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Original article| Volume 70, 104485, February 2023

Barriers to access and unmet needs to neuromyelitis optica spectrum disorders care in an Argentinean cohort

Published:December 24, 2022DOI:https://doi.org/10.1016/j.msard.2022.104485

      Highlights

      • 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.

      Abstract

      Introduction

      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.

      Methods

      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.

      Results

      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.

      Conclusion

      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.

      Keywords

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      References

        • Cacciaguerra L
        • Meani A
        • Mesaros S
        • Radaelli M
        • Palace J
        • Dujmovic-Basuroski I
        • Pagani E
        • Martinelli V
        • Matthews L
        • Drulovic J
        • Leite MI
        • Comi G
        • Filippi M
        • Rocca MA.
        Brain and cord imaging features in neuromyelitis optica spectrum disorders.
        Ann. Neurol. 2019; 85 (Mar): 371-384
        • Carnero Contentti E
        • Correale J.
        Neuromyelitis optica spectrum disorders: from pathophysiology to therapeutic strategies.
        J. Neuroinflammat. 2021; 18 (Sep 16): 208
        • Carnero Contentti E
        • Daccach Marques V
        • Soto de Castillo I
        • Tkachuk V
        • Antunes Barreira A
        • Armas E
        • Chiganer E
        • de Aquino Cruz C
        • Di Pace JL
        • Hryb JP
        • Lavigne Moreira C
        • Lessa C
        • Molina O
        • Perassolo M
        • Soto A
        • Caride A
        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
        • Carnero Contentti E
        • Giachello S
        • Correale J.
        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
        • Carnero Contentti E
        • López PA
        • Rojas JI.
        Emerging drugs for the acute treatment of relapses in adult neuromyelitis optica spectrum disorder patients.
        Expert. Opin. Emerg. Drugs. 2022; 27 (Mar): 91-98
        • Carnero Contentti E
        • Pettinicchi JP
        • López PA
        • Alonso R
        • Garcea O
        • Balbuena ME
        • Bortoluzzi C
        • Silva E
        • Cabrera M
        • Curbelo MC
        • Hryb JP
        • Di Pace JL
        • Perassolo M
        • Ianardi S
        • Mainella C
        • Mellinger S
        • Migliacci L
        • Pagani Cassara F
        • Sinay V
        • Carra A
        • Qüesta Laudani M
        • Ruiz Romagnoli E
        • Liwacki S
        • Piedrabuena R
        • Tizio S
        • Tkachuk V
        Access and unmet needs to multiple sclerosis care in a cohort of Argentinean patients.
        Mult. Scler. Relat. Disord. 2019; 33 (Aug): 88-93
        • Carnero Contentti E
        • Rojas JI
        • Cristiano E
        • Daccach Marques V
        • Flores-Rivera J
        • Lana-Peixoto M
        • Carlos N
        • Papais-Alvarenga R
        • Sato DK
        • Soto de Castillo I
        • Correale J
        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
        • Carnero Contentti E
        • Soto de Castillo I
        • Daccach Marques V
        • López PA
        • Antunes Barreira A
        • Armas E
        • de Aquino Cruz C
        • Rubstein A
        • Lavigne Moreira C
        • Molina OM
        • Soto A
        • Tkachuk V
        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
        • Contentti EC
        • Lopez PA
        • Pettinicchi JP
        • Criniti J
        • Pappolla A
        • Miguez J
        • Patrucco L
        • Carnero Contentti E
        • Liwacki S
        • Tkachuk V
        • Balbuena ME
        • Vrech C
        • Deri N
        • Correale J
        • Marrodan M
        • Ysrraelit MC
        • Leguizamon F
        • Luetic G
        • Menichini ML
        • Tavolini D
        • Mainella C
        • Zanga G
        • Burgos M
        • Hryb J
        • Barboza A
        • Lazaro L
        • Alonso R
        • Liguori NF
        • Nadur D
        • Chercoff A
        • Alonso Serena M
        • Caride A
        • Paul F
        • Rojas JI
        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
        • Cree BAC
        • Bennett JL
        • Kim HJ
        • et al.
        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
        • Cristiano E
        • Alonso R
        • Alvez Pinheiro A
        • Bacile EA
        • Balbuena ME
        • Ballario C
        • Barboza AG
        • Bestoso S
        • Burgos M
        • Cáceres F
        • Carnero Contentti E
        • Carrá A
        • Crespo E
        • Curbelo MC
        • Deri N
        • Fernandez J
        • Fernández Liguori N
        • Fiol M
        • Gaitán MI
        • Garcea O
        • Giunta D
        • Halfon MJ
        • Hryb JP
        • Jacobo M
        • Kohler E
        • Linares R
        • Luetic GG
        • Martínez AD
        • Míguez J
        • Nofal PG
        • Patrucco L
        • Piedrabuena R
        • Rojas JI
        • Rotta Escalante R
        • Saladino ML
        • Silva BA
        • Sinay V
        • Steinberg JD
        • Tarulla A
        • Vétere SA
        • Villa A
        • Vrech C
        • Ysrraelit MC
        • Correale J
        Argentinean recommendations on the identification of treatment failure in relapsing remitting multiple sclerosis patients.
        J. Neurol. Sci. 2018; 385 (Feb 15): 217-224
        • Cristiano E
        • Rojas J
        • Romano M
        • Frider N
        • Machnicki G
        • Giunta D
        • Calegaro D
        • Corona T
        • Flores J
        • Gracia F
        • Macias-Islas M
        • Correale J.
        The epidemiology of multiple sclerosis in Latin America and the Caribbean: a systematic review.
        Mult. Scler. 2013; 19 (Jun): 844-854
        • Delgado-Garcia G
        • Lapidus S
        • Talero R
        • Levy M
        The patient journey with NMOSD: from initial diagnosis to chronic condition.
        Front. Neurol. 2022; 13966428https://doi.org/10.3389/fneur.2022.966428
        • Exuzides A
        • Sheinson D
        • Sidiropoulos P
        • Magrini F
        • Gholizadeh S
        • Surinach A
        • Cook L
        • Meyer CS
        • Yeaman M.
        Burden and cost of comorbidities in patients with neuromyelitis optica spectrum disorder.
        J. Neurol. Sci. 2021; 427 (Aug 15)117530
        • Gómez-Figueroa E
        • de Saráchaga AJ
        • García-Estrada C
        • Casallas-Vanegas A
        • Delgado-García G
        • Garcia-Martinez P
        • Zabala-Angeles I
        • Marcin-Sierra M
        • Moreno-Torres P
        • Corona-Vázquez T
        • Rivas-Alonso V
        • Flores-Rivera J.
        Socioeconomic status and access to multiple sclerosis treatment in Mexico.
        Mult. Scler. Relat. Disord. 2021; 52 (Jul)102967
        • Holroyd K
        • Vogel A
        • Lynch K
        • Gazdag B
        • Voghel M
        • Alakel N
        • Patenaude BN
        • Chiong-Rivero H
        • Mateen FJ.
        Neuromyelitis optica testing and treatment: availability and affordability in 60 countries.
        Mult. Scler. Relat. Disord. 2019; 33 (Aug): 44-50
        • Hughes DA
        • Bourke S
        • Jones A
        • Bhatt R
        • Huda S
        • Mutch K
        • Jacob A.
        Health utilities and costs for neuromyelitis optica spectrum disorder.
        Orphanet. J. Rare. Dis. 2022; 17 (Apr 7): 159
        • Kim HJ
        • Paul F
        • Lana-Peixoto MA
        • Tenembaum S
        • Asgari N
        • Palace J
        • Klawiter EC
        • Sato DK
        • de Seze J
        • Wuerfel J
        • Banwell BL
        • Villoslada P
        • Saiz A
        • Fujihara K
        • SH; Kim
        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
        • Knapp RK
        • Hardtstock F
        • Wilke T
        • Maywald U
        • Deiters B
        • Schneider S
        • Mouchet J.
        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
        • Kurtzke JF.
        Rating neurologic impairment in multiple sclerosis: an expanded disability status scale (EDSS).
        Neurology. 1983; 33 (Nov): 1444-1452
        • Levy M
        • Fujihara K
        • Palace J.
        New therapies for neuromyelitis optica spectrum disorder.
        Lancet Neurol. 2021; 20 (Jan): 60-67
        • Pittock SJ
        • Berthele A
        • Fujihara K
        • et al.
        Eculizumab in Aquaporin-4-positive neuromyelitis optica spectrum disorder.
        N. Engl. J. Med. 2019; 381: 614-625
        • Rivera VM
        • Macias MA.
        Access and barriers to MS care in Latin America.
        Mult. Scler. J. Exp. Transl. Clin. 2017; 3 (Mar 23)2055217317700668
        • Rojas JI
        • Gracia F
        • Patrucco L
        • Alonso R
        • Carnero Contentti E
        • Cristiano E
        Multiple sclerosis and neuromyelitis optica spectrum disorder testing and treatment availability in Latin America.
        Neurol. Res. 2021; (Jul 9): 1-6
        • Royston M
        • Kielhorn A
        • Weycker D
        • Shaff M
        • Houde L
        • Tanvir I
        • Bhattacharyya S
        • Levy M.
        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
        • Traboulsee A
        • Greenberg BM
        • Bennett JL
        • et al.
        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
        • VM Rivera
        • Hamuy F
        • Rivas V
        • Gracia F
        • Rojas JI
        • Bichuetti DB
        • Villa AM
        • Marques VD
        • Soto A
        • Bertado B
        • Frenk IT
        • Galleguillos L
        • Quiñones J
        • Ramirez DA
        • Caparó-Zamalloa C
        • Ciampi E
        • Lana-Peixoto MA
        • Rodríguez E
        • Zarco L
        • Sinay V
        • Armas E
        • Becker J
        • Benzadón A
        • Lopez E
        • Contentti EC
        • Correa-Diaz EP
        • Diaz A
        • Fleitas CV
        • Playas G
        • Molina O
        • Rojas E
        • Sato D
        • Soto I
        • Céspedes JV
        • Correale J
        • Barboza A
        • Monterrey P
        • Candelario A
        • Tavolini DR
        • Parajeles A
        • Pujol BS
        • A Diaz de la Fe
        • Alonso R
        • Bolaña C
        • Guzman MK
        • Carrá A
        • Gamarra OG
        • Raggio JV
        • Rodriguez LC
        • Ramirez NE
        • Ordoñez L
        • Skromne E
        • Portillo LL
        • Canabal AP
        • Weiser R
        • Sirias V
        • Calderón RF
        • Cornejo EA
        • Hernández M
        • Quiroz JCD
        • Garcia LA
        • Cedeño CO
        • Martínez J
        • Abad-Herrera P
        Status of the neuromyelitis optica spectrum disorder in Latin America.
        Mult. Scler. Relat. Disord. 2021; 53 (Jun 15)103083
        • Waters P
        • Woodhall M
        • O'Connor KC
        • Reindl M
        • Lang B
        • Sato DK
        • Juryńczyk M
        • Tackley G
        • Rocha J
        • Takahashi T
        • Misu T
        • Nakashima I
        • Palace J
        • Fujihara K
        • Leite MI
        • Vincent A
        MOG cell-based assay detects non-MS patients with inflammatory neurologic disease.
        Neurol. Neuroimmunol. Neuroinflamm. 2015; 2 (Mar 19): e89
        • Wingerchuk DM
        • Banwell B
        • Bennett JL
        • Cabre P
        • Carroll W
        • Chitnis T
        • de Seze J
        • Fujihara K
        • Greenberg B
        • Jacob A
        • Jarius S
        • Lana-Peixoto M
        • Levy M
        • Simon JH
        • Tenembaum S
        • Traboulsee AL
        • Waters P
        • Wellik KE
        Weinshenker BG; International Panel for NMO Diagnosis. International consensus diagnostic criteria for neuromyelitis optica spectrum disorders.
        Neurology. 2015; 85 (Jul 14): 177-189
        • Wingerchuk DM
        • Lucchinetti CF.
        Neuromyelitis optica spectrum disorder.
        N. Engl. J. Med. 2022; 387 (Aug 18): 631-639
        • Yamamura T
        • Kleiter I
        • Fujihara K
        • Palace J
        • Greenberg B
        • ZakrzewskaPniewska B
        • et al.
        Trial of Satralizumab in neuromyelitis optica spectrum disorder.
        N. Engl. J. Med. 2019; 381: 2114-2124https://doi.org/10.1056/NEJMoa1901747