The National Institute for Health and Care Excellence, the UK’s main healthcare priority-setting body, recently reaffirmed a longstanding claim that in recommending technologies to the National Health Service it cannot apply the ‘rule of rescue’. This paper explores this claim by identifying key characteristics of the rule and establishing to what extent these are also features of NICE’s approach to evaluating ultra-orphan drugs through its highly specialised technologies programme. It argues that although NICE in all likelihood does not act because (...) of the rule in prioritising these drugs, its actions in relation to HSTs are nevertheless in accordance with the rule and are not explained by the full articulation of any alternative set of rationales. That is, though NICE implies that its approach to HSTs is not motivated by the rule of rescue, it is not explicit about what else might justify this approach given NICE’s general concern with overall population need and value for money. As such, given NICE’s reliance on notions of procedural justice and its commitment to making the reasons for its priority-setting decisions public, the paper concludes that NICE’s claim to reject the rule is unhelpful and that NICE does not currently meet its own definition of a fair and transparent decision-maker. (shrink)

The prospect of rescuing a person in immediate peril seems at first glance to be an unqualified good. Take, for example, the events of April 15, 2013, at the 117th Boston Marathon. Two consecutive...

This article is about the justifiability of accepting worse cost effectiveness for orphan drugs, that is, treatments for rare diseases, in a publicly financed health care system. Recently, three arguments have been presented that may be used in favour of exceptionally advantageous economic terms for orphan drugs. These arguments share the common feature of all referring to considerations of justice or fairness: the argument of the irrelevance of group size, the argument from the principle of need, and the argument of (...) identifiability. It is argued that all of these arguments fail to support the conclusion that orphan drugs should be subsidized to a larger extent than treatments for common diseases. The argument of the irrelevance fails to distinguish between directly and indirectly relevant considerations of fairness or justice. The recent attempt to revive the moral relevance of identifiability has provided no novel reasons to think that identifiability is morally relevant in itself or due to considerations of fairness and justice. The argument from the principle of need does not fail due to any inherent flaw in the principle as such. Rather, this principle can be interpreted in different ways, and none of these interpretations support exceptionally advantageous terms economically for treating rare diseases specifically. It is concluded that we are awaiting justice based reasons for the preferential treatment of orphan drugs. (shrink)

The dominant rule of economic evaluation within health care posits that resources are distributed in order to maximize health benefit. There are instances, however, where the public has demonstrated that they do not prefer such an allocation scheme, particularly in the context of life-saving interventions. Objectives Deviations from preferences of maximizing health benefit have important implications on both financial and distributive levels. This study sought to specify the circumstances in which respondent preferences are inconsistent with maximizing health benefit. Methods Ninety (...) respondents recruited from the London School of Economics and Political Science completed a questionnaire comprised of a series of paired profiles involving various combinations of life-saving or quality-of-life enhancing interventions. Results The results indicate that saving a life holds value beyond that captured by traditional health benefit measurement and that the value of saving a life is not consistent across ages. More specifically, the value of saving a life was age-dependent and markedly attenuated for older-age patients. Conclusions Many respondents were willing to overlook maximizing health benefit in order to rescue a life in immediate peril, and showed a diminished sense of moral imperative to rescue older-age patients. In light of difficulties related to the implementation of larger-scale policies incorporating Rule of Rescue concerns, the most realistic approaches will likely involve adopting smaller-scale policies that address issues such as do not resuscitate (DNRs) and living wills. Potential policy solutions such as age or monetary thresholds for life-saving interventions may be favoured in a research context; however, their overall social feasibility is questionable. (shrink)