Policy Committee Meeting

Agenda

Identified policy initiatives update

1. 1. Network Access bill
      1. Progress
      2. Discussion
   2. Council funding
      1. Progress
      2. Discussion
   3. rWGS DHS criteria engagement
      1. Progress
      2. Discussion

Relevant policies from other stakeholders

1. 1. Addition of RDAC membership to Drug Formulary Review Committee
   2. Alternative Payment Methods legislation

Decision points

1. 1. Scope of Policy Committee
      1. Is “policy” defined as legislative only? (question from workgroup)
   2. Process for identifying Council priority legislation
   3. Process for deliberating on priorities/requests brought to us from PAGs

Minutes

Members of the Public:
Meeting called to order at 4:03pm. Motion to approve minutes by Karl Nelsen, seconded by Dawn Stenstrom.

Executive Director Report

Current Policy Initiative update

Discussed the status of the RDA Funding Bill, Network Access Bill, RDAC membership on the Drug Formulary
Review Committee. Executive Director invited Amy Gaviglio to discuss her engagement with the Everylife
foundation Prescription Drug Affordability Board regarding their interest in an exemption for rare diseases.

New Business

1. Executive Director discussed the council’s initial response to Alexion, and a follow up communication from
   Alexion which consisted of SF2445 with a new request of technical assistance and endorsement. Executive
   Director suggested deliberation within the committee.
   1. Council members discussed the concern with industry lead initiatives. Questions about the rapid whole
      genome sequencing (WGS) were raised.
   2. Supporting the technical assistance is something RDAC would consider but discussed a number of
      challenges.
   3. Supporting the endorsement is where council members raised concern.
   4. Committee discussed how to move forward about different perspectives and when to push back.
2. Policy Committee Outputs and the deliverables
   1. Executive Director proposed the idea of developing a policy guide for next legislative session; the council responded with agreeance of different guides that could be created and eventually sent out when RDAC receives requests (i.e. Alexion). Council members discussed the possibility of making a public or private guide.

Suggested additions to the policy guide:

1. The deliberation framework of the strategy of the full council vs the agency.
2. Outside members bringing up items not on the agenda should be discussed at another time. When to send a
   listening session.
3. Create a calendar when there is legislative session and closing out new input / council reserves the right to
   block off this time.

Action items:

• Bringing policy deliberation framework to full council for a vote was discussed, individual members
  voiced perspectives that the committee was not ready to bring a formal vote forward.
• Executive Director will respond to the Utah RDAC and gather further information for what the intent of
  the Policy Guide is and their primary audience.
• Full council discussion of elements of deliberation framework to be added to full council agenda.

Meeting called to adjourn by Dawn Stenstrom at 5:06pm, seconded by Karl Nelsen.