The social costs of Duchenne muscular dystrophy in Switzerland

Duchenne muscular dystrophy (DMD) is a degenerative muscle disease that is inherited via the X-chromosome. The gradual degeneration of the muscles leads to complete paralysis of the extremities and thus to the loss of the ability to walk. Both breathing and the heart are affected during later phases of the disease. There are no licensed therapies in Switzerland at present that can stop the degenerative progress of the disease.

We calculated the social costs of DMD in Switzerland for the first time. We determined the direct, indirect and intangible costs for each of the four stages of the disease. Wherever possible, we referred to Swiss information on prices and quantities. Alternatively, we used information from international literature or expert estimates.

The social costs of DMD totalled CHF 48 million in 2020, which corresponds to CHF 157,400 per patient. Of this amount, CHF 34.2 million, or 66%, were indirect costs, i.e. loss of productivity in the labour market. The indirect costs were significantly higher than the direct costs in all of the four stages of the disease. The majority of the social costs (90%) were incurred during the stages of the disease in which the patient had already lost their ability to walk.