Executive Sub Committee Meeting

Approval of minutes

ACTION: Representative Murphy made a motion to approve the July 8, 2025, meeting minutes, motion seconded by Jackie Foster. Motion passed 4-4.

Executive Director Updates

Viral Manufacturing & Translational Consortium | The Hormel Institute

Pharmacist Replacement

Sofia Shrestha is stepping down. The committee was approached for recommendations for the pharmacy position.

Family Outreach and Patient Advocacy

• Update shared regarding a family contacted through Senator Abeler’s office about a young girl with an aggressive neurodegenerative disease.
• RDAC staff had already reached out, provided resources, and support for SSI/disability applications.
• The mother is interested in sharing her story publicly at an RDAC meeting, preferably before the October retreat.
• Discussion of the family’s pursuit of gene therapy options, recognizing substantial barriers (no current gene therapy, unclear industry partnerships, and steep fundraising goals).
• Noted that the patient’s disease progression may limit benefit from future therapies, but outreach and advocacy continue.

Templates for Individuals for Insurance and Schools

• RDAC developing letter templates to help patients appeal to health plans for out-of-network access and for rapid whole genome sequencing coverage.
• Consideration of legal review to ensure accuracy and proper statutory references before publishing for patient use.
• Plan to consult non-partisan staff counsel (with help from Rep. Murphy and Rep. Breyer) for legal vetting before release.
• Ensuring the templates include disclaimers that RDAC is not judging individual eligibility, but rather providing information based on statute.
• Discussion of different scenarios requiring distinct letters and the effectiveness of templates, drawing on successful past patient appeals.
• Idea shared to provide template resources on the website, along with information for patients about the right to appeal denials.
• Request for further suggestions of helpful form letters and sharing of clinic-developed templates.

October Retreat and Council Development

• RDAC developing letter templates to help patients appeal to health plans for out-of-network access and for rapid whole genome sequencing coverage.
• Consideration of legal review to ensure accuracy and proper statutory references before publishing for patient use.
• Plan to consult non-partisan staff counsel (with help from Rep. Murphy and Rep. Breyer) for legal vetting before release.
• Ensuring the templates include disclaimers that RDAC is not judging individual eligibility, but rather providing information based on statute.
• Discussion of different scenarios requiring distinct letters and the effectiveness of templates, drawing on successful past patient appeals.
• Idea shared to provide template resources on the website, along with information for patients about the right to appeal denials.
• Request for further suggestions of helpful form letters and sharing of clinic-developed templates.

Public Comment

None