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NICE: a terrible beauty

NICE (the National Institute for Health and Care Excellence) is one of the many arms-length bodies set up by the last Labour government – and one of the few to have survived. In the health sector it is almost the only one to have reached the present day with its original remit intact.

It has done so despite living much of its life in ferment. NICE has been accused of everything from being ‘a death panel’ – by denying people potentially life-saving treatment – to being one of Britain’s greatest cultural exports – countries around the world have sought to learn lessons from NICE as they seek to introduce health technology assessment and guidelines.

That has made an outline of NICE’s history – its origins, creation and controversies – worth recording; something that John Appleby, Sir Michael Rawlins (its chairman for 13 years) and I have done, under the title A Terrible Beauty.

Terrible because it has been, for those denied treatments that failed to cross NICE’s threshold for cost effectiveness. Terrible too, for those in the life sciences industry who spent time and effort producing new products only to find the price set by their employers was too high – for whatever reason – for NICE to approve.

But it has also been a beauty, in the way that, over the past 16 years, it has sought to balance an essentially unequal equation. Its elements include the interest of the taxpayer in the NHS being cost-effective. The interests of individual patients who, when not paying themselves, have little personal interest in cost-effectiveness – but who do nonetheless have a longer term interest (along with that of other taxpayers) in avoiding situations in which the cost _in_effective drives out the cost effective. The interests of clinicians who generally welcome guidance but detest instruction. They are often – although not always – only too pleased to have someone else take on the difficult decisions about what should and should not be funded. And the interests of the life sciences industry – particularly the pharmaceutical industry – which needs a market for its products that will encourage not just innovation, but genuinely ground-breaking and worthwhile innovation, while providing the best possible return on its investment. And all the while, NICE has spared the politicians from having to make these difficult and sometimes heart-rending decisions.

NICE has done this not just by number crunching the cost-effectiveness issues, but also by applying a declared set of social values to the recommendations it eventually makes. And it has sought to operate by clinging to a set of principles: that it will be robust, inclusive, transparent, independent and contestable – allowing everyone, as Sir Michael Rawlins has put it ‘to have their say, although not necessarily their way’.

Some events have undermined NICE’s operations – most notably the Cancer Drugs Fund that Prime Minister David Cameron set up in 2010, which pays for cancer drugs that NICE has judged too costly to be cost-effective. This fund has become more mainstream in the funding of cancer treatments than was ever intended. It has repeatedly exceeded its budget. And it is a solution that pretty much everyone – including the pharmaceutical industry – has come to regard as broken.

NHS England has now produced its proposals for revamping it – retaining the name, but putting the decision about which cancer drugs will and will not be funded back into the hands of NICE. As ever, this is controversial, and there is a fair bit of detail still to be worked out before the new approach goes live in July. One thing this revised approach may succeed in doing, however, is providing better evidence for drugs’ effectiveness or otherwise – something the Cancer Drugs Fund has failed to do – in those future cases where NICE says that more data is needed in order to provide a definitive ‘yes’ or ‘no’ on funding.

Meanwhile, NICE – like all the other arms-length bodies in the health sector, including the Department of Health itself – faces a cut of 25 to 30 per cent in its running costs. So it is likely to have to shrink or surrender some of its myriad activities, which have grown appreciably over the years. It is used to surviving in challenging times, and has, over the years, rarely been far from controversy. However the next year or two, and how the revised Cancer Drugs Fund plays out in practice, could be defining. So its history – why it was established in the first place, what it has done and why – is worth revisiting.