Congress must renew the Newborn Screening Saves Lives Act so more lives are saved

More than 50,000 babies are born in Kentucky every year. It is essential that we do everything possible to ensure they grow up healthy.

For over half a century, almost all children received a newborn screening test where a small drop of blood can detect multiple diseases that — if discovered early — can be treated. This early screening is critical, because diagnosis even a few weeks later can lead to lifelong health conditions, like blindness or organ damage, and in some tragic cases, even death.

Our work as neonatologists involves caring for the tiniest and most critically ill babies in neonatal intensive care units. When a newborn screening test catches the possibility of a serious condition, we have the chance to share information with parents who can take steps to support their child – whether it be using a certain medication or a making meaningful change in diet.

A regular occurrence for neonatologists like both of us involves normal-appearing infants who are born after perfectly normal pregnancies to healthy mothers yet the newborn screening test alerts us that something may be wrong. I recall a case here in Kentucky where the newborn screening test caught dangerously low levels of thyroid hormone in a newborn baby. With this information, the newborn could begin treatment with supplemental thyroid hormone right away. Delayed treatment of thyroid hormone problems like this leads to problems with growth and development for the baby and can also cause lifelong cognitive delay and low IQ. This is just one example of many showing how Kentucky kids benefit directly from this program.

Nationally, over 12,500 babies each year are diagnosed through newborn screening and the national program’s potential to identify diseases is growing. In the 1960s when screening first began, state laboratories screened for only one rare disease. We are now screening for 54 different conditions in Kentucky including cystic fibrosis, sickle cell disease and immune disorders.

The newborn screening program here in Kentucky requires funding to support the technically skilled Kentuckians who perform the testing, the laboratory costs of supplies needed for testing and the bandwidth needed to follow up on the thousands of screening tests done each year.

The Newborn Screening Saves Lives Act, which provides this crucial financial support, was last authorized in 2014. This law grants funds to assist in educating new parents about these rare diseases, authorizes funding for the costs of screening and allows the Centers for Disease Control and Prevention to conduct quality testing so results of newborn screening test are accurate. The law also provides research funding into potential treatments for diseases detected by the program.

We also know that this screening is extremely cost effective. A 2006 study found for every $1 California invested in its newborn screening program, over $9 in medical costs were saved.

As its name states, this legislation saves lives. It is time that Congress takes long overdue action to renew it. Much of pediatrics is based in prevention, and if we can support babies early on, we can better support their lifelong health and development. In fact, over 60 major medical organizations are strongly urging senators to pass this measure without delay.

Babies born each day in Kentucky and across the country deserve to benefit from the resources the Newborn Screening Saves Lives Act provides. We urge Congress to work quickly to advance this bill into law.

Dr. Ali Slone is a neonatal intensive care physician in Lexington, KY and a mother of two boys who benefited from Kentucky’s newborn screening program. Dr. Shetal Shah is a member of the national Pediatric Policy Council and the American Academy of Pediatrics Executive Board for Neonatal-Perinatal Medicine.