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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.

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.

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.

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’’.

There has been considerable research activity in the last few years on gover- nance, especially as it applies to low- and middle-income countries (LMICs). Simultaneously, there has been increased attention to developments in the healthcare systems of South and East Asian countries. This chapter focuses on the role of mixed governance and finance in the emergence of universal health coverage in Japan and three of the so-called tiger countries, Singapore, South Korea, and Taiwan. All have made sweeping changes to their health systems in the last quarter century and forged strong partnerships between private and public stakeholders while maintaining direct budgetary control over healthcare finance.

Healthcare is one of modern society’s most dynamic policy arenas. While the healthcare sector faces many challenges, it is also active in creating innova- tive models of governing institutions, professionals, and services in response to public demands. Heightened pressures for action, such as the global economic crisis and austerity politics, demographic changes, and persisting inequity, resulting in broadly similar approaches to reform, have increased interest in international, transnational, and global health policy. This, in turn, has fostered comparative research.

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Recently, various theories of convergence of health care systems have been presented. This review of several dimensions of health priority setting in nine countries sheds light on the interrelationship between convergence and embeddedness. It reconfirms that within a co-existence of convergence and divergence, there are clusters of convergence, primarily at the ideational and social value levels. However, our findings suggest that the variation across different substantive levels is less clear cut than suggested by others. Moreover, the variation between different procedural aspects of convergence appears more significant. Certain ideas involving the need for rationing, the role of market mechanisms, and cost containment have gained recognition by health policy makers across countries, but this has not guaranteed their adoption. Our analysis demonstrates that despite these signs of a convergence at the conceptual level, policy content and the preferred policy instruments for implementing such policy continue to vary widely across these countries.

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”.

This paper analyses the policy issues surrounding the definition of death within the context of technological and social changes. Increasingly precise brain imaging techniques, combined with demographic trends and heightened health budget pressures, are bound to accentuate calls for redefining death in terms of partial- or higher-brain criteria. In addition to questioning our notions of consciousness and of what human life entails, a shift toward higher-brain definitions of death have critical public policy implications, which must be thoroughly debated. Adding patients in a persistent vegetative state or with end stage Alzheimer's disease to the ranks of the dead raises many difficult questions, for instance, must the NHS or insurers fund continuing care for a legally dead but still breathing patient whose family cannot let go? The implications for disposal of breathing patients who lack brain functions deemed essential to life are substantial. The public is likely to find it difficult to accept burial o...

This brief review of the efficacy, safety, and costs of IVF demonstrates that this procedure has become accepted medical practice without adequate scientific assessment. Its rapid proliferation especially in the market-oriented USA system, has preceded the type of outcomes research that is essential in order to protect both individual patients and the health care system. In addition, concern over the psychological costs borne by the vast majority of women who unsuccessfully pursue pregnancy through these techniques should warrant a level of caution which to date has not been forthcoming. The demand for pregnancy, the organisation of medical specialties surrounding these procedures, the open-ended reimbursement and incentive structure, and powerful market forces make it unlikely that IVF and a whole range of medical technologies can be regulated without some semblance of a national health system. These findings clearly reinforce the themes raised by the Radical Statistics Health Group and illustrate some of the weaknesses of a market approach to medical care.

In this issue of Politics and the Life Sciences, Gurmankin, Sisti, and Caplan report useful original data on the embryo-disposal practices of a good sample of in vitro fertilization (IVF) clinics in the United States. Their paper has important implications for the broadening debate about potential uses of cryopreserved embryos. Since a large proportion of these embryos will never be used for reproductive purposes, the primary choice becomes one of disposal as biological waste material or use in medical, primarily stem-cell, research. Although the authors rightly do not discuss these issues in this short research article, the question of the advisability and acceptability of such directed uses is most timely. Another set of issues raised by the authors relates to consent for disposal and, indirectly, to ownership of "extra" embryos. Clearly, the authors' suggestion for full disclosure of disposal options at time of enrollment is long-since overdue. However, while the majority of clinics include donation-to-research as an option, these data do not clarify the context within which this and other options are presented to patients. What information, if any, is given to patients to help or influence their decisions? I imagine that most patients would choose to "donate" their embryos to research rather than having them destroyed as biological waste after a certain period, if presented with such a choice clearly expressed. Not addressed is why we have so many spare embryos in the first place, given the risks now associated with hyper-stimulating ovaries to increase egg production prior to laparoscopie harvest. This question takes us to another: should American IVF clinics adopt standards and accept regulations similar to those developed by the Human Fertilisation and Embryology Authority in the United Kingdom? Although the advantages would likely be many, as the HFEA appears to be a success in the UK,1 American professional practices will undoubtedly remain disparate and patient experiences inconsistent, making studies of the type published in this issue ever more critical. The authors' contribution ? published onlinebefore-print 9 August 2004 for the third anniversary of George W. Bush's announcement of a federal stemcell research policy ? is especially timely in light of a front-burner debate now heating up American electoral politics. Despite little public understanding of terms or underlying science, distinctions among embryonic and other types of stem cells (i.e., adultderived and umbilical-cord stem cells), differences between therapeutic and reproductive cloning, and distortions of the reality (if not the promise) of stemcell research have become startlingly emotive fixtures of the 2004 presidential campaign, widely referenced by John Kerry, Ron Reagan, and others at the Democratic Convention. As usual when an issue becomes political, rhetoric on all sides tends to blur the facts. While I believe they are mistaken regarding the use of spare embryos, opponents of embryonic stem-cell use are wise to fear the creation of embryos expressly for research purposes, particularly if the more optimistic forecasts of proponents do in fact eventuate. Demand for stem cell sources would then expand rapidly because of huge commercial stakes in research and an ineluctable drive for rapid diffusion of clinical applications. Of two options to meet a burgeoning demand for cell lines, the first, permitting production of human embryos specifically for research, remains highly improbable in the current US political climate. Thus

An alternative approach to that which emphasizes maternal responsibility is to focus on the social responsibility to provide all pregnant women with access to proper nutrition, counseling, mental health and substance abuse services, and adequate general health care. The problem is heightened by the fact that proponents both of women’s rights and fetal rights often try to optimize their position by insisting that the rights they advocate must be absolute. The courts have played and will continue to play a central role in redefining the maternal-fetal relationship. Advances in medical technology and in knowledge of fetal development are rapidly altering this situation. In addition to increasing social recognition of and empathy for the fetus, innovative diagnostic and therapeutic technologies make prenatal injury cases increasingly similar to more conventional liability or injury torts. In contrast, quadrant IV recognizes a claim to fetal rights and the legitimacy of constraining maternal behavior by limiting the scope of her rights.

Despite the Supreme Court ruling in theJohnson Controlscase that fetal protection policies that exclude women from workplaces deemed hazardous to the fetus are in clear violation of the 1978 Pregnancy Discrimination Amendment, the issue of fetal health remains on the policy agenda. This article summarizes the rationale behind fetal protection policies and the current scientific evidence over workplace hazards. It also discusses the disparate court response to these policies beforeJohnson Controlsand the confusing regulatory framework. Finally, it makes a case for including consideration of the paternal contribution to fetal injury in the workplace and calls for a balanced approach to accommodate both women's rights to employment and society's interest in healthy children.

Major alterations in the United States health-care system will be necessary in the coming decades if we are to avert a crisis of immense proportions. Many seemingly unrelated demographic, social, and technological trends in reality constitute a concatenation that promises to accentuate traditional dilemmas in medical policy making. The aging population, the proliferation of high-cost biomedical technologies designed primarily to prolong life, conventional retroactive reimbursement schemes by third-party payers, and the realization that health-care costs are outstripping society’s perceived ability to pay all lead to pressures for expanded public action. At the same time, social institutions appear both unable and unwilling to make the difficult decisions in this area traditionally viewed as outside the public arena.

Despite all the recent controversy, rationing has always been a part of medical decision making. Figure I presents a spectrum of ways in which health care can be rationed. Whether imposed by a market system in which price determines access, a triage system where care is distributed on the basis of need defined largely by the medical community, or a queue system in which time and the waiting process become the major rationing device, medical resources have always been distributed according to criteria that contain varying degrees of subjectivity. In almost all instances, rationing criteria are grounded in a particular value context that results in an inequitable distribution of resources based on social as well as strictly medical considerations. In addition to illustrating the range of rationing options for health care, Figure I introduces yet another complexion in defining the concept. Some forms of rationing infer or necessitate government involvement, either direct or indirect, while others fail to distinguish between private and public sector choices. This distinction is critical to a clarification of how current health care options differ from past ones. Less explicit forms of rationing toward the top of the figure are no longer sufficient to resolve health care dilemmas in this era. As a result, we are now witnessing a shift toward the bottom end of the spectrum, possibly culminating in a central role for the government in the rationing of increasingly scarce medical resources. Although explicit rationing under the authority of the government is but one form of rationing, there appear to be many forces that, concurrently, are moving American society in that direction. At the same time, however, explicit public rationing is feared by some observers, who suggest that rationing is unnecessary or an anathema to be avoided at all costs.1

Tom Wiegele will be sorely missed by all who knew him. No single person had more influence on my career than Tom. My first contact with him came in 1979 when he telephoned me to express his interest in my work in genetic technology and to invite me to serve as a discussant on a panel he was chairing. His sincere interest in my work was most welcome at that point and hastened my transition to biopolitical research.

Science-based biotechnology is now introducing fundamental changes in the status of life on earth which have major implications for human society, yet the social sciences are largely failing to address these changes. Biotechnology offers immense opportunities for advancing the quality of human life, holding promise for overcoming numerous and heretofore intractable causes of suffering and impoverishment. Moreover, it may enable mankind to enjoy the benefits of science without degradation of the biosphere. But to obtain these advantages biotechnology must be guided by wise and timely public policies. Even the most beneficent innovation may create problems that, unless anticipated and prevented, may offset or cancel out social gains.

The rapidly increasing knowledge of genetics is leading to many beneficial uses in the fields of diagnosis and therapeutics. The ability to manipulate the human genome does, however, raise many ethical issues and policy dilemmas. The advances are moving us rapidly towards a world in which human features and facilities might be altered almost at will. Although now largely speculative because of the uncertainty of the extent of genetic intervention that will be technically possible, we can ill afford to ignore the long- term implications of these developments.

As rapid advances in human genetic research are transferred into new areas of genetic technology, questions relating to the use of these techniques will escalate. This paper examines some of the policy concerns surrounding recent developments in genetic screening. It discusses the impetus and implications of genetic screening in general, examines various applications, and analyzes the costs and benefits of screening programs currently in existence. Special emphasis is placed on whether or not screening should be considered a matter of public health and mandated on those grounds. This paper argues against any compulsory screening programs except where the disease is easily identified, applicable across social groups, and treatable. While screening services for carriers of genetic disease and prenatal diagnosis should be made available and education programs should be expanded substantially, the burden of proof for involuntary programs is placed on the proponents. There is little public health justification at this time for mandatory screening though this does not preclude future public health demands. It is argued that the goals and justification of various human genetic technologies must be examined at this time due to the rapid advancement of the research as well as the ultimate benefits promised for humankind.Policy issues associated with different forms of genetic screening--prenatal diagnosis, phenylketonuria screening in newborns, and carrier screening programs--are examined. Criteria are suggested for cost-benefit analyses of proposed programs, and data from available studies on some genetic defects are provided. The author sees little public health justification at this time for mandatory screening; he argues against any compulsory screening programs except where the disease is easily identified and treatable. Moreover, mandatory programs should never be considered unless voluntary trial programs have proved to be socially and technically feasible.