Neuromyelitis optica testing and treatment: Availability and affordability in 60 countries

Background: We characterize the variations in availability and affordability of NMO diagnostic testing and treatment by geographic region and country-level income group. Methods: A structured survey was distributed in English, French, and Spanish in late 2018 to neurologists and other physicians who encounter NMO patients. Results: Respondents (response rate 45%, 64/143 countries contacted) came from all WHO world regions and World Bank country income levels (49% university-based; 13 low-, 16 lower middle-, 16 upper-middle-, and 15 high-income countries). The average cost of an aquaporin-4 antibody (AQP4-Ab) test to a patient globally was 209 USD, and the average cost of NMO treatment per year was 3,819 USD. AQP4-Ab and myelin oligodendrocyte glycoprotein-antibody (MOG-Ab) testing were available in 68% and 38% of all countries. Low-income countries had poor availability of both AQP4-Ab (2/13 countries) and MOG-Ab (1/13) compared to high-income countries (15/15 AQP4-Ab, 13/15 MOG-Ab). Nearly half (48%, 13/27) of African and Eastern Mediterranean countries had access to neither test. Global treatment availability and usage: Azathioprine (88%), rituximab (50%), mycophenolate mofetil (57%), intravenous methylprednisolone (98%), oral prednisone (68%), plasma exchange (78%), intravenous immunoglobulin (72%). Whereas 70–100% of high-income countries’ patients could afford treatment without incurring a catastrophic health expenditure, <10% of low-income country patients could. Most low-income countries (12/13) reported the patient pays for NMO care entirely without public assistance Conclusions: There is a gap in access to diagnostic testing for NMO in non-high-income countries, even in countries where acute and immunosuppressive treatment for NMO are available.