A comprehensive study of the costs associated with amyotrophic lateral sclerosis (ALS), Duchenne muscular dystrophy (DMD) and myotonic dystrophy (DM) in the U.S was conducted. The total impact on the U.S. economy, including direct medical costs, non-medical costs, and loss of income was determined. Medical costs were calculated using a commercial insurance database and Medicare claims data. Non-medical and indirect costs were determined through a survey of families registered with the Muscular Dystrophy Association. Medical costs were driven by outpatient care. Non-medical costs were driven by the necessity to move or adapt housing for the patient and paid caregiving. Loss of income correlated significantly with the amount of care needed by the patient. The annual per-patient costs were calculated to be $63,693 for ALS, $50,952 for DMD, and $32,236 for DM. Population-wide national costs were $1,023 million (ALS), $787 million (DMD) and $448 million (DM).
