May 2, 2019

March of Dimes today welcomed the introduction of a bill in the House of Representatives that would renew programs to help states screen the four million babies born each year for serious or life-threatening medical conditions that benefit from early treatment.

The Newborn Screening Saves Lives Reauthorization Act, authored by Representatives Lucille Roybal-Allard (D-CA) and Mike Simpson (R-ID), together with Representatives Jaime Herrera Beutler (R-WA) and Katherine Clark (D-MA), will support testing that saves or improves the lives of more than 12,000 babies born each year with genetic, metabolic, hormonal and functional conditions. The bill renews federal programs that provide assistance to states to improve and expand their newborn screening programs, support parent and provider education, and ensure laboratory quality and surveillance for state newborn screening programs.

“Newborn screening saves the lives or preserves the health of thousands of babies every year,” said March of Dimes President and CEO Stacey D. Stewart.  “No child should suffer or die when there is a means to quickly and accurately identify and treat the condition. March of Dimes appreciates the steadfast support of Representatives Roybal-Allard and Simpson, as well as Representatives Herrera Beutler and Clark, in promoting the health of all infants. We look forward to working with all them on the swift passage of this bill.”

In the U.S., newborn screening is a state-run public health program that identifies infants with certain conditions that may not be apparent at birth. The program involves screening, rapid follow-up and referral for infants with positive results, confirmatory testing and diagnosis, treatment and therapies, education and evaluation of program’s success. 

Stewart said the program not only saves lives, but also money for both the health care system and the taxpayer by preventing severe and permanent disabilities through early treatment. For example, treating an infant with Severe Combined Immunodeficiency can cost Medicaid as much as $2 million. However, if diagnosed at birth, infants can be cured with a bone marrow transplant costing about $100,000.

In 2008, Congress passed the original Newborn Screening Saves Lives Act (P.L. 110-204), which established national newborn screening guidelines and helped facilitate comprehensive newborn screening in every state. The law was reauthorized in 2014 (P.L. 113-240). Prior to passage of P.L. 110-204, the number and quality of newborn screening tests varied greatly from state to state. In 2007, only 10 states and the District of Columbia required infants to be screened for all the recommended disorders. Today, all states, the District of Columbia and Puerto Rico screen for at least 29 of the 35 treatable core conditions.