A utilitarian UK healthcare system
A rational healthcare system can be defined as one that tries to best meet the healthcare needs of the population with the resources available. According to utilitarian theory, this attempt is made by reducing the maximum amount of health-related suffering and increasing the maximum amount of health-related happiness per unit of currency spent. In the UK, this is measured by quality adjusted life years (QALYs), and the National Institute for Health and Care Excellence (NICE) has, in the past, attempted to maximise QALYs per GBP (£) by only funding drugs at a maximum cost of £30,000 per QALY, which are thus considered a cost-effective use of NHS resources. Although the system was imperfect, it was broadly utilitarian.
Recently there have been several changes to policy that reduce the number of QALYs gained per GBP spent. These changes are not necessarily counter-utilitarian, if they identify some element of the QALY-based measurement that does not accurately reflect reduction in suffering or increase in happiness. For example, the introduction of end-of-life criteria (to fund drugs that gave small benefits to patients with very short life expectancy) reflected that there were potentially additional benefits to extending life in terminally ill patients that increased happiness not captured in the QALY system. These could include; allowing individuals to get their affairs in order, saying their goodbyes, or taking a final holiday with loved ones. Hence, treatments were reimbursed up to £50,000 per QALY if they met the end-of-life criteria shown in Table 1.
Table 1: Summary of HST, CDF, and end-of-life criteria for drug reimbursement
CDF, Cancer Drugs Fund; EoL, end-of-life; HST, Highly Specialised Technology; QALY, quality adjusted life years
Similar to end-of-life, the introduction of the Cancer Drugs Fund (CDF) reflects that QALYs gained from severe diseases such as cancer might be of more importance than treatments with comparable QALY increases for less severe diseases. Hence the CDF allows preliminary acceptance of cancer drugs with a lower level of certainty as to cost-effectiveness, as shown in Table 1. Both these policy changes are arguably still utilitarian if it can be shown that they modify the cost per QALY system to more accurately reflect the utility (i.e. ability to reduce suffering and increase happiness) of treatments.
Introduction of egalitarian policy into healthcare: Highly Specialised Technology programme
Another alteration to NHS policy, the Highly Specialised Technology (HST) programme, ascribes to a different ethical philosophy known as egalitarianism, which affirms that no individual should be abandoned purely because their treatment is not a cost-effective use of resources. This code of ethics is firmly counter-utilitarian, and is particularly relevant for rare diseases, where the small populations and lesser understanding of the disease engender riskier drug development, more expensive clinical trials, and fewer patients to spread the costs over. Thus, very rare diseases are highly unlikely to be cost-effective at £20,000-£30,000 cut-off currently used by NICE, requiring a much higher threshold (Table 1), and policy makers must decide whether to abandon people in favour of maximum utility or sacrifice efficiency in favour of equity.
Before making these policy adjustments, the NICE policy is to consult a Citizens Council of around 30 individuals whom are deemed to be representative of the UK population. While this small sample might potentially be biased by more persuasive individuals and not reflect the feelings of the majority, the system reflects the assumption that community values should play a role in healthcare policy.
Aims and methods of the literature review
This review aims to discuss firstly whether community values do reflect these recent policy changes, and secondly whether community values should be considered.
PubMed, Embase, International Society For Pharmacoeconomics and Outcomes Research (ISPOR), Office of Health Economics (OHE), EconLit, NICE, and Health Technology Assessment international (HTAi) were searched for all literature assessing public opinion toward the ethics of drug reimbursement. The search terms combined “ethic*” or “util*” with “health care”, “end-of-life”, “NICE”, “CDF”, “HST”, “orphan”, or “HTA”.
Results of literature review: societal preference studies
Three main studies were identified containing original data on community values. Desser et al. (2010) conducted a survey of 1,547 people, asking how they would allocate funds between a rare disease and a common disease; firstly, if they could only choose one, and secondly if they could allocate more to one disease than the other. Their results are shown in Figure 1A and B.
Figure 1: Percentage of respondents allocating resources to rare diseases under different conditions
The key shows which disease respondents showed preference for. In A, respondents could either choose the rare disease, the common disease, or suggest they had no preference (indifferent). In B, respondents could choose to show preferential resource allocation toward a rare disease, common disease, or equal resource allocation to both
Importantly, under neither scenario do most people specifically value rarity, as in all cases the lowest percentage of people allocated resources preferentially to the rare disease, even when they were at equal cost. When the rare disease costed more – indicative that money spent on it will result in fewer lives saved – under 50% of people chose to favour the common disease in each scenario, suggesting that most people prefer equity over utility.
Another study by Linley et al. (2013) examined whether individuals would prioritise cancer, end-of-life, or rare diseases, compared with their respective opposites (non-cancer, non-end-of-life, and common diseases). Their findings, shown in Figure 2, demonstrate that the sample placed no specific value on treatments for end-of-life, cancer, or rare diseases, with most individuals in each case selecting equal allocation of resources, if all else was equal. The only societal preferences under these conditions were for severe rather than moderate diseases; treating diseases with no other treatments available rather than ones with multiple other treatments available; or treating diseases where patients are more reliant upon carers. In each case, an argument could be made for additional utility that is not captured by QALYs, consistent with a utilitarian health policy.
Figure 2: Value placed on treatments for cancer, end-of-life, or rare diseases, compared with their respective opposites (non-cancer, non-end-of-life, and common diseases)
Interestingly, for cancer and end-of-life treatments, if the treatment was known to have a smaller effect (than non-cancer and non-end-of-life, respectively), the most common selection was still equal allocation of resources, while if the treatment was twice the cost then it was most commonly prioritised. This suggests that, as was the case in the study by Desser et al. (2010), the sample favoured equity over utility.
Patients with rare diseases were more likely to be deprioritised than any other scenario tested when all else was equal, and the most common selection was deprioritisation if the treatments were costlier or less effective. However, when it was twice as costly, more people (61.7%) still selected to either prioritise or distribute resources equally, suggesting that they favoured equity over utility. Thus, in all three scenarios (cancer, end-of-life, and rare disease), as well as in disadvantaged populations and children, people ascribed no specific value to the group, but were willing to sacrifice utility in favour of equal treatment to both groups.
Consistently, in another study by Ubel et al. (1996), 568 respondents were asked if they would favour a disease test that was cheap enough to distribute to the whole population or a more effective test priced so that it could only be distributed to 50% of the population, when the latter would save more lives. Perhaps remarkably, even though the test would be randomly distributed, 56% of the general public, 53% of medical ethicists, and 41% of medical decision makers chose the cheap test, suggesting a societal preference for equity over utility. When asked to explain their reasoning, 66% of respondents who chose the cheap test cited fairness as the reason.
The results of this literature review suggest that a small but consistent majority of people would prefer an egalitarian over a utilitarian healthcare policy. This suggests that the HST programme is justified by societal preference. Similarly, while these studies suggested people placed no value on the additional utility (uncaptured by QALYs) associated with end-of-life treatments, there would be a societal preference for treating these terminal patients providing they were more expensive to treat, as was the case with cancer. Thus, end-of-life criteria and the CDF cannot be justified as utilitarian policy modifications, but can be justified as a switch to a more egalitarian policy.
Desser, A. S., D. Gyrd-Hansen, J. A. Olsen, et al. (2010). Societal views on orphan drugs: cross sectional survey of Norwegians aged 40 to 67. Bmj 341 c4715.
Linley, W. G. and D. A. Hughes (2013). Societal views on NICE, cancer drugs fund and value-based pricing criteria for prioritising medicines: a cross-sectional survey of 4118 adults in Great Britain. Health Econ 22(8) 948-964.
Ubel, P. A., M. L. DeKay, J. Baron, et al. (1996). Cost-effectiveness analysis in a setting of budget constraints-is it equitable? N Engl J Med 334(18) 1174-1177.