The National Niemann-Pick Disease Foundation presented an abstract and poster entitled “Understanding Health Insurance Literacy and Challenges in Accessing Health Services in Niemann-Pick Disease Through the Eyes of Patients and Families” at the 17^th Annual WORLDSymposium, which highlighted results of a study recently conducted by the NNPDF and Engage Health, Inc..

Niemann-Pick Disease is a group of ultra-rare genetic disorders characterized by intracellular lipid accumulation. There are multiple active clinical trials in both ASMD and NPC that offer hope to a community with no FDA approved therapies. As the community looks to a post-approval era, the National Niemann-Pick Disease Foundation aims to support families by gaining a thorough understanding of the community’s current health insurance status as well as the health consumer literacy. In this study, Niemann-Pick patients and families scored higher for health insurance literacy than the general US population, however, the study identified specific gaps in understanding.  These gaps included the ability to calculate expenses based on insurance coverage, awareness and use of Medicaid waivers, and knowledge of insurance deductibles as well as out-of-pocket maximums.

The results of this research will be used to inform ongoing advocacy efforts of the NNPDF to improve patient outcomes in a post-approval landscape.