MACMILLAN Public Policy in ALS/MND Care: An International Perspective

This book focuses on the public policy and political/ethical dimensions of ALS/MND across a wide selection of countries and argues for the need of a multidisciplinary and international approach. Policy issues addressed include adequacy of funding for research and care, payment policy and regulatory functions of public and private insurers, long-term services and caregiver support, public health and prevention efforts, access to genetic testing and assisted technologies, ensuring a competent and adequate workforce especially for hands-on caregivers, and the challenging issues of providing palliative and hospice care for ALS/MND patients, advance directives and assisted suicide that face policy makers in all political jurisdictions.  Review “There are numerous examples where the translation of the understanding and treatment of a disease process into public policy has been a critical event. This impressively comprehensive review of the major issues confronting this uniformly fatal neurodegenerative disease from a broad range of national perspectives is such an event. It highlights the epidemiology, options for care, ethical and cultural dilemmas and the need for accurate registries and greater visibility from an extensive range of 21 countries encompassing all sociodemographic levels. Above all, it illustrates the inequities in the accessibility of quality neurological care existing globally and which forms a major target for redress by the World Federation of Neurology and the World Health Organisation.” (William M. Carroll MD, FRACP, FRCP(E), President, World Federation of Neurology) “We need to better understand how countries around the world have approached this cruel and devastating disease, which also presents enormous public policy challenges. Sharing of knowledge across borders will help us defeat ALS/MND.  This book is an important tool in that effort.” (Calaneet Balas, President & CEO, The ALS Association, Chair, International Alliance for ALS/MND) “This is a unique book. ALS/MND is the same the world over but the way it is diagnosed and managed varies enormously from country to country, and from region to region. This variation depends on many factors - the national economy, cultural and religious factors, and governmental and private structures. Participants at international meetings on ALS/MND know that there are national differences in care but are generally not aware of specifics. The editors have done an excellent job of bringing together experts from 21 countries, who provide information on national specifics in a structured format. Anyone interested in ALS/MND - physician, patient, or healthcare policy director - should read this book and learn from it.” (Walter G. Bradley D.M., F.R.C.P., Professor and Chairman Emeritus, Department of Neurology, Miller School of Medicine, University of Miami, Miami, Florida, USA) “The progressive, relentless nature of ALS/MND means that you need to get the care right first time. As we, hopefully, approach an era of new, bespoke and - above all - effective treatments, so the link between policy and practice will become even more crucial. This book is a unique and bold attempt, not only to compare and contrast the variation in policy across the world, but also to understand policy through the perspective of those with real-world experience of treating this devastating disease.” (Brian Dickie, PhD, Director of Research Development, Motor Neurone Disease Association, Northampton, UK) “ALS/MND is a complex condition that has no respect for geographical boundaries. Whilst the manifestation of the condition itself is similar across the world, the policies used by governments and organisations to deal with it can, and do, vary. This excellent book pulls together some of these policies and looks at the variations and the reason behind them. There is much for those of us working within the MND community worldwide to diges