Highlighting Diagnostic Delays, Substantial Burden Across the MS Journey

Two large real-world analyses presented at ACTRIMS Forum 2026 shed new light on the multiple sclerosis (MS) care continuum, from the complex and often prolonged road to diagnosis to the substantial clinical and economic burden faced by patients living with primary progressive MS (PPMS).

Together, the studies underscore persistent gaps in early recognition, treatment access, and long-term disease management across diverse MS populations in the United States.

In one of the largest MS claims analyses to date, one set of researchers evaluated more than 400,000 patients using longitudinal real-world data to better understand pre-diagnostic trajectories. The study leveraged process mining and representation learning to model patient healthcare journeys prior to an MS diagnosis. Among the patients, 70% were female and predominantly white. Half the group had commercial insurance, followed by Medicare (34%) and Medicaid (15%).¹

Although specific quantitative findings regarding diagnostic timelines are currently embargoed, the group reported that the modeling uncovered subtle but meaningful patient trajectories associated with longer time to diagnosis. Identified barriers included referral bottlenecks, misdiagnosis hotspots, and insurance-related challenges.

“These real-world findings expose key roadblocks shaping the MS diagnostic and care continuum, including gaps in early recognition, insurance-related barriers, and variations in therapeutic decision-making,” wrote the researchers, who added that by scaling trajectory modeling to nearly half a million patients, far exceeding prior studies that analyzed roughly 8000 individuals, their analysis represents a significant advance in understanding MS’s heterogeneous prodromal phase.

A second retrospective cohort analysis focused on the burden of disease after diagnosis in patients with PPMS. Using US claims data from 2018 to 2023, researchers identified 3193 patients aged 30 years and older who were continuously enrolled in health plans for 2 years. The mean age was 57.3 years, 75.9% were female, and most patients (70.8%) had commercial insurance.²

The study paints a picture of substantial clinical complexity. The mean Charlson Comorbidity Index score was 2.1, and infections were reported in 82.1% of patients. Common MS-related comorbidities included abnormal gait (67.6%), malaise or fatigue (56.3%), and depression (37.2%). The average adapted disability score was 4.8, reflecting moderate functional impairment.

Healthcare utilization was high, with nearly half (46.3%) of patients having emergency department visits and 33.0% experiencing hospitalizations during the observation period. Use of ambulatory devices (74.9%), occupational therapy (74.8%), and physical therapy (66.3%) was common, highlighting the need for supportive care services.

Economic burden was similarly striking. Mean total annual healthcare costs reached $152,490 per patient, driven primarily by medical claims costs ($109,060) and outpatient pharmacy costs ($43,431).

Despite this burden, nearly half of patients (48.7%) were not receiving a disease-modifying therapy (DMT) at baseline. Among those treated, ocrelizumab (Ocrevus; Genentech) was the most commonly used agent (28.9%), followed by glatiramer acetate (11.9%) and fingolimod (Gilenya; Novartis) (5.9%). Given that only one DMT is currently approved specifically for PPMS in the United States, these findings underscore significant unmet therapeutic need.

Taken together, the 2 analyses illustrate a continuum of challenges in MS care. Diagnostic delays and fragmented referral pathways may hinder early intervention, while patients with progressive disease face high disability, extensive healthcare utilization, and substantial financial burden.

References

1. Gurjar A, Ramesh V, Syed SS, et al. A claims-based analysis of 447,222 MS patients: revealing pre-diagnostic trajectories with process mining and representation learning. Poster presented at: ACTRIMS Forum 2026; February 5-7; San Diego, California. Poster P403.

2. Greene N, Das A, Chang E, et al. A retrospective cohort study to assess the patient characteristics, clinical and economic outcomes and treatment patterns in people with primary progressive multiple sclerosis in the United States. Poster presented at: ACTRIMS Forum 2026; February 5-7; San Diego, California. Poster P417.