Insurance coverage or cost was considered a barrier to prescribing novel NMOSD treatments in 42% of respondents, with the highest rate seen in eculizumab.
Findings from a survey study of academic neuroimmunologists reported that most feel comfortable prescribing the recently approved therapies for neuromyelitis optica spectrum disorder (NMOSD); however, insurance and cost issues were commonly perceived barriers in accessing these treatments. For patients stable on another agent, most neuroimmunologists did not change to a newly FDA-approved therapy.1
Published in Multiple Sclerosis and Related Disorders, 33 respondents from 18 states completed the survey, with participants self-reported treating a median number of 15 patients (IQR, 8-21). Overall, participants had a median duration of 8 years (IQR, 3-20) of independent practice after fellowship. The 14-question survey queried neuroimmunologists on their background and training, neuromyelitis optica (NMO) patient panel, the percentage of patients that have started on eculizumab (Soliris; Alexion), satralizumab (Enspryng; Genentech), or inebilizumab (Uplizna; Horizon Therapeutics) in different clinical scenarios, and the barriers to the use of these treatments.
Led by Jesse M. Thon, MD, a vascular neurologist at Cooper University Health Care, no respondents indicated that they were uncomfortable prescribing any of the novel NMOSD treatments (NNTs). Data from the survey showed no association between years of independent practice and the comfort in prescribing any agent, although there were associations between total patients with NMOSD and comfort with inebilizumab (ρ = 0.5594; Padj<0.01) and satralizumab (ρ = 0.4657; Padj = 0.04), but only a trend with eculizumab (ρ = 0.4275; Padj = 0.08).
Nearly half of respondents (48%) reported that they wanted to start a patient on an NNT but were not able, with insurance coverage or costs being the most common reason for this. In terms of specific agents, these 2 specific barriers accounted for 42%, 30%, and 21% of those seeking treatment with eculizumab, inebilizumab, and satralizumab, respectively. No patients reported safety concerns as a barrier to treatment, and some patients declined treatment in general. Pharmacy/formulary availability and lack of experience with medication, documented in 6% and 15% of any agent, were also considered barriers to treatment.
In total 4 respondents reported not having used NNTs in any clinical scenario and 5 reported not having used these agents in newly diagnosed patients with aquaporin-4-positive NMO. Of the 26 respondents who reported having used NNTs in newly diagnosed patients, half (n = 13) indicated treating with these agents in 1% to 25% of patients with NMOSD while fewer (19%; n = 5) reported using these agents for at least 75% of their patients seen.
A large proportion of respondents (21 of 24; 84%) claimed they had used NNTs for patients who have had a relapse while on a B-cell suppressing or other steroid-sparing agent. In total, 15 of the 21 respondents used 1 of these agents in at least 75% of their patients with a relapse, whereas the other 6 respondents used them only in 1% to 25% of their patients with a relapse. Survey results showed no significant association between the likelihood of a provider switching to an NNT following a relapse and duration of independent practice (ρ = –0.1454; Padj = 0.49) or number of patients treated by that provider (ρ = 0.3026; Padj = 0.14).
Off-label use of NNTs in AQP4-negative patients with NMOSD was uncommon, with only 5 of 30 (16%) reported use of an NNT in any of their antibody negative patients; however, more than three-fourths (25 of 33; 76%) reported that they would use NNTs if the FDA approved them for this patient population.
Issues to access with NMOSD therapies has been echoed throughout the community before. At the recently concluded MSMilan 2023, the joint ECTRIMS-ACTRIMS meeting, held October 11–13, in Milan, Italy, October 11–13, in Milan, Italy, Bruce Cree, MD, PhD, MAS, FAAN, the clinical research director of the UCSF Multiple Sclerosis Center, discussed challenges in accessibility for the 3 approved therapies for NMOSD caused by third-party payor resistance. In the video below, he explained why third-party payers are resistant to the use of high-cost medications despite their FDA approval.
1. Utilization of FDA approved treatments for neuromyelitis optica spectrum disorder in clinical practice: a survey study of academic neuroimmunologists. Mult Scler & Relat Disord. 2023;80:105076. doi:10.1016/jmsard.2023.105076