Calling Alaska PWS Families

The Alaska Medical Assistance DUR 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 or public comment if you attend the meeting virtually 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 
  

Meeting Details: 

• When: Friday, November 21st    

• Time: 1:00p AK Time   

• Meeting Agenda: Agenda 

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

Any member of the public, including health care professionals, may submit unsolicited material related to the agenda items by sending an email to doh.hcs.pharmacy.info@alaska.gov.   

A conflict of interest form must accompany any submission and can be found at: https://health.alaska.gov/dhcs/Documents/pharmacy/forms/Alaska-Medicaid-Clinical-CoverageReview-Request-Disclosure-Form.pdf.  

Submissions should be received no later than November 19, 2025 to allow inclusion in the meeting. 

Writing Guide: 

• My name is: 

• I live in: 

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

• 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.