Executive Sub Comittee Meeting

Approval of minutes

ACTION: Chair Gaviglio made a request for a motion to approve meeting minutes from November 14, 2023. Motion by Representative Reyer and seconded by Representative Murphy. Approved. Roll call vote 4/4.

Executive Director Update

ED Barnes attended the National Conference for State Legislators on Rare Disease in Austin, Texas last week. She reported that state legislators had been getting requests from around the country for rare disease treatments and other rare disease considerations. It was noted that Minnesota is the front runner in our work with the Rare Disease community. We may be able to offer some best practices to states that are forming similar Councils. There were 13 states represented and roughly 30 legislators. A discussion was held regarding the new gene therapy for sickle cell disease at the conference. The members of the Executive Subcommittee discussed the possibility of a learning session for the RDAC Council. They requested that the learning include the business, patient, and provider perspectives for the therapy and what that means for the state. The council would like to learn more about all aspects of the therapy options as there will be many moving parts to deliver the therapy and the state’s impacts before the legislative sessions. ED Barnes recommended that we utilize resources available to the Council which include, Dr. Alex Boucher, Dr. Paul Orchard and to bring in Vertex for the Council learning. A doodle poll will be conducted for a 90-minute learning session.

ACTION: A motion was made by Chair Gaviglio and seconded by Representative Murphy to offer a learning on gene therapy treatments which will include academics, business, and providers prior to the legislative session which begins February 12, 2024. Approved. ROLL CALL 4/4.

Ongoing Implementation of Governance Work/Progress Made

The Project Plan was presented to the subcommittee. A Governance Taskforce (GTS) has been established and Jackie Foster will chair the Taskforce in developing RDAC governance documents. The Carver Model (modified) is the suggested model for moving forward. The GTS will bring completed documents to the Executive Subcommittee for approval. The ESC asked for time to review documents describing the Carver Model and modified versions that the GTS are proposing to use.

ACTION: Vote Postponed.

Discussion of Deliberate and Proactive Decision Making (Votes vs. Discussion, Decisions with a Longer Runway as a Group)

Chair Gaviglio requested clarification on the decision-making process of the Council. She indicated that clarity is needed when decisions are made in noting action items. Representative Reyer indicated that when there is doubt a vote will take place.

Member Reyer Reporting on Other Councils and Boards; eg Ad Hoc Membership

Representative Reyer reported that in reviewing statutorily defined subcommittees she did not note ad hoc membership guidelines. She would like to carry this agenda item over to the next ESC meeting and talk with colleagues about other membership practices.

Discussion on Members Self-Selecting Committees

In discussion, it was confirmed that members of the Council that have interest in subcommittee work of the Council will be voted into said subcommittee by the Executive Subcommittee. Member Kerry Hansen has requested membership to the RDAC Policy Subcommittee.

ACTION: A motion was made by Karl Nelsen and seconded by Representative Murphy to approve membership of Member Kerry Hansen to the RDAC Policy Subcommittee. Approved. ROLL CALL 4/4.

ED Barnes Performance Review Discussion

Reviewed and discussed. Performance Review was finalized.

ACTION: Motion: by Karl Nelsen to approve and submit the performance review of ED Barnes to Human Resources after discussed changes are made. Seconded by Representative Reyer. ROLL CALL 4/4 in favor.