Executive Sub Comittee Meeting

Approval of minutes

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

Ongoing Business

Legislative Updates

An email update was sent to the ESC this morning.  The current updates are that everything is moving forward, and we will know outcomes no later than Monday.  Erica will send another email after Monday with the results of the Session.  A reminder that it is not a budget year, however, we are hopeful for our appropriation as we made the ask last year.

Council Terms and Vacancies

The Governor’s office is working on current vacancies and all vacancies have applicants.  ED Barnes noted that we remain in a holding pattern.  There are applicants for all positions, and we have three (3) current vacancies.

A conversation was had regarding a discipline letter being sent to members who miss 3 consecutive meetings.  Staff will get a letter to Chair this week for approval.

Chair and Vice Chair Process Identification

In October, Amy’s Chairterm will expire, and Dave Tilstra will take over as Chair.  We will need to go about process for identifying a Vice Chair.

Process for Chair Succession

Dave Tilstra as Vice Chair has agreed to succeed to Chair.

Identify Process for vice-chair candidate selection

Full Council vote.  Solicit self or other nominations for Vice Chair.  Roll Call vote.  Candidates will have a statement of interest in order and bio to obtain information about the member.  We should call for nominations at July Full Council meeting and we will collect bio and statement of interest via the ESC. ESC will collect nominations and call a meeting vote at the September Full Council meeting.  Council Members will be allowed to ask questions of the candidates.

Vote: Karl Nelsen motioned to bring identified process to the Full Council. ESC will ask for candidates for RDAC Full Council Vice Chair, with bios and interest statements for a Full Council vote, seconded by Maureen Alderman:

Votes

• David Tilstra, MD Voted: Yes
• Amy Gaviglio, MS CGC Voted: Yes
• Karl Nelsen, PA-C Voted: Yes
• Maureen Alderman Voted: Yes
• Rep. Tom Murphy Voted: Yes
• Rep. Liz Reyer Voted: Absent

Governance Updates

Being reviewed in Box.  Members have been reviewing the content and we will be updated during the Full Council meeting. Discussion regarding Committee Liaison versus Appointee

We were working to get Council members appointed to other Boards.  PDAB is a good example.  We are beginning to align with other Boards and Councils that have a part in our mission.  We have a statutory appointment with the Drug Formulary Board.  We are navigating how we align with other state agencies.  We are also navigating how to respect the process of other Boards and Councils.  The RDAC appointee would not necessarily become a liaison.  We are not able to tell another board how to vote or change their process.  Our appointees are there to represent our mission and community in a respectful, informative way.  Our appointees are expected to serve RDAC in their representation.

The AG has offered to present at any of our Council or ESC meetings to give information surrounding how RDAC can interact with other Boards and Councils.  We should be viewed as more of a connector of information to the rare community.  We want our community to be aware of what is being reviewed.  Our statutory task is to give a voice to the rare community.  Conversation was had about making our position known.  We should be seen as the expert in some of these discussions.  Noted that these relationships are just beginning, and we want to set our expectations as clear and concise.  We are here to advocate for the community.  We need to be transparent as some Councils require vetting of comments.  It was noted that each group is different in how deliberations are held and RDAC may need to change our approach in each instance.  Director Barnes will sketch out a process and present it to the ESC next month.

ACTION: Maureen Alderman requested a motion that the RDAC ED sketch out a process for engaging with PDAB and present it for a vote at the next meeting. Karl Nelsen so motioned, seconded by Tom Murphy.

Votes

• David Tilstra, MD Voted: Yes
• Amy Gaviglio, MS CGC Voted: Yes
• Karl Nelsen, PA-C Voted: Yes
• Maureen Alderman Voted: Yes
• Rep. Tom Murphy Voted: Yes
• Rep. Liz Reyer Voted: Absent

New Business

None

Public Comment

Hearing none