Skip to main content
Meetings & Events

Full Council Meeting

Friday February 7, 2025

Agenda

  1. Council priorities discussion and updates
    1. Funding
    2. Presumptive eligibility
    3. Drug Formulary Review Committee modifications
      1. Conflict of interest requirements
    4. Co-pay accumulator ban
      1. Scoped to rare diseases, left broad
  2. Council member engagement in 2025 legislative session

Materials provided

  • Agenda

Minutes

Call to Order at 10:00am by Dave Tilstra:
Roll call within Zoom Chat

Chair Tilstra offered some general housekeeping items regarding the RDAC legislative Focus meetings.

  • These meetings strictly focus on the current legislative activities of RDAC.
  • Moving forward, these meetings are NO LONGER mandatory. We encourage members to tune in and stay up to date on the work happening during the legislative session. We rely on quorum to make decisions or take any action as a Council. If a vote arises, we need 12 voting members present.
  • If a vote is made during a legislative check in, the Executive Subcommittee will be informed, and the vote will be added to the RDAC Journal of Votes.
    Natalie Schmidt is the new Policy Manager for RDAC. Natalie offered the Council a brief introduction and led the overview of the current bills that RDAC is working on.

Council priorities discussion and updates

  1. Funding – RDAC is asking that the appropriation made last year be made permanent
  2. Presumptive eligibility – RDAC is asking that presumptive eligibility align with SSA guidelines with a positive newborn screen. We want Medicade to be accessible when needed. In the rare disease scope, time is of the essence in getting appropriate treatment when available.
  3. Drug Formulary Review Committee modifications
    The RDAC ask is that the DFC improve their transparency with the public comment period on treatments being reviewed. Public comments are not acknowledged or posted anywhere. The process for decisions is unclear to the public and those outside of the committee. RDAC would like to be involved with decisions upon FDA approval of any new rare treatment option.

    1. Conflict of interest requirements also need to be made clear. Some of the few rare disease specialists are excluded from review due to conflicts of interest.
  4. Co-pay accumulator ban
    1. Scoped to rare diseases, left broad

Prohibition toward co pay accumulator – Cost savings do not benefit the customer.
There is often not a generic option for rare diseases

Council member engagement in 2025 legislative session

Call legislators – write letters and we will have some template language so we do not speak out of sync with the Council.

Public Comment

Hearing None

Meeting adjourned at 10:33am
Submitted By: Julie Olson

In Attendance

Council Members

  • Alexandra Mohror
  • Angela Cowen, ICSW
  • Barbara Joers
  • David Tilstra, MD
  • Dawn Stenstrom
  • Dr. Arthur Beisang, MD
  • Dr. Douglas Smith
  • Dr. Elizabeth Lando-King
  • Dr. Laura Lambert
  • Dr. Paul Peterson
  • Jackie Foster, MPH, RN, OCN
  • Kerry Hansen, RN
  • Maureen Alderman
  • Richard Schirber, Jr.

Staff and Guests

  • Natalie Schmidt, Policy Manager
  • Julie Olson, Operations Manager
  • Marnie Falk, Gillette Children’s
  • Asmaa Ferdjallah
  • Jon Vlasnik

Ex-Officio Members

  • Nicole Brown, MDH

Not In Attendance

Council Members

  • Dan Endreson
  • Dr. Paul Orchard, MD
  • Rae Blaylark
  • Rep. Liz Reyer
  • Rep. Tom Murphy
  • Sen. Julia Coleman
  • Sen. Liz Boldon
  • Sofia Shrestha

This meeting was held at

Sprucetree Center, 1600 University Ave W #310, St Paul, MN 55104 OR Wilder Center, Summit University Room, 451 Lexington Parkway North Saint Paul, Minnesota 55104