The Total Economic Impact of Anti-Aquaporin-4 Antibody-Positive (AQP4-Ab+) Neuromyelitis Optica Spectrum Disorder (NMOSD) on Patients and Caregivers in the United States
Benjamin Osborne1, Evanthia Bernitsas2, Mayvis Rebeira3, Nicole Betor4, Caitlin Dodd4, Jesus Loreto5, Ashlee Olsen6, Alexis Garduno4, Justin Lee3, Lindsey Przybyl3, Jamie Sullivan7, Jeffrey Yu3
1Medstar Georgetown University Medical Center, 2Creighton University, 3Alexion, AstraZeneca Rare Disease, 4Avalere, 5Caregiver Consultant, 6Patient Consultant, 7The EveryLife Foundation for Rare Diseases
Objective:
To quantify the total economic impact, including direct, indirect, and nonmedical costs, of AQP4-Ab+ NMOSD on US patients and caregivers.
Background:
NMOSD is a rare autoimmune disease characterized by repeated, unpredictable relapses, often leading to irreversible neurological disability. Current data on the economic impact of NMOSD are generally limited to direct medical patient costs, excluding indirect/nonmedical patient and caregiver costs.
Design/Methods:
Indirect cost data including 2023 nonmedical costs were collected through an independent, electronic survey of patients with AQP4-Ab+ NMOSD and informal caregivers (January‒April 2024). Excess direct medical costs were sourced from 2022 claims data (IQVIA PharMetrics®/Inovalon Closed Claims/100% Medicare FFS), with 10:1 NMOSD:non-NMOSD matching by age and sex. Analyses were stratified by age, sex, and payer (Medicare FFS/Medicare Advantage/Commercial/Managed Medicaid) and weighted by US NMOSD prevalence.
Results:
Of 258 respondents, 209 were patients (female, 76%; mean±SD age, 45.1±12.6 years; 44% reported a relapse in 2023; 53% had an informal caregiver) and 49 were caregivers (female, 57%; mean±SD age, 42.1±13.6 years). Patients’ primary insurance was Medicare (18%), Medicaid (13%), Commercial (56%), Other/None (12%). The 2023 estimated total economic impact of AQP4-Ab+ NMOSD was $613M (excess direct costs, $256.5M [42%]; patient indirect costs, $231.5M [38%]; caregiver indirect costs, $124.9M [20%]). Average annual costs were $108,217/patient ($51,337 indirect) and $52,622/caregiver. Average indirect costs were higher for patients with a relapse ($57,327) versus those without ($44,423), with annual costs averaging $57,202 for patients with 1‒2 relapses and $60,940 for patients with 3‒4 relapses. Drivers of excess direct medical costs to patients (average, $56,880/year) were outpatient and drug costs.
Conclusions:
Beyond excess direct medical costs, indirect or nonmedical costs to patients and caregivers comprise over half of the total economic impact of AQP4-Ab+ NMOSD. These data should be collected on a more routine basis to understand the full impact of the disease.
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