This story on the BBC caught my attention because of its similarities to my own situation.
My heart goes out to this young mother who, aged 33, has been diagnosed with cancer. After two weeks of “migraine”, she was persuaded to see a doctor, who immediately sent her to hospital. Two hours later, she was talking to an oncologist. An MRI scan had revealed 7 brain tumours, and a later CT scan found 3 in her lungs, which was the primary site.
As I understand it, all tumours are gene mutations. She has a mutation of the ALK gene that produces a rogue protein that causes affected cells to grow uncontrollably. It can be controlled by a new wonder drug called Brigatinib which blocks the action of the protein. I have a similar but different mutation.
An enormous amount of research is going into the genes involved in different kinds of cancer, and the precise mutations involved. In some cases, drugs can disrupt the growth of affected cells. More and more of these treatments will emerge in the coming years, but development is expensive. Drug companies charge thousands a month to recover their costs. Brigatinib is £5,000 a month; the Tepotinib I take is £7,000 (less confidential NHS discounts). It amounts to many tens of thousands per patient per year. The financial implications for the NHS and health insurers are astronomical.
Is it worth, say, £100,000 to prolong someone’s life for two years? For 10,000 new NHS lung cancer patients each year that amounts to £1 billion per year. What about other forms of cancer? What about other health conditions? What about other issues in the broader arena of health and social care? At some point, the answer will be no.
It is a difficult question. If the treatment is guaranteed to stop the cancer(s) and ensure it will not recur then I personally would say it is definitely worth the cost. As you say, however, if the outcome is generally a short remission then I see that the NHS may have to weigh up the pros and cons of spending that amount of money.
ReplyDeleteIf I actually had the £100,000 available, I really don't know if I would spend it all to prolong my life by a couple of years or just say, sod it, and spend it all on having a good time.
Unfortunately, the inhibitor drugs eventually stop being effective, as the mother in the story has been informed. She sounds to be quite badly affected, with other secondaries elsewhere, too.
DeleteA lot of people do have £100,000 available in their houses, which can be re-mortgaged. Any politician that proposed making people do that in the UK would not be elected. One could even do borrow to have a good time, but it's too late to do so when the illness and treatment drains away your energy.
Difficult questions indeed.
ReplyDeleteI don't know the answers either, but guess that treatments will disappear by inaction and stealth for those who can't fund it themselves, e.g. by re-mortgaging.
DeleteAt 91 and on end of life palliative care - primary tumour colon and now spots on liver, lungs and base of spine - I don't despair. A long, happy life has almost made me welcome my end and I count each pain-free day as a bonus. My view is please let any spare money be spent on those at the other end - the children who often are too young to understand what is happening to them and who deserve a life ahead of them. Wonderful surgeons in the field of childhood cancers deserve every penny they can get for research. Recurrance at any age can never be certain. As my Consultant pointed out - 'Nothing about cancer is simple'.
ReplyDeleteI have no regrets, either, but I won't turn down treatment while it is offered, even though in my 70s I estimate it has already cost the NHS over £100,000. Some people say "Well, I paid into it all my working life", which I did, but nothing like that much.
DeleteI would rather see government money spent on the NHS than on nuclear power or weapons. I read somewhere that NHS spending is 370 Pounds per person in the UK. That does not sound very much to me.
ReplyDeleteThat is an interesting number. There are a lot of people in their 20s to 50s who don't use it at all.
DeleteThere is certainly a balance, but it seems reasonable to expect the NHS (and certainly private insurers) to pay for cancer care. I might draw a line at experimental therapies -- because if it's experimental it's unproven and expensive, and those are mitigating factors for a public health service, right? We've seen stories in the media about those sorts of cases. But who knows -- maybe I'd sing a different tune if it were me.
ReplyDeleteProbably expensive, I should say.
DeleteWhen my treatment stops being effective I would certainly take a clinical trial if offered. If they don't do the research, then new treatments can't be developed or approved.
DeleteToo bad that our health care comes down to money.
ReplyDeleteIncreasingly so, as these more and more expensive treatments are developed.
DeleteHasn't health care always been about money? Isn't that why NHS was started in the first place? Some people could not afford even basic healthcare. You pose some interesting philosophical questions Tasker about the value of a life, but I reckon that as long as basic health care and education in maintaining good health is available to all, then why not also invest in successfully prolonging life for those who (no fault of their own) have been blighted with mutations that cannot be resolved by exercise, good diet, basic cleanliness and plenty of sleep. The question then is simply - how much is available and how it gets allocated.
DeleteI believe that the gene mutation I picked up was probably caused by air pollution. There is increasing incidence of lung cancer in people who have never smoked, thought to be caused by particulates. There seems to be some debates as to whether pollution causes the mutation to arise, or whether we all have them anyway and the pollution triggers them. At the end of the day, literally, you get what you get, but it's tragic in cases like the 33-year-old mum.
DeleteIf only the pot of money available was as deep as the Mariana Trench! Sadly, certain lines have to be drawn. It sounds as though you have been really lucky to receive Tepotinib. The word sounds like the name of a Mexican deity.
ReplyDeleteA case for funding has to be made by the consultant, but I believe that at present these drugs are available to anyone likely to benefit. I estimate I have already had over £100k of treatment.
DeleteIt is an interesting question to ponder. Before governments pay such drug companies huge amounts of money, they need to press a very hard deal, not something governments tend to be very good at. Here for the latest and vastly superior shingles vaccination, it took at least two years of negotiations between the government department and the drug company before it was added to our PBS, and so dropping from $600 to $60, about $12 for pensioners.
ReplyDeleteTreatment has to also be judged on what quality of the life the patient might have while undergoing expensive treatments to prolong their life for a couple of years. (I hear US Trumpians yelling 'death panels')
I am sure that factors such as quality of life, age, fitness, positivity and so on already come into the equation. Thelma's phrase, below, says it.
DeleteI understand that research and development is expensive, but perhaps the pharmaceutical companies are taking an unfair cut of the available money. They need to be paid and rewarded for their work, of course, but their primary responsibility should be to patients, not shareholders. I suppose that's much too simplistic a view.
ReplyDeleteIt is interesting that the US company that makes Brigatinib has just received a takeover bid from a big Japanese drug company. Its share price almost doubled overnight. I think that supports what you say.
DeleteThe 'Judgement of Solomon' is needed to make a choice. It is very sad that everything in life has a money tag.
ReplyDeleteI'd forgotten that biblical reference. Spot on!
DeleteIt is a philosophical question at the end of the day and doctors and the British government as a whole are not good at dealing with the fundamentals of philosophy. Programmers of robots are also faced with the same dilemmas - think of the runaway trolley. It all boils down to utilitarianism.
ReplyDeleteThe NHS was founded on JSM's principles - free at the point of need - but they could not foresee how it would turn out 75 years later.
DeleteA difficult choice indeed. I suppose if the NHS spent £100K on every patient that would only survive 2 years, it would be in an even worse state than it is now. As someone else said, we need more money ploughed into the NHS to help with even the basics. My daughter is a doctor and I know from her how bad things are. More research on cancer is also needed and we are getting closer to solutions but not quite there. I am sorry to learn of your own case.
ReplyDeleteThank you. Yes, the targetted therapies are solutions to an extent, but the side effects caused are difficult. They block out some of the wanted proteins as well as the unwanted rogue ones. As I've responded above, I wonder how long it will be before we are asked to sip into house values for treatment, like happens with care homes.
DeleteI guess that one way to look at it is that extending a person's life for two years may seem like a relatively short time, but what is science learning by studying the effects of that drug working (and ceasing to be effective in that patient). This is a complex question and I don't think that there is a one size fits all answer. My grandfather had Alzheimers when his cancer was discovered. My father made the hard decision of keeping him comfortable, but not treating the cancer, because as you well know, cancer treatment is a rough road. In that case no. Some people would look at their situation and decide to forego treatment. Others, like this young mother might want to fight hard for those two years. I don't know the answer to this. I really don't. But all I can say is that my country is committed to sending $4 billion dollars to Israel to attack Gaza. I think that money could be much better spent.
ReplyDeleteYou can delete the comment if it is offensive to you, and please accept my apologies if it is.
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