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.
Massachusetts has failed to make progress on expanding the newborn screening panel this year. At present, 13 states and the District of Columbia require screening for the 29 core, treatable, conditions.
Massachusetts had been a leader in newborn screening when in the early 1960s it became the first state to routinely screen all newborns for PKU (phenylketonuria), an inherited metabolic disorder that, if untreated, causes severe mental retardation. But today Massachusetts requires screening for only 12 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.
Ed Doherty, State Director for the March of Dimes Massachusetts Chapter said, "We are optimistic that when the Massachusetts Department of Public Health's Newborn Screening Advisory Committee meets in October this year that they will recommend to the Commissioner that the State increase the number of newborn screening tests it currently requires."
"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. Contact the March of Dimes at 508-329-2800 and join efforts to continue to advocate for the well-being of babies in Massachusetts.
Nationwide, a discouraging 6.1 percent of babies are born in states that required screening for only 10 to 20 of the core conditions and 6.2 percent of newborns will get screening for fewer than 10 conditions.
"Disparities in state newborn screening programs mean some babies may die or develop brain damage or other severe complications because they are not identified in time for effective treatment," said Dr. Howse. "All babies across America should receive the benefits of being screened for all of these 29 core conditions," said Dr. Howse.
This is the fifth consecutive year the March of Dimes has analyzed state- by-state newborn screening requirements, creating a snapshot of the nation's progress toward improving the health of infants and children. The March of Dimes contracted with the National Newborn Screening and Genetics Resource Center to survey each state's newborn screening requirements.
The snapshot shows that the nation is on target to meet the March of Dimes goal of having all babies screened for 20 or more of the recommended panel of genetic disorders by 2008.