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.
This week the National Institute for Health and Clinical Excellence (NICE) published final draft guidance appraising the use of Avastin (bevacizumab) in combination with chemotherapy (oxaliplatin and either 5-fluorouracil or capecitabine) for treating metastatic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.
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“.
Research has shown a drug costing £20,800 per patient can give an extra six weeks of life.
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.
Today is 11 November 2010, remembrance day. I’m on my third poppy this year, just don’t seem able to hold onto one, not that I mind as I think the Royal British Legion do fabulous work and deserve every penny they get. I’ve written about my thoughts on service personnel before Respect please! if you are in any doubt about the role they play you can read it here. I’ve also written a little about my grandad’s experience’s in a post on VJ Day here. Since World War 2 there has only been one year when no service personnel have been killed on active service (1968) so there are lots of families out there who are living with the consequences of conflict.
The Royal British Legion appeal this year features Emma-Jayne Webster whose fiancé died just over a year ago and Gunner Mark Stonelake who lost his left leg two years ago in Afghanistan. They have both received support from the British Legion, along with 10,000 veterans of operations in Iraq and Afghanistan since 2003. If you wish to know more about the British Legion and the £62million they raise each year to support veterans then you can watch a short video here. It starts with a quite haunting soundtrack, about a minute in, recorded live on exercise:
Final words go to the big man, Winston Churchill: