Fund newborn screening

Last year, Illinois became a national leader when Gov. JB Pritzker signed a law to add Duchenne muscular dystrophy to the state’s newborn screening panel. But the screenings haven’t started yet — because lawmakers haven’t funded them.

As the parent of a child with Duchenne, I know the critical value of early detection too well. My son Andrew didn’t meet milestones as a toddler, but we were repeatedly told to wait and see. By the time we got a diagnosis, years of permanent muscle damage had already taken hold.

Duchenne is a rare genetic disease that causes progressive muscle loss, often leaving children in wheelchairs by their teens and cutting lives tragically short in young adulthood. Yet babies can appear healthy at birth. Without newborn screening, most families don’t get a diagnosis until age 5, years too late for treatments to be most effective. An FDA-authorized screening test has existed since 2019. And while Duchenne is more common than many conditions already on the screening panel, Illinois families still face an average two-year diagnostic odyssey, with huge emotional and financial costs.

Newborn screening changes that. It opens the door to quickly accessing groundbreaking treatments that can preserve mobility and extend life. Andrew was lucky to enter a clinical trial soon after we learned he had Duchenne, and thanks to that early intervention, he’s now thriving.

This is not a cost burden — it’s a cost saver. Early detection means avoiding misdiagnoses, detrimental therapies, and the waste of state resources. Most importantly, it gives families the chance to hope and plan.

For babies born with Duchenne, time is muscle. Lawmakers have already agreed Duchenne screening should happen. Now they must fund it.

Nate Plasman

Lombard