Atlanta Journal Constitution
More Newborn Screening Urged

(HealthDay is the new name for HealthScoutNews.)

TUESDAY, July 29 (HealthDayNews) -- . . .

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."

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