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More Newborn Screening Urged

At least nine tests recommended, March of Dimes says

(HealthDay is the new name for HealthScoutNews.)

TUESDAY, July 29, 2003 (HealthDayNews) -- When a newborn leaves the hospital in New York state, part of the checkout procedure is a pinprick on the heel that causes five drops of blood to drip on a small, sensitized sheet of paper. That bit of paper goes to a state laboratory, where it is tested for no less than 11 congenital disorders.

Those tests produce about 10,000 positive results. Sickle cell anemia is the most common condition detected, with an incidence of 1 in 400 in black babies, but the tests also turn up cases of much less common conditions: congenital adrenal hyperplasia (1 in 5,000), phenylketonuria (also known as PKU, 1 in 12,000), biotinidase deficiency (1 in 70,000) and maple syrup urine disease (1 in 250,000). The results go off to the affected children's doctors so treatment can begin quickly.

New York is a leader in newborn screening, and the March of Dimes Birth Defects Foundation is now urging other states to have programs of similar scope, screening for at least nine conditions.

"Only nine states now provide all nine tests recommended by the March of Dimes," says a prepared statement by Dr. Jennifer L. Howse, president of the organization. While every state has a program of one sort or another, some screen for as little as five or even three conditions. Some states perform much more strongly than others. Mississippi, for instance, tests for 39 diseases, according to Save Babies Through Screening Foundation, an advocacy group. New Hampshire requires testing for six, not including sickle cell disease, according to the group's Web site.

This is not the best time to be asking deficit-ridden states to spend more money, but it can be done. This year, New York added a test for cystic fibrosis, the culmination of three-year effort, says Kenneth Pass, director of the state's newborn screening program.

No one has done a cost-benefit analysis of the screening program, Pass says, but there is a feeling that, aside from the human benefits, money is saved over the long run.

A recent report of the U.S. General Accounting Office estimates a price of $24.99 for each baby screened. "By intervening early in a child's life, you can reduce morbidity and mortality," Pass says. "Untreated, children with PKU will have an IQ under 90. Treated, they will have a normal IQ and will become productive members of society."

One fervent screening advocate is Kelly R. Leight, a New Jersey woman whose daughter was found to have congenital adrenal hyperplasia (CAH), defective production of hormones by the adrenal gland, at age 7. She was not tested for the condition at birth.

Leight became the founder and executive director of the Congenital Adrenal Hyperplasia Research, Education and Support (CARES) Foundation, which has gotten similar-minded parents together to badger states into improving their screening programs. New Jersey now tests for CAH as part of a 14-test package that puts it in the forefront of screening.

"We've been active in other states," she says. "We got Ohio to do it [screen for CAH] and we've worked with the state of Nevada over the last couple of months. They're not sure about doing it, but we have a good group of parents who went to the legislators and the state Department of Health." Those efforts have paid off: Nevada has added three tests to its list, making it the 10th state to screen for at least nine conditions, according to the March of Dimes.

What Leight wants is a repeat of her experience with New Jersey. "Our timing was good and we worked with families with children with other diseases. The state had hearing in the year 2000, and we told them about the benefits that accumulate."

"Basically, you're going to save the lives of children and prevent mental retardation and severe physical disabilities. People think it costs money, but you really save money. The only cost the state incurs is for the tests. If a child is disabled, he or she will be on Medicaid, and the state will have to pay for care for life."

More information

A full list of the recommended screening tests is available from the March of Dimes Birth Defects Foundation. You can also try the U.S. Centers for Disease Control and Prevention or the National Newborn Screening and Genetics Resource webpage. How does your state fare? Go to Save Babies Through Screening. And for more about CARES, check their site.

SOURCES: Kenneth Pass, Ph.D., director, newborn screening, New York State Department of Health, Wadsworth; Kelly R. Leight, executive director, Congenital Adrenal Hyperplasia Research, Education and Support Foundation, Short Hills, N.J.; July 29, 2003, March of Dimes Birth Defects Foundation report
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