Executive Sub Comittee Meeting

Approval of minutes

ACTION: Karl Nelsen motion to approve the minutes seconded by Dave Tilstra.  Motion passed 5/5.

Executive Director Update

Legislative Updates

Funding bill was heard on the Senate side and there is still work in the House, has not been heard.

The Prior Authorization is still being tracked and it will likely have a fiscal note. Will provide ongoing support as requested.

The rapid whole genome sequencing bill has a fiscal note. ED Barnes and legislator is working to address the fiscal note amount.

The medical debt bill was heard in multiple committees with the copay accumulator included in the Senate version.  We must be transparent with our scope for bills within the rare community. Will support as long as copay accumulator ban is included.

The unbundling bill was heard in Senate Health and Human Services.  Bill is an important procedural step for making gene therapy accessible.

All bills have met first deadline.

Council Terms and Vacancies

The Governor’s office is working on current vacancies and all vacancies have applicants.  ED Barnes was reached out to with some questions on some candidates.  Positions for this Council as being actively communicated out to various associations.

Attendance Policy

A conversation was had regarding members that miss consecutive meetings and procedural steps that need to be taken when meetings are missed in order to be compliant with statute.

Governance Updates

Being reviewed in Box.  Members have been actively instructed to review the three quadrants of the governance documents that have been drafted. Ends quadrant to be focused on in the May full council meeting.

Approval of Full Council Agenda

A draft of the full Council meeting to be held on May 15 was reviewed and approved pending the following modifications: 1.) addition of public comment 2.) addition of a written report sent out prior summarizing actions from members appointed to other committees. The issue of in-person attendance versus virtual attendance was discussed. ED Barnes to strongly encourage in person attendance as able.

ACTION: Motion to approve the May full Council agenda was requested by Chair Gaviglio. Karl Nelsen made a motion to approve the May agenda with Tom Murphy second. Motion passed 5/5.