The clinical research director of the USCF Multiple Sclerosis Center discussed the importance of improving knowledge and education for patients with NMOSD, as well as strategies to do so. [WATCH TIME: 3 minutes]
WATCH TIME: 3 minutes
“The diagnosis of NMO for many patients is still mysterious. It's filled with fear, it's a scary diagnosis to hear about, and there's still a fair amount of misinformation and old information that people can get ahold of. So really closing that gap with these drugs that are FDA approved, and the patients who would be receiving these medications is, in my mind, an enormous unmet need.”
With the introduction of 3 FDA-approved medications for neuromyelitis optica spectrum disorder (NMOSD), the need to improve patient knowledge about the disorder remains pressing. Bruce Cree, MD, PhD, MAS, FAAN, clinical research director, UCSF Multiple Sclerosis Center, and professor of clinical neurology, UCSF Weill Institute for Neurosciences, spoke with NeurologyLive on the existing gap in patient knowledge and understanding of these treatments, which include inebilizumab (Uplinza; Horizon), satralizumab (Enspryng; Genentech), and eculizumab (Soliris; Alexion).
According to Cree, strides have been made by the Guthy-Jackson Charitable Foundation in addressing this unmet need but establishing an organization specific to NMOSD that is focused on fundraising and promoting patients’ best interests may be particularly beneficial—similar to how the National Multiple Sclerosis Society functions for those with multiple sclerosis. Commercials and television advertisements for NMOSD treatments are not prevalent due to the rarity of the disease, Cree said, adding that his hope is that pharmaceutical companies and other stakeholders will invest in patient education, as pricing and rates for these treatments remain high.