Fifty years ago, a researcher funded by the March of Dimes developed the first newborn screening test. Today, there are tests for more than 30 treatable conditions and thousands of lives have been saved.
The Newborn Screening Saves Lives Reauthorization Act, introduced in the U.S. Congress in March by Representatives Lucille Roybal-Allard (D-CA) and Mike Simpson (R-ID) and today by Senators Kay Hagan (D-NC) and Orrin Hatch (R-UT), will renew 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 newborn screening programs.
“Congress must reauthorize the Newborn Screening Saves Lives Act because 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,” says Dr. Jennifer L. Howse, president of the March of Dimes. “We encourage public health agencies to work with health professionals and families to develop and maintain newborn screening programs that include appropriate education, follow-up and support.”
Newborn screening began in 1963 when Massachusetts first screened for PKU (phenylketonuria), using a test developed by March of Dimes-funded researcher Robert Guthrie, M.D. Many more tests followed, including those for congenital adrenal hyperplasia and biotinidase deficiency, which also were developed with support from the March of Dimes.
In recent years, the March of Dimes led a nationwide campaign encouraging all states to screen every newborn for the full panel of recommended conditions. Ensuring all babies are screened for the core panel of 31 genetic, metabolic, hormonal and/or functional conditions recommended by the American College of Medical Genetics and the federal government is just one way the March of Dimes works to give all babies a healthy start in life. Today, 44 states and the District of Columbia require screening for at least 29 of the 31 core conditions.
In the U.S., newborn screening is a state-run public health program that identifies infants who may have a disorder that may not be apparent at birth. If left untreated, these conditions can cause serious illness, lifetime disabilities and even death. In many cases, early diagnosis and treatment can prevent or lessen the severity of these conditions.
March of Dimes chapters are advocating in state legislatures to add conditions to each state’s newborn screening panels. More than 20 March of Dimes chapters are working in their states to add screening for critical congenital heart disease (CCHD) screening, which was recommended in 2012. Others are advocating for the addition of severe combined immunodeficiency (SCID).
In 2013, the March of Dimes celebrates its 75th Anniversary and its ongoing work to help babies get a healthy start in life. Early research led to the Salk and Sabin polio vaccines that all babies still receive. Other breakthroughs include new treatments for premature infants and children with birth defects. About 4 million babies are born each year in the United States, and all have benefitted from March of Dimes lifesaving research and education.