The Societal Costs of Duchenne Muscular Dystrophy in Germany

Background/Purpose: Duchenne muscular dystrophy (DMD) is the most common hereditary neuromuscular disease, causing progressive muscle degeneration from early childhood. DMD results in severe disability with mobility loss and premature death. Currently, no causal therapy is available in Germany. This study aimed to determine the societal costs of DMD in Germany in 2022.

Methods: The average annual costs per person with DMD (pwDMD), lifetime costs for a pwDMD with average disease course, and total societal annual costs for all pwDMD were assessed based on a targeted literature review. Recent studies providing Germany-specific data by DMD stage (ambulatory/nonambulatory) were included. Costs were adjusted to 2022 price levels based on relevant price developments for individual cost components and analysed by DMD stage and cost type (direct: medical/nonmedical expenses; indirect: productivity loss/informal care; intangible: loss of quality of life).

Results: Three studies providing data from 2012 were included. For 2022, an estimated 2,905 pwDMD incurred average annual costs per pwDMD of €136,500, with in-/direct costs accounting for €90,200/46,300 ([Fig. 1]). Costs increased steeply in later nonambulatory stages, with ambulatory stages contributing €40,100 to 45,900 per pwDMD and year, and nonambulatory stages €67,500 to 217,200. Lifetime costs for a pwDMD with average disease course were €4.98 M (million; [Fig. 2]). Total societal annual costs were €400 M (95% CI regarding prevalence estimate: 280–560 M) with 66% indirect costs, including 23% due to informal care and 24% due to premature death (productivity losses over 31 lost working years on average).

Conclusion: DMD incurs significant individual and societal costs that increase steeply with disease progression, generating lifetime costs of €4.98 M per pwDMD and €400 M in total annual costs for all pwDMD. Future therapies with the potential to slow progression in early stages and extend life expectancy could effectively reduce the societal costs of DMD.

Fig. 1 Annual costs in € (for 2022) per person with Duchenne muscular dystrophy by disease stage (rounded to the nearest hundred). The costs of premature death are not included.

Fig. 2 Cumulative (cum) lifetime costs in € (for 2022) of a person with Duchenne muscular dystrophy with an average disease course. Costs increase exponentially upon entering nonambulatory stages until death; 46% of the indirect costs are incurred due to patients’ productivity losses following their death.

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Artikel online veröffentlicht:
26. September 2025