Calling Minnesota PWS Families

The Minnesota Drug Formulary Committee Meeting will be open at 9 AM CT on Wednesday, Sept. 17, 2025.  

Here’s how you can help:

The Drug Formulary Committee needs to hear directly from you – the parents, caregivers, and family members who understand the real-life impact of hyperphagia (excessive hunger) in PWS. One of the medications under review is Vykat XR, the first-ever hyperphagia treatment specifically for individuals living with PWS that was approved by the FDA in March 2025. 

We’re asking families to submit written testimony to help decision-makers understand why access to this treatment is so urgently needed.

Submission Details:

• Max TWO Pages 

• May include photo 

• Medicare/Medicaid/Medicaid Waiver recipients are favored 

Meetings Details: 

Sept. 17, 2025  

Public Meeting – 9 AM – 1:30 PM CT   

ALL MEMBERS OF THE GENERAL PUBLIC CAN ACCESS THE MEETING AS FOLLOWS:  

Virtual option:  

Webinar Registration Link: Minnesota Drug Formulary Committee Meeting Webinar Registration 

We recommend you register in advance to attend the webinar. After registering, you will receive a confirmation email containing information about joining the webinar.  

The webinar will be open at 9 AM CT on Wednesday, Sept. 17, 2025.  

 Directions for the public to sign up to provide live testimonials via webinar during the public forum:  

1. Interested parties who wish to provide live testimonials during the public forum should email mn.dhs.dfc@state.mn.us no later than Wednesday, Sept. 17, 2025, 9 a.m. (Central Time) AND register for the webinar using the webinar registration link provided on this page before the date of the webinar. 
2. Interested parties must include a completed Minnesota Drug Formulary Committee Meeting Public Comment Disclosure Form (PDF) in their email request.
3. Interested parties who sign up to provide live testimonials must check in to the webinar by 9:15 a.m. (Central Time) and be ready to provide their testimonials when their names are called. Their lines will be unmuted during the public forum. All other lines will be muted.  
4. 
   An interested party’s testimonial is limited to three minutes. If more than 20 people wish to provide public comment during the public forum, we will reduce the time to ensure all people are able to provide comment before the committee.  

In-person option:  

Elmer Andersen Building, Room 2370  

540 Cedar Street  

St. Paul, MN 55101 

1. Interested parties who wish to provide live testimonials during the public forum should email mn.dhs.dfc@state.mn.us no later than Wednesday, Sept. 17, 2025, 9 a.m. (Central Time).  

Note: All Drug Formulary Committee members will participate in the meeting virtually.  

Directions for the public to sign up to provide live testimonials in person during the public forum: 

1. Interested parties must include a completed Minnesota Drug Formulary Committee Meeting Public Comment Disclosure Form (PDF) in their email request.  

1. Interested parties who sign up to provide live testimonials in person must be present in room 2370 of Elmer Andersen Building at 9:15 a.m. (Central Time) and be ready to provide their testimonials when their names are called.  

1. An interested party’s testimonial is limited to three minutes. If more than 20 people wish to provide public comment during the public forum, we will reduce the time to ensure all people are able to provide comment before the committee.  

Email all questions regarding the Drug Formulary Committee meeting to: mn.dhs.dfc@state.mn.us.  

Check-In (in-person and virtual): 9 to 9:15 AM CT

Public Meeting: 9:15 AM-1:30PM CT

Find the meeting materials in the “Meeting materials” section on the Drug Formulary Committee webpage 

Writing Guide: 

• My name is: 

• I live in: 

• My child living with PWS is ___ old and receives Medicaid in the state of CO. 

• Thank the members of the committee for the work they do. 

• How do the unmet needs of PWS affect your family? 

• If your son/daughter IS taking vykat XR, explain how access to the drug has changed your lives? 

• If your son/daughter IS NOT taking vykat XR, how will having access to an approved drug to treat hyperphagia in PWS change their lives and what their future looks like? 

• What is your hope for the approval of drugs to treat hyperphagia in PWS.  

Review:

If you’d like help drafting your story or want someone to review it with you, PWSA | USA is here to support you. Reach out to a fellow parent or contact us directly (info@pwsausa.org or 941.312.0400).

Remember, the experts will cover the science; your testimony will touch the hearts of the decision-makers. Bring them to tears with the reality of our challenges and the promise of what could be. This is where the power is.