Rare Disease Advisory Council – Take 2

Rep. Jason Morgan (D- MI-23) introduced HB 4167 late February, the latest attempt to establish a Rare Disease Advisory Council (RDAC) in Michigan. 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 this year.

MichBio, along with representatives from NORD (National Organization for Rare Disorders) and The Bonnell Foundation, testified in support of the bill before the House Health Policy Committee, where at a subsequent meeting it passed unanimously. The bill then was approved by the full House legislature 88-20. It is poised to be heard before the Senate Health Policy Committee.

Establishment of a RDAC in Michigan is not certain, despite early and overwhelming support. Recent crosswinds have highlighted the need for additional advocacy to justify the value of such a body. 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.