Tuesday, Aug. 19, 2003 | 11:05 a.m.
The health division will hear comments on newborn screening at 9 a.m. on Sept. 12. The meeting will be videoconferenced at the Sawyer State Office Building, 555 E. Washington Ave., Room 4412.
When the state Health Division meets next month to talk about raising birth registration fees to pay for expanded newborn screenings, a group of children's health activists will be there asking why testing for one congenital disorder has been dropped from the state plan.
The Sept. 12 meeting is to discuss increasing the fee paid for birth registration from $28 to $60 to cover the cost of expanded newborn screening. The cost is expected to be borne primarily by insurance providers.
Activists are upset because the disorder Congenital Adrenal Hyperplasia, more commonly known as CAH, has been unexpectedly dropped from the proposed expanded screening.
"It appears that a decision was made to drop the CAH testing because the added money wasn't enough to cover the extended panel," said Gretchen Alger Lin, a local activist with the Congenital Adrenal Hyperplasia Research, Education and Support Foundation.
The genetic defect of the adrenal gland limits the amount of vital hormones called cortosteroids the body produces and causes overproduction of adrenals, or the male sex hormone, according to the foundation's website. It can affect children's growth and, in its most severe forms, be life-threatening.
The foundation has worked to expand newborn screening nationwide for two years, Kelly Leight, its executive director, said. She added that the group had been working in Nevada since December 2002.
"We had been working for quite awhile" in Nevada, she said. "And we finally thought we got there."
Foundation members were surprised by the state's decision to drop CAH testing because the health division, with whom they had been working, was so receptive to the idea of adding the screening, Leight said.
But when the state sent out requests for proposals when it was seeking out a newborn screening contract that would incorporate the expanded testing, it did not include CAH, Lin said. After the group approached the state, it recalled the requests and added CAH as a disorder that would need to be tested.
"They found it a sensible addition to the screening program," Lin said, quoting a letter she had received from the health division.
She added, "Then something weird happened along the way."
Though CAH was dropped from the initial proposal, Martha Framsted, a health division spokeswoman, said the testing has only been delayed.
She said at the September meeting it will be recommended that CAH testing be implemented July 1, 2004. She added the department supports the testing but does not have the funding until after the proposed fee increase goes into effect.
The current newborn screening costs the state $44 per infant, Framsted said, adding CAH will increase the cost to $48 per infant.
However, Leight whose daughter has a form of the disorder called non-classical CAH, said she is wary of the delay.
"The problem is I've seen these things before," she said. "There's always an excuse."
The financial excuse that Leight has heard doesn't justify delaying CAH testing, since it is more common than other disorders that will be tested, she said. CAH occurs in one of every 15,000 births, she said.
There are 34,000 children born every year in Nevada and, if just one child on Medicaid goes to the hospital with undiagnosed CAH problems, it will cost the state much more money than the test, Leight said.
"It really saves money in the long run," she said. The test "is really pennies in terms of the state budget."
Members of the foundation will be at the September meeting, with parents ready to testify about the importance of expanded newborn screening and officials advocating creation of an advisory board of doctors to help guide the decisions the Health Division makes regarding newborn screening.
Leight said she believes the decision to drop CAH was arbitrarily made by bureaucrat.
"There needs to be an advisory board for newborn screening so administrators aren't making these important decisions," she said.
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