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FOR RELEASE: February 10, 2005
Valentine’s Day to Mark Expansion of Newborn Screening in Oklahoma
Valentine’s Day, Monday, Feb. 14, will have special relevance for Oklahoma families of newborns born that day and afterward. Effective that date, the Oklahoma State Department of Health will expand its newborn screening program to include screening for two additional disorders: cystic fibrosis and congenital adrenal hyperplasia.
State public health officials say these tests and the provision of follow-up services to ensure treatment within the first weeks of life for affected newborns will help saves lives and prevent severe disability.
To commemorate the expansion of the newborn screening program, selected public health officials and newborn screening program staff will be wearing a bright blue wristband on Valentine’s Day that says, “Breathe.” While the simple act of breathing is something most persons take for granted, it can be extremely difficult for someone living with cystic fibrosis (CF). Testing for CF in newborns will allow for early detection of the disorder so complications can be prevented or improved. Newborns will also be tested for congenital adrenal hyperplasia (CAH), a disorder that can lead to death if not treated within the first weeks of life.
The addition of these two tests is an important step in moving Oklahoma toward meeting March of Dimes recommendations for uniform national newborn screening. In addition to funding the expansion of the newborn screening program to include CF and CAH screening, the State Board of Health has added a third test for implementation later this year. That test will be for the metabolic disorder medium-chain acyl coenzyme A dehydrogenase deficiency (MCAD). The Oklahoma State Department of Health has purchased new equipment to allow for MCAD testing as well as 30 other metabolic disorders.
Oklahoma is one of nine states offering CF screening to all newborns, and is the 39th state to add CAH screening. Oklahoma’s newborn screening program also screens for the disorders of phenylketonuria (PKU), congenital hypothyroidism, classic galactosemia, and sickle cell disease. In 2004, the Oklahoma State Department of Health screened more than 50,000 newborns for genetic disorders and identified 32 newborns with a disorder. Expanded screening is expected to identify 17 newborns with CF and two with CAH each year.
In addition to screening, Oklahoma newborns identified with a disorder receive comprehensive follow-up program services to ensure optimal healthy outcomes, a unique service when compared to newborn screening efforts provided by other states.
“The consequences of not detecting these conditions early are devastating. Without early detection and subsequent intervention, newborns may suffer profoundly, and for some of the disorders, there is a risk of death,” said Pam King, director of Genetics. “The cost to screen an infant is far less than the cost of failing to promptly identify affected infants.”
Without the screening test, doctors are often unable to identify these disorders quickly. Failure to screen one affected infant can result in an odyssey of frequent hospital stays and invasive procedures trying to determine a diagnosis. Studies have shown costs for hospitalizations and diagnostic procedures can easily exceed $500,000 for one infant. The cost for disability services and in some cases institutionalization for profoundly affected infants who did not receive prompt treatment can exceed $1 million annually.
“Even so, these costs are immeasurable when compared to the effect that the loss of an infant’s life has on a family,” said State Health Commissioner Dr. Michael Crutcher. “That’s why we are indebted to the Board of Health and its many partners who were committed to improving the health of Oklahoma’s children.”
Crutcher said expansion of the newborn screening program was successful due to diverse support from legislators, families and health care providers. Key legislative support came from Sen. Bernest Cain, Rep. Joe Eddins, and Rep. Al Lindley. Other key stakeholders included members of the Oklahoma Genetics Advisory Council and its Newborn Screening Committee, and interested families: Dr. John Mulvihill, Dr. Edward Brandt, Dr. James Coldwell, Dr. Kenneth Copeland, Dr. James Royall, Dr. John Kramer, Dr. Terence Carey, Larry Weatherford, Amy Moomey, and Terry and Don Detrich.
“Enhancing newborn screening services is a way to prevent mental retardation, improve health, and save lives. When we improve the quality of life for our children, we also improve the quality of life for Oklahoma’s future,” Crutcher said.
For more information about newborn screening services, contact Pam King, director of Genetics, Oklahoma State Department of Health, 405/271-6617.
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