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Abstract Details

Evaluation of the Indirect and Nonmedical Impacts of Generalized Myasthenia Gravis on Patients and Caregivers
Neuromuscular and Clinical Neurophysiology (EMG)
P9 - Poster Session 9 (11:45 AM-12:45 PM)
11-032
Assess indirect and nonmedical costs for US patients with generalized myasthenia gravis (gMG) and caregivers.
gMG is a rare, chronic autoimmune disorder. Indirect gMG-associated economic impacts on patients and caregivers are not well studied.
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.
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).
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.
Authors/Disclosures
Kelly G. Gwathmey, MD (VCU Neuroscience, Orthopedic, and Wellness)
PRESENTER 		Dr. Gwathmey has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Alexion Pharmaceuticals. Dr. Gwathmey has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Argenx. Dr. Gwathmey has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Argenx. Dr. Gwathmey has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Strongbridge. Dr. Gwathmey has received personal compensation in the range of $500-$4,999 for serving as a Consultant for UCB. Dr. Gwathmey has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Amgen. Dr. Gwathmey has received personal compensation in the range of $500-$4,999 for serving as a Consultant for UCB. Dr. Gwathmey has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Novartis. Dr. Gwathmey has received personal compensation in the range of $10,000-$49,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Alexion Pharmaceuticals. Dr. Gwathmey has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Cabaletta. Dr. Gwathmey has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Alexion Pharmaceuticals.
Karen Yee, PhD (Alexion) Dr. Yee has received personal compensation for serving as an employee of Alexion. Dr. Yee has stock in Alexion. Dr. Yee has stock in Takeda.
Allison K. Foss Ms. Foss has received personal compensation for serving as an employee of Myasthenia Gravis Association. Ms. Foss has received personal compensation in the range of $500-$4,999 for serving as a Consultant for argenx. Ms. Foss has received personal compensation in the range of $500-$4,999 for serving as a Consultant for UCB. Ms. Foss has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Immunovant.
Christina A. Ramirez, RN Mrs. Ramirez has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Alexion Pharmaceuticals. Mrs. Ramirez has a non-compensated relationship as a Founder & Board Treasurer with Own MG that is relevant to AAN interests or activities.
Jamie Sullivan, MPH Ms. Sullivan has received personal compensation for serving as an employee of EveryLife Foundation for Rare Diseases. An immediate family member of Ms. Sullivan has received personal compensation for serving as an employee of Takeda. Ms. Sullivan has received personal compensation in the range of $5,000-$9,999 for serving as a Policy Advisor with COPD Foundation.
Susan dosReis, PhD Dr. dosReis has nothing to disclose.
Craig Thiele, MD Dr. Thiele has received personal compensation in the range of $500-$4,999 for serving as a Consultant for HEALTH MANAGEMENT ASSOCIATION.
Taylor T. Schwartz, MPH Mr. Schwartz has received personal compensation for serving as an employee of Avalere. Mr. Schwartz has received personal compensation for serving as an employee of Inovalon. The institution of Mr. Schwartz has received research support from Life Sciences Organizations.
Nicole Betor (Avalere) Nicole Betor has received personal compensation for serving as an employee of Avalere Health.
Oliva Hunt, MMS Ms. Hunt has received personal compensation for serving as an employee of Avalere .
Mayvis Rebeira, PhD Ms. Rebeira has stock in Alexion, Astrazeneca Rare Disease.
Pushpa Narayanaswami, MD, MBBS, FAAN (Beth Israel Deaconess Medical Center) Dr. Narayanaswami has received personal compensation in the range of $50,000-$99,999 for serving as a Consultant for UCB. Dr. Narayanaswami has received personal compensation in the range of $500-$4,999 for serving as a Consultant for CVS. Dr. Narayanaswami has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Sanofi. Dr. Narayanaswami has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Janssen. Dr. Narayanaswami has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Argenx USA. Dr. Narayanaswami has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Alexion. Dr. Narayanaswami has received personal compensation in the range of $0-$499 for serving on a Scientific Advisory or Data Safety Monitoring board for Argenx. Dr. Narayanaswami has received personal compensation in the range of $0-$499 for serving on a Scientific Advisory or Data Safety Monitoring board for NMD pharma. Dr. Narayanaswami has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for EMD-Serono (Merck usa). Dr. Narayanaswami has received personal compensation in the range of $0-$499 for serving on a Scientific Advisory or Data Safety Monitoring board for Immuneabs. Dr. Narayanaswami has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Viridian. Dr. Narayanaswami has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Cabaletta-Bio. Dr. Narayanaswami has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Immunovant. Dr. Narayanaswami has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Amgen. Dr. Narayanaswami has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Dianthus. Dr. Narayanaswami has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Cartesian. Dr. Narayanaswami has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Vor Bio. Dr. Narayanaswami has received personal compensation in the range of $5,000-$9,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for Muscle and Nerve, Wiley. Dr. Narayanaswami has received personal compensation in the range of $10,000-$49,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for Neurology. Dr. Narayanaswami has or had stock in Dr. Reddys laboratories.Dr. Narayanaswami has or had stock in Doximity. The institution of Dr. Narayanaswami has received research support from Alexion. The institution of Dr. Narayanaswami has received research support from NIH. The institution of Dr. Narayanaswami has received research support from Argenx. The institution of Dr. Narayanaswami has received research support from Cabaletta Bio. Dr. Narayanaswami has received publishing royalties from a publication relating to health care. Dr. Narayanaswami has a non-compensated relationship as a Member, Finance Committee with AANEM that is relevant to AAN interests or activities.