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Mulroe ensures babies screened for rare diseases

baby 081418CHICAGO – Bureaucratic hurdles standing in the way of newborns receiving life-saving health screenings will be eliminated under a new law sponsored by State Senator John G. Mulroe (D-Chicago).

“Parents need to know if their newborn has a lysosomal storage disorder so they can plan for their child’s needs,” Mulroe said. “Yet, complicated rules have prevented children from being tested for these life-altering diseases for nearly a decade after the law mandated us to do so. Their lives should not be put on the line because of red tape.”

State government operates under a web of purchasing and contract rules which govern how it solicits goods and services. An October 2017 report from the Chicago Tribune found this bureaucracy prevented the state labs from starting up this important newborn testing.

Originally passed in 2007, the Newborn Metabolic Screening Act mandated testing for diseases, including Krabbe. The disease presents no symptoms at birth, but the genetic defect causes a lack of an enzyme that sustains the protective coating around nerve cells, leading to a painful, debilitating condition. If detected early enough, treatments can be arranged to improve the quality of life.

Since the passage of the 2007 law, the initial deadline of 2010 has been extended as the Illinois Department of Public Health struggled to comply with the screening requirements due to a lack of the necessary technology, equipment, commodities and services to meet them. Ten years of regulatory missteps and byzantine state contracting rules prevented the screenings from being performed until December 2017.

House Bill 4745 exempts newborn screenings from those purchasing rules. 

“Illinois has been derelict in its duty to prevent this suffering,” Mulroe said. “This is the first step toward fixing that.”

The legislation was signed into law Friday. It takes effect immediately.

Sen. John G. Mulroe

mulroe-2014-150

10th District
(Retired)

Years served: 2010 - 2019

Committee assignments: Commerce and Economic Development; Criminal Law; Executive; Insurance (Vice-Chairperson); Judiciary (Chairperson); Public Health; Subcommittee on Const. Amendments.

Biography: Born July 21, 1959, in Chicago; BBA, accounting, Loyola University; J.D., Loyola University School of Law; member of Chicago and Illinois State Bar associations; full-time attorney; former assistant state's attorney and arbitrator for Cook County; certified public accountant; married (wife, Margaret), four children.

Associated Representative:
Robert Martwick
Michael P. McAuliffe