Full Council Meeting

Motion: Kerry Hansen made a motion or approve the previous meeting minutes.

Jackie Foster seconded. A request for a Motion to Approve the March 13, 2024 meeting minutes.

Votes

• Maureen Alderman Voted: Approve
• Soraya Beiraghi, DDS, MSD, MS Voted: Approve
• Dr. Arthur Beisang, MD Voted: Approve
• Rae Blaylark Voted: Absent
• Sen. Julia Coleman Voted: Absent
• Angela Cowen, ICSW Voted: Approve
• Jackie Foster, MPH, RN, OCN Voted: Approve
• Amy Gaviglio, MS CGC Voted: Approve
• Kerry Hansen, RN Voted: Approve
• Barbara Joers Voted: Absent
• Sen. Kelly Morrison Voted: Absent
• Rep. Tom Murphy Voted: Absent
• Karl Nelsen, PA-C Voted: Approve
• Dr. Paul Orchard, MD Voted: Absent
• Rep. Liz Reyer Voted: Absent
• Kris Ann Schultz, MD Voted: Approve
• Dawn Stenstrom Voted: Approve
• David Tilstra, MD Voted: Approve

Executive Director Update

Legislative Updates –Director Barnes stated that we requested a one-time appropriation. It was not included in the House. We’re continuing to work now that the legislature has gone into Conference Committee.

Forms for prior authorization. One of the keyways we funded that pre-authorization is the inclusion of a removal of the annual requirement. Having to reauthorize this pre-authorization every year is burdensome and can disrupt care. It’s still in.

The third is for gene therapy products related to rare diseases — being able to take the reimbursement for the product itself out of the reimbursement for all the associated costs that a hospital has is still standing.

Senator Bolten pulled the language out for this bill that she introduced as a standalone bill for next year. So that ban on copay accumulators will be going through the legislature next year. She prioritized a lot based on our feedback to having that introduced.

Chair Update

Chair Amy Gavigilo presented a reminder of attendance requirements for council. Attendance of meetings is critical to our ongoing work as a governor-appointed council. We can only operate if we have quorums. We are defined by Minnesota Statute 15.059 which oversees councils and committees which does have requirements around missing two or three consecutive meetings. A reminder that the standing statute
states that members that miss two consecutive meetings, a conversation is required. If there are three consecutive meetings missed, a report to the governor will be made. They will take that into consideration for future appointments or existing appointments on the Board.

RDAC appointment to the Drug Formula Committee. Part of our success last year was we were able to get RDAC appointments to that committee and board. As members, we want to understand how we can best engage with that work that’s being done by that committee and that board in a way that allows us to continue to really serve the rare disease community. The Executive Subcommittee will continue to flesh out our role.

Vice-chair appointment. Our Council will be taking nominations for the Vice Chair position as Amy’s term is expiring and Dave Tilstra will move to Chair. If that’s something you’re interested in doing, self-, nominating as vice chair. Feel free to nominate a fellow Council member as well.

July 18, 2024, is an all-day meeting and all-day in-person meeting. We will be working on our strategic planning and other work. It is important to have all council member perspectives and vision as we will talk about what we will be doing moving forward.

Governance items are in box. Please write comments, ask questions provide perspective. Please let Julie Olson know if you need assistance working in Box.

Public Comment

None

Ends Planning with Cultivate Strategies – Brigid Riley, Sherry Johnson

The RDAC consultant, Cultivate Strategies, guided RDAC members through several exercises in large and small groups. These exercises were presented as a prelude to the July in person retreat day, scheduled for July 18, 2024. This retreat is designed for strategic planning of ends results for the Council. Note that this section was internal document and strategic planning. No detail is shared as the exercise(s) were a collective brainstorming of goals and ideas for internal RDAC. No decisions were made, and no support was given.

Art Beisang made a motion to adjourn.

Motion seconded by Dave Tilstra.