Springfield, IL… In response to the State’s slow moving efforts to expand newborn screening tests, State Representative Michael McAuliffe (R-Chicago) unanimously advanced legislation to help speed up the implementation process of additional tests like Krabbe disease.
Krabbe disease is a rare neurological illness that must be identified as soon after birth as possible if it is to be treated. By the time symptoms appear in babies, it is often too late to receive treatment. A state law passed in 2007 added Krabbe to the newborn screening panel, a state-mandated public health program designed to catch certain genetic, metabolic, and congenital disorders in newborn babies. Ten years later and testing is still slow to be administered. Five children in Illinois have died of Krabbe since the statewide screening should have begun.
“Early identification can literally mean life or death in these tragic situations,” Rep. McAuliffe said. “The sooner we can get these tests implemented, the more babies lives we will save. Bureaucratic red tape should not stand in the way of that.”
New tests and screenings as well as medical advancements require new equipment. House Bill 4745 amends Illinois’ procurement law so that it no longer applies to contracts for services, information technology purchases, commodities, and equipment to support the delivery of timely newborn screening services provided by the Illinois Department of Public Health (IDPH). The procurement process, while intended to make sure we’re getting the best use of taxpayer dollars, is often lengthy and cumbersome. Last fall IDPH testified before the House Health Care Availability and Access Committee and said that the nearly two year procurement process is partly to blame for the delayed implementation of new testing.
HB 4745 passed out of the State Government Administration Committee 7-0 and will now be considered by the full House of Representatives.