The Cost of Neuromuscular Disorders in the U.S.

The Muscular Dystrophy Association, in collaboration with the Lewin Group, has calculated the average cost of caring for three of the most common neuromuscular disorders.

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The study looks at both medical and non-medical costs associated with the care of people who have Duchenne muscular dystrophy (DMD), myotonic muscular dystrophy, and amyotrophic lateral sclerosis (ALS), as well as loss of income due to providing care.

The diseases were selected because each one had a large enough population to correlate significant findings and data could easily be retrieved through medical codes.

The study found that the yearly cost for each disease was as follows:

Duchenne Muscular Dystrophy

  • Medical costs: $22,533
  • Non-medical costs: $12,939
  • Lost income: $15,481
  • Total: $50,953

Myotonic Muscular Dystrophy

  •  Medical costs: $17,451
  •  Non-medical costs: $5,157
  •  Lost income: $9,628
  • Total: $32,236

Amyotrophic Lateral Sclerosis 

  • Medical costs: $31,121
  •  Non-medical costs: $17,889
  •  Lost income: $14,628
  • Total: $63,692

The total national cost for the three disease combined was conservatively estimated to be somewhere between $1.07 and $1.17 billion per year. The breakdown of which was $362 to $488 million for DMD, $448 million for MMD, and $256 to $433 million for ALS.

Researchers hope that the data will be used to demonstrate the need for better treatments and ultimately cures for the disorders; drug makers can use the data to lobby insurance companies to reimburse families for medications and treatments; and non-profit organizations can use the data to pressure the government into allocating more resources to families affected.

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