June 2004

March of Dimes Birth Defects Foundation

Only 21 states offer newborn screening tests recommended by March of Dimes

Some screening programs sit idle for lack of funding, threatening the health of babies

WHITE PLAINS, N.Y., JUNE 30, 2004 – Seventy percent of babies born in the U.S. still fail to get the minimal number of newborn tests recommended by the March of Dimes, according to the non-profit's 2004 state-by-state report card on newborn screening.

The March of Dimes is the first national health organization to recommend that every baby born in the U.S. receive, at a minimum, screening for the same core group of nine metabolic disorders as well as hearing deficiency. The March of Dimes encourages states to add more screening tests as resources and capabilities allow.

Few parents realize that the extent of this testing depends entirely on the state in which their baby is born. These tests can sometimes mean the difference between a healthy start in life and disability, or even death, the March of Dimes says.

"The number of screened disorders continues to vary greatly by state. Here we have a simple and inexpensive solution to a potentially devastating problem, and it's time for all states to make newborn screening a top priority," says Dr. Jennifer L. Howse, president of the March of Dimes and a member of the U.S. Department of Health and Human Services Secretary's Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children.

"Our chapter staff and volunteers have been working closely with governors, state legislators, and health departments to increase access to these important tests," Dr. Howse says. "I'm encouraged to report today that since this time last year, the number of states that test for the nine core metabolic disorders has risen from nine to 21."

Currently, 21 states screen for the March of Dimes-recommended list of metabolic disorders: Alaska, Connecticut, Hawaii, Idaho, Illinois, Indiana, Iowa, Maine, Maryland, Massachusetts, Mississippi, Nevada, New York, North Dakota, Oregon, Rhode Island, Tennessee, Vermont, Virginia, Washington, and Wisconsin. In 2002, these states accounted for about 1.3 million of the approximately 4 million live births in the U.S. "This means that only about 32 percent of the babies born in this country are receiving the recommended screening," Dr. Howse says.

Fourteen states, plus the District of Columbia, currently offer tests for six to eight of the conditions on the March of Dimes list. Another fifteen states, plus Puerto Rico, currently offer tests for only five or fewer conditions. Nine states (Delaware, Florida, Georgia, Kentucky, Michigan, Minnesota, Oklahoma, South Carolina, and Wyoming) have authorized expanded newborn screening, but testing currently is not being implemented.

Another seven -- Louisiana, Missouri, Montana, Nebraska, New Hampshire, Pennsylvania, South Dakota -- are testing only selected populations within the state or are running pilot programs that do not include all babies.

Although most states have approved screening for hearing deficiency, seven states currently do not ensure that at least 90 percent of babies actually get tested, the March of Dimes says.

Dr. Howse says the March of Dimes urges Congress to provide $25 million to fund Title 26 of the Children's Health Act of 2000 to help improve and strengthen state newborn screening programs.

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 test for hearing deficiency for all newborns.

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 privately for their newborn to be screened, 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.

To learn about the tests offered by your state, see the list at marchofdimes.com/nbs.

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 marchofdimes.com or its Spanish Web site at nacersano.org.

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 marchofdimes.com/Peristats.