Introduction: In a recent interview with the National Bleeding Disorders Foundation (NBDF), Bill Robie, Senior Director of Government Relations, shed light on the ongoing challenges faced by individuals like Maria Shoemaker from Vandergrift, who live with Von Willebrand disease. This rare disorder affects approximately 3 million Americans and necessitates regular, costly treatments to manage.
Maria Shoemaker has been managing Von Willebrand disease with regular infusions of a clotting factor hormone, each dose costing around $10,000. Historically, her medication costs were largely covered by the drug company, and until last year, these contributions counted towards her annual deductible. Consequently, Maria's out-of-pocket expenses remained manageable at a few hundred dollars annually.
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