(Source: MIRS.news, Published 11/26/2024) Rep. Jason Morgan (D-Ann Arbor) is pushing for the Rare Disease Advisory Council to be a priority in the Senate this lame-duck session.   

Under HB 4167, the council would advise the Department of Health and Human Services (DHHS) and other state agencies on research, diagnosis and treatment efforts related to rare diseases.”  

An affliction is classified as a "rare disease" if it affects fewer than 200,000 individuals in the United States. There are approximately 7,000 diseases that fall under this category that have been identified in Michigan.  

Morgan’s work on this bill derives from his experience living with muscular dystrophy, he said.   

“I have a lot of friends and loved ones who live with rare diseases and have seen firsthand the need for the state of Michigan to do a better job supporting those folks, and I believe the Rare Disease Advisory Council is the strongest path for us to do that,” he said.   

A priority for the council is to create a list of rare diseases and identify best practices to improve Michigan’s education, care, support and treatment for those afflicted with them. All decisions made by the council would have to be based on medical and scientific reasoning.   

Members would also develop policy recommendations aimed at preventing discrimination against those who have rare diseases.   

To accomplish these priorities, the council would have the ability to apply and accept grants from the government, hold public hearings and consult with rare disease experts.   

According to the latest version of the bill, the deadline for the website to be created would be Dec. 21, 2024. Inching up on a year later, supporters are calling for the bill to be considered by the Senate before the process has to start all over again.   

“I absolutely believe we need to pass this bill here,” Morgan said.   

He said the urgency behind getting the bill passed during this lame-duck session does not come from a lack of faith in getting Republican support when the Chamber turns over in January.  

“I would really hate to see us get to the end of the year without establishing this Rare Disease Advisory Council because the process begins all over again in the new year if we don’t get it done now,” he said.   

Morgan introduced HB 4167 in March 2023. It passed in the House chamber on an 88-20 vote later the same month. In the Senate, it moved from the Committee on Health Policy and has remained stagnant in the legislature ever since.  

The DHHS has already begun establishing this program, according to Morgan. He said if this legislation is passed, funding for the council would be continually supported moving forward.   

“We just need to pass this legislation to essentially solidify its existence beyond just Governor Whitmer’s term,” he said.   

The council’s 18 members have already been appointed. The board consists of doctors, researchers, people who either have rare diseases or are caretakers of someone with a rare disease, and three DHHS staff members.   

The committee has a meeting set for January 22 and has quarterly meetings planned for 2025. The purpose of the council is to provide the rare-disease community “a stronger voice in state government,” according to the DHHS website.  

The Bonnell Foundation, a cystic fibrosis advocacy group, released a statement calling for the Senate to pass the bill during the lame duck session.  

“It’s time for the Michigan Senate to give the rare disease community something to be thankful for and pass HB 4167,” the statement reads.   

CEO of the Bonnell Foundation, Laura Bonnell, said it is “critical” that the legislation passes the full Senate before the chamber turns over.  

“I am the mother of two daughters with cystic fibrosis (CF), and my foundation represents the CF community in our state, and their voices matter, all the rare voices matter. Time is running out,” Bonnell said.   

Morgan described HB 4167 as "wildly bipartisan,” both in terms of co-sponsors and the votes that passed it in the House.   

“There’s zero opposition from any stakeholder groups or anyone that I’m aware of. It’s a fairly straightforward bill that both Democrats and Republicans support," he said.