Michigan House passes bill to create Rare Disease Advisory Council


James Sklar


Last week, the Michigan House passed (88-20) House Bill 4167, which would create a Rare Disease Advisory Council (RDAC) within Michigan’s Department of Health and Human Services (MDHHS).

The council would be required to conduct research, identify priorities, and make policy recommendations regarding access, treatments, and services for rare diseases in Michigan. The RDAC would serve as an advisory council to the legislature, governor, MDHHS, and other state agencies regarding research, diagnosis, and treatment of rare diseases in Michigan.

Michigan’s RDAC would cooperate and be responsible for identifying best practices used in other states and at the federal level to help with research, diagnosis, and treatment. Michigan’s RDAC would also be responsible for coordinating with other state RDACs in making sure its duties are appropriately performed.

The RDAC would generate a list of rare diseases and share this information with MDHHS. From this list, RDAC would be required to investigate and make recommendations to the legislature regarding one disease on an annual basis.  

The RDAC would be comprised of 20 representatives with various expertise including experts in rare diseases, an epidemiologist, an individual engaged in rare disease research, a representative from a healthcare insurer, various licensed physicians, and multiple individuals with different rare diseases.

For Rep. Jason Morgan (D – Ann Arbor), sponsor of the RDAC act, this piece of legislation is not only good policy but personal. Morgan, who was diagnosed with Becker’s Muscular Dystrophy at 13, has been open about his struggles with the disease. He recently testified in support of his bill in front of the House Health Policy Committee.

“Thousands of Michiganders suffer from rare diseases, including myself,” Morgan said in a recent committee hearing … Once I received my diagnosis, I did not know what to do. I faced tough questions that few if any of my other peers were facing. How could I accept a life acceptance that was shorter than my peers? How could I access the care that I needed? How was I going to live with this condition?

What changed my perspective was when I received my diagnosis, around the age of 13. I attended a camp for kids with muscular dystrophy, and when meeting other kids with muscular dystrophyseeing them thriving and finding a way to find hopefilled me with hope.

Instead of focusing on how my life may be different from others, I started to focus on how best to use the time that I had… Today, as a legislator, I am asking how we can better support those with rare diseases. It is possible to live a rich and fulfilling life with a rare disease. My life is proof of that.”

Morgan understands that the RDAC’s goal is not necessarily to find a cure for rare diseases but rather to help educate and prepare doctors, healthcare providers, and health centers about various rare diseases and the common obstacles patients face. Morgan also believes an RDAC will help the state better understand rare disease patients’ needs and help them find the needed support earlier.

Advocates of RDACs say that not only does this benefit the health of Illinoisians, but it also gives individuals with rare diseases a voice in the state government.  

If HB 4167 is signed into law, Michigan would become the 25th state with an RDAC. Similar bills have been introduced in recent years (HB 5465 in 2020 and HB 4654 in 2021) but failed to make it out of the Senate Health Policy Committee.