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Few States Offer Adequate Newborn Screening; Most Fall Short of March of Dimes Recommendations
Only nine states make the grade; 18 states offer only 5 tests or fewer.
WHITE PLAINS, N.Y., JULY 29, 2003 – Every baby born in the U.S. undergoes some newborn screening, but few parents may realize that the number of disorders their baby will be screened for depends entirely on the U.S. state in which the baby is born.
The March of Dimes recommended in 2000 that all babies receive screening for a minimum of nine metabolic disorders and be given a hearing test. These screenings can sometimes mean the difference between a healthy start in life and disability, or even death, for a baby. The tests recommended by the March of Dimes lead to reliable diagnosis of conditions for which there is a proven treatment for a newborn's metabolic or hearing deficiency.
“While nearly all babies born in the U. S. undergo some newborn screening, the number of screened disorders varies greatly by state,” said Dr. Jennifer L. Howse, president of the March of Dimes. “While a few states may screen for even more than these nine metabolic disorders, only nine states now provide all nine tests recommended by the March of Dimes. Expansion of newborn screening has been a March of Dimes priority for three years, and our chapters have worked closely with governors, state legislators, and health departments to increase access to these important tests.”
The March of Dimes is the first national non-profit health organization to recommend that every baby born in the U.S. receive at minimum screening for the same core group of disorders. The metabolic disorders on the recommended list for screening are: phenylketonuria (PKU); congenital hypothyroidism; congenital adrenal hyperplasia (CAH); biotinidase deficiency; maple syrup urine disease; galactosemia; homocystinuria; sickle cell anemia; and medium-chain acyl-CoA dehydrogenase (MCAD) deficiency. The March of Dimes and the American Academy of Pediatrics also advise a hearing test for all newborns.
“States spend an average of $24.99 per baby on these tests, according to a recent report from the U.S. General Accounting Office, while the tragic cost of a child disabled by a genetic disorder is inestimable to families and to society,” Dr. Howse said.
Ask Kelley R. Leight of Short Hills, New Jersey. Her daughter Alyssa was born ten years ago with a form of congenital adrenal hyperplasia (CAH) at a time when New Jersey did not screen for that disorder. Today, thanks to Ms. Leight’s advocacy efforts and those of the March of Dimes, New Jersey has increased its screening tests from four to 14, including the CAH test.
“Here we have a simple and inexpensive solution to a potentially devastating problem,” said Dr. Howse. “It's time for all states to make newborn screening a top priority.”
Currently, only nine states screen for the nine March of Dimes-recommended list of disorders: Illinois, Indiana, Maine, Massachusetts, Mississippi, New York, Oregon, Rhode Island and Wisconsin. Eighteen states offer five or fewer tests. Although most states have approved screening for hearing impairment, 11 states currently do not ensure that at least 90 percent of babies actually get tested.
Newborn screening is done by testing a few drops of blood, usually from a newborn’s heel, before hospital discharge. If a result is positive, the infant will usually be re-tested and given treatment as soon as possible, before becoming seriously ill from the disease.
Currently, parents seeking screening for disorders not currently done by their state must arrange for a private lab to perform screening for their newborn, often with additional out-of-pocket expense. Parents are encouraged to check with their state’s department of health to determine what newborn screening tests are offered. In some states, approval and funding of expanded screening may be in development. In other states, legislators may need encouragement to give attention and resources to these programs.
Dr. Howse said the March of Dimes urges Congress to appropriate funds to Title XXVI of the Children’s Health Act, which would provide states with funding for newborn screening equipment, training, and public/professional education.
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