Joye Mullis of Raleigh, N.C., on Thursday told a Senate hearing about how a screening test for newborns detected a heart problem in her son that could be treated with surgery, and she urged Congress to renew the law that supports the screening of every baby born in the United States.
Mullis described the fear that coursed through her when she learned her newborn son, Ethan, had a heart problem requiring immediate surgery. Now 4, Ethan has survived many operations and a heart attack and is in stable health, his mother said. While she spoke to a panel of senators, he sat behind her on his father’s lap.
“Despite his rocky start, we now have a boy on our hands who loves bugs, cars and playing with his preschool friends,” Mullis said, crediting the newborn screening that detected Ethan’s condition.
Every newborn today is screened for conditions that aren’t otherwise apparent but could cause developmental delays, illnesses or death if left untreated. The Newborn Screening Saves Lives Act, passed in 2008, established national guidelines and supported the screening in all states for five years. It expires with the end of the fiscal year on Monday and must be renewed for another five years for the program to continue.
Newborn screening began 50 years ago when Massachusetts, Oregon and Delaware became the first states to require it, said Sen. Kay Hagan, D-N.C., one of two main sponsors of the reauthorization bill. Sen. Orrin Hatch, R-Utah, is the other.
As early as 11 years ago, the last time the Senate held a hearing on infant screening, some states required much more extensive screening than others, said Hagan, who chaired the hearing as head of the Senate Health, Education, Labor and Pensions Subcommittee on Children and Families.
“Today, all states screen for at least 27 out of 31 recommended conditions,” she said. “This is a dramatic improvement and a triumph for the American people.”
The screening costs about $100 per child. All babies are screened, regardless of a family’s ability to pay.
If passed by Congress, the new law would continue grants to states for their screening programs, support the work of an advisory committee that provides guidelines, and funds research for treatments through the National Institutes of Health. The legislation calls for $129 million over five years, beginning in 2014.
“We must continue to support medical and scientific innovation, along with basic research, if there’s to be hope that we can further improve the lives of babies and children inflicted with these conditions,” said Sen. Michael Enzi, R-Wyo., the subcommittee’s ranking member.
He said that infant screening was a public health priority for states and the federal government
Dr. R. Rodney Howell, a geneticist and professor of pediatrics at the Leonard M. Miller School of Medicine at the University of Miami, told senators that funding for research is critical. Howell was the founding chairman of the advisory committee established under the screening law.
“Some of the conditions we can screen for, we don’t have effective treatments for,” Howell said.