Published 1 October 2008, doi:10.1136/bmj.a1906
Cite this as: BMJ 2008;337:a1906

Observations

Medicine and the Media

Why is the press so nasty to NICE?

The British press has declared open season on NICE, reports Nigel Hawkes

Embattled and almost friendless, the government body charged with assessing the cost effectiveness of drugs is enduring a torrid spell. The National Institute for Health and Clinical Excellence (NICE) has always been controversial, but the torrents of abuse thrown at it in the past two months have set new standards, in volume and in vitriol.

Andrew Dillon, NICE’s chief executive, has been called "Dr Death" and the organisation he runs described as "a bunch of fat cat executives who sit in their plush office playing God." Callous, nasty, terrible, barbaric, and with "a long and devastating history of denying care to those who need it most," NICE has run the gamut of Roget’s Thesaurus as its critics compete for the most damning adjectives the English language can provide. The British national press has run more than 200 stories about NICE since the beginning of August, all but a handful of them critical, some stretching the boundaries of reasonable comment to breaking point.

Is this a conspiracy hatched by the drug industry, stung by the often disobliging judgments of its products made by NICE? Is it a media feeding frenzy, fuelled by ministerial timidity and NICE’s own inability to rebut the criticism effectively? Or has the press actually got it right, despite its shrill and bloodthirsty tone?

NICE’s response has been to argue that rationing is inevitable in any cash limited system—which nobody denies—and that its model for picking winners and losers is the most rational yet designed. But the more that NICE’s bosses appeal to logic, the easier the press finds it to portray them as pointy headed intellectuals who are indifferent to the fate of those their decisions affect.

The row started in August when NICE concluded that four treatments for kidney cancer (sunitinib (Sutent), bevacizumab (Avastin), sorafenib (Nexavar), and temsirolimus (Torisel)) were not cost effective for patients with advanced or metastatic cancer. None are cures, but they can extend life. NICE was also in hot water for refusing to allow patients with rheumatoid arthritis to switch from one anti-tumour necrosis factor drug to another and for taking more than two years to approve ranibizumab (Lucentis) for treating wet macular degeneration—a period, critics asserted, during which 5000 people lost sight that might otherwise have been saved.

The kidney cancer guidance triggered an onslaught. The Daily Mail, whose finger is never far from the trigger when NICE is within range, ran a series of long stories and features, all critical. The Times published a hot headed opinion piece by Jonathan Waxman, professor of oncology at Imperial College, reprised several days later in the Daily Mail. The Sunday Times was the delighted recipient of a letter from 26 oncologists saying: "It just can’t be that everybody else in the world is wrong about access to innovative cancer care and the NHS is right." NICE’s judgments, they said, were "poor" and "unsuitable."

By now the red tops were weighing in. It was Carole Malone, in the News of the World, who called Andrew Dillon "Dr Death." This man, she said, was neither a doctor nor a scientist but a bean counter in a posh suit with the power to tell people to "eff off and die." Perhaps the lowest blow of all was landed by the Conservative party, which alleged that NICE spent more on spin than on assessing drugs, a claim that the Mail gleefully put on its front page and that the Daily Express and Daily Telegraph also published. This claim was based on a wilful misreading of NICE’s accounts—in fact it spends less that 1% of its budget on its press office—but, by then, who cared? It was the glorious 12th, and NICE was a lovely fat grouse rising in front of the eager guns.

Should NICE care? The British press in full cry may not be a pretty sight, but neither can it be dismissed as irrelevant. People read newspapers, and among those people are ministers, who often take them more seriously than do those who write for them. Journalists like having fun, and it is fun to join a baying mob running towards the sound of breaking glass. Few resisted the temptation except the Guardian and the Independent, which offered a cautious defence of NICE all but drowned out by the rest.

Claims that the press chorus was being orchestrated by the drug companies can be dismissed. Of course, the industry dislikes NICE and helps provide arguments to undermine it, either directly or through patients’ groups it helps fund. But in this instance it was a far more dangerous foe, the clinicians, who gave licence to the papers to pursue their quarry. Far more worrying for NICE than the enmity of the industry—which is almost a given—is the concerted opposition of the aforementioned doctors.

Mr Dillon often claims that NICE’s panels are stuffed with clinicians, although it is unknown for any of them to com e forward to defend their decisions. But by deliberately excluding from its panels those with a direct experience of the drug at issue, NICE almost guarantees that any negative decision will be opposed. A politically astute system would seek to incorporate these experts—to make use of their judgment (which is no small thing) and to implicate them with the decisions reached, however unpalatable. A technocratic system, such as that used by NICE, seeks to exclude them on grounds of suspected bias. To make an enemy of the very people who know most about a disease and its treatment is politically naive.

NICE’s claims of scientific objectivity are also undermined by its refusal to come clean about the full details of its economic models. Science should be an open process, transparent to all. NICE’s methods are not, therefore, really scientific but authoritarian. Their authority derives from an economic model that is effectively a "black box" churning out results that nobody else can verify. (This aspect of appraisals is the subject of a legal case brought by the drug company Eisai, which has yet to be finally resolved.)

Finally, NICE’s apparent threshold for approving drugs is, by its own admission, arbitrary. The figure of £30 000 (38 000; $54 000) per quality adjusted life year has no evidential base and has not been changed since NICE was launched nine years ago. If it was right then, it is hopelessly adrift now; if it is right now, it was wrong then. An organisation claiming expertise in economics cannot choose to disregard inflation.

So with a few changes NICE could strengthen its hand. It could also try a bit harder, as it did in its early days, to engage journalists rather than merely responding to them. But the unpalatable fact is that the United Kingdom now spends three times as much (in cash terms) on the NHS as it did in 1997, and yet patients still cannot get the drugs that other systems provide.

Taxpayers find this puzzling. Patients who are dying find it intolerable. NICE pays the price in angry headlines, while ministers sit on their hands.

Cite this as: BMJ 2008;337:a1906

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