Public Policy in ALS Care: South Korea

Abstract

Amyotrophic lateral sclerosis (ALS) in South Korea is designated as a rare disease. Therefore, medical expenses for the affected patients and finances related to essential medical facilities are supported by the government under the Rare Disease Management Act. The Act on Welfare of Persons with Disabilities provides additional assistance for disabled patients. The Korean ALS Association, Seungil Hope Foundation and Lou Gehrig’s Network are three main patient advocacy groups supporting patients and families, raising awareness of ALS throughout the community and influencing policy change. National Health Insurance covers the entire Korean population. Therefore, all basic medical benefits are provided to all citizens regardless of their income. However, the payments for uninsured services, which include alternative treatments and precision medicine, require out-of-pocket payment, which financially challenges patients. Increasing support for caregivers and providing equal medical access across the nation are problems to be resolved.