July 11, 2007
Little Rock —
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. Under Governor Mike Beebe’s leadership and with the full support of the Arkansas Board of Health, the Arkansas Department of Health has a firm plan to implement newborn screening for all 29 core conditions recommended by the March of Dimes by July 2008. At present, 13 states and the District of Columbia require screening for the 29 core, treatable, conditions.
Paul Halverson, Dr PH, State Health Director, said today that “The health of our children is most precious to us, and we are proud to say that we are on track to provide all 29 of the screens listed on the report card in this fiscal year. We have been working diligently but deliberately to put into place the sophisticated equipment and the highly trained people we need to meet the requirements for providing a testing system that is among the very best in the country. Our efforts have been focused on cooperating with other agencies in development of a program that can deal with the results of these critical tests.
“Under Governor Mike Beebe’s leadership and with the full support of the Arkansas Board of Health, the Arkansas Department of Health anticipates implementing newborn screening for all 29 core conditions recommended by the March of Dimes by July 2008,” according to Dr. Joe Thompson, Arkansas Surgeon General.
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.
With the recently enacted biennial budget from the Arkansas 86th General Assembly, the state has made great strides in moving its Newborn Screening Program into position to be among the best in the country. The Legislature authorized additional staff and funding for the program’s implementation by July 2008; and the Department of Health has begun hiring and training staff for both the laboratory and follow up program.
Arkansas law authorizes the Board of Health to determine which screens are required; and the Board has initiated the necessary rules change to add the remaining 22 metabolic screens to the panel. It is anticipated that the rules will be adopted by year end.
The Arkansas Department of Health is preparing to provide these additional services in close partnership with Arkansas hospitals, the Medicaid Program, and other large health insurers in the state as well as Arkansas Children’s Hospital, the University of Arkansas for Medical Sciences, and the Arkansas medical community. Professional education and public awareness will be an important part of the expansion.
“While this important expansion of newborn screening is very good news for families, the lives of 500,000newborns 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 is proud of its partnership with the State of Arkansas and we congratulate Governor Beebe and the Department of Health on the progress they have made toward the goal of ensuring that all babies there are screened for these 29 serious conditions,” said March of Dimes Regional Vice President, Paula Howell. “We are pleased that the Department of Health will implement expansion of its newborn screening program in July of next year and look forward to the day when all babies across the country are screened for these devastating conditions.”
Contact the March of Dimes at 800-234-8144 and join efforts to continue to advocate for the well-being of babies in Arkansas.
“As a leading organization focused on moms and babies, March of Dimes remains focused on efforts to ensure that all Arkansas’ babies have a chance for a healthy start in life,” said March of Dimes State Director, Clay Mercer. “We encourage Arkansans to join us in advocating for the day when all babies will be born healthy and full term.
” 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 their 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.
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