| Nearly 90 percent of all babies born in the United States – more than double the percentage in 2005 – live in states that require screening for at least 21 serious disorders, according to the latest March of Dimes Newborn Screening Report Card. New Jersey has made great strides in advocacy and awareness in the last few years. But today, the state of New Jersey still only requires screening for 23 of the 29 core conditions.
The March of Dimes endorsed the 2004 report of the American College of Medical Genetics that calls for every baby born in the U.S. to be screened for 29 genetic or functional disorders. If diagnosed early, all of these devastating conditions can be successfully managed or treated to prevent severe consequences.
Two years ago, after the March of Dimes endorsement, only 38 percent of infants were born in states that required screening for at least 21 of these 29 core conditions. As a result of four years of intensive advocacy efforts by March of Dimes chapters and their partners, that percentage has increased to 87.5, or about 3.6 million babies.
“While New Jersey, in reality, screens all newborns for more than 50 disorders, these screens are not all mandated by State Law, and so are not counted in the national rankings. It is critical that New Jersey law reflect what the State, in good conscience, is already practicing,” said Joan Stolpen, J.D., LL.M., volunteer chair of the March of Dimes Public Affairs Committee.
“While this important expansion of newborn screening is very good news for families, the lives of 500,000 newborns who still aren’t tested hang in the balance,” said March of Dimes President Dr. Jennifer L. Howse. “Despite the pleas of parents, clinicians and advocacy groups, the United States still lacks consistent federal guidelines for newborn screening. Babies must be screened to receive immediate treatment necessary to survive and lead healthy lives. The lack of federal guidelines makes it difficult for states to get support for needed legislation,” she said.
In states that don’t follow the ACMG recommendations, March of Dimes staff and volunteers continue to work with governors, legislatures, health departments and parent groups to advocate for expanded newborn screening on a state-by-state basis.
“The March of Dimes New Jersey Chapter is working with Assemblyman John McKeon to pass Assembly Bill 3637, which will codify the Newborn Screening Program, including disorders for screening, follow-up treatment for affected children, and funding for program expansion and infrastructure,” said Stolpen. A companion bill sponsored by Senator Codey in the Senate is expected as well. “Including newborn screening in the New Jersey statute is a key way to ensure that our state will continue to be seen as a leader in the field of promoting child health,” added Stolpen. Contact the March of Dimes at 973-882-0700 x 27 and join the efforts to help the babies of New Jersey get access to comprehensive screening.
The March of Dimes is a national voluntary health agency whose mission is to improve the health of babies by preventing birth defects, premature birth and infant mortality. Founded in 1938, the March of Dimes funds programs of research, community services, education, and advocacy to save babies and in 2003 launched a campaign to reduce the rate of premature birth. For more information, visit the March of Dimes Web site at marchofdimes.com or its Spanish Web language site at nacersano.org.
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