Standing up for NICE

How do we decide which drugs should be made available on the NHS for cancer patients?

It sounds easy. We should pay for any drugs for cancer patients that can help them. And the patients’ doctors are best placed to decide that question.

To repeat an old mantra, it’s a bit more complicated than that. Firstly, what do we mean by help? Some drugs cure cancer, some ease the pain of cancer, some delay the spread of cancer. Some work for certain patients but not for others. Some may extend life by up to five years; others by a few days or weeks. Some have deeply unpleasant side effects, like severe nausea or exhaustion.

Some drugs are used for years, but turn out after further study to be useless, or even harmful. I can think of a number of drugs that PR agencies have promoted to me over my years in medical journalism, which were quietly dropped after the full research evidence was in.

And about these doctors who are to decide whether the drugs are likely to be helpful. That’s fine if your oncologist is the best in the country, up to date with all the latest research, able to make fine decisions about pain relief versus life extension. Not so fine if he or she is getting ready to retire, has eased back on reading journals and hasn’t been to a conference in years.

Perhaps the situation is even worse if he or she has been seized with enthusiasm for an experimental new treatment, and is desperate to try it on every patient who crosses the threshold, regardless of suitability. Doctors are, after all, only human.

Decisions about new drugs used to  be made locally, by Health Authority prescribing committees. All around the country, local doctors, tempered by the great and good, would assess the reports that came their way about new drugs due to be licensed. And they’d talk it over and make their decisions. The decisions would largely depend on who was on the committee. If you had a keen cardiologist on the committee, you’d have a better chance of local approval for a new cardiac drug than a new cancer drug.

This led to a familiar tabloid story: Mum of four could get life-saving drug X if she lived on the other side of the road, which came under the neighbouring health authority. It was called postcode prescribing; it was deeply unfair, and it wasted an enormous amount of time and money.

One of the canniest things Labour ever did was set up the National Institute for Clinical Excellence (NICE), later renamed the National Institute for Health and Clinical Excellence (still NICE, so as not to ruin a good acronym). NICE was charged with making the difficult decisions that politicians didn’t want to be blamed for themselves, about which treatments should be made available on the NHS.

NICE set up a system to gather the best possible evidence. Once they’ve been asked to look at a treatment, they take evidence from the manufacturers, from doctors with experience of using it, from representatives of patient groups. They weigh up all the clinical evidence they can get their hands on, and produce a draft report. People are invited to respond to the report. (You can tell when this happens, because the front page of the Express says: ‘Now NICE wants to murder babies by banning drug X’). The responses to the report are considered by the committee and a final report written. This is published, and interested parties have the chance to appeal against it. Finally, a guideline is published, making a recommendation about the use of the drug. A recommendation. Which the government is free to reject, although they almost never do so.

You can argue about whether they get it right all the time (almost certainly not) or whether their assessments could be speeded up, made more transparent, or whether the process could be improved. But I don’t think you can say it’s not an improvement on the previous system. The systematic appraisal of the evidence, by experts in the field, tempered by experience and advice from those who know about the condition, shows a fully adult way of approaching some hellishly difficult choices.

And yes, of course it’s about the money. The money spent on new drugs is money that can’t be spent elsewhere, perhaps on established treatments that we know work well. Do we employ fewer midwives, or shut an A&E department, to pay for a drug that might give another few weeks of life to, say, 500 people a year? Horrible, difficult decisions. If it was me needing the drug, or worse still someone I love, I wouldn’t give a monkeys for the midwives. But someone should.

Which makes it hard to understand why NICE has been so under fire of late. It’s been the subject of at least two completely false tabloid newspaper stories in the last couple of months (in the Mail and the Express, links go to NICE’s letters of complaint). David Cameron, in the first leaders’ debate, made dark references to people with renal cancer being refused the drug Sutent. Sutent was approved for use in renal cancer by NICE in 2009.

This shouldn’t be a party political issue. This country has a budget crisis. We don’t have unlimited funds for the NHS, if we ever did. It is more important than ever that we spend that money well. NICE deserves the thanks of all politicians for doing its difficult, unpopular job so well. And, believe it or not, it deserves patients’ thanks too, for trying to ensure the hardest decisions are made fairly, impartially, and with a genuine concern for doing the most possible good with every NHS pound spent.

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One comment

  1. […] had the sense to hand the whole can of worms over to the experts, who did a fine job, despite all the ordure thrown their […]

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