• With the recent FDA approval of olipudase alfa for acid sphingomyelinase deficiency (ASMD) in adult in pediatric patients, there is an urgent need for the
community to understand their health insurance benefits for optimal utilization
• Through this research, the National Niemann-Pick Disease Foundation (NNPDF) sought to understand the health insurance literacy among the community and
the burdens faced by families as they attempted to access desired care, services, medications, medical equipment, and assistive devices
• While the outcomes of this research were used by NNPDF to design programs and inform various other workstreams intended to assist ASMD families, only
the results regarding health insurance literacy are addressed here