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.
1. Introduction to Public Policy of ALS/MND.- 2. Public Policy in MND
Care: The Australian Perspective.- 3. Public Policy in ALS/MND Care: The
Belgian Perspective.- 4. Amyotrophic Lateral Sclerosis in Brazil.- 5. Public
Policy of ALS in Canada.- 6. Public Policy for Amyotrophic Lateral Sclerosis
in China.- 7. German Perspective on ALS/MND Policy .- 8. Living and Dying
with ALS/MND in India: Public Policy and Private Realities.- 9. The
Experience of Amyotrophic Lateral Sclerosis in Ireland.- 10. Public Policy in
ALS Care in Israel.- 11. Public Policy in ALS Care: The Italian Situation.-
12. ALS Policy: A Japanese Perspective.- 13. ALS Policy in Mexico.-
14. Public Policy of MND: A Nigerian Perspective.- 15. Public Policy of ALS:
A Pakistani Perspective.- 16. Public Policy in ALS Care: The Polish
Perspective.- 17. ALS Policy: A Russian Perspective.- 18. Public Policy in
ALS/MND Care: South African Perspective.- 19. Public Policy of ALS: South
Korea.- 20. Amyotrophic Lateral Sclerosis Care in Tunisia.- 21. Public Policy
in MND Care: The United Kingdom.- 22. ALS Public Policy in the United
States.- 23. Conclusions: What We Can Learn from the Country Perspectives.
Robert H. Blank, PhD, (University of Maryland) is an adjunct Professor of Political Science at the University of Canterbury in Christchurch, New Zealand. He has been a frequent guest professor at Aarhus University in Denmark and at National Taiwan University in Taipei, Taiwan, and a Research Scholar at New College Florida. Jerome E. Kurent received his MD from the University of Cincinnati College of Medicine and completed residencies in Neurology and Internal Medicine at the Johns Hopkins Hospital. He completed fellowships in neuromuscular diseases and electromyography at the National Institutes of Health, followed by a Geriatrics Medicine fellowship at Harvard where he also received his MPH. Dr. Kurent joined the Medical University of South Carolina faculty in 1984, and is Professor of Neurology, Medicine and Psychiatry and Behavioral Sciences. David Oliver, MD., recently retired as Consultant Physician in Palliative Medicine at the Wisdom Hospice in Rochester, Kent where he developed an integrated service over 32 years. He is an Honorary Professor at the Tizard Centre at the University of Kent, where he supervises students and is involved in research.
