Last month, GLHF headed to Madison for our annual Wisconsin Legislative Day – a chance to share with lawmakers the true reality of the daily lives of people and families living with a bleeding disorder.
That is why this year, GLHF’s Wisconsin Legislative Day added an extra day for participants that included a story-telling seminar on Sunday afternoon. The seminar helped those attending craft their stories so that lawmakers could better understand what these families face on a daily basis.
“By perfecting their stories, it gave lawmakers a chance to truly understand what these families experience and the issues that are important to them,” said Danielle Leitner Baxter, Executive Director for GLHF. “Most importantly, how their lives are directly impacted by legislation being reviewed.”
This important day came at a time when health care policy is rapidly changing. Now, more than ever, it’s critical that lawmakers hear from people whose everyday lives are directly impacted by changes in health care legislation.
“I really think it’s important that I stay involved because this is such a critical issue,” said Tracie, whose son, Zach, has hemophilia. Most people don’t know anything about hemophilia or the cost of treating it.” Tracie continued. “It’s a great opportunity for Zach and me to talk to our legislators. It feels good to know we have a voice in our state about what affects us as a family living with a bleeding disorder. I love seeing Zach tell his story and that the legislators listen and show a true interest.” Tracie’s son, Zach, said that “I think it’s cool that kids my age and younger get to talk to their representatives about hemophilia.”
Currently, there is no cure for hemophilia. Individuals require lifelong infusions of replacement clotting factor therapies. Costs for clotting factor therapies typically average $250,000 a year or more for a person with severe hemophilia. However, developing an inhibitor (immune intolerance to regular treatment), bleeding from trauma or surgery, and other complications, can elevate the annual cost to $1 million or more.
The group met with 8 State Senators and 17 members from the State Assembly. The meetings focused on three primary issues;
- Issue One: 2019 Assembly Bill 1 – Pre-Existing Conditions
- Issue 2: 2019 Assembly Bill 24 – Step Therapy
- Issue 3: Thank you for the continued funding of the Wisconsin Chronic Disease program
GLHF thanks the Senators, Representatives and constituents for their time and consideration!