When approached by the Global Neurology Research Group at Mass General Hospital (along with the Sumaira Foundation) with the opportunity to collaborate on a global study of neuromyelitis optica (NMO), we were eager to do so. The project aimed to increase visibility into NMO diagnosis and treatment globally, particularly in areas where access to care is limited.
The results from this collaboration were recently published in Multiple Sclerosis and Related Disorders. The following is a summary of key findings:
Global Reach and Focus on Needs
ZoomRx worked with the team of researchers at MGH to identify the key issues at hand, including NMO awareness, access to best-in-class diagnostic tools, and affordability of NMO treatment. Using the ZoomRx survey platform, we gathered responses from neurologists and other healthcare providers in 64 countries across the globe, from a variety of practice settings.
Gaps and Opportunities
From these responses, we were able to identify a few clear takeaways.
1. There is a critical gap in access to diagnostic testing for NMO in non high-income countries.
However, the relatively low cost of NMO diagnostic tests in the developing world presents opportunities for intervention.
2. Access to NMO treatment - including azathioprine and prednisone - was not as rare as hypothesized in more resource-limited settings. However, patient-borne costs were much more substantial in low-income countries, and less than 10% of the population in low-income countries could afford NMO treatment without catastrophic financial impact (vs. 70-100% of those in high-income countries).
This study was also presented as a poster at this year's AAN annual meeting. We hope that this work will bring awareness to the lack of accessibility and affordability of diagnostic tests for neuroimmunology diseases like NMO globally.