New bill would create council to help families dealing with rare diseases

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New legislation introduced at the Minnesota State Capitol would lighten the burden for families dealing with rare diseases. If passed, the bill would create a rare disease advisory council, aimed at connecting politicians, families, insurance companies and health care providers. 

Parents and patients believe the group could make a positive impact on their lives during a heartbreaking journey. 

Like many other rare diseases, Chloe Barnes’ diagnosis was hard to pronounce. When she was about 2 years old, the Hopkins toddler was diagnosed with a rare neurodegenerative disease called metachromatic leukodystrophy. She died in 2010. 

“Too often it falls on a rare patient to be his or her own disease expert, research funder, policy advocate and health system navigator,” said Chloe’s mother, Erica Barnes.

A rare disease is defined as a condition that affects fewer than 200,000 Americans. The National Institutes of Health has identified about 7,000 rare diseases. 

An estimated 1 in 10 Americans lives with a rare disease. Nearly half of those patients are children. 

“I remember my husband once asking me in exasperation, Erica, why are you trying to do it all. To which I responded, because it all has to get done,” Erica Barnes said. 

After her death, Chloe’s parents started a foundation to help other families. They are now advocating for a bill that would create the Chloe Barnes Rare Disease Advisory Council. 

“Patients have to have to have somewhere to go for research. Research has to get funded. Policy has to make sense for rare patients and their unique circumstances. The rare disease advisory council can provide the infrastructure that is so desperately lacking in the rare community,” Erica Barnes said. 

The council’s goal would be to find the best ways to diagnose and treat these diseases, raise awareness and help policy makers provide support for these families. 

“As a rare disease patient, although we all have different diagnoses, we all face very similar issues within insurance, or healthcare, and because of this, one council that covers all rare disease as a general topic will help so many more patients,” said Abbey Hauser, a young adult with a genetic connective tissue disorder called Classical Ehlers-Danlos Syndrome. 

The hope is that Minnesota will be the ideal place for these minds and hearts to come together. 

“Minnesota being sort of the mecca of medical care and medical devices, it only makes sense for this rare disease council to happen here in the state of Minnesota,” said Minnesota State Senator Jeremy Miller, R-Winona. 

Members of the council would include doctors, nurses, hospital administrators and families. 

Lawmakers are calling the bill bipartisan with both republican and DFL authors in the Minnesota House and Senate.