Advocates Addressed Lawmakers About Affordable Healthcare, Comprehensive Insurance Coverage and Medically Necessary Treatment at GLHF’s Wisconsin Advocacy Day
At the end of January, advocates from across Wisconsin gathered at the State Capitol for GLHF’s annual Wisconsin Advocacy Day. Patients, parents, caregivers, and HTC providers were united by one goal: to protect access to affordable, lifesaving care for people with bleeding disorders.
The day began with education and preparation. Advocates learned more about the policy issues impacting our community, received updates on current legislation, and practiced sharing their personal stories. For many attendees, this was their first time participating in Advocacy Day. For others, it was a continuation of years of dedicated engagement. Regardless of experience, every voice mattered, and every story carried weight.
Armed with information and determination, advocates met with legislators and their staff to discuss the urgent need to protect access to affordable health care, comprehensive insurance coverage, and medically necessary treatment.
For individuals and families in the bleeding disorders community, access to treatment is not optional, it is what allows them to live full, productive lives. It means being able to go to work or school, care for loved ones, and actively contribute to their communities. When treatment is accessible and affordable, our community thrives.
Unfortunately, certain pharmacy benefit manager (PBM) practices, specifically copay accumulator programs, threaten that access. These programs prevent manufacturer copay assistance from counting toward a patient’s deductible or out-of-pocket maximum. As a result, patients can suddenly face thousands of dollars in unexpected costs for the very therapies that keep them healthy and alive. For many families, those costs are simply unmanageable.
That’s why our advocates called on lawmakers to support and take immediate action on Cole’s Act (SB203 / AB173). This critical legislation would prohibit copay accumulator programs in Wisconsin, ensuring that copay assistance counts toward a patient’s out-of-pocket responsibilities.
Twenty-six states have already passed similar protections with overwhelming bipartisan support. Wisconsin has bipartisan backing and the votes needed to move this forward, but patients are still waiting.
Advocacy Day was a powerful reminder that when our community comes together, we make an impact. Legislators heard firsthand how policy decisions affect real people and real families. The conversations were thoughtful, meaningful, and hopeful.
We are grateful to every advocate who took time to attend, share their story, and stand up for access to care. Your voices matter, and together, we are moving closer to a Wisconsin where no one has to choose between their health and their financial security.
The work continues, and we will keep pushing forward until Cole’s Act becomes law.
If you would like to get involved with GLHF advocacy, please contact Karin at kkoppen@glhf.org for more information.