Among a surveyed cohort of patients with myasthenia gravis, 75% reported that their work was impacted, and 27% of respondents claimed they lost wages as a result of MG.
Findings from a survey of patients with myasthenia gravis (MG) and their families showed that the economic burden of living with the condition is high, as shown by out-of-pocket costs that averaged more than $15,000 per year.1
The study, presented at the 2022 American Association for Neuromuscular and Electrodiagnostic Medicine (AANEM) annual meeting, September 21-24, in Nashville, Tennessee, focused in on direct and indirect costs, employment and losses, financial decisions, and quality of life for patients with MG. Conducted by the Muscular Dystrophy Association, a total of 1058 individuals responded, 815 (77%) of whom were living with the disease, and 243 (23%) who were caregivers.
Senior author Pushpa Narayanaswami, MD, associate professor of neurology, Harvard Medical School, and colleagues found that medications and treatments accounted for the most annual out-of-pocket costs per year, at an average of $4812. Aside from those, the next highest costs were related to health insurance premiums ($3517), diagnosis ($2529), professional caregiving ($2408), health insurance deductibles ($1580), medical care ($1483), nonmedical items ($613), and medical equipment and devices ($428).
Although the study featured mainly White respondents (85%), higher out-of-pocket costs were reported by People of Color. This led the study investigators to conclude that broader outreach to People of Color within the MG community is needed to better understand the burden in this population. Aside from People of Color, there were several other economic disparities, including increased out-of-pocket costs for those with lower income, less education, or who were female. Notably, people receiving infusions represented the greatest group disparity, as these individuals had higher costs in each domain observed.
In terms of annual income, 36% of respondents brought in more than $75,000 per year; 17% were between $50,000 and 75,000; 21% were between $25,000 and 50,000; and 13% had less than $25,000 income per year. To manage the financial burden of MG, 70% of respondents made life choices, including spent savings or retirement (38%), delayed a major life event (31%), delayed major purchase (24%), delayed loan payment (23%), borrowed money (23%), or applied for governmental assistance (23%). Other financial decisions included received charity (17%), sold property (16%), delayed education (14%), sought rent/mortgage relief (9%), applied for grants/scholarships (9%), and started a GoFundMe (7%).
Overall, 39% of respondents claimed the were not satisfied with their financial health, while 38% were somewhat satisfied, and 22% were very satisfied. Costs of medications and treatments represented the highest major (45%) and minor (77%) concern, followed by costs of medical care, getting/keeping health insurance, cost of non-medical expenses, medical devices and equipment, and costs of professional caregiving. In terms of employment and lost wages, 75% of people with MG and 79% of caregivers felt the disease impacted work, while 27% and 23% of the same respective respondents reported lost wages.