State legislators on both sides of the aisle introduced “Collin’s Law” Thursday, which would require Wisconsin newborns to be screened for a nervous system disease known as Krabbe Leukodystrophy.
The family of Collin Cushman, a 4-year-old from Wisconsin Rapids, whom the legislation is named after, explained at a press conference that if the disease is not caught at birth, the treatment would arrive too late and be ineffective. The symptoms begin during the first few months of life and grow more severe.
The authors of the proposed bill, state Sen. Julie Lassa, D-Stevens Point, Rep. Todd Novak, R-Dodgeville, and Rep. John Spiros, R-Marshfield, joined families who have children suffering from the disease at the Capitol Thursday.
Krabbe, which affects just one in every 100,000 people in the U.S., damages the protective coating that surrounds nerve cells throughout the nervous system, according to the Mayo Clinic. Left untreated, the disease tends to claim the lives of its victims before they reach their 2nd birthdays.
Available treatment allows patients to survive with the disease, but early detection is crucial. Symptoms often do not appear before the infant is six months old.
“It’s estimated that the medical costs of each untreated child affected by Krabbe and similar types of diseases cost a state at least $700,000 annually,” Lassa said in a statement. “That is in addition to what the families must pay for continuous nursing care for their children.”
Lassa added she hopes “Collin’s Law” will enjoy wide bipartisan support.