Evaluation of the Indirect and Nonmedical Impacts of Generalized Myasthenia Gravis on Patients and Caregivers
Kelly Gwathmey1, Karen Yee2, Allison Foss3, Christina Ramirez4, Jamie Sullivan5, Susan dosReis6, Craig Thiele7, Taylor Schwartz8, Nicole Betor8, Olivia Hunt8, Mayvis Rebeira2, Pushpa Narayanaswami9
1VCU Health, 2Alexion, AstraZeneca Rare Disease, 3Myasthenia Gravis Association, 4Patient Consultant, 5The EveryLife Foundation for Rare Diseases, 6University of Maryland School of Pharmacy, 7Health Management Associates (subcontractor), 8Avalere, 9Beth Israel Deaconess Medical Center/Harvard Medical School
Objective:
Assess indirect and nonmedical costs for US patients with generalized myasthenia gravis (gMG) and caregivers.
Background:
gMG is a rare, chronic autoimmune disorder. Indirect gMG-associated economic impacts on patients and caregivers are not well studied.
Design/Methods:
Data from independently recruited patients and caregivers were collected for 2022 via web-based survey (August-December 2023). Total indirect costs using survey data and nationally representative earnings data were stratified by age/sex/payer and weighted by gMG prevalence yielding weighted averages.
Results:
Respondents included 239 patients with gMG and 81 caregivers (63% and 58% aged 18-49 years, respectively; 69% and 42% female). Time since gMG diagnosis/caring began was <10 years for most (83%/91%). Most patients (61%) had commercial insurance. Many caregivers were parents (26%) or spouses/partners (37%). On average, patients received formal/paid (9 hours/week) and informal (75 hours/week) care. The primary nonmedical gMG-related patient cost was equipment ($1201/year). The primary out-of-pocket caregiver cost was non-gMG household member care ($3103/year). Lost social productivity was 46% of patient productivity costs ($11,949/year). Caregiver productivity costs were lost earnings from early retirement (30%; $6414/year), absenteeism (26%; $5544/year), lost social productivity (26%; $5532/year), and reduced work productivity (18%; $3973/year). Indirect costs for patients ($33,388/year [weighted]) were driven by lost productivity and for caregivers ($92,101/year) by informal caregiving. Indirect patient costs increased with Myasthenia Gravis Activities of Daily Living score (0-6 [n=68], $30,698/year; 7-12 [n=115], $51,300/year; 13-18 [n=51], $71,534; 19-24 [n=5], $93,253).
Conclusions:
Both patients with gMG and caregivers report high annual indirect and nonmedical costs. Along with excess direct medical costs, these indirect and nonmedical costs to patients and caregivers contribute substantially to the total economic impact of gMG.
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