention, so the timely functioning of the newborn screening system is a critical concern.

Hagan included several new provisions in the Newborn Screening Saves Lives Reauthorization Act intended to improve the timeliness of the newborn screening system, including sample collection, delivery, receipt, and testing to ensure a rapid diagnosis and appropriate treatment. These provisions include:

Allowing Health Resources and Services Administration (HRSA) grants received by states to be used to improve the timeliness of newborn screening systems.
Requiring that demonstration grants include evaluation of newborn screening timeliness.
Directing the Advisory Committee on Heritable Disorders in Newborns and Children to provide recommendations, advice, and information on timely collection, delivery, receipt and screening of specimens to ensure rapid diagnosis and follow up.
Clarifying the Centers for Disease Control and Prevention's (CDC) role in newborn screening to include laboratory quality and surveillance activities, with a focus on timeliness.
Please click here for more information on the Newborn Screening Saves Lives Reauthorization Act.

"With this vote of approval, the Newborn Screening Saves Lives Reauthorization Act has taken a major step toward ensuring the continued smooth functioning of our nation's life-saving newborn screening system," stated March of Dimes President Dr. Jennifer L. Howse. "The March of Dimes commends the Senate Committee on Health, Education, Labor and Pensions for acting on this vital legislation, and we are deeply grateful to bill sponsors Senators Kay Hagan (NC) and Orrin Hatch (UT) for championing the health of infants."

Under every state newborn screening program, health care providers collect blood specimens at the time of birth and send the specimens to state public health laboratories for screening. Each state determines which conditions to screen for based partly on recommendations from the federal Secretary of Health and Human Services. If an infant screens positive for a condition, then the infant's family and doctors are rapidly notified for follow-up testing and treatment.

According to the March of Dimes, newborn screening reaches virtually all of the more than four million babies born in the U.S. every year. About one in every 300 newborns has a condition that can be detected through screening, and each year, more than 12,000 babies are diagnosed with a condition detectable by newborn screening. In 2012, North Carolina screened about 120,000 babies, and about 400 babies in the State screened positively for a heritable condition.

Groups supportive of the Newborn Screening Saves Lives Reauthorization Act

Alpha-1 Foundation
American Academy of Pediatrics
American Association for Clinical Chemistry
American College of Medical Genetics
American College of Nurse-Midwives
American Congress of Obstetricians and Gynecologists
Association of Maternal and Child Health Programs
Association of Public Health Laboratories
Children's PKU Network
Genetic Alliance
Hunter's Hope Foundation
Immune Deficiency Foundation
Jeffrey Modell Foundation
Lymphedema Advocacy Group
Madison County Community Health Centers, Inc
March of Dimes
Mended Little Hearts
Muscular Dystrophy Association
National Association of County and City Health Officials
National Association of Neonatal Nurses and National Association of Nurse Practitioners
National MPS Society
National Tay-Sachs & Allied Diseases Association, Inc.
Organic Academia Association
SCID Angels for Life Foundation
The Legacy of Angels Foundation
Trisomy 18 Foundation
Tuberous Sclerosis Alliance
Zero to Three

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