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Hagan Chairs Hearing on Her Bipartisan Newborn Screening Bill

Hagan’s Bipartisan Legislation Improves Screening Programs

Thursday, September 26, 2013


Washington, DC - Today, U.S. Senator Kay Hagan (D-NC), Chair of the Subcommittee on Children and Families, held a hearing on the bipartisan Newborn Screening Saves Lives Act that she introduced with Senator Orrin Hatch (R-UT). The hearing recognized 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.

"In the last 50 years, there have been dramatic advancements in newborn screening so every child has a greater chance to live a full life, and today's hearing is another step forward in helping to save the lives of thousands of infants," said Senator Hagan. "As a mother of three, I know parents have no greater concern than their child's health, and improving these screening systems will help put more parents at ease. Particularly at a time when Washington is stuck in partisan gridlock, I am proud that my bipartisan legislation has support from Senators in both parties, as well as medical professionals, advocacy groups and North Carolina parents."

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's 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.

Please click here for more information on the Newborn Screening Saves Lives Reauthorization Act.

"Our family is so fortunate, and I want to ensure that other kids are afforded the same opportunity of early screening for these types of conditions because I can tell you firsthand it truly does save lives," said Mrs. Joye Mullis of Raleigh, NC. "I thank Senator Hagan for introducing this legislation and for working to pass it in the Senate so that kids like Ethan are diagnosed and able to receive the life-saving treatment they need."

In addition to Mrs. Mullis, witnesses at the hearing included Ms. Natasha Bonhomme, Director of Baby's First Test; Dr. Rodney Howell, Professor of Pediatrics at University of Miami School of Medicine; and Dr. Jennifer Howse, President, March of Dimes.

"The Newborn Screening Saves Lives Act has been instrumental in educating parents and providing support for newborn screening, both through the Clearinghouse and through other programs," said Natasha Bonhomme, Director of Baby's First Test, the nation's Newborn Screening Clearinghouse. "Data shows newborn screening is a first step for a healthy start for our nation's youngest citizens, and parents across America are grateful for Senator Hagan's support."

"The Centers for Disease Control and Prevention recognized the improvements in technology and the endorsement of a uniform newborn screening panel as one of the Ten Great Public Health Achievements in the United States from 2001-2010," said Dr. Rodney Howell, Professor of Pediatrics at the University of Miami School of Medicine. "The reauthorization of the Newborn Screening Saves Lives Act will ensure that the United States will continue to save lives and remain the world leader in the area of newborn screening."

"Passage of the Newborn Screening Saves Lives Reauthorization Act is essential to the continued success of newborn screening programs across our nation," stated March of Dimes President Dr. Jennifer L. Howse. "The March of Dimes is deeply grateful to Senators Kay Hagan and Orrin Hatch for their leadership in introducing this vital legislation."

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. In 2012, North Carolina screened about 120,000 babies, and about 400 babies in the State screened positively for a heritable condition.

Below are Senator Hagan's opening remarks as prepared for delivery:

I want to welcome everyone to this morning's hearing in the HELP Subcommittee on Children and Families.

I would like to thank all of our witnesses for coming today from all over the country, and I look forward to hearing your testimony.

I want to especially thank Ranking Member Enzi for his work and his staff's work on this hearing.

I am sincerely looking forward to working with you to move the reauthorization of the Newborn Screening Saves Lives Act through the Senate this Congress. I am proud to have you as a cosponsor of this bipartisan bill.

This morning we are here to discuss the past, present and future of the newborn screening system in America.

And, I sit not just as Chairman of the Subcommittee, but as ChairMOM because as a mother of 3, I can tell you from personal experience that when you have a child your first hope and prayer is that your son or daughter is healthy.

‘Please, just let her be healthy,' every parent says.

Thanks to advances in medical technology, the vision of medical professionals, and the daily work of nurses, doctors, and lab technicians, we now have the ability to detect and treat dozens of life-threatening conditions BEFORE they are able to cause serious harm.

But, it wasn't always this way. Our system has developed over the course of decades.

In fact, this month, we recognize the 50th anniversary of newborn screening.

In 1963, Massachusetts, Delaware, and Oregon became the first states in the nation to mandate universal newborn screening, and the first condition that we screened for was PKU.

About 1 baby in 19,000 is born with PKU in the United States each year. These babies appear normal for the first few months of life, but unprocessed protein builds up in their bloodstream and will cause developmental delays if no action is taken.

Thanks to the dried blood spot test that Dr. Guthrie developed so many years ago and that we still use today, babies can avoid that fate with simple changes to their diet.

Later, screens were developed for new conditions like sickle cell diseases and cystic fibrosis, and new technology like tandem mass spectrometry and DNA extraction drastically expanded our ability to quickly and accurately screen newborns for many more conditions with shorter waiting times for results.

These advances were life-saving, but only for those who lived in the states where they were implemented.

Some states lagged behind others in adopting new methods and technologies. As a result, a baby born with a heritable condition might receive the proper treatment in one state, but go undetected in another.

In fact, in this very room 11 years ago, in the last hearing that the Senate held on newborn screening, Senator Chris Dodd, who was then the Chairman of this Subcommittee, said, and I quote: "...there is an enormous disparity in the newborn screening between the various states in our country. Only 2 states will test for all 30 disorders. The vast majority test for 8 or fewer."

The situation cried out for federal leadership.

Thanks to the work of Dr. Rodney Howell, who was the first chairman of the Secretary's Advisory Committee on Heritable Disorders and is with us today, the American College of Medical Genetics, the March of Dimes, the Department of Health and Human Services, and many others, a consensus document was developed that recommended to States which conditions to screen for.

Congress also recognized the problem, and passed the Newborn Screening Saves Lives Act of 2008, which cemented the role of the Advisory Committee in reviewing new conditions, and established federal support for educating parents, researching new screening technologies, and ensuring the validity of existing screening tests.

Today, ALL states screen for at least 27 out of 31 recommended conditions. This is a dramatic improvement and a triumph for the American people.

In 2011, the CDC recognized the advances in newborn screening as one of the Ten Great Public Achievements in the United States from 2001 to 2010.

That's why I'm proud to take the lead with Senator Hatch in building on the progress we have made so far by reauthorizing the Newborn Screening Saves Lives Act.

Our bipartisan bill will:

  • Focus on ensuring follow-up care for all newborns,
  • Expand research on the long-term health impacts of newborn screening,
  • Establish timelines for the review of new conditions to recommend to states for screening, and
  • Continue NIH research aimed at identifying new treatments for conditions that can be detected through newborn screening and developing new screening technologies.

I look forward to working with my bill cosponsors - Senators Hatch, Casey, and Enzi and others to pass this bill this Congress.

Simply put: newborn screening saves lives.

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