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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.

This chapter summarizes the wealth of information related to ALS/MND policy as presented in the preceding chapters written by experts from twenty-one diverse countries. An overview of findings related to ALS/MND policy issues is described and discussed. Major disparities between high- and low- and middle-income countries are noted, including differences within each wealth category regarding the activity and support of government and private organizations. Disparities are observed with research funding, diagnosis and care of patients, access to assistive technologies and palliative care, the availability of multidisciplinary care, support for caregivers and decision making at the end of life. This chapter also stresses the importance of cultural and societal differences in understanding policy variation across countries while recognizing the need to take these into account when framing and implementing policy in any country.

Objective Achieving universal health coverage has been an important goal for many countries worldwide. However, the rapid growth of health expenditures has challenged all nations, both those with and without such universal coverage. Single-payer systems are considered more efficient for administrative affairs and may be more effective for containing costs than multipayer systems. However, South Korea, which has a typical single-payer scheme, has almost the highest growth rate in health expenditures among industrialized countries. The aim of the present study is to explicate this situation by comparing South Korea with Taiwan. Methods This study analyzed statistical reports published by government departments in South Korea and Taiwan from 2001 to 2015, including population and economic statistics, health statistics, health expenditures, and social health insurance reports. Results Between 2001 and 2015, the per capita national health expenditure (NHE) in South Korea grew 292%, whereas the corresponding growth of per capita NHE in Taiwan was only 83%. We find that the national health insurance (NHI) global budget cap in Taiwan may have restricted the growth of health expenditures. Less comprehensive benefit coverage for essential diagnosis/treatment services under the South Korean NHI program may have contributed to the growth of out-of-pocket payments. The expansion of insurance coverage for vulnerable individuals may also contribute to higher growth in NHE in South Korea. Explicit regulation of health care resource distribution may also lead to more limited provisioning and utilization of health services in Taiwan. Conclusion Under analogous single-payer systems, South Korea had a much higher growth in health spending than Taiwan. The annual budget cap for total reimbursement, more comprehensive coverage for essential diagnosis and treatment services, and the regulation of health care resource distribution are important factors associated with the growth of health expenditures.

The paper outlines the policy context and summarizes the numerous policy issues that AD raises from the more generic to the unique. It posits that strong public fears of AD and its future prevalence projections and costs, raise increasingly difficult policy dilemmas. After reviewing the costs in human lives and money and discussing the latest U.S. policy initiatives, the paper presents two policy areas as examples the demanding policy decisions we face. The first focuses on the basic regulatory function of protecting the public from those who would exploit these fears. The second centers on the well-debated issues of advance directives and euthanasia that surround AD. Although more dialogue, education and research funding are needed to best serve the interests of AD patients and families as well as society at large, this will be challenging because of the strong feelings and divisions AD engenders.

Alzheimer’s disease is the costliest disease in large part because of its long duration of disability and resulting need for labor-intensive long-term care (LTC). This chapter examines both informal and formal caregivers and the heavy burden placed on families, primarily women. It analyzes the tension between home versus institutional care and recent policy attempts to strengthen LTC services. The chapter then analyzes the emerging emphasis on the social health of AD patients and summarizes research across many disciplines in developing new care approaches.

This chapter examines the commercial aspects and big business surrounding Alzheimer’s disease (AD). It argues that the strong public fear of AD, heightened by often dramatic media coverage, heightens the likelihood of exploitation of vulnerable people looking for a fix to declining cognition. After examining the wide range of products being marketed and discussing the scientific evidence of medical and other treatment approaches, it argues for greater regulation particularly over direct-to-consumer marketing of purported remedies and even cures for dementia.

This chapter discusses a range of policy and ethical issues dealing with end-of-life decision making for Alzheimer’s patients. It analyzes issues including: palliative care; advance directives; withholding or withdrawing artificial hydration and feeding, antibiotics, and other care; and physician-assisted suicide. Caring for someone with AD at the end of life raises unique challenges because, in contrast to cancer and other advanced chronic diseases, a person with AD at some stage will lose cognitive abilities, function, and capacity. Therefore, they will be unable to make decisions about their care and treatment or express their needs and wishes for a protracted period as death approaches. This chapter also reviews the wide variation of end-of-life policies across cultures and within the United States.

The concluding chapter first recapitulates why policy issues surrounding AD and other dementias are becoming increasingly difficult. It also discusses the issue of rationing medical care by age, which is especially important for AD, and the notion of the technological fix. It then examines the various technological scenarios and the implications of each for AD policy. It concludes by calling for more cross-national political learning in framing anticipatory policies best able to deal with the issues AD raises for society.

This chapter outlines the policy making process and the policy context of Alzheimer’s disease (AD) and summarizes the broad range of issues surrounding it. It examines why AD promises to be a policy challenge well into the future as its prevalence and economic costs escalate. It details the economic and social costs of AD and illustrates how they threaten to bankrupt health care systems unless we develop adequate anticipatory policies to deal with the issues they raise. The chapter also examines the research funding for AD compared to other diseases and summarizes recent policy initiatives and commission and association reports to deal with the challenges it raises.

Introduction Patients with chronic conditions largely depend on proper medications to maintain health. This study aims to examine, for patients with diabetes and hypertension, whether the appropriateness of the quantity of drug obtained is associated with favorable healthcare outcomes and lower expenses. Methods This study utilized a longitudinal design with a seven-year follow-up period from 2002 to 2009 under a universal health insurance program in Taiwan. The patients under study were those aged 18 years or older and newly diagnosed with type 2 diabetes or hypertension in 2002. Generalized estimating equations were performed to examine the relationship between medication supply and health outcomes as well as expenses. Results The results indicate that while compared with patients with an appropriate medication supply, patients with either an undersupply or an oversupply of medications tended to have poorer healthcare outcomes. The study also found that an excess supply of medications for patients with diabetes or hypertension resulted in higher total healthcare expenses. Conclusion Either an undersupply or an oversupply of medication was associated with unfavorable healthcare outcomes, and that medication oversupply was associated with the increased consumption of health resources. Our findings suggest that improving appropriate medication supply is beneficial for the healthcare system.

This chapter presents an admittedly speculative policy approach to dealing with the wide array of potential enhancement interventions. It also discusses the need for dedicated research on CE, especially CE devices. It argues the need for medical technology assessment of CE techniques that include analysis of long-term, second-order consequences, both positive and negative. It then examines what, if any, boundaries of social justification there are for mandatory use, economic incentives, licensing, disincentives or prohibition of cognitive enhancement technologies.

The chapter opens with an overview different perspectives that guide policy options that are available to policy makers to regulate research, marketing and individual use of CE technologies. As noted above, while all of these potential enhancement techniques elicit the same broad social policy concerns, they (especially the physical interventions) di er widely in efficacy, potential usage and risk; and this must be recognized in efforts to regulate their use. The role of the public and experts in CE and difficulties of getting it on political agendas are also discussed.

After discussing what cognitive enhancement (CE) is and how it differs from therapy, this chapter will provide an overview of a range of nootropic drugs, devices and procedures that are, or are proposed to be, used for enhancement. Those covered include: methylphenidate; modafinil; amphetamines; beta-blocking drugs such as propranolol; donepezil; brain games; neurofeedback; transcranial direct current stimulation; transcranial magnetic stimulation; deep brain stimulation; and brain-computer interfaces (BCI). It then summarizes the latest scientific data on the effcacy of these interventions. It also includes an analysis of the current prevalence of CE use.

This chapter discusses the emerging debate over CE that includes potential safety problems with the long-term use of drugs in healthy individuals, the possibility of direct or indirect coercion to take enhancement drugs, the social justice concerns that access will not be distributed equally and that the use of enhancement poses a threat to social values by undermining the worth and dignity of hard work and represents a form of cheating. In general, the concerns of the critics can be classified into two broad categories: concerns about the harm that may be experienced by those who use the enhancement technologies and concerns about the adverse social impact of the widespread use and societal embrace of enhancement technologies. The chapter also looks at public opinion toward CE and the impact of the media, the Internet and commercialization on CE.

The United States spends considerably more on medical care than any country in the world but is the only resource-rich country where a substantial portion of its residents lack health insurance coverage. Moreover, the US continues to rank low on most measures of health outcome compared to other developed countries. Therefore, there was considerable incredulity by those unfamiliar with the US as to why a revamping of this obviously broken system was not widely embraced by the American public when in 2009 a popularly elected president made healthcare reform his top priority. This commentary examines this phenomenon and discusses why a meaningful transformation of the US healthcare system has proven so elusive. Among the factors discussed here are political institutions and economic forces, a powerful medical establishment, the dominant private insurance industry, an extensive liability system and a public that is highly suspicious of any government involvement in healthcare.

The World Health Organization's 2008 report asserted that the focus on primary healthcare (PHC) within health systems should increase, with four sets of reforms required. The WHO's PHC advocacy is well founded, yet its report is a policy document that fails to address adoption and implementation questions within WHO member countries. This paper examines the prospects for the WHO PHC agenda in 12 high-income health systems from Asia, Australasia, Europe and North America, comparing performances against the WHO agenda.A health policy specialist on each of the 12 systems sketched policy activities in each of the four areas of concern to the WHO: (a) whether there is universal coverage, (b) service delivery reforms to build a PHC-oriented system, (c) reforms integrating public health initiatives into PHC settings and (d) leadership promoting dialogue among stakeholders.All 12 systems demonstrate considerable gaps between the actual status of PHC and the WHO vision when assessed in terms of the four WHO reform dimensions, although many initiatives to enhance PHC have been implemented. Institutional arrangements pose significant barriers to PHC reform as envisioned by the WHO.PHC reform requires more attention from policy makers. Meanwhile, the WHO PHC report is perhaps too idealistic and fails to address the fundamentals for successful policy adoption and implementation within member countries.CONTEXTE : Le rapport 2008 de l'Organisation mondiale de la Santé affirme qu'il faut mettre plus d'accent sur les soins de santé primaires (SSP) dans les systèmes de santé, au moyen de quatre séries de réformes. Cette position de l'OMS est bien fondée, cependant le rapport est un document de politiques qui n'aborde pas les questions d'adoption et de mise en œuvre dans les pays membres de l'OMS. Cet article étudie le potentiel du programme de l'OMS sur les SSP dans 12 systèmes de santé à revenu élevé en Asie, en Australasie, en Europe et en Amérique du Nord, en y comparant le rendement en fonction du programme de l'OMS. MÉTHODE : Pour chacun des 12 systèmes de santé, un spécialiste des politiques de santé a brossé le tableau des activités politiques liées aux champs d'intérêt de l'OMS : (a) présence ou non d'une couverture universelle, (b) réformes des prestations de services pour créer un système axé sur les SSP, (c) réformes qui intègrent les mesures de santé publique au sein des établissements de SSP et (d) leadership qui favorise le dialogue au sein des intervenants. RÉSULTATS : Après évaluation en fonction des quatre volets de réforme proposés par l'OMS, chacun des 12 systèmes présente des écarts considérables entre le statut réel des SSP et la vision de l'OMS, bien que plusieurs initiatives d'accroissement des SSP y aient été mises en place. Les arrangements institutionnels constituent des obstacles considérables pour la réforme des SSP telle qu'envisagée par l'OMS. CONCLUSIONS : La réforme des SSP nécessite plus d'attention de la part des responsables de politiques. Par ailleurs, le rapport de l'OMS sur les SSP est peut-être trop idéaliste et ne permet pas d'aborder les aspects fondamentaux qui visent une pleine adoption et la mise en œuvre des politiques dans les pays membres.

T hirty years ago there were at most only a handful of political scientists who were interested in or publishing about policy issues in the life sciences, concentrated primarily in the health or environmental policy areas. As a result, political science was notably absent as a discipline either in the literature, at conferences, or as members of state or national commissions, advisory bodies, or institutional review boards involving the life sciences. Although most of the early activity in biopolitics understandably was focused on the evolutionary and behavioral aspects, from the beginning Thomas Wiegele and others believed it was vital to ensure that biopolitics coverage was inclusive and that the policy dimension be a critical component. For that reason, when building the graduate program in biopolitics at Northern Illinois University, Wiegele’s first faculty hire was a policy person. This is also why one of the two articles in the premier issue of the journal was ‘‘Biopolicy: A Restatement of Its Role in Politics and the Life Sciences.’’ In that article, I argued that scholars in all areas of politics and the life sciences had significant contributions to make to biopolicy because they possessed an awareness and appreciation of biological fact and a grasp of the relevant biological issues. Until that time, the enunciation and shaping of issues in the life sciences had come from biological scientists themselves and from the then-emerging bioethics movement. I outlined a range of biopolicy issues at the individual, societal and global levels (see Table 1) and stated that these areas represented but the surface of an extensive array of biopolicy concerns that should be of interest to scholars in biopolitics. In each case, the political ramifications were widespread and complicated and I asserted that a biopolitical perspective would be helpful. I contended then that if we as political scientists were to transcend disciplinary boundaries, it was imperative that our discipline be able to offer life scientists, policy makers, and the interested broader public tangible guidance regarding the policy ramifications of the rapid advances across the life sciences. I also argued that political scientists had a useful perspective as well as substantive knowledge about the political process to offer those in the life sciences. More importantly, fundamental policy questions needed to be addressed on the basis of the unfolding knowledge of the evolutionary foundations of political systems and political behavior, such as whether the current political institutions were capable of dealing with new issues produced by biology. To that end, I argued that we must make clear the policy implications of knowledge gained through biobehavioral research, including a need for expanded time frames for public policy and for more comprehensive, anticipatory assessment of a policy on future generations. Thus, we needed to influence the very framework of policy decision making by infusing biobehavioral knowledge into research on the policy process itself. For good examples of potentially valuable contributions to this new policy framework, see Corning on synergism, Somit and Peterson on democracy, Caldwell on biocracy, and Masters, Flohr, and Losco on bureaucracy, just to cite a few. In summary, I argued for the need for a systematic effort to coordinate and integrate the then-divergent areas of biopolicy research if we were to have any input doi: 10.2990/30_1_52

As is evident from the other articles in this special issue, end-of-life treatment has engendered a vigorous dialogue in the United States over the past few decades because decision making at the end of life raises broad and difficult ethical issues that touch on health professionals, patients, and their families. This concern is exacerbated by the high cost related to the end of life in the U.S. Moreover, in light of demographic patterns, progressively scarce health care resources, and an expanding array of life-saving technologies, decisions at the end of life are becoming problematic matters of public and, thus, scholarly concern in most countries. Issues at the end of life are central not only to bioethics but also raise important ancillary policy dimensions.

Typologies have been central to the comparative turn in public policy and this paper contributes to the debate by assessing the capacity of typologies of health systems to capture the institutional context of health care and to contribute to explaining health policies across countries. Using a recent comparative study of health policy and focusing on the concept of the health care state the paper suggests three things. First, the concept of the health care state holds as a set of ideal types. Second, as such the concept of the health care state provides a useful springboard for analyzing health policy, but one which needs to be complemented by more specific institutional explanations. Third, the concept of the health care state is less applicable to increasingly important, non-medical areas of health policy. Instead, different aspects of institutional context come into play and they can be combined as part of a looser ‘‘organizing framework’’.