Financial cost of amyotrophic lateral sclerosis: A case study

Abstract

There are only a few recently published reports of the cost of amyotrophic lateral sclerosis (ALS) care in the United States. Our objectives were to: 1) report annual and disease-duration costs; 2) provide costs related to specific care and services; 3) present costs by payor; and 4) identify strategies and resources that can be offered to patients to assist with the financial burden of ALS. Over a 10-year period (2001–2010), all expenses related to the cost of care for an individual patient were collected concurrently and then analyzed in 2012. Results showed that total disease-duration costs were $1,433,992 (85% paid by insurance, 9% paid by family, 6% paid by charities). The highest costs were for in-home caregivers ($669,150), ventilation ($212,430) and hospital care ($114,558). In conclusion, this case study illustrates costs of care for ALS as a burden for patients that may impact treatment decisions. Charity organizations and insurance case-managers provide services to patients that can help reduce this burden. Costs for specific services as well as resources identified by this study offer physicians and other healthcare providers data-based cost of care information and strategies to share with their patients.

Key words::

• Amyotrophic lateral sclerosis
• patient care costs
• home care

Acknowledgements

The ALS Association is the study sponsor.

Information and recommendations were provided from Richard Bedlack (Duke University), Rup Tandan (University of Vermont), Lucie Bruijn (The ALS Association), and Celeste Gaspari (University of Vermont).

Research expertise, data management and graphics are acknowledged from Alexander Sherman and Ervin Sinani of the Neurological Clinical Research Institute (NCRI), Massachuettes General Hospital, Boston, Massachusetts. Assistance with data entry was provided by Lauren Dauro.

Declaration of interest: M Lyon is a paid consultant to The ALS Association.

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.