Assessment of Public Opinion Regarding The Ethics of Nice CDF, HST, and End-of-Life Criteria for Drug Reimbursement

Abstract

NICE have never fully ascribed to utilitarianism (producing maximum QALYs on a fixed budget) or egalitarianism (providing adequate healthcare for people with all maladies) for drug appraisals. End-of-life treatments may add value (uncaptured by QALYs) through giving individuals time to make arrangements for death, making the policy arguably utilitarian. The Cancer Drugs Fund (CDF) places value on cancer treatments, which is arguably egalitarian if they are neglected, or possibly political. The recent introduction of Highly Specialised Technologies (HST) reduces national QALYs gained in favour of treating rare diseases, suggesting an egalitarian shift. This review assesses the public support for such policies. Global review of public opinion on ethical drug reimbursement. Databases included PubMed, Embase, ISPOR, OHE, EconLit, NICE, and HTAi. Search terms combined “ethic*”and “util*” with “health care”, “end-of-life”, “NICE”, “CDF”, “HST”, “orphan”, and “HTA”. Eighteen relevant sources were identified. In one, 20 out of 27 citizen’s council members agreed paying premium prices for ultra-orphan treatments was sometimes or always necessary. Similarly, a larger study of 568 individuals showed 56% of respondents and 41% of medical decision makers favoured equity in healthcare over maximising utility. Another survey of 1,547 individuals splitting expenditure between common diseases and costly rare ones found 42.3% favoured an even split, with 23.5% favouring rare diseases, which decreased to 10.5% if costs were equal. Consistently, a study of 4,118 individuals found that while most respondents did not prioritise disease rarity, cancer, or end-of-life, there was a tendency across these factors to favour the more expensive option. Despite a paucity of data, public opinion does not necessarily support NICE’s CDF, HST, and end-of-life. While some studies showed additional value applied to disease rarity, this might simply reflect willingness to pay more for treatments that cost more, regardless of disease prevalence.