- •NMOSD is associated with increased health care utilization and with a significant financial burden.
- •100 NMOSD patients from Argentina were included and AQP4-Ab and/or MOG-Ab testing were requested in 91% of patients.
- •Health insurance covered AQP4-Ab and/or MOG-Ab test partially in 15% of cases, but 33% of patients paid it in full of their own pocket.
- •Private insurance (OR=3.84, p=0.01) was the only factor independently associated with appropriate access to long-term NMOSD-specific medications.
Neuromyelitis optica spectrum disorder (NMOSD) is a rare but severe neuroimmunological condition associated with a significant financial burden. NMOSD is also associated with increased health care utilization, including neurology outpatient visits, magnetic resonance imaging (MRI) use, long-term medication, among others. We aimed to evaluate real-world patient experiences in access to care and NMOSD burden in an Argentinean cohort.
This cross-sectional study used a self-administered survey and was conducted in Argentina (2022). Patients with NMOSD were divided into three groups: private health insurance (PHI), social health insurance (SHI), and public health insurance (PHI, Ministry of Public Health). Differences in access and health care barriers were assessed.
One hundred patients with NMOSD (74 women) with a mean age at diagnosis of 38.7 years were included. Their EDSS was 2.8 and they were followed for 5.2 years. Of them, 51%, 11%, and 13% were employed (full-time: 57.5%), currently unemployed and retired by NMOSD, respectively. 55% of them visited between 2-3 specialists before NMOSD diagnosis. Aquaporin-4-antibody and/or myelin oligodendrocyte glycoprotein-antibody testing was requested in 91% (health insurance covered this partially in 15.3% and 32.9% of the time the test was entirely paid by patient/family). Patients with NMOSD receiving private medical care reported greater access to MRI, outpatient visits, and fewer issues to obtain NMOSD medications compared to those treated at public institutions. A longer mean time to MRI and neurology visit was found in the PHI group when compared with the other two subgroups. Regression analysis showed that private insurance (OR=3.84, p=0.01) was the only independent factor associated with appropriate access to NMOSD medications in Argentina.
These findings suggest that barriers to access and utilization of NMOSD care services in Argentina are common. NMOSD patients experienced problems to receive NMOSD medication properly, especially those from the public sector.
To read this article in full you will need to make a payment
Purchase one-time access:Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
One-time access price info
- For academic or personal research use, select 'Academic and Personal'
- For corporate R&D use, select 'Corporate R&D Professionals'
Subscribe:Subscribe to Multiple Sclerosis and Related Disorders
Already a print subscriber? Claim online access
Already an online subscriber? Sign in
Register: Create an account
Institutional Access: Sign in to ScienceDirect
- Brain and cord imaging features in neuromyelitis optica spectrum disorders.Ann. Neurol. 2019; 85 (Mar): 371-384
- Neuromyelitis optica spectrum disorders: from pathophysiology to therapeutic strategies.J. Neuroinflammat. 2021; 18 (Sep 16): 208
- Frequency of brain MRI abnormalities in neuromyelitis optica spectrum disorder at presentation: A cohort of Latin American patients.Mult. Scler. Relat. Disord. 2018; 19 (Jan): 73-78
- Barriers to access and utilization of multiple sclerosis care services in a large cohort of Latin American patients.Mult. Scler. 2021; 27 (Jan): 117-129
- Emerging drugs for the acute treatment of relapses in adult neuromyelitis optica spectrum disorder patients.Expert. Opin. Emerg. Drugs. 2022; 27 (Mar): 91-98
- Access and unmet needs to multiple sclerosis care in a cohort of Argentinean patients.Mult. Scler. Relat. Disord. 2019; 33 (Aug): 88-93
- Latin American consensus recommendations for management and treatment of neuromyelitis optica spectrum disorders in clinical practice[Mult Scler Relat Disord. 2020 Oct;45:102428].Mult. Scler. Relat. Disord. 2021; 52 (Jul)103026
- Application of the 2015 diagnostic criteria for neuromyelitis optica spectrum disorders in a cohort of Latin American patients.Mult. Scler. Relat. Disord. 2018; 20 (Feb): 109-114
- Assessing attacks and treatment response rates among adult patients with NMOSD and MOGAD: data from a nationwide registry in Argentina.Mult. Scler. J. Exp. Transl. Clin. 2021; 7 (Aug 20)20552173211032334
- N-MOmentum study investigators. Inebilizumab for the treatment of neuromyelitis optica spectrum disorder (N-MOmentum): a double-blind, randomised placebo-controlled phase 2/3 trial.Lancet. 2019; 394: 1352-1363
- Argentinean recommendations on the identification of treatment failure in relapsing remitting multiple sclerosis patients.J. Neurol. Sci. 2018; 385 (Feb 15): 217-224
- The epidemiology of multiple sclerosis in Latin America and the Caribbean: a systematic review.Mult. Scler. 2013; 19 (Jun): 844-854
- The patient journey with NMOSD: from initial diagnosis to chronic condition.Front. Neurol. 2022; 13966428https://doi.org/10.3389/fneur.2022.966428
- Burden and cost of comorbidities in patients with neuromyelitis optica spectrum disorder.J. Neurol. Sci. 2021; 427 (Aug 15)117530
- Socioeconomic status and access to multiple sclerosis treatment in Mexico.Mult. Scler. Relat. Disord. 2021; 52 (Jul)102967
- Neuromyelitis optica testing and treatment: availability and affordability in 60 countries.Mult. Scler. Relat. Disord. 2019; 33 (Aug): 44-50
- Health utilities and costs for neuromyelitis optica spectrum disorder.Orphanet. J. Rare. Dis. 2022; 17 (Apr 7): 159
- Guthy-Jackson Charitable Foundation NMO International Clinical Consortium & Biorepository. MRI characteristics of neuromyelitis optica spectrum disorder: an international update.Neurology. 2015; 84 (Mar 17): 1165-1173
- Evaluating the economic burden of relapses in neuromyelitis optica spectrum disorder: a real-world analysis using German claims data.Neurol. Ther. 2022; 11 (Mar): 247-263
- Rating neurologic impairment in multiple sclerosis: an expanded disability status scale (EDSS).Neurology. 1983; 33 (Nov): 1444-1452
- New therapies for neuromyelitis optica spectrum disorder.Lancet Neurol. 2021; 20 (Jan): 60-67
- Eculizumab in Aquaporin-4-positive neuromyelitis optica spectrum disorder.N. Engl. J. Med. 2019; 381: 614-625
- Access and barriers to MS care in Latin America.Mult. Scler. J. Exp. Transl. Clin. 2017; 3 (Mar 23)2055217317700668
- Multiple sclerosis and neuromyelitis optica spectrum disorder testing and treatment availability in Latin America.Neurol. Res. 2021; (Jul 9): 1-6
- Neuromyelitis Optica Spectrum Disorder: Clinical Burden and Cost of Relapses and Disease-Related Care in US Clinical Practice.Neurol. Ther. 2021; 10 (Dec): 767-783
- Safety and efficacy of satralizumab monotherapy in neuromyelitis optica spectrum disorder: a randomised, double-blind, multicentre, placebo-controlled phase 3 trial.Lancet Neurol. 2020; 19: 402-412
- Status of the neuromyelitis optica spectrum disorder in Latin America.Mult. Scler. Relat. Disord. 2021; 53 (Jun 15)103083
- MOG cell-based assay detects non-MS patients with inflammatory neurologic disease.Neurol. Neuroimmunol. Neuroinflamm. 2015; 2 (Mar 19): e89
- Weinshenker BG; International Panel for NMO Diagnosis. International consensus diagnostic criteria for neuromyelitis optica spectrum disorders.Neurology. 2015; 85 (Jul 14): 177-189
- Neuromyelitis optica spectrum disorder.N. Engl. J. Med. 2022; 387 (Aug 18): 631-639
- Trial of Satralizumab in neuromyelitis optica spectrum disorder.N. Engl. J. Med. 2019; 381: 2114-2124https://doi.org/10.1056/NEJMoa1901747
Published online: December 24, 2022
Accepted: December 22, 2022
Received in revised form: December 3, 2022
Received: September 26, 2022
© 2022 Elsevier B.V. All rights reserved.