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Newborn Screening Bill Passes - Huntington Herald Dispatch - April 2007
27-Apr-07
LOCAL NEWS | Tuesday, April, 3, 2007
Huntington Herald-Dispatch
New law expands newborn testing
By TOM BREEN
The Associated Press


CHARLESTON -- Cadence Pierce smiles shyly from beside her mother. In a pink dress and matching
purse, the little girl from New Martinsville is the picture of good health.

Yet this 11-year-old has been through more medical emergencies than most people five times her age,
and they began when she was 2 weeks old.

Afflicted with a rare metabolic disease, Cadence went into a coma as doctors tried to figure out what was wrong with her. Liver
failure, seizures and other traumas left her with brain damage -- and could have been largely avoided if she had just been tested
at birth for a range of genetic illnesses.

On Monday, Gov. Joe Manchin signed into law a bill that expands the number of diseases newborns will be tested for from nine to
29, making West Virginia the 45th state to test for 15 or more.

The legislation (H.B. 2583) was one of six health bills Manchin signed during a ceremony at the state Capitol.
With a stroke of a pen, Manchin cut the number of states that test for fewer than 15 conditions at five -- Washington, New
Hampshire, Oklahoma, Arkansas and Kansas, according to the Texas-based National Newborn Screening and Genetics Resource
Center. The latter two test for seven diseases, the fewest in the country.
Cadence and her family were on hand to watch as Manchin signed the legislation. Cadence has an older brother, Josh, who suffers
from a similar illness that wasn't detected at birth. But her younger brother was screened at the family's insistence, and has been
spared the problems of his siblings.

"If she had been tested at birth, she wouldn't have brain damage, and neither would Josh," said their mother, Leslie Pierce.
The summer Cadence was born, she spent months at West Virginia University hospitals, where doctors labored to save her young
life. Roughly three-quarters of the children born with her condition die within the early stages.

"It's such a ferocious disease," Leslie Pierce said. "She was lucky to make it through two diagnoses."

Hospitals test for the expanded list of illnesses the same way they now test for nine "core conditions" -- by pricking the newborn's
heel and screening a few drops of blood.

At the ceremony, Manchin said earlier efforts to expand the list of genetic illnesses screened at birth had stalled over concerns
about increased costs. "Every time we talk about something, someone puts a fiscal note in front of me and says how much it's going to cost," he said. By catching illnesses early, though, Manchin said, the state stands to save millions in later medical costs.

For Jay and Leslie Pierce, who have already spent nearly a million dollars on Cadence's treatments, the new law is bittersweet. But
if another family can be spared what they went through that July 11 years ago, Jay Pierce said, they can take some comfort in that.


Ask members of Congress to sponsor the Preemie Act.