Introduction to Public Policy of ALS/MND

Abstract

This chapter outlines the framework and goals of this cross-national study of amyotrophic lateral sclerosis/motor neuron disease (ALS/MND) policy. It also describes the key features of ALS/MND and discusses criteria and associated challenges in making the diagnosis and the importance of excluding ALS/MND mimics. Epidemiology, genetics and possible environmental risk factors for ALS/MND are reviewed. Management of symptoms, challenges confronting caregivers, including access to palliative care and hospice during the end-of-life, and the broad range of ethical issues surrounding ALS/MND care are highlighted. This chapter examines the often-ignored public policy context and the importance of cultural and religious factors in understanding policy differences which exist across countries. Finally, this chapter introduces the countries selected for this study and summarizes the key topics of importance the authors were asked to address in their chapters.