PWS Advocacy

PWS Mom Advocates for Wisconsin Legislation to Lower Treatment, Therapy Costs for Individuals Living with Rare Diseases

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!

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