It’s almost exactly 10 years since I lost my father to bowel cancer at the age of 73 and almost a year to the day that Matthew’s grandfather, who I loved as my own, died of the same disease at the grand age of 98. The latter fought the illness for five years, a great feat at his time of life and whilst caring for his wife. My father died less than three months after diagnosis, after what had appeared to be a successful operation which had removed the tumour. In fact he was killed by a rare side effect to the chemotherapy that should have ensured his medium term survival, a side effect which was missed until it was too late, because he had the temerity to fall ill on a Friday lunchtime, meaning that he was not seen by a specialist for three days.
So you might think I’d be squarely behind the campaign to make Avastin more freely available on the NHS. The truth is that I really don’t know what the answer is to the ever-increasing numbers of expensive drugs that may or may not increase the quality and/or quantity of life by various lengths of time.
How much extra time should a drug give you to be worth it? Does the quality of that life matter? Is it really at any cost? If a drug cost a million pounds and extended your life by a day, should the NHS pay for it? I suspect everyone would say no. Similarly if a drug costing £10 gave five years extra life, no-one would expect the NHS to refuse. By definition, benefit-cost ratios will ignore non-monetised impacts. The precise definitions of costs and benefits will vary, depending to some extent on who is paying and who is benefiting. And whilst there are many ways to overcome these issues, by combining BCRs with information about non-monetised impacts, there is no agreement as to the benefit cost ratio acceptable to a) the public purse and b) the public emotions. And whilst the former can be easily quantified, no one is clear where the acceptable value lies.
The tabloids have been typically, well tabloid, about Avastin and similar drugs, claiming that sufferers are being doomed to an early death and could live many more happy years with the help of the drug. They point out that many northern European countries prescribe the drug – countries which pay far more tax into their health and social systems than UK taxpayers have ever been able to stomach. But in pursuing this populism, they have ignored thefact that spending public money should always be driven by objectivity. Anecdotes do not make meaningful statistics, nor should policy be driven by the attractiveness or otherwise of images.
The anecdote is the tabloids’ favourite tool. Every day they fill their pages with the human equivalents of fluffy kittens vs snarling dogs. But their misuse of the uplifting stories of a tiny number of cancer survivors is at best spreading false hope and at worst deliberately deceitful. The story of Barbara Moss, a bowel cancer sufferer who has survived for 45 months since buying her own course of Avastin, was carried not only by the Daily Mail, but also the Guardian, Telegraph and BBC News.
I am delighted that Mrs Moss has survived so long and sorry that she has had to borrow money to fund her treatment. But the unvarnished truth is that controlled clinical trials show that Bevacizumab (the generic name for Avastin) extends the average period of survival from bowel cancer from 19.9 months to 21.3 months, or about 6 weeks. As that’s an average, some people will live much longer, some will die far earlier. I don’t know the spread found in the trial , but it’s not impossible that a few people lived for double the average, as Mrs Moss has done. That doesn’t mean that everyone will, or that most people will.
I have no doubt that if my husband, daughter, mother or friend was diagnosed with a terminal illness and I believed that there was a ‘wonder drug’ that would keep them with me for just one more day, week or month, then I would want them to get that drug. If I was told I had just months to live a year before my daughter’s graduation or wedding, I’d do anything to make sure I was there to share the say with her. But in the cold light of day I would know that this would leave less money in the NHS to pay for many other treatments, perhaps the screening and early intervention that would save others from needing such an expensive drug at all.
Making life and death decisions is always going to be desperately difficult. No-one wants to be in the position of playing God and few politicians want to upset the readers of the Daily Mail. But as the electorate press for for honesty from their politicians, it has to mean more than a few expenses forms. We must demand that they tell us the truth on the hard decisions they have to make too.
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02 September 2010, 2:34 am
What does need doing is looking at the outrageous profits pharma companies make – 35% margin is not unusual. The production costs of the drugs are tiny – research costs are high – higher than they need to be probably but the horror is the advertising spend – why allow promotion at all – evidence based information from an independent 3rd party should be enough – that would make all drugs much more affordable.
I think it is likely the Moss case study was in so many papers was connected to the very high PR spend of these companies – they know this sort of story causes the unsuspecting public to bring pressure to bear on the nhs.
The power of the drug companies to sell drugs rather than encourage prevention and the commercial presure there is on us to buy food and live lives that increase the chance of diseases like bowel can disguise the fact that there are ways to help the Moss’s of this world live much longer – by preventing the disease occuring in the first place – but that does not make profits for drug companies or anyone else.