Academic journal article Health Sociology Review

The Dark Side of Hope and Trust: Constructed Expectations and the Value-for-Money Regulation of New Medicines

Academic journal article Health Sociology Review

The Dark Side of Hope and Trust: Constructed Expectations and the Value-for-Money Regulation of New Medicines

Article excerpt

Pharmaceutical and other new medical technologies render an expanding domain of human problems remediable via medical solutions (Williams, Gabe, & Davis, 2008), with much talk of 'breakthroughs, advances, future visions, progress and great leaps forward' (Brown & Webster, 2004, p. 181). The hope these technologies represent, in mitigating the risks of morbidity and mortality for people with certain chronic or more acute conditions, has been extended to entire populations (in the spirit of the Enlightenment) through welfare states. The National Health Service (NHS) seeks to ensure that all UK citizens have access to effective, innovative medication.

The importance of this hope for sick individuals (Simpson, 2004), alongside its promotion of social solidarity (Rorty, 2002) and meeting of recently assumed 'rights to health' (Abraham & Lewis, 2002), engenders severe political consequences (legitimation and motivational crises) where elements of society are marginalised from these positive expectations. The politicisation of a 'postcode lottery' in the mid-1990s, where the access of UK citizens to high quality and/or novel health technologies was seen to vary considerably (Calman & Hine, 1995), was accordingly significant in the inauguration of a National Institute for Health and Clinical Excellence (NICE) in 1999. Amongst other functions, including the development of clinical guidelines, NICE's role in deciding which new technologies will be made available through the NHS (in England and Wales) has become its most visible and contested.

Technological appraisals carried out by NICE fulfil a regulatory function: firstly in ascertaining the cost-effectiveness of certain expensive pharmaceutical products bought by the NHS, and thus limiting the potential dysfunctions of the market by enabling an efficient use of resources (Crinson, 2004); secondly in assuring the right of access to expensive drugs (deemed cost- effective) to patients across the entire NHS, in that local health authorities (Primary Care Trusts) are legally obliged to fund products recommended by NICE as costeffective (NICE, 2009a). Drug appraisals apply complex economic modelling techniques to pharmaceutical trial data to ascertain the cost per quality adjusted life year (QALY) of a particular drug, ratifying drugs which cost less than £20-30,000 per QALY (NICE, 2009b). This process has come under increasing scrutiny over recent years - both domestically and internationally. Reactions within the US, for example, mark the broad spectrum of viewpoints towards NICE - from a 'model of cost-containment' (Of NICE and men, 2009) to an Orwellian 'death panel' within critiques of Obama's health reforms (Brown & Calnan, 2010). Both perspectives can be seen as invoking notions of hope (in its broader sense) - hope in regulation to ensure the financial durability of health insurance systems, or in the dashing of hopes for access to certain treatments as a result of NICE decisions.

Thus is the starting point of this article - which will explore aspects of the political and economic influence asserted through 'hope' and its leverage on the regulating capabilities of NICE. Firstly the regulatory innovation represented by NICE will be outlined. Its function of 'absorbing' uncertainty (Habermas, 1976) while facing the heightened politicization of its decision-making correspondingly generates legitimacy challenges1 from multiple actors (Crinson, 2004). It is in such a polycentric regulatory regime (Black, 2008), grappling with uncertainty, that the power of hope becomes apparent. A conceptualization of hope, as a coping mechanism for uncertainty, will be developed as ideological, affective and liable to lapse into trust. The ramifications of these facets of hope, and their mobilisation, are then illustrated within recent cases of NICE medicine appraisals, especially regarding medication for Alzheimer's disease and breast cancer. The paper concludes in considering the potential impact of modifications to NICE's role. …

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