Abstract Details

Title 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

Topic Autoimmune Neurology

Presentation(s) P7 - Poster Session 7 (5:00 PM-6:00 PM)

Poster/Presentation
Number 8-008

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.

Authors/Disclosures
Benjamin J. Osborne, MD, FAAN (Medstar Georgetown University Hospital) PRESENTER	Dr. Osborne 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. Dr. Osborne has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for Alexion. Dr. Osborne has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for Amgen. Dr. Osborne has received publishing royalties from a publication relating to health care.
Evanthia Bernitsas, MD, FAAN (Wayne State School of Medicine)	Dr. Bernitsas 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. Bernitsas has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Vanda. The institution of Dr. Bernitsas has received research support from Roche/Genentech.
Mayvis Rebeira, PhD	Ms. Rebeira has stock in Alexion, Astrazeneca Rare Disease.
Nicole Betor (Avalere)	Nicole Betor has received personal compensation for serving as an employee of Avalere Health.
Caitlin Dodd	Miss Dodd has received personal compensation for serving as an employee of Avalere Health.
Jesus Loreto, Caregiver	Mr. Loreto has nothing to disclose.
Ashleeashlee J. Olsenolsen	Miss Olsenolsen has nothing to disclose.
Alexis Garduno, PhD	Dr. Garduno has received personal compensation for serving as an employee of Avalere.
Justin Lee	Justin Lee has received personal compensation for serving as an employee of Alexion.
Lindsey Przybyl	Lindsey Przybyl has received personal compensation for serving as an employee of Alexion, AstraZeneca Rare Disease. Lindsey Przybyl has stock in AstraZeneca.
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.
Jeffrey Yu, PhD (Alexion)	Dr. Yu has received personal compensation for serving as an employee of Alexion. Dr. Yu has stock in AstraZeneca.

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