Rare Disease Advisory Council would be created under new Michigan bill

It was only dumb luck that Jason Morgan found out about his illness. 

He experienced frequent muscle pain but without any remedy. Years of tests, blood draws, and unanswered questions only yielded an answer after Morgan's doctor connected the dots between his mother and his aunt. 

He had Burton Muscular Dystrophy - a rare genetic disease that affects his heart and muscles.

"If it weren't for sheer luck, who knows how long it would have taken," he said.

Morgan is now a lawmaker in the Michigan House after the Ann Arbor-native won election in the 23rd district in the 2022 Midterms. One of his first efforts in the legislature is to stop others from experiencing the ambiguity of having a sickness without a diagnosis.

Rep. Jason Morgan, D-Ann Arbor

His bill, which he planned to introduce on the House floor on March 1, would create a Rare Disease Advisory Council. It would be made up of medical professionals, representatives from the insurance industry, health care specialists, officials from the pharmacy industry, as well as patients and parents of kids who have been diagnosed with a rare illness.

"There are very complicated needs with a rare disease that aren't as simple as repairing a broken bone," Morgan said in a Wednesday interview with FOX 2. "My disease impacts the muscles all over my body, so the care I need is pretty varied."

A rare disease council would have several functions, starting with creating an overall list of the illnesses afflicting Michigan residents. Currently, an estimated 7,000 rare illnesses - which are defined as a sickness that affects fewer than 200,000 people in country - are present in Michigan. 

The data collected would be shared with providers and medical professionals statewide.

From there, the council would dive into the details of some of the illnesses to better understand how they affect people, signs to look out for to diagnose those illnesses, as well as the necessary treatment options for supporting those who have an illness.

The council would also create more dialogue between the relevant groups that may not speak to one another enough but are involved in many of the steps that one goes through after being diagnosed. 

"We're truly trying to bring all stakeholders together to work through this so everyone understands every perspective of how someone is affected," he said. "Having a conversation can benefit a lot of people."

Morgan said the bill has bipartisan support after he secured more cosponsors this week. He also anticipates the bill will have support from the Health Policy Committee Chair, where it will get its first hearing.

If passed, the council would operate under the MIchigan Department of Health and Human Services.