Gov. signs Rep. Cross’ diabetes registry bill into Lilly’s Law
When Illinois Rep. Tom Cross (R-Oswego) heard the story of 9 year old Lilly Jaffe, he knew he wanted to work with University of Chicago medical professionals to get a bill passed (House Bill 2481), so that other little boys and girls might benefit from the same life-changing breakthrough that Lilly experienced.
In 2006, Lilly Jaffe, a six-year-old North Shore suburban girl who had been diagnosed with type 1 diabetes when she was one month old, checked into the Clinical Research Center at the University of Chicago Medical Center. A few days later, with her doctor’s blessing, Lilly disconnected her own insulin pump for the last time.
The fourth grader now takes pills to treat her condition rather than an insulin pump.
“This was a true medical miracle for which we are eternally grateful. This breakthrough was dramatic and life-changing for Lilly as well as our entire family” said Laurie Jaffe, Lilly’s mother. “Our family appreciates the forward-thinking and bipartisan support of Lilly’s Law by Illinois legislators. We hope that other state legislatures will be inspired by Illinois’ leadership and enact this law throughout the country.”
Doctors discovered that Lilly suffered from an unusual form of diabetes caused by a genetic mutation rather than the errant immune system responsible for type 1 diabetes. Such “monogenic” forms of diabetes in children are just being recognized and studied.
“After hearing the story about Lilly, we worked with the University of Chicago to come up with legislation that sets up 3 year pilot program that will create the “neonatal diabetes mellitus registry program,” said Cross. “I want to commend U of C’s Dr. Louis Philipson, Director of the Kovler Diabetes Center and his colleague Dr. Graeme Bell for all of their efforts in this cause and their tremendous help and expertise in this area.”
Lilly’s Law will require physicians and other healthcare providers around the state to report certain information to the Department of Public Health regarding patients with diabetes mellitus with onset before 12 months of age. The information will be compiled in a registry for research.
“Monogenic diabetes is rare but life-changing when diagnosed. Helping people move from insulin to pills is incredibly satisfying and we hope a taste of things to come for the majority of people with diabetes” said diabetes specialist Dr. Louis Philipson, professor of medicine and pediatrics at the University of Chicago.