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The economic impact of ALS

From the National Organization for Rare Disorders (Ms. Klein), New Fairfield, CT; and the Department of Neurology (Ms. Forshew), University of Utah, Salt Lake City, UT.
Presented as a workshop at the Advances in Amyotrophic Lateral Sclerosis meeting, Orlando, FL, January 1996. Sponsored by Rhone-Poulenc Rorer Pharmaceuticals Inc.
Address correspondence and reprint requests to Ms. Lynn M. Klein, Executive Vice President, National Organization for Rare Disorders, P.O. Box 8923, New Fairfield, CT 06812-8923.

Abstract.

ALS is a progressive degenerative neuromuscular disease for which there is no known cause, treatment, or cure.The steady disease progression of muscle weakness eventually causes paralysis, disabling the patient. Day-to-day patient care and management most frequently fall to family members. The resultant financial burden can be enormous. We review financial issues related to the diagnosis, management of disease progression, and issues of life support. Cost-effective solutions are discussed. It is believed the key to reduction of costs is education of the health care community, patients and families, and third-party payers.

NEUROLOGY 1996;47(Suppl 2): S126-S129