Creation of Rare Disease Advisory Council Proposed

HB 4654, legislation to establish a Rare Disease Advisory Council (RDAC) within the Department of Health & Human Services has moved to the Senate for their consideration.

Substitute language was introduced at the House Health Policy Committee that accommodated changes sought by MichBio. These included expanding the RDAC membership to include greater representation from the patient and caregiver community, as well as adding a genetic counselor, among other minor changes. The substitute was approved by the House Health Policy Committee and then by the full House.

MichBio met with Sen. VanderWall, Chair of Senate Health Policy, last week seeking a couple of minor changes:

• deletion of a clause that requires RDAC to pick one (1) rare disease per year out of the more than 7000 identified to focus and report on. MichBio and patient groups feel that no disease should rise above any other in consideration by the group.
• slight change in the language to ensure that the RDAC includes representation from a Michigan-based industry association or company that works in the rare disease space or interfaces with patients with rare diseases.