Michigan to offer nine out of nine recommended metabolic tests

(Southfield, MI, August 4, 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.

Michigan will begin screening for nine metabolic tests and 93% of the newborn population is screened for hearing.

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.

“We are proud of the March of Dimes commitment to saving babies and their families from the tragedy of problems not caught and treated in time.  We will continue to support quality standards and use of only the newest, best available tests,” said Dr. Richard Smith, director of the adolescent pregnancy clinic at Henry Ford Hospital.  “We also remain committed to having all newborns screened for hearing, which can prevent developmental disabilities.”

“Expansion of newborn screening has been a March of Dimes priority for three years, and our chapter has worked closely with the Michigan Department of Community Health 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 of 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.

Michigan will begin testing for homocystinuria in September, thanks to the advocacy efforts of the March of Dimes and other groups involved in promoting maternal and child health.

“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.

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 states.  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 as 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.

The March of Dimes is a national voluntary health agency whose mission is to improve the health of babies by preventing birth defects 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 five-year campaign to address the increasing rate of premature birth.  For more information, visit the March of Dimes Web site at www.marchofdimes.com, its Spanish Web site at www.nacersano.org, or call
1-888-MODIMES.  For free access to national, state and county-level statistics related to pregnancy and maternal and infant health, visit Peristats, an interactive data resource from the March of Dimes at www.marchofdimes.com/Peristats.