Senate approves Miller bill to create Rare Disease Advisory Council

The Minnesota Senate today unanimously passed legislation that would create a new advisory council at the University of Minnesota to quarterback the study and treatment of rare diseases.

The bipartisan bill, authored by Sen. Jeremy Miller (R-Winona), creates the Chloe Barnes Rare Disease Advisory Council at the University of Minnesota. The panel is named in memory of two-year-old Chloe Barnes, a Hopkins girl who passed away from metachromatic leukodystrophy in 2010, and it will identify best practices to diagnose and treat rare diseases, educate the public, and advise state agencies on related policy issues.

“The first things that families seek after a life-altering diagnosis are guidance and support,” said Sen. Miller. “But with rare diseases that information can be difficult to come by. Creating this new Rare Disease Advisory Council will help families receive faster diagnoses, advance groundbreaking research, and ultimately help find cures.”

“I am especially proud of the amazing grassroots effort behind this bill,” added Sen. Miller. “This was driven by everyday people who took a difficult situation and channeled their frustration, their grief, and their anxiety into something incredibly positive. This includes the family of Chloe Barnes and the Quimby family from Winona who lost their 5-year-old son Gavin to a rare disease. I’m proud to play a small part in their story.”

The Council will partner with legislators and other government leaders to provide expert opinion on the provider‐patient relationship, increase access to vital life‐saving medications and therapies, and bring cutting-edge research and technologies to Minnesota. Physicians, nurses, hospital administrators, rare disease advocacy organizations, caretakers, and patients themselves will have a seat at the table.

To facilitate close collaboration with experts at the Mayo Clinic School of Medicine and the University of Minnesota Medical School, the Council will be established within the University of Minnesota.

According to the National Institutes of Health (NIH), a disease is rare if it affects fewer than 200,000 Americans. There are an estimated 30 million (1 in 10) Americans living with a rare disease—and more than half of these patients are children. Treatments are only available for five percent of the more than 7,000 known rare diseases, and diagnosis takes an average of 7-8 years. The responsibility of funding research typically falls on affected families, their friends, and small patient organizations. However, advances in diagnostics and gene therapies have significantly increased the odds of discovering breakthrough treatments.

The Council is supported by thirty-seven patient and industry organizations, including: ALS Association, Medical Alley Association, Children’s Hospitals and Clinics of Minnesota, Gillette Children’s Specialty Healthcare, Mayo Clinic, and Minnesota Rare Action Network.