Cost of illness for neuromuscular diseases in the United States

Muscle Nerve. 2014 Mar;49(3):431-8. doi: 10.1002/mus.23942. Epub 2014 Jan 28.


Introduction: We conducted a comprehensive study of the costs associated with amyotrophic lateral sclerosis (ALS), Duchenne muscular dystrophy (DMD). and myotonic dystrophy (DM) in the U.S.

Methods: We determined the total impact on the U.S. economy, including direct medical costs, nonmedical costs, and loss of income. Medical costs were calculated using a commercial insurance database and Medicare claims data. Nonmedical and indirect costs were determined through a survey of families registered with the Muscular Dystrophy Association.

Results: Medical costs were driven by outpatient care. Nonmedical 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.

Conclusions: We calculated the annual per-patient costs 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).

Keywords: Duchenne Muscular Dystrophy; Myotonic Dystrophy; Neuromuscular diseases; amyotrophic lateral sclerosis; cost of illness.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Cost of Illness*
  • Databases, Factual / statistics & numerical data
  • Female
  • Health Care Costs / statistics & numerical data
  • Health Surveys
  • Humans
  • Male
  • Medicare / economics
  • Medicare / statistics & numerical data
  • Neuromuscular Diseases / classification
  • Neuromuscular Diseases / economics*
  • Neuromuscular Diseases / epidemiology*
  • United States / epidemiology