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).
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).
Authors: Pushpa Narayanaswami; Richard Dubinsky; David Wang; Gina Gjorvad; William David; Jonathan Finder; Benn Smith; Jianguo Cheng; Frederic Shapiro; Michelle Mellion; Christopher Spurney; Jodi Wolff; John England Journal: Neurology Date: 2015-09-08 Impact factor: 9.910
Authors: Kenneth M Estrellas; Liam Chung; Lindsay A Cheu; Kaitlyn Sadtler; Shoumyo Majumdar; Jyothi Mula; Matthew T Wolf; Jennifer H Elisseeff; Kathryn R Wagner Journal: J Biol Chem Date: 2018-08-23 Impact factor: 5.157
Authors: C Turnquist; I Horikawa; E Foran; E O Major; B Vojtesek; D P Lane; X Lu; B T Harris; C C Harris Journal: Cell Death Differ Date: 2016-04-22 Impact factor: 15.828