“This common-sense bill makes sure that the states are able to improve their newborn screening programs to help pediatricians and other providers promptly diagnose and treat these conditions in order to help prevent irreversible brain damage, permanent disability and death,” said Hatch. “I’m glad to work with my colleague to reauthorize these critical programs.”
“This bipartisan bill will ensure that parents can get immediate treatment for serious medical conditions that affect some of our youngest children,” said Hagan. “As a mom, I know what it feels like to be singularly concerned with the health and well-being of your new baby, and improving our screening systems can put all parents a little bit more at ease. Screening programs save lives, and this legislation will help us increase the programs’ effectiveness by improving how we evaluate, identify, and treat disorders among infants.”
The bill will improve follow-up care for infants that screen positive for a condition, accelerate the review of proposed new conditions that states should screen for, and expand the role of the newborn screening information clearinghouse to better educate families on the importance of newborn screening.
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.
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 on recommendations from the federal Secretary of Health and Human Services. If an infant tests 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 each 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.
First enacted into law in 2008, the Newborn Screening Saves Lives Act established national newborn screening guidelines and helped facilitate comprehensive newborn screening in every state. The bipartisan Hagan-Hatch bill would update that law.
Groups Supportive of the Newborn Screening Saves Lives Reauthorization Act
March of Dimes:
“No baby should die or suffer the devastating health consequences of a condition that could have been treated or prevented if identified through newborn screening. We commend Senators Hagan and Hatch for their leadership in championing the health of our nation’s infants.” – Dr. Jennifer L. Howse, President
Muscular Dystrophy Association:
"Today we stand on the brink of the development of life-saving therapies for many of the most rapidly progressive and fatal pediatric genetic diseases known. These affect thousands of babies each year and include the muscular dystrophies, spinal muscular atrophy, Pompe disease, and more. Newborn screening is the most powerful tool we have to impact curative treatments as they become available and is among our nation's most cost-effective measures of improving health outcomes for Americans with unmet medical needs." – Annie Kennedy, Senior Vice President-Advocacy
Families of Spinal Muscular Atrophy:
"On behalf of Families of SMA, I want to express my gratitude to Sen. Hagan and Sen. Hatch for introducing the Newborn Screening Saves Lives Reauthorization Act of 2013. Their tireless efforts and leadership are much appreciated and to be commended.
“Families of SMA is particularly supportive of the "priority review" provisions in this bill, which will align therapy development activities and newborn screening to save he lives of countless newborns affected by deadly disorders. We look forward to continuing to work with Sen. Hagan and Sen. Hatch to move this important bill through he legislative process." – Kenneth Hobby
Hunter’s Hope Foundation:
“When my son Hunter (2/14/97 – 8/5/05) was diagnosed with Krabbe Disease, we were told that he wouldn’t live beyond his second birthday. For diseases like Krabbe, early detection through Newborn Screening is crucial. The Newborn Screening Saves Lives Act of 2007 enabled many states to more than triple the number of diseases screened for at birth. But there is still more work to be done. We need our nation’s leaders to come together in support of the Newborn Screening Saves Lives Reauthorization Act so all of our kids have a chance for a healthy life, something Hunter never had.”-- NFL Hall of Fame quarterback Jim Kelly, whose son, Hunter, was diagnosed with a rare, fatal genetic disorder
“As we celebrate 50 years of newborn screening in the United States, Genetic Alliance is in strong support of this bill. Each year thousands of children's lives are saved through screening. The Newborn Screening Saves Lives Reauthorization Act is an investment in the future of our smallest citizens. The programs it funds are critical to keeping our children healthy.” – Natasha Bonhomme, Director of Baby’s First Test