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Rare disease council creation gets committee OK; MNsure repeal discussed

Two bills put forward by Rep. Matt Dean (R-Dellwood) tackle both a potential new bipartisan collaboration and a longstanding partisan divide.

The Health and Human Services Reform Committee on Tuesday debated a new effort to repeal MNsure and approved a bill that would create an advisory group on rare diseases.

HF2574, as amended, would ask the University of Minnesota to create the Chloe Barnes Advisory Council on Rare Diseases, named for a 2-year-old from Hopkins who died of metachromatic leukodystrophy in 2010.

Approved by the committee, it was sent to the House Floor.

In addition to four legislators (two DFL and two Republicans), the council would consist of doctors and nurses who specialize in rare diseases, as well as patients themselves. Among its goals would be to:

  • develop protocols for providers to use to diagnose Minnesotans with a rare disease;
  • advise interested parties on rare disease research, diagnosis, treatment and education;
  • in conjunction with the state's medical schools and hospitals that provide care to persons diagnosed with a rare disease, develop policy recommendations relating to the quality and access to treatment and services for persons with rare diseases; and
  • develop recommendations for effective strategies to raise public awareness of rare diseases in the state.

A report would be due to the Legislature by Jan. 1 each year.

Two mothers described how they had uprooted their families in order to move to Minnesota so they could receive the best treatment for their ailing small children with uncommon diseases.

Pat Lang moved from Ohio to support her daughter, Madigan, whom she adopted from China. Despite an earlier prognosis that Madigan would die as a toddler, Lang said, she was now living a happy life in her 20s.

Gabriella McCann, originally from Italy, was not so lucky. Her daughter, Elisa, passed away less than two months ago at age 4 from a rare genetic disease McCann described as incurable, painful and progressive. The only place it could be treated was in Minnesota.

“Rare means so many things,” McCann said. “It means hard to get a diagnosis, hard to find a physician that knows the disease, hard to get specific drugs … covered by insurance, or procedures covered, hard to get research funds. It’s a niche – biotechnology and pharmaceutical companies are not captivated by such a small market.”

Briva Health CEO Hodan Guled testifies against a bill sponsored by Rep. Matt Dean, right, that would require a county-based eligibility determination for Medical Assistance and MinnesotaCare. Photo by Andrew VonBank

The second Dean-sponsored bill, HF2725, would repeal the state health insurance exchange, MNsure, and replace it with a county-level system for determining eligibility for existing state programs that provide insurance, such as Medical Assistance and MinnesotaCare. The bill was re-referred to the House Government Operations and Elections Policy Committee.

WATCH: Committee discussion on potential MNsure repeal

Dean’s bill ignited a spirited debate over the merits of MNsure.

He said his bill would prevent the Dayton administration pulling the rug out from counties and enrollees amid a “MNsure 3.0” rollout.

Rep. Duane Quam, (R-Byron) pointed out the amount of Minnesotans without health insurance increased last year to 6.3 percent. Rep. Glenn Gruenhagen (R-Glencoe) said government health insurance underpays health care providers.

“As long as we continue down this road of MNsure and expanding government health care, you’re going to see less access, not more,” he said.

Briva Health CEO Hodan Guled said her company receives a grant through MNsure, and that the exchange was more effective than ever before, continually improving enrollment numbers. Her firm had a firsthand view of the exchange’s progress: more than 115,000 Minnesotans signed up statewide this past open enrollment period, she said.

“It’s really imperative for us continue to build on the success of MNsure, and not risk families who need the system, and the services, and the coverage that they’ve come to rely on,” she said.

She called Dean’s bill a waste of taxpayer dollars, and a solution in search of a problem. Neither bill has a Senate companion. 


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