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Calling Alaska PWS Families

The Alaska Medical Assistance DUR Committee will be meeting virtually at 1 PM AKDT on Friday, Sept. 19, 2025 

Here’s how you can help:

The Alaska Drug Utilization Review Board 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

Meeting Details:

When: Friday, September 19, 2025

Time: 1 PM AKDT

Advanced Registration Required: Microsoft Virtual Events Powered by Teams

Meeting Agenda: Alaska Medical Assistance DUR Commitee Meeting

Should you decide to provide written testimony, please be aware of the need to comply with all necessary disclosure requirements regarding your employer, as well as any business relationships you may have (or had) with Soleno Therapeutics, Inc. and/or other companies that may have an interest in this meeting.

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: Alaska Medicaid Clinical Coverage Review Request Disclosure Form.  Submissions should be received no later than September 17th 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?

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. 

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