Cancer – the cost of no cure

This blog post has been a hard one to write as it has forced me to address, and now to commit publicly, how I feel about cancer treatments and cost effectiveness and rationing. This post ends in a reflection that I suspect some people will struggle to comprehend about my fabulous Dad.

Context

This week the National Institute for Health and Clinical Excellence (NICE) published final draft guidance appraising the use of Avastin (bevacizumab) in combination with chemotherapy (oxaliplatin and either 5-fluorouracil or capecitabine) for treating metastatic colorectal cancer. The guidance does not support the use of Avastin. This has been met with uproar from campaigners and cancer support charities and has received considerable media attention. Bowel cancer is one of the most common cancers in the UK, and it affects nearly 40,000 men and women each year; despite the fact that if caught early it is highly treatable it is still the second most common cause of death by cancer.

The facts

NICE use QALY to judge the effectiveness of treatments. QALY or quality-adjusted life years measurements give an indication of the number of extra months of life of a reasonable quality a person may gain as a result of the proposed treatment. When considering cost effectiveness the QALY score is compared to the cost of the treatment – the cost of using the drugs to provide a year of the best quality of life available. From this a judgement is made about cost effectiveness. You can read more about how QALYs are measured and used here.

Avastin is manufactured by Roche. They estimate “that approximately 6,500 people per year might be eligible for the drug and, with the proposed patient access scheme, Roche is currently asking the NHS to pay around £20,800 per patient. If all these eligible patients received bevacizumab, the total cost to the NHS could potentially be as much as £135 million per year“.

The cost

Research has shown a drug costing £20,800 per patient can give an extra six weeks of life.

The reflection

My Dad is terminally ill with cancer. He was diagnosed with cholangiocarcinoma (bile duct cancer) three years ago and given three months to live. He has exceeded all the odds with the help of surgery, chemo and the most cast iron determination not to give in yet. If you want to know more about Dad’s situation just search my blog for cancer. There is no cure now Dad’s cancer has returned. The reality is that this is likely to be his last Christmas (none of us are even considering that he might not make that), he may not live to see his granddaughter’s first birthday in March, we are all having to adjust to the thought of life without him around. I can not begin to explain how hard that is.

That said, he is dying, nothing can stop that. In my Dad’s case further chemo may give him extra time but there are no certainties and it would only delay the reality (Avastin isn’t a treatment option for him). At the moment Dad has decided not to have chemo as there are no guarantees and he is keen to keep the quality of life he has for as long as he can; the option remains open to him and he did say this week that he might consider it after Christmas. I suspect that there is something about the human spirit that means when faced with the situation yourself, the overriding instinct is to keep fighting, in any way possible. I will of course support whatever action my Dad chooses to take, although my sense is that quality of life is more important than quantity and that chemo might not be the best choice, but that is up to him.

So what has this got to do with Avastin. I guess I feel that NICE have made the right decision. Avastin offers no cure, it just buys time; I really understand how important time is, and I understand that in exceptional circumstances there might be a case for that time being worth fighting for. However I also feel that the NHS has limited resources and we all have a responsibility to recognise that. I strongly feel that people complaining about the NICE decision are missing the point, it is Roche that set the price of Avastin and all NICE are doing is using the best available evidence to make honest and transparent decisions.

My family are living the heart-wrenching cancer reality at the moment, that doesn’t mean I don’t understand NICE’s decision and while I appreciate how hard a reality that is, I don’t think if it was my Dad an extra six weeks would warrant a cost of £21k that might also provide ongoing support for someone else. The NHS has limited resources and I have real concerns as to how they will be shared given the planned demise of NICE and the new rationing role for GP consortia, it will take a strong GP to refuse to bend to the emotional pressure of a patient, their family and the media. I will stand by any treatment my Dad chooses but the reality is that there is no cure and all the money in the world won’t change that.

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17 thoughts on “Cancer – the cost of no cure

  1. Hi George, I’ve come across your blog via your twitter feed. First off, of course, I am sorry to read about your dad’s illness. I am commenting because you asked for thoughts, and what is happening to NICE is something I feel pretty strongly about.

    In short, I agree with you. NICE is respected around the world as one of (if not the) leading public health economics organisations. It has been successful in controlling the NHS drugs bill at a time of soaring drugs prices. There are limited resources and there always will be. Whether the NHS budget is higher or lower than it currently is doesn’t change the basic point that decisions will always have to made about what to spend money on and what not to spend money on. These decisions can either be based on evidence (as NICE strive to do) or they can be based on whose story is most appealing to the Daily Mail. It is clear to me which basis I would rather the NHS be run on.

    Thanks for writing your post – it can’t have been easy and to have been able to maintain a rational view of the debate from such a personal perspective is impressive. I hope the coming months aren’t too bad for you and your family.

  2. Firstly thank you for yet another emotionally intelligent and honest piece about your families predicament. You raised a number of strands that I just wanted to clarify
    1. English context
    You describe a decision that NICE has made and we need to remember that this is in the context of a socially funded (tax) system. Clearly other health systems are different and the conversation may be different – in the US people may feel it to be their right to have a safe effective medicine available that they can fund themselves or have taken responsibility for insurance to protect themselves in this case. (Being clear if people do want to fund their own Avastin they can do this in the UK in the private sector)

    2. How we value
    There are lots of metrics that get thrown about in these cases and this enables provocative headlines to be made. I feel comforted that the processes that NICE has operated are rigourous and evidence based. Clearly they can be improved but I know difficult choices like this are not easy. Again there is much that needs to be carried out (as you know) in service design to show that the incremental costs associated with newer technologies are correctly represented.
    One of the human aspects that you mentioned is how often the “significant milestone” discussion comes up …to see a baby /christmas/wedding. It raises in me a hint that we seek meaning in these events and in itself I guess enables closure. I wish we could measure that?
    In my opinion we are still in the early days about health economics and the resulting ethics and philosophy around it. The work that NICE has done in its research in this area is to be congratulated. There is much work to be carried out in many areas so that decisions at either an individual or community level can be made.
    Thank you once again for writing this

    COI These are my personal views Iwork@novartis.

  3. Thanks for sharing your thoughts on this matter. It is an issue that is also close to my heart having lost my father last year to cancer. He was very open in talking about his death for as long as he could (he had throat cancer which in the end took away his ability to talk for the final weeks) and there is a value judgement to be made about quality of life against cost, brutal as that can sound.

    That, I think, is the importance of a body such as NICE because, as you say, I think these types of decisions will be far harder when made by GP consortia and we will have potentially even more of a ‘postcode’ lottery.

  4. What a fantastic post George. What a brave man – he has done so well, and so have you all, it seems. I should say first that my mum is dying*, most likely tonight, of oesophagal cancer. Chemo and radio held things at bay for a few months, but the recurrence was fast, aggressive and unstoppable. We’ve had to come to terms in just three weeks with the inevitability of things. So your post touched me emotionally in a very deep way – I empathise so much with you’re going through.

    I am a die-hard adherent of rationality in public service decision making. I’m very familiar with the QALY system and of various other scorecards that attempt to assess ‘harm’ and ‘good’ in complex public economic situations. I’ll offer one thought though – it seems to me that in cases of terminal disease, particularly where patients have young families, that there are some amplifying factors at work. That is to say that if someone could gain an additional three months of life through medication, and in those three months could heal family relationships, prepare children properly for life after they’ve gone, set all their affairs in order, and leave really valuable lasting memories that will echo on and on in the lives of those they leave behind, then that might be worth factoring in somehow. Those precious additional days may come at a high price, but I can see that there might be longer term offsets in reduced stress, grief, or financial uncertainty rippling outwards from the dying person.

    Declaration of interest: My wife works for a major pharmaceutical company on their oncology portfolio, and has worked on campaigns that draw attention to this type of amplified importance of additional time.

    *grateful if this comment isn’t tweeted, because of this timing issue. I want to make general announcements at the right time.

  5. Great post, George, you really bring home some poignant thoughts about treatment for cancer.

    My own family in the UK went through some of these very same issues in cancer with my Father (prostate) and Uncle (colorectal); it’s very tough to be rational when it’s your own kith and kin. Ultimately, with advanced stage disease there is no cure, but therapies can help a person live a little longer and beat the odds, as I had to explain to my Dad after he asked whether he would be cured by chemotherapy, which he steadfastly declined.

    Your point about milestones is a very valid one. This was a consistent theme I heard as a marketing person while working on Gleevec. People wanted to get into the clinical trials in the hope that they would make their child’s wedding/1st peewee baseball game or whatever. One lady I met was hoping to get a slot in the trials, but had already booked her funeral (just in case) after being given 6-12 months to live in 2000. As far as I know she’s still alive and grandly beating the odds. You can’t put a QALY or any measurement on that, it’s priceless.

    What do I think of the NICE decisions? Before my Dad’s death, I used to think more indignantly and emotionally that of course new therapies should be available, no matter what. After all, this was people’s lives we were talking about. The ‘Tuesdays with Morrie’ conversations we had in his last few months were priceless and taught me a lot about humility, dignity and emotional intelligence.

    These days I see more clearly that 21K for an 1.5 extra months of one person’s life probably isn’t a good use of resources, never mind the side effects of the chemotherapy and antibody therapy, as my Dad and Uncle never tired of pointing out. They wanted to go with dignity, not as sick as dogs and a burden/worry to everyone else. Had the treatments offered them several extra years rather than months, with more tolerable side effects, I think they both would have jumped at that chance. There’s an enormous difference between months vs years.

    What really matters in the end is the quality time you have with your loved ones and the conversations in the end are all the more poignant and valuable for going through a shared experience, however distressing it may be. I can only hope I have the same courage and dignity my relatives had when my time comes around.

  6. Hi George,

    Firstly please accept my deepest wishes for your Dad, you and your whole family for his wellness. Hopefully life beyond Xmas and March and other milestones will be an achievable reality; fingers are crossed for that.

    Secondly, thanks for writing a level-headed and heart-felt post in the middle of very difficult circumstances. If I read your post correctly the main take-out is the prohibitively high pricing being charged by Pharma co’s for life-extending drugs such as Avastin. I’m glad you’ve shone a light on this and I wonder, is this value-pricing or real material cost and in a social age, how can Pharma co’s square their ‘reasons for being’ with delivering shareholder return if this is the kind of price paid by their end users?

    Isn’t it time pharma company business models became more transparent and organisations like NICE don’t end up taking the rap for a situation that’s not really that much of their making?

    Is this what we should be asking for? Is it something NICE should be pushing for? A transparency, accountability, blatant integrity and trust that big pharma has the best interests of its consumers at heart is long overdue; and this would go quite a long way to addressing the emotional pain and this sense of disempowerment that the way things are done engenders at the moment.

    I don’t know the answers, I’m just asking the questions… but new business models, user-generated, not shareholder-generated ones, surely they must be only a matter of time given the anguish being caused here. This needs to become a social debate not a commercial one, amongst all participants, doesn’t it?

    I lost my Dad 4 years ago under the most excruciating circumstances and it was a tough time. Paul my heart goes out to you, and anyone battling with the potential loss of a loved one, sincere thoughts.

  7. Hi George. Thanks for writing that so coherantly. The quality of life is so important when there is no ‘cure treatment’ available. My late mother in law needed simple things like a pressure relieving mattress in her last days – and there wasn’t one available, then they found one- probably taken from someone else. Managing the resources so that they are fairly administered is something we need a body like NICE for, it’s just hard if we can’t have what we want but important to make sure we get access to what we need.

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