Full Council Meeting

Motion to approve the November 2024 meeting minutes

Motion: Kerry Hansen made a motion to approve the November 2024 meeting minutes, motion seconded by
Dick Schirber.

Votes

• David Tilstra, MD Voted: Approve
• Jackie Foster, MPH, RN, OCN Voted: Approve
• Dawn Stenstrom Voted: Approve
• Dr. Paul Peterson Voted: Approve
• Alexandra Mohror Voted: Approve
• Dan Endreson Voted: Approve
• Barbara Joers Voted: Absent
• Richard Schirber, Jr. Voted: Approve
• Kerry Hansen, RN Voted: Approve
• Sofia Shrestha Voted: Approve
• Dr. Paul Orchard, MD Voted: Abstain
• Dr. Arthur Beisang, MD Voted: Approve
• Dr. Douglas Smith Voted: Approve
• Maureen Alderman Voted: Abstain
• Rae Blaylark Voted: Abstain
• Dr. Elizabeth Lando-King Voted: Approve
• Dr. Laura Lambert Voted: Approve
• Angela Cowen, ICSW Voted: Approve
• Rep. Tom Murphy Voted: Absent
• Rep. Liz Reyer Voted: Approve
• Sen. Julia Coleman Voted: Absent
• Sen. Liz Boldon Voted: Approve

Minutes approved

Minutes approved

Guest Presentation

Chad Hope, pharmacist representing the Department of Human Services presented to the full council on the state’s Drug Formulary Committee. Mr. Hope provided information in response to the below questions provided prior to the meeting:

• What is the main function and purpose of the DFC? How do you work on behalf of the state of Minnesota?
• What are some broad concepts and principles that guide and inform the way you work (open meeting law, protection from bias)?
• What are some unique aspects of rare diseases that are challenging (clinical trial design, lack of published data, FDA pathways)?
• How can the Council support you as you make decisions impacting the rare disease community? How can we be a resource?
• How does public comment inform your work?

Following the presentation, Chad took questions from Council members

Executive Director Update: 2024 Year End Review- Annual Report Review

Erica Barnes presented the Council with a review of the 2024 Annual Report that was submitted to the Legislature. No discussion following the presentation

Public Comment

Sumukha Terakanambi, a patient living with Duchenne muscular dystrophy, provided public comment related to his experience providing public comment to the drug formulary review committee. Following his public comment members of the council provided their own input on the process. Dawn Stenstrom, policy chair, recommended that the policy committee discuss the information presented by Chad Hope at the upcoming policy committee meeting, requested that this be added to the policy committee agenda.

Executive Director Performance Review discussion

Following public comment, Dr. Tilstra announced that the public portion of the full council meeting would be ending, and the Council would conduct a closed meeting in order to discuss executive director performance for her upcoming annual performance review.