Rare Disease Advisory Council

Legislation (HB 4167) to establish a Rare Disease Advisory Council (RDAC) in Michigan were progressing nicely through the summer following overwhelming bipartisan passage by the full House.

A RDAC would empower rare disease patients as partners in helping to shape policy development relevant to the unmet needs, common struggles, and concerns on equitable, quality, and affordable access to specialty treatment. The Council would have a diverse membership that includes academic researchers, health care providers and payers, industry members, and patients and caregivers. Twenty-four states have already implemented such a group, and others are poised to do so.

The Senate took up the RDAC bill this fall where it passed easily from the Health Policy Committee. However, as seemed to be the norm too often, it failed to pass the full Senate due to unrelated political machinations.

We’re hopeful that early 2024 will bring final passage and enactment. Without a RDAC in place, state laws and regulations that affect the rare community will continue to be developed minus the consultation of rare disease stakeholders, often leaving this vulnerable population at greater risk for poor health and economic outcomes. Michigan simply can’t afford to leave behind its rare disease patients and their families.