Financial burden of epidermolysis bullosa on patients in the United States
Emily S. Gorell, Paige W. Wolstencroft, Mark P. de Souza, Dédée F. Murrell, Eleni Linos, Jean Y. Tang
Abstract
Individuals with epidermolysis bullosa (EB), a group of genodermatoses with skin fragility, often require specialized and expensive bandaging. We analyzed the results from an online survey of 249 EB patients and caregivers living in the United States to investigate the financial impact of EB. Of respondents with severe EB subtypes (recessive dystrophic and junctional), 73% reported a major or moderate financial impact and 26% spent greater than $1000 per month on wound care supplies. These results demonstrate the high financial burden associated with epidermolysis bullosa in the United States and support the need for a federally funded EB bandage program.