The Colorado Department of Health Care Policy & Financing will hold a Drug Utilization Review (DUR) Board meeting on August 12, 2025, from 1:00 to 5:00 p.m. (MT). This important meeting will review medications covered by Health First Colorado (Colorado’s Medicaid program) including those that could change the lives of individuals with Prader-Willi syndrome (PWS).
Here’s how you can help:
The DUR 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:
Submit to: DUR Pharmacist Jeffrey Taylor
Email: jeffrey.taylor@state.co.us
Deadline: Please submit no later than 1:00 p.m. on August 11, 2025
Testimony Format: Keep it under 2 pages. Include a photo of your loved one, if you’re comfortable. Speak from the heart. You don’t have to be a professional writer. Your story is what matters most.
What to include:
Here are a few themes to guide your letter:
- – The impact of constant hunger (hyperphagia) on your loved one and your family.
- – How a lack of treatment contributes to daily stress, safety risks, and a sense of hopelessness.
- – What access to medications like Vykat XR could mean for your loved one’s health, independence, and quality of life.
- – That hyperphagia is not the same as obesity, and why that distinction matters.
- – How this treatment could reduce long-term costs for the state by lowering the need for around-the-clock care, emergency services, and specialized supports.
You can view the meeting agenda and find the Zoom link to observe the meeting at: https://www.colorado.gov/pacific/hcpf/drug-utilization-review-board
(Select “Agenda” under “August 12, 2025, 1:00 pm – 5:00 pm”)
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.
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.