How much would you pay for me?

The subject that’s been obsessing me at the moment has nothing to do with my usual rants about grammar and books so please forgive me if I go back to The Unwelcome Guest.

A few weeks ago, the Cancer Drugs Fund in England decided to withdraw a number of drugs that it deemed were not ‘cost-effective’ The Cancer Drugs Fund was set up some years ago  with a budget then of £200 million, to pay for drugs that NICE (The National Institute for Health and Care Excellence) wouldn’t fund) Costs of course have rocketed since, which is why the current decision has been taken.  Among the withdrawn drugs are the one I’m taking  now, and the one I’d hope to move on to next if this current one stops working. I ought to declare now that people still having treatment with these drugs won’t have them withdrawn, and for those living in Wales, as I do, the situation is different; access  has to be argued on an individual basis. – so I’ll be able to continue the treatment which has been keeping me alive and remarkably well for a year. But it raises questions which have been troubling me.

For one thing, the drug I take – and I just looked it up – is fiendishly expensive. But for the cancer I have, this is treatment, not end-of-life palliative care, as the CDF seems to argue some of its withdrawn drugs are. ( though of course that’s important too) And if I hadn’t been able to take it, I might very well not be alive now. Many  cancer sufferers on the forums I read are worried sick about the implications for them.

And my haematologist is as worried and surprised as I am – this decision was passed without consultation with them and without warming.  Surely they should have been given the chance to argue the case about cost-effectiveness?

On the face of it, much of the problem is with the pharmacists, who charge these prices, and in this case are refusing to drop them. They would argue that they need the money for research – and there’s something in that, as ‘my’ two drugs are derivatives of thalidomide,  which has revolutionised the treatment of the cancer I have, but caused horrible tragedies in the past by being rushed out.  But nevertheless something is wrong with their logic.

A  friend of ours with a different cancer which has now recurred, and whose saving drug has also been withdrawn, has managed to ensure treatment because her doctors have hurried the process of application through before the withdrawal date – so these drugs aren’t simply those that affect a few people and rare cases. The chances are that someone you know might be affected too.

Up till now, the NHS has been absolutely marvellous in my treatment – I have no complaints. And I know we’re nowhere near the situation that prevails in the USA where without insurance you die, and even with insurance the companies can quibble over what you’re entitled to. I’m aware of the huge amount of money I’m costing the taxpayers. And I’m not looking for a knee-jerk Oh Frances, of course you’re worth it reaction -I certainly would rather be alive than dead, but I do wonder about the cost of keeping this 73-year old lady going.

In a couple of generations, when they’ve discoved a genetic cure for cancer, the current method of flooding people’s systems with deadly and expensive poisons will seem barbaric in the extreme – and the pharmaceutical companies will have to find other ways of making their huge profits. But this is the situation we’re in at present. I’ve got no answers.  But there are lots and lots of questions. And it does seem wrong that people are now worrying about whether they’re going to be allowed to live that bit longer.