I was going to preface this blog post by saying ‘I am a ‘Carer’ and my husband’s prognosis is very bleak indeed …’ However, I have several problems with that. One is that the term ‘carer’ is not a term which fits me well because it suggests a stage of dependency which my husband has not reached and, as far as he is concerned, will not reach - ever. And the other problems? I am not prepared to go into those; suffice it to say I have been keeping an eye on the probable future and it terrifies me beyond thought and comprehension.
So here is the scene: The Hounds have been enjoying the snow (it has been a good winter for skiers and snow-loving hounds) and they are gently snoring. The whole household is exhausted – a great deal of time has been spent tracking down, fruitlessly, the missing mobile phone which has certainly found its way to sunnier climes – we suspect Cuba, via Stockholm. However, we have discovered that we have inadvertently been using the ‘i-tunes’ ‘back-up and restore’ facility and so all is well, and Our Hero’s new phone is, almost, ‘restored’ to health.
Our Hero is waiting to hear from the ‘new’ oncologist to find out whether there has been any adjustment to the treatment ‘plan’ – which is really no plan at all.
There has been not a sound from that quarter.
We suspect that we have been duped – it is all just a way of making us accept the inevitable – that there is no treatment any more on the NHS except …except for the clinical trial.
Now, I know that there will be some of you out there who desperately want to be on a clinical trial – any clinical trial – particularly if you have got to the end of the road as far as treatment is concerned.
And wouldn’t we all, in that situation?
Which gets us to the gist of this – which is a question of medical ethics. One of the trials which Our Hero may be offered has already been extensively trialled for lung cancer – with variable success. The huge company who make this drug have,interestingly, changed the name of the drug. Our Hero is, according to the medics, dying but, because he did respond so well to chemo, and he is relatively young, he is a very much better subject than someone older and more compromised physically. (Better results, don’t you think?) It would probably be a Phase II trial which only requires – if you are a lucky researcher and can find enough people who have the ‘right’ kind of cancer in your area – about a hundred ‘patients.’ Then the trial will move onto Phase III – which will be a much larger study.
We have both ethical and logistical problems with this. Any discussion with the oncologist who is doing the research will involve a hundred mile round trip and, therefore, a great deal of our time, and not inconsiderable expense. It will, we assume, be a ‘double blind’ trial, so Our Hero may well be getting a placebo. We might, therefore, be both out of pocket and, much, much more importantly, very much out of time.
When I have mentioned the ethics of all this to one of the many oncologists we have seen, I have been told ‘that someone has to do it, how can we develop drugs, otherwise?' After all, we are assured, it can only be done with ‘informed consent.’
But the question must arise, how can you get ‘informed consent’ from those who are, undoubtably, one of the most vulnerable groups of human beings you can ever encounter– the terminally ill? How ‘informed’ and rational is any ‘consent’ going to be?
Forgive me for being cynical, but the question must be asked: who is going to benefit from this most? Does the word ‘exploitation’ not spring to mind?
And before any of you get on your high horses and talk about altruism, and how wonderful it might be for others suffering from cancer in the future, just let me remind you about the position of these global drug companies: they are not doing business for the greater benefit of mankind – they are doing it for money. If they were altruistic, they would be giving away their drugs for HIV in developing countries; they would be tackling malaria … (and, Wise Old Cynic, if you read this, for TB) and so on.
We are not talking here of anything which could be revolutionary like dendritic cell therapy which might trigger a targetted immune response against a specific cancer - a wonder vaccine - we are just talking about another sort of chemo which has already been trialled on another sort of cancer. And, as most of us know, some chemotherapy drugs which pass through all the clinical trials are not even remotely guaranteed to be effective – something we had not realized until Our Hero was through his third cycle and had ‘responded well.’ At the time, our oncologist’s delight bemused us – we had had no inkling that ‘response’ rates were statistically so low for this cancer. Our naivety of course; we didn’t know what questions to ask.
And here we are: still waiting to hear whether the new oncologist will at least ‘discuss’ the horrible radiotherapy and whether they will perhaps ask a liver surgeon to look at the case.
In the meantime, an appointment has been made with that researcher ...
Ah – those ‘backup and restore’ functions; don’t we all wish ….?
A blog from Buzzie - not yet really a 'carer', but caring very much ...
