Full Council Meeting

Motion to approve the September 19, 2024, meeting minutes

Motion: Dawn Stenstrom made a motion to approve the September 19, 2024, meeting minutes, motion
seconded by Jackie Foster.

Motion Passed.

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
• Richard Schirber, Jr. Voted: Approve
• Kerry Hansen, RN Voted: Approve
• Sofia Shrestha Voted: Approve
• Dr. Arthur Beisang, MD Voted: Absent
• Dr. Douglas Smith Voted: Absent
• Maureen Alderman Voted: Abstain
• Rae Blaylark Voted: Absent
• Dr. Elizabeth Lando-King Voted: Approve
• Dr. Laura Lambert Voted: Absent
• Angela Cowen, ICSW Voted: Abstain
• Rep. Tom Murphy Voted: Approve
• Rep. Liz Reyer Voted: Abstain
• Sen. Julia Coleman Voted: Approve
• Sen. Liz Boldon Voted: Absent

Executive Director Update

Director Barnes updated the council members on the Rare ECHO Series that is kicking off November 18, 2024 at 12:00PM CST. RDAC has contracted with Minnesota Management, Analysis and Development to partner with Stratis Health. The ECHO series will offer and expert panel in a teach and learn style format. These ECHOs will run monthly and will contain case studies. CMEs for medical professionals will also be available.

The Gene Therapy Taskforce continues to form. RDAC has contracted again with Minnesota Management, Analysis and Development to form the members and focus the work of this taskforce.

Guest Presentation

Delivering Gene Therapy, Opportunities and Challenges – Nate Mussell, Fairview Health Services

Nate Mussell presented the Council with the opportunities and challenges of delivering gene therapy within the Fairview system as well as the broader challenges for all health systems. Following his presentation, Nate answered council members’ follow up questions.

Finalization of Operation Procedures

Jackie Foster presented a brief overview of the Carver Governance Model and the ongoing work of the
governance taskforce over the last nine months. This information was presented at the September Full Council
meeting. Council members were given time to review and make recommendations to these documents within
Box prior to the meeting.

Motion to accept the governance documents as the current operating procedures for the Minnesota Rare Disease Advisory Council

A motion was made to accept the governance documents as the current operating procedures for the
Minnesota Rare Disease Advisory Council.

Motion Passed. The GTF will be eliminated and the RDAC Operating Procedures will be managed by the
Executive Subcommittee.

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
• Richard Schirber, Jr. Voted: Approve
• Kerry Hansen, RN Voted: Approve
• Sofia Shrestha Voted: Approve
• Dr. Arthur Beisang, MD Voted: Approve
• Dr. Douglas Smith Voted: Approve
• Maureen Alderman Voted: Approve
• Rae Blaylark Voted: Approve
• Dr. Elizabeth Lando-King Voted: Approve
• Dr. Laura Lambert Voted: Approve
• Angela Cowen, ICSW Voted: Approve
• Rep. Tom Murphy Voted: Approve
• Rep. Liz Reyer Voted: Approve
• Sen. Julia Coleman Voted: Approve
• Sen. Liz Boldon Voted: Approve

Committee Appointment 1

Two separate votes called for appointment to the RDAC Policy Sub Committee.

Votes passed. Dan Endreson and Barbara Joers with both join the RDAC Policy Sub Committee effective today.

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
• Richard Schirber, Jr. Voted: Approve
• Kerry Hansen, RN Voted: Approve
• Sofia Shrestha Voted: Approve
• Dr. Arthur Beisang, MD Voted: Approve
• Dr. Douglas Smith Voted: Approve
• Maureen Alderman Voted: Approve
• Rae Blaylark Voted: Approve
• Dr. Elizabeth Lando-King Voted: Approve
• Dr. Laura Lambert Voted: Approve
• Angela Cowen, ICSW Voted: Approve
• Rep. Tom Murphy Voted: Approve
• Rep. Liz Reyer Voted: Approve
• Sen. Julia Coleman Voted: Approve
• Sen. Liz Boldon Voted: Approve

Committee Appointment 2

Two separate votes called for appointment to the RDAC Policy Sub Committee.

Votes passed. Dan Endreson and Barbara Joers with both join the RDAC Policy Sub Committee effective today.

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: Abstain
• Richard Schirber, Jr. Voted: Approve
• Kerry Hansen, RN Voted: Approve
• Sofia Shrestha Voted: Approve
• Dr. Arthur Beisang, MD Voted: Approve
• Dr. Douglas Smith Voted: Approve
• Maureen Alderman Voted: Approve
• Rae Blaylark Voted: Approve
• Dr. Elizabeth Lando-King Voted: Approve
• Dr. Laura Lambert Voted: Approve
• Angela Cowen, ICSW Voted: Approve
• Rep. Tom Murphy Voted: Approve
• Rep. Liz Reyer Voted: Approve
• Sen. Julia Coleman Voted: Approve
• Sen. Liz Boldon Voted: Approve

Legislative and policy agenda for 2025

Director Barnes gave the Council an overview of achievements from 2024. She gave a presentation of the upcoming legislative session and RDAC priorities. She discussed the hiring of a Policy Manager as well as hiring a consultant. The hiring process is complete and the new Policy Manager will start November 26, 2024. RDAC is in the process of contracting with a consultant to assist in the training of the policy manager as well as consult for RDAC.

Vote on the priorities with an RDAC lead per the process established: Base Budget Establishment

The Full Council voted on the priorities with an RDAC lead per the process established (legislation categorized as “engage” and “support” is under the distraction of the Executive Director).

Approved

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
• Richard Schirber, Jr. Voted: Approve
• Kerry Hansen, RN Voted: Approve
• Sofia Shrestha Voted: Approve
• Dr. Arthur Beisang, MD Voted: Approve
• Dr. Douglas Smith Voted: Approve
• Maureen Alderman Voted: Approve
• Dr. Elizabeth Lando-King Voted: Approve
• Dr. Laura Lambert Voted: Approve
• Angela Cowen, ICSW Voted: Approve
• Rep. Tom Murphy Voted: Approve
• Rep. Liz Reyer Voted: Approve
• Sen. Julia Coleman Voted: Approve
• Sen. Liz Boldon Voted: Approve

Vote on the priorities with an RDAC lead per the process established: Drug Formulary Committee Modifications

The Full Council voted on the priorities with an RDAC lead per the process established (legislation categorized as “engage” and “support” is under the distraction of the Executive Director).

Approved

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
• Richard Schirber, Jr. Voted: Approve
• Kerry Hansen, RN Voted: Approve
• Sofia Shrestha Voted: Approve
• Dr. Arthur Beisang, MD Voted: Approve
• Dr. Douglas Smith Voted: Approve
• Maureen Alderman Voted: Approve
• Dr. Elizabeth Lando-King Voted: Approve
• Dr. Laura Lambert Voted: Approve
• Angela Cowen, ICSW Voted: Approve
• Rep. Tom Murphy Voted: Approve
• Rep. Liz Reyer Voted: Approve
• Sen. Julia Coleman Voted: Approve
• Sen. Liz Boldon Voted: Approve

Vote on the priorities with an RDAC lead per the process established: Patient Assistance Programs

The Full Council voted on the priorities with an RDAC lead per the process established (legislation categorized as “engage” and “support” is under the distraction of the Executive Director).

Approved

Votes

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

Vote on the priorities with an RDAC lead per the process established: Medicaid Eligibility NBS

The Full Council voted on the priorities with an RDAC lead per the process established (legislation categorized as “engage” and “support” is under the distraction of the Executive Director).

Approved

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
• Richard Schirber, Jr. Voted: Approve
• Kerry Hansen, RN Voted: Approve
• Sofia Shrestha Voted: Approve
• Dr. Arthur Beisang, MD Voted: Approve
• Dr. Douglas Smith Voted: Approve
• Maureen Alderman Voted: Approve
• Dr. Elizabeth Lando-King Voted: Approve
• Dr. Laura Lambert Voted: Approve
• Angela Cowen, ICSW Voted: Approve
• Rep. Tom Murphy Voted: Approve
• Rep. Liz Reyer Voted: Approve
• Sen. Julia Coleman Voted: Approve
• Sen. Liz Boldon Voted: Approve

Public Comment

A member of the public addressed the Council. She shared that she has a rare disease and how important it is for people to be talking about these issues.