Contributed by Katie Moureau
On Wednesday, January 10, 2024, Katie Moureau, mom to a 9-year-old boy with PWS, was able to advocate in support of Wisconsin State Assembly Bill 687 – Authorization of Value-Based Arrangements for Medicaid Programs for all rare diseases. She was one of two advocates to testify.
As we know, there are NO FDA approved treatments for hyperphagia. That is why the arrival of gene and cell therapies has brought hope to parents like us. However, the rapid pace of innovation in medicine has outpaced our state’s capacity to finance these groundbreaking therapies.
Wisconsin Assembly Bill 687 addresses this challenge by creating a platform for the Department of Health Services to enter into value-based arrangements. The legislation does not mandate such agreements but provides the flexibility between the state and manufacturers.
Value-based arrangements are a solution to mitigate the potential high costs associated with these transformative therapies. By measuring the outcomes of treatments and compensating Medicaid programs accordingly, we introduce a new level of accountability.
For our family living with PWS, we know the importance of timely access to new and advanced treatments. This legislation provides a forward-looking approach to help the ever-changing landscape of gene and cell therapy. It is our responsibility to ensure that individuals with rare diseases, such as PWS, have access to the most advanced and effective treatments available. It is a matter of life and death for many!
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.
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.
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.
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.
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.