FLORIDA’S BABIES AMONG THOSE SCREENED FOR LIFE-THREATENING GENETIC AND FUNCTIONAL DISORDERS - Nearly Half a Million Nationwide Still Left Out

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.

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.

At present, 13 states and the District of Columbia require screening for 29 core, treatable, conditions. Florida newborns are currently screened for 28 conditions; and will begin screening for Cystic Fibrosis (#29) this month.  The state also screens for six additional conditions. 

“We are thrilled that testing for Cystic Fibrosis will soon be implemented,” said Paul Hunt, chair of the Florida March of Dimes Public Affairs Committee.  “Only a few years ago, Florida tested newborns for just eight of the conditions,” he noted.
Two years ago, at the time of 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 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.

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.

Federal Advocacy Efforts
The March of Dimes supports two pieces of federal legislation, the ‘Newborn Screening Saves Lives Act,’ sponsored by Sen. Christopher J. Dodd (D-CT), Sen. Orrin Hatch (R-UT), Rep. Lucille Roybal-Allard (D-CA), and Rep. Mike Simpson (R-ID) and ‘The Screening For Health of Infants And Newborns (SHINE) Act of 2007,’ sponsored by Sen. Hillary Rodham Clinton (D-NY) and Rep. Thomas Reynolds (R-NY).  These bills would lay the groundwork for national guidelines and authorize funding for several new federal initiatives designed to increase educational resources for parents and health care providers, improve follow-up care for infants, provide assistance to states expanding and improving their newborn screening programs and develop new screening tools for additional life-threatening disorders.

“We call on Health and Human Services Secretary Mike Leavitt to help give all babies a fighting chance for a healthy life through expanded newborn screening,” said Dr. Howse. 

The ACMG recommendation to screen for 29 conditions has been endorsed by clinicians and researchers alike, including the American Academy of Pediatrics (AAP) and the federal Health and Human Services Secretary’s Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children.  Both the March of Dimes and the AAP have called for a national newborn screening standards as well as federal funding to help states improve their screening programs.

Information for Consumers
A list of which screening tests are provided by each state can be found on the “Peristats” section of 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 at genes-r-us.uthscsa.edu. 

“Regardless of how many screening tests are mandated by individual states, parents and health professionals should be fully informed of the benefits and availability of comprehensive newborn screening,” Dr. Howse said.  “It’s also advisable for parents to receive information on screening tests for those conditions for which there is not yet treatment,” she stated.

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 the disorder.  If a screening result is positive, the infant is re-tested and then given treatment as soon as possible, before becoming seriously ill from the condition. 

Parents can find a brochure about the recommended newborn screening tests online at the March of Dimes Web site at marchofdimes.com/nbs.

Those who live in states where newborn screening is limited can arrange privately for additional tests, often at additional expense to the family or health plan. Parents should check with their doctor or state health department for a list of providers of these screening tests.
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.  Florida’s Web site is www.marchofdimes.com/florida