gMG Imposes an Enormous Economic Burden on Patients

Care management for individuals living with the rare autoimmune disorder generalized myasthenia gravis (gMG) needs to better focus on the direct and indirect costs that constitute economic barriers to their care, with the goal to improve access to holistic resources and to improve their disease management and outcomes.

These findings were published recently in Frontiers in Public Health.

Book about Myasthenia gravis and medication, injection, syringe and pills:Black book | Image Credit: mdaros - stock.adobe.com

Disease hallmarks of gMG include ocular, facial, bulbar, axial, and limb muscle weakness that can often be debilitating, resulting in an exorbitant economic burden that has been reported worldwide. In the United States alone, where direct medical costs are particularly high, the cost of gMG inpatient care rose 13-fold between 2003 and 2013, the study authors noted.

For their analysis, the study investigators noted that indirect costs constituted loss of income of the patient and/or their caregiver; indirect nonmedical costs were those stemming from transportation, home modifications, childcare, and professional caregiving; and direct medical costs included emergency care, medications and treatments, and medical care.

Qualitative interviews (double-blinded, 45-minute, web-assisted phone interviews) were conducted in 11 patients living with gMG (this group also included 2 caregivers and 2 patient advocacy groups) and a web-based quantitative survey (multiple-choice questions; answers were “major concern,” “concern,” or “no concern”) was administered to 38 patients, both to have a clearer understanding of the economic impact of social determinants of health (SDOH) on patients living with gMG.

“SDOH exacerbate economic burden, which is one of the core issues underlying health inequities historically, but the literature is still scarce in gMG,” the study authors wrote. “This critical knowledge gap stems from the historical underrepresentation of individuals living with SDOH barriers in research, in part because conventional recruiting approaches often do not systematically reach or resonate with individuals experiencing complex SDOH challenges.”

Most of the patients were aged 41 to 60 years (64% of the interview group and 53% of the survey group), women (64% and 74%, respectively), on public insurance or Medicare (45% each), unemployed (82% and 61%), had some post–secondary education (82% and 61%), and were non-White/Caucasian (73% and 61%).

From among the qualitative interviews, patients who had public insurance, lived in a nonurban area, or were unemployed had a positive correlation with a compounding economic burden, primarily from Medicaid refusing to cover physician-recommended treatments and having to pay out of pocket as a result.

One patient noted they were unable to work because of their gMG and lost their job as a result. The cost of gas, transportation, professional caregiving, and meals while traveling to and from treatment were cited as top nonmedical expenses. Another common challenge was applying for government assistance when on Medicare, with one patient saying their disability approval took 3 years.

Overall, the top 5 major economic concerns were managing funds for emergency care (66%), loss of income (61%), cost of nonmedical expenses (58%), cost of medications and treatments (55%), and managing finances/budgeting (50%). For concerns of any extent, the most common were cost of nonmedical expenses, how to apply for government assistance, and cost of medical devices and equipment (34% each); cost of medical care (32%); and managing funds for emergency care, managing finances/budgeting, getting/keeping health insurance, getting/keeping health insurance, and cost of accessible transportation (29% each).

A subanalysis also evaluated 4 major concerns driven by SDOH in 5 categories—insurance type, living environment, employment status, education level, and race/ethnic background—to come up with the target population most likely to cite it as a major concern:

• Cost of nonmedical expenses: patients on Medicaid who live in a rural area or small town and are unemployed
• How to apply for government assistance: patients on Medicaid who live in a suburban area and are unemployed
• Cost of accessible transportation: patients on Medicaid who live in a rural area or small town and are retired or unemployed
• Cost of professional caregiving: patients on Medicare who live in a suburban area and are unemployed

“Our results demonstrated a high degree of concern for both direct (medical and nonmedical) and indirect costs among individuals living with gMG and SDOH barriers,” the study authors wrote. “

Pronounced challenges were observed for individuals living with gMG who were unemployed, on public assistance, or living in a nonurban environment. And on the clinician side, the authors underscored the many challenges physicians face even in adequately addressing and finding relevant assistance to assuage these economic concerns.

“To ultimately improve outcomes for an increasingly diverse population of patients with gMG, current unmet needs must be clearly communicated to decision makers who influence systematic and institutional resource allocations,” the authors concluded. “In addition to researchers generating critical evidence, a unified voice from the gMG community will be the key to instigating broader-scale changes in gMG support.”

Reference

Hughes T, Howard JF Jr, Silvestri NJ, et al.The economic burden of individuals living with generalized myasthenia gravis and facing social determinants of health challenges. Front Public Health. 2023;11:1247931. doi:10.3389/fpubh.2023.1247931