Assessing the Total Economic Burden of Generalized Myasthenia Gravis

This white paper assesses the total economic burden of generalized myasthenia gravis (gMG), a rare autoimmune disease affecting approximately 78,000 individuals in the United States. The document outlines the collective impact of rare diseases, emphasizing that while individual conditions may be uncommon, their overall effect on patients and caregivers is significant. It discusses the limitations of traditional health technology assessments that often overlook indirect and non-medical costs associated with rare diseases. The paper highlights a study conducted by the EveryLife Foundation, which estimated the economic burden of rare diseases to be $966 billion in 2019, with a substantial portion attributed to indirect costs. Additionally, it presents findings from the gMG 360 study, which utilized a mixed-methods approach to identify 25 impact elements affecting patients and caregivers. The results indicate that financial and occupational impacts are particularly pronounced, underscoring the need for more comprehensive, patient-centered research to fully understand the economic burden of gMG.