The role of managed care professionals in improving care for patients with ALS.

Amyotrophic lateral sclerosis (ALS) is a debilitating disease of progressively worsening physical function. The direct medical, direct nonmedical, and indirect costs of care for these patients is significant, and annual costs can be around $70,000 on average. Major drivers of cost can include hospitalizations, in-home care, nutrition, physical and occupational therapy, and medication interventions. Beyond the monetary costs, patients also endure a decreased quality of life, which may also burden caregivers and family members. Appropriate utilization management by managed care organizations and support for the multidisciplinary care team approach can help to ensure appropriate care, with a goal of optimizing clinical outcomes and potentially delaying disease progression. Although ALS has no cure, progressive gene therapy is currently being investigated and may offer promise. Thus, gene therapy may necessitate the need for novel and creative approaches to cost-management strategies in the future.