The Economic Burden of Individuals Living with Generalized Myasthenia Gravis and Social Determinants of Health Barriers

OBJECTIVES: To identify the economic challenges experienced by individuals living with generalized myasthenia gravis (gMG), a rare autoimmune disorder, and facing social determinants of health (SDOH) barriers.

METHODS: US adults (18−75 years) living with gMG and SDOH barriers were recruited to complete a web-based quantitative survey. Quotas were used to include a balanced spread of baseline demographic categories including racial and ethnic background, employment status, annual family income, and insurance status among the study sample. Direct and indirect economic challenges were identified across 4 phases: diagnosis, accessing treatment, initiating treatment, and continuing treatment.

RESULTS: The survey was completed by 38 individuals living with gMG, of which the majority were non-White/Caucasian, unemployed, low income, and enrolled in public insurance. Most commonly reported day-to-day challenges were economic in nature, with 76% of respondents experiencing problems making ends meet at the end of the month. During the past 6 months, 50% of respondents felt concerned about maintaining stable housing, and nearly one-third (29%) were threatened to have household utility services (e.g. electric, gas, oil, water) cut off. Across the 4 phases, economic concerns were most commonly expressed during the accessing treatment phase. Managing funds for emergency care (66%), loss of income (61%), and non-medical expenses (58%) were expressed more commonly as a major concern compared with cost of medication and treatments (55%) and cost of medical care (42%).

CONCLUSIONS: Among individuals living with gMG and SDOH barriers, economic challenges were common, with several indirect costs and direct non-medical costs emphasized as major concerns. Future research and economic models should highlight these costs to inclusively capture the real-world experience of individuals living with gMG.