Full Council Meeting

Motion: Rae Blaylark made a motion or approve the previous meeting minutes. Dawn Stenstrom seconded. A request for a Motion to Approve January 18, 2024 meeting minutes.

Votes

• Maureen Alderman Voted: Approve
• Soraya Beiraghi, DDS, MSD, MS Voted: Absent
• Dr. Arthur Beisang, MD Voted: Approve
• Rae Blaylark Voted: Approve
• 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: Approve
• Sen. Kelly Morrison Voted: Absent
• Rep. Tom Murphy Voted: Approve
• Karl Nelsen, PA-C Voted: Approve
• Dr. Paul Orchard, MD Voted: Approve
• Rep. Liz Reyer Voted: Approve
• Kris Ann Schultz, MD Voted: Approve
• Dawn Stenstrom Voted: Approve
• David Tilstra, MD Voted: Approve

Policy, Priorities, council updates and inputs:

These updates will be given by the respective chairs in lieu of time for the governance updates from the Governance Task Force and Cultivate Strategies.

Policy Update:

Dawn Stenstrom gave an update on an actual patient in Texas.  This patient will be covered by Medicaid and is seeking gene therapy in the State of Minnesota.  The policy committee agreed to support this patient in sending a letter to the Texas legislators’ RDAC in support of this patient as a way to address the larger issue of barriers to accessing care across state lines.  Our support was well received.

The legislative docket-Council base operational budget is our top priority.  The structural changes to the council are also a priority.  These changes include an increase to the base budget, allowing the council to do task forces such as those related to gene therapy as well as ad hoc membership with a vote by the council rather than Governor appointment.  This is moving forward.

We are supporting prior authorization reform bill that is specific to chronic diseases- eliminating yearly requirements for a prior authorization.  There are other parts to the prior authorization bill and MNRDAC is supporting appropriate portions of the bill that are pertinent to MNRDAC.

There is a bill for expanded coverage of rapid genome sequencing.  The bill considers health care carriers being required to provide coverage for rapid whole genome sequencing.  This covers a pediatric population of 21 years of age or younger and there are other coverage criteria. We are in support of this bill.

There is another bill that requires separate reimbursement for gene therapy specifically to treat rare diseases.  We are in support of this bill.

There is a final priority bill related to medical debt reform. It is a large bill that has many moving parts.  MNRDAC has agreed to provide technical assistance to this bill in way of testimony and support the provision to ban copay accumulators.  Representative Reyer expanded the conversation of this bill calling out that it contains medical debt reform as well as making health care publicize their collection policies. The bill is working to eliminate the credit reporting of medical debt and reduce the amount of interest on that debt.  Parts of this bill were excluded in the house as there remains many moving parts that impact every aspect of health care. Council will support the Senate version in conference committee should the ban on copay accumulators be left in.

Executive Director Update

Director Barnes spoke to the success of advocacy day at the Capitol on March 5, 2024.  It consisted of guest speakers and activities.  Participants were asked to reach out to their representatives and were escorted to those meetings by volunteers.  A letter writing campaign was done by students at the University of Minnesota that invited legislators to attend.  Attendees took tours of the Capitol and the closing consisted of a Q&A with Representative Murphy and Representative Reyer.  All the events were well received, and the day was a great success.  We were successful in providing a civic engagement event for the members of the rare community.  Of note, there were 14 different rare communities represented.

Director Barnes spoke to the council vacancies.  The Governor’s office has been contacted.  They have applicants and are working on making these appointments quickly.  The Council was reminded that we all serve at the pleasure of the Governor and appointments are made solely by the Governor’s Office.  The discussion continued and it was noted that those currently sitting on the Council were appointed in 2019 as the original appointees.  These positions have termed and there is a process for to re-apply and these members are encouraged to do so.  An application process will be sent to the members that are terming following this meeting.  Current members are being asked to re-apply by end of March.

Governance Updates:  Jackie Foster, Brigid Riley

The Governance task Force as well as Cultivate Strategies

Jackie Foster provided a robust overview was given of the Carver Model, its advantages, and limitations for state government.  The GTS went over the work that has been with the Governance Task Force.  The quadrants were spelled out with a detailed presentation that are available of requester.  The main role of the Carver Model is to limit the power of the Executive Director and make cross check processes.

A presentation of governance examples and language was presented to the Council as it provides us with the rules of what the Council may and may not do.  Brigid provided the Council with some of the areas that are covered in governance, such as treatment of external organizations, productive working environment, healthy working environment, ongoing agency financial health, financial planning, emergency succession, compensation and benefits and communication and support to the council.

The Council members were broken out into small workgroups within Zoom for further discussion of the areas and ideas that were important for members to have represented.  Take aways from these small group discussions were presented at reunion of the group.  It was noted throughout the discussion that aspects of the language has been borrowed from MCD and the Deaf, Blind and Hard of Hearing Council to help facilitate discussion and allow MNRDAC the opportunity to take pieces from already established state agency Councils.  Our area of expertise remains in the rare space and our governance should reflect the mission of MNRDAC.

The Council was reminded that this is a large task as the Q&A portion of this presentation was presented.  Cultivate will be leading the May MNRDAC Full Council meeting in a retreat style governance workshop.  Resources were given and the presentation of governance slide are available upon request.

Public Comment:

None