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Features Health & Wellness Hagan’s bipartisan Newborn Screening Bill clears Senate

U.S. Senator Kay Hagan’s Newborn Screening Saves Lives Reauthorization Act passed the Senate Wednesday, Jan. 29. The bipartisan bill, which Hagan introduced with Senator Orrin Hatch (R-UT), makes critical improvements to the country’s newborn screening system and ensures potentially life-threatening conditions are detected, diagnosed and treated in a timely manner. It now moves to the House of Representatives.

“I am so pleased that the Senate made important progress toward helping to save the lives of thousands of infants,” said Hagan. “As a mom, I can remember being singularly concerned with one thing – was my new baby healthy? Improving these screening systems will help put more parents at ease by ensuring that potentially serious or fatal conditions are caught right away so they can quickly receive proper treatment. Newborn screening saves lives, and I urge the House of Representatives to act quickly so that more children in North Carolina and across the country have a greater chance to lead a full life.”

In September, Hagan, Chair of the Senate Subcommittee on Children and Families, held a hearing in Washington to recognize the 50th anniversary of newborn screening in the United States and the importance of reauthorizing the Newborn Screening Saves Lives Act. Among the witnesses was a mother from Raleigh, Joye Mullis, whose son Ethan’s life was saved by a test that detected his heart defect and is now mandatory for all newborns in North Carolina.

“Thanks to early screening and excellent medical care, we now have a boy on our hands who loves bugs and cars and playing with his preschool friends,” said Mrs. Mullis. “Our family is so fortunate, and I thank Senator Hagan for introducing this legislation and passing it in the Senate to ensure other kids like Ethan are quickly diagnosed and able to receive the treatment they need, because I can tell you firsthand it truly does save lives.”

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.

Hagan included several 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.

Hagan’s bill also accelerates the review of new conditions that the federal government recommends states should screen for and expands research into the health and development of children who have a conditions identified through screening.

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.

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