State’s infants will be screened for dangerous adrenal hyperplasia

Afsha Bawany

Tuesday, Sept. 16, 2003 | 9:27 a.m.

The state Health Division agreed last week to include testing for congenital adrenal hyperplasia, a condition that can be fatal if not caught early in infant screening.

The inclusion came as part of a motion calling to raise the birth registration fee to pay for expanded newborn screenings.

The Health Division implemented testing for more than 25 new disorders including congenital adrenal hyperplasia, commonly known as CAH, but in the beginning of August the state dropped a CAH test screening from the state plan due to budget constraints.

Now the funding is available and children's health advocates are "elated and relieved," said Gretchen Alger Lin, a local activist for the Congenital Adrenal Hyperplasia Research, Education and Support Foundation.

The current newborn screening costs the state $44 per infant and will be raised to $64. Most of the costs will be picked up by health insurance, state officials have said.

"It's a big jump but we're taking about saving hundreds of lives in Nevada. These are rare diseases," Lin said.

According to the foundation's website, CAH causes a genetic defect of the adrenal gland and limits the amount of vital hormones called cortosteroids the body produces, thus causing an overproduction of adrenals or male sex hormones. It can affect a child's growth and become life-threatening in its most severe forms.

The meeting brought local health advocates, parents of children living with the disease and a pediatric endocrinologist who specializes in CAH to advocate the addition of the CAH screening test.

As soon as paperwork can be sorted out, a lab in Oregon will begin handling the testing, Martha Framsted, a Health Division spokeswoman, said.

"The Health Division was very supportive. It's great news for newborns and parents of Nevada," Framsted said.

CAH occurs in one of every 15,000 births, and if undiagnosed, it could cost the state much more money than just one test, Lin said.

"No other family will need to go through holding a dying child in their arms not knowing what's going on," Lin said.