On March 4, GLHF headed to Madison for our annual Wisconsin Legislative Day – a chance to share with lawmakers the true reality of living with a bleeding disorder.
“By sharing their stories, lawmakers get a glimpse into what individuals and families living with a bleeding disorders experience and the issues important to them” said Karin Koppen, GLHF’s Director of Camp and Community Outreach. “Most importantly, how their lives are directly impacted by legislation being reviewed.”
Now, more than ever, it’s critical that lawmakers hear from people directly impacted by the changes in health care legislation. Currently, there is no cure for hemophilia. Individuals require lifelong infusions of clotting factor replacement therapies. Costs for clotting factor therapies average $250,000-$350,000 a year for a person with severe hemophilia. However, developing an inhibitor (immune intolerance to regular treatment), bleeding for trauma or surgery, and other complications, can elevate the annual cost to $1 million or more.
Our state and federal legislators need to understand how state government and policy issues impact individuals and families living with bleeding disorders. Thank you to the Senators, Representatives and Constituents who took the time to have important conversations.