As a result of the advocacy of March of Dimes volunteers, parents, and other partners, in 2007, Florida began screening for all 29 treatable metabolic and functional disorders as recommended by the American College of Medical Genetics (ACMG) and endorsed by the March of Dimes and the American Academy of Pediatrics. If diagnosed early, these disorders can be successfully managed or treated to prevent disability, other severe consequences such as mental retardation, or even death.

“The March of Dimes commends our governor and lawmakers and the  Department of Health for their leadership in putting Florida on the map for newborn screening,” said Paul Hunt, Chair, Florida Public Affairs Committee.  “Because of their actions, tragedy can be avoided by quickly identifying a problem and providing the necessary medical treatment—which brings immeasurable relief to the families of the 226,240 babies born in Florida every year.”

 Newborn screening is done by testing a few drops of blood, usually from a newborn’s heel, before hospital discharge.  A positive result does not always mean the infant has a disorder.  If a screening result is positive, the infant is referred for additional testing, and if the diagnosis is confirmed, treatment is initiated as soon as possible. Screening for hearing deficiencies, which is part of the 29 recommended conditions, is done separately.

“This is a sweeping advance for public health,” said R. Rodney Howell, M.D., chairman of the federal Health & Human Services Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children, (ACHDNC).  “The March of Dimes and its chapters nationwide can be proud of their leadership role in essentially eliminating the variation across states in the state newborn screening safety net.  Now, whether babies are screened and can get the immediate treatment they need to lead a healthy life no longer depends on the state in which they are born.”

The recent advent of tandem mass spectrometry provided the means to identify many conditions from one blood spot. In 2000, the March of Dimes recommended criteria for expanding programs in an editorial published in Pediatrics and in that same year launched its advocacy drive to require comprehensive newborn screening in every state at a time when most states screened for only four conditions. In 2005, the ACMG issued a report recommending that 29 screens be mandated for every newborn.

In 2005, the first year that the March of Dimes report card measured state-by-state requirements on expanded newborn screening, Florida screened for 9 conditions; in fact, only 38 percent of infants were born in states that required screening for 21 or more of 29 core conditions. Today, as a result of years of intensive  advocacy led by the March of Dimes, nearly all babies born in the U.S. live in states that require screening for 21 or more treatable disorders.  Florida is one of 24 states and the District of Columbia that require screening for all 29 disorders, with more states expected to join the list later this year.

“The March of Dimes will maintain its longstanding support of newborn screening,” said Jennifer L. Howse, PhD, president of the March of Dimes, “and will continue to advocate for federally supported national guidelines as well as for funding for the Newborn Screening Saves Lives Act (P.L. 110-204), a bill designed to help states strengthen their programs.”  Parents can find a brochure about the recommended newborn screening tests at the March of Dimes Web site: marchofdimes.com/nbs.     

A list of disorders for which screening is required by each state can be found on the March of Dimes Web site at marchofdimes.com/peristats, which is updated regularly, or at the National Newborn Screening and Genetics Resource Center Web site. This March of Dimes Newborn Screening Report Card details state-by-state newborn screening requirements.    

The March of Dimes is the leading nonprofit organization for pregnancy and baby health.  With chapters nationwide and its premier event, March for BabiesSM, the March of Dimes works to improve the health of babies by preventing birth defects, premature birth and infant mortality. For the latest resources and information, visit marchofdimes.com or nacersano.org.   Newborn Screening Tests by U.S. States, 2008