New law mandates screening newborns for deadly disease

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By Stan Polanski, Effingham Daily News

A law Gov. Bruce Rauner signed this week could help save a child’s life, according to the local legislator who sponsored it.

The law requires all newborns be screened for adrenoleukodystrophy (ALD).

“It’s a rare disease, but it’s devastating,” said Dr. Ryan Jennings, chief medical officer at HSHS St. Anthony’s Memorial Hospital in Effingham. “By detecting it in newborns, there are a few treatment options that seem to be beneficial.”

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The law, sponsored by state Sen. Dale Righter (R-Mattoon), will take effect in hospitals July 1.

Righter said Medicaid and insurance will cover the costs of the screening.

“The bill pays for itself,” he said. “When we advocate for things, we need to able to pay for them.”

He believes the bill was a responsible move for the state considering the current budget impasse.

ALD is a genetic disease that most severely affects boys and men. The brain disorder destroys myelin, the protective sheath that surrounds the brain’s neurons — the nerve cells that allow people to think and to control muscles.

“ALD appears mainly in childhood, especially between the ages of 4 and 10 years old,” Righter said. “That’s why it’s of the essence to test newborns right away. The disease comes out of nowhere.”

Such a sudden deterioration is why this law needed to be passed, Righter said.

“Screening for ALD at such an early age will help save lives,” Righter said in a press release. “All too often, those with ALD are diagnosed too late for treatment to work.”

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Stan Polanski can be reached at [email protected] or 217-347-7151 ext. 131.

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