Minnesota Lawmakers Consider Rare Disease Council

March 02, 2018 09:44 PM

There are more than seven thousand "rare diseases" that have been identified and more than 30 million Americans live with them every day. Sadly, some of them result in death before a child reaches the age of five.

"Ninety-five percent of rare diseases don't have an FDA approved treatment and 30 percent of children living with rare diseases won't see their fifth birthday," said Abbey Hauser, a 22-year old University of Minnesota graduate who lives with Ehlers-Danlos Syndrome, a connective tissue disorder that impacts her joints.


Abbey Hauser, who is the daughter of KSTP Chief Political Correspondent Tom Hauser, is among those who want the state to create a "Rare Disease Advisory Council" at the University of Minnesota. A bipartisan bill has been introduced in the legislature.

Rep. Erin Murphy, DFL-St. Paul, is one of the co-authors who says the health care system isn't designed very well to deal with rare diseases.

"It is organized around the traditional conditions that we take care of all the time, and for those of us who have experienced rare diseases, you more than me, you're outside of that tradition and you get a little lost in the shuffle," Murphy told patients and families at a reception for national Rare Disease Day this week at the Capitol.

A rare disease is defined as any disorder that affects fewer than 200,000 Americans at any given time.

A bill authored by Rep. Matt Dean, R-Dellwood, along with Murphy and others would create the "Chloe Barnes Advisory Council on Rare Disorders." It would be named after a 2-year-old from Hopkins who died of metachromatic leukodystrophy in 2010. It's an inherited disorder that impacts the nervous system and brain.

The advisory council would be made up of four legislators (two Democrats and two Republicans), along with doctors and nurses who specialize in rare diseases.

The council would help develop protocols for health providers to use to diagnose Minnesotans with rare diseases, advise the legislature on public policy and strategies to raise public awareness.

Rep. Nick Zerwas, R-Elk River, is a survivor of a rare congenital heart defect that doctors said  would kill him before he reached age six or seven.

"I had my first open-heart surgery at two months old," Zerwas said. "I had my second open-heart surgery at two years old."

He's now 37-years old.

"I'm a legislator and that's cool. But I'm a father and that's amazing."

Zerwas likes to tell his story to give people hope. So does Hauser. She's started a blog called owningmystory.com to tell her story. Now she wants to expand it to tell the stories of others coping with rare diseases.

"Each statistic brings together the lives of many people fighting rare disease in a world that doesn't offer a lot of options for us," Hauser said. "Data is helpful for us when looking at the big picture, but it lacks a soul. It lacks a story. It's my goal to give more rare disease patients a voice and the incredible experience of sharing their story while bringing awareness to their certain conditions."

The bill was introduced this week.



Tom Hauser

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