OBJECTIVES:

Amyotrophic lateral sclerosis (ALS) is a fatal neurodegenerative disease that currently has no cure. This analysis sought to quantify healthcare costs in ALS patients over time.

METHODS: Adult patients newly diagnosed with ALS between 2016 and 2020 were identified in the Merative^TM MarketScan® Commercial and Medicare claims databases. Eligible patients had ≥1 inpatient or ≥2 non-diagnostic outpatient claims with a diagnosis for ALS; the first claim served as the index date. Patients also had ≥12-months of continuous eligibility prior and ≥30-days following index; individuals with non-diagnostic ALS diagnoses or claims for ALS medications (riluzole or edaravone) in the pre-period were excluded. All-cause and ALS-related costs were reported over baseline and the first 3-years of follow-up; costs were reported as PPPM costs in 6-month intervals among patients with ≥30-days of eligibility in each interval. A 1-year sensitivity analysis was conducted among the subset of patients with continuous enrollment for 12-months following index.

RESULTS: Analyses included 1,480 eligible patients; mean±SD follow-up was 457±391 days. Average age at diagnosis was 60.5±12.4 and 58% of the sample was male. Total all-cause costs escalated quickly increasing approximately 66% interval-to-interval over the first three intervals. Total all-cause costs peaked at $5,538 PPPM in the first 6-months of the post-period before stabilizing over the remainder of the study period ($4,437-$5,184 PPPM). Pharmacy costs accounted for about 9% of total costs but showed an increasing trend over time (9-19%). ALS-related costs accounted for 55-65% of total healthcare costs over follow-up. Cost trends were similar in the sensitivity analysis of patients with at least one year of follow-up.

CONCLUSIONS: ALS is a physically devastating disease associated with a substantial economic burden. Although the condition will always be expensive, prompt diagnosis and effective early management may help to reduce the overall burden of disease in the long-term.