title: Cost of illness for neuromuscular diseases in the United States.
abstract: BACKGROUND
  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).
authors.affiliation: Muscular Dystrophy Association, 3300 E Sunrise Drive, Tucson, Arizona, 85718, USA.
authors.forename: Jane
authors.initials: J
authors.lastname: Larkindale
authors.forename: Wenya
authors.initials: W
authors.lastname: Yang
authors.forename: Paul F
authors.initials: PF
authors.lastname: Hogan
authors.forename: Carol J
authors.initials: CJ
authors.lastname: Simon
authors.forename: Yiduo
authors.initials: Y
authors.lastname: Zhang
authors.forename: Anjali
authors.initials: A
authors.lastname: Jain
authors.forename: Elizabeth M
authors.initials: EM
authors.lastname: Habeeb-Louks
authors.forename: Annie
authors.initials: A
authors.lastname: Kennedy
authors.forename: Valerie A
authors.initials: VA
authors.lastname: Cwik
mesh_terms: D017281:Cost of Illness; D016208:Databases, Factual / Q000706:statistics & numerical data; D005260:Female; D017048:Health Care Costs / Q000706:statistics & numerical data; D006306:Health Surveys; D006801:Humans; D008297:Male; D006278:Medicare / Q000191:economics / Q000706:statistics & numerical data; D009468:Neuromuscular Diseases / Q000145:classification / Q000191:economics* / Q000453:epidemiology*; D014481:United States / Q000453:epidemiology
keywords: Duchenne Muscular Dystrophy; Myotonic Dystrophy; Neuromuscular diseases; amyotrophic lateral sclerosis; cost of illness