Krabbe screening gets final approval after decades-long push from Kelly's Hunter's Hope Foundation
BUFFALO, N.Y. (WIVB) – The family of Bills legend Jim Kelly celebrated the news this week that Krabbe disease was officially added to a panel of recommended tests for newborn babies.
The formal approval from Health and Human Services Secretary Xavier Becerra marked a long-awaited victory in a battle spearheaded by Kelly and his wife, Jill, who launched the Hunter's Hope Foundation in 1997 after their son was diagnosed with the disease.
Krabbe can cause children to lose voluntary and basic functions, proving fatal if not detected early. Now, with addition to the Recommended Uniform Screening Panel (RUSP), children can be tested early and can get treatment to live a healthy life.
This week's announcement came after a federal panel voted 10-3 to add the disease to the RUSP in January, sending it to Becerra for final approval.
“It’s been so long. We’ve been fighting so much for this,” Jill Kelly told WIVB News 4 in January.
News 4 reported then that almost a dozen states, including New York, already test for Krabbe in newborn screening. But with federal approval, many more states will likely add it to their screening panel in the next few years.
In a letter from Becerra shared by Jill Kelly, Becerra wrote, "While the addition of infantile Krabbe disease to the RUSP does not constitute a requirement for states to implement screening ... most group health plans and health insurance issuers are required to provide coverage without cost-sharing for evidence-informed preventive screenings for conditions that are included on the RUSP."
Becerra also requested a follow-up study within five years to provide an update on the implementation of Krabbe screening nationwide.