A Patient’s Perspective on Progress and Challenges in NMOSD Treatment Advances: Sumaira Ahmed

WATCH TIME: 4 minutes

"I don’t think NMOSD is this deadly diagnosis anymore, and that’s largely [because of] all of the advancements we’ve had in treatments—and I would say diagnostics as well."

Recent advancements in the treatment of neuromyelitis optica spectrum disorder (NMOSD) have significantly transformed patient experiences, particularly in terms of clinical outcomes and quality of life. The introduction of targeted therapies, such as inebilizumab (Uplizna; Amgen), has been pivotal for patients. Clinical studies have demonstrated that following 3 years of inebilizumab treatment, 89% of patients with initially abnormal quality of life scores reported improvements. Additionally, among the 39% of patients with NMOSD who experienced abnormal pain levels at baseline, 78% reported reductions in pain intensity.¹

However, despite these therapeutic advancements, challenges remain in ensuring optimal patient care. Research has indicated that even a single NMOSD relapse can lead to increased disability and diminished health-related quality of life, emphasizing the critical need for effective relapse prevention strategies.² Additionally, chronic NMOSD-associated pain continues to impact patients, with pain severity being a significant predictor of reduced quality of life.³ Addressing these ongoing issues may require a comprehensive management approach that not only prevents relapses but also alleviates persistent symptoms to enhance overall patient well-being.

At the 2025 Americas Committee for Treatment and Research in Multiple Sclerosis (ACTRIMS) Forum, held February 27 to March 1, in West Palm Beach, Florida, Sumaira Ahmed, founder and executive director of the Sumaira Foundation, underscored these challenges during an interview with NeurologyLive^®. Reflecting on the evolution of NMOSD treatment, Ahmed highlighted the dramatic shift from a dire prognosis with limited off-label options to the availability of four FDA-approved therapies. Although these treatments have significantly improved patient outcomes, she emphasized the continued barriers to accessibility. Furthermore, Ahmed pointed out that some clinicians still favor outdated off-label therapies, reinforcing the need for ongoing education and advocacy to ensure patients receive the most effective and evidence-based treatment options.

Click here for coverage of 2025 ACTRIMS Forum.

REFERENCES
1. Cree BAC, Kim HJ, Weinshenker BG, et al. Safety and efficacy of inebilizumab for the treatment of neuromyelitis optica spectrum disorder: end-of-study results from the open-label period of the N-MOmentum trial. Lancet Neurol. 2024;23(6):588-602. doi:10.1016/S1474-4422(24)00077-2
2. Berthele A, Levy M, Wingerchuk DM, et al. A single relapse induces worsening of disability and health-related quality of life in patients with neuromyelitis optica spectrum disorder. Front Neurol. 2023;14:1099376. Published 2023 Apr 11. doi:10.3389/fneur.2023.1099376
3. Ayzenberg I, Richter D, Henke E, et al. Pain, Depression, and Quality of Life in Neuromyelitis Optica Spectrum Disorder: A Cross-Sectional Study of 166 AQP4 Antibody-Seropositive Patients. Neurol Neuroimmunol Neuroinflamm. 2021;8(3):e985. Published 2021 Apr 20. doi:10.1212/NXI.0000000000000985