It was an awful long drive but it was SO worth it.
I picked up Angela in Bristol, the wife of another patient on Sutent, and it was lovely to have some company for half the journey. Angela told me about the fight they had with their PCT to get Sutent funded - such a dreadful stressful process to have to go through, especially with Gary her husband so ill at the time. Fortunately his health has improved remarkedly since taking it - yet another success story.
Being a woman Angela's map reading skills were excellent and we found the Pavillions easily and even managed to park right next to it. Ive never been to Plymouth before but the bit I saw of it yesterday seemed very nice - a pretty little town.
We were a little early, which was good as we sat with a coffee and watched the press arrive. The local BBC film crew were there plus a very nice young lady called Kate from The Telegraph. Kate in particular was very interested in our stories and why we were there. By this time the rest of the gang arrived headed by Rose, who runs the Cornwall Kidney Cancer support group tirelessly. We were interviewed and had our photos taken and were then invited in for lunch.
However much NICE spend on their communications budget they certainly dont over spend on the refreshments one. There were a few small rolls, some sausages and slices of dried up pizza and some teeny scones. Not that I ate much anyway - the members of the board were there too and I was too busy talking to them. I was lucky enough to corner Dr Gillian Leng, who is the Guidance Director, and shoved copies of the latest research in her hands and asked her how, as has been quoted by NICE, she could justify saying Sutent only gave 'a few extra weeks of life of poor quality' She struggled with this question and said she would try and answer it fully during the official Q&A session. Ok Gillian, I shall let you off the hook to eat your pizza - but only for now.
The session started with some NICE propaganda about the wonderful work they do in the world of preventative medicine - with the anti smoking and obesity campaigns. And yes, they do very important work, but this came over as a mutual back slapping exercise and made scant reference to the assessment of cancer drugs. The board members there to answer questions, Prof Michael Rawlins, Andrew Dillon and Dr Gillian Leng looked very smug and comfortable during this phase, but that soon changed when the questions started.
Rose opened. She is so incredibly articulate and well informed. She spoke quietly and calmly pointing out that whilst preventative medicine was indeed important there were issues regarding the denial of funding for cancer drugs which were far more imperative as peoples lives were at stake. Andrew Dillon waffled on for ages about preventative medicine and in true politician style avoided the question.
The discussion got a little bit more heated then as we, well I certainly, felt we were being patronised and fobbed off.
NICE's attitude seemed to be that they published their report - and then washed their hands of the whole affair - Pontius Pilot stylee.
The board members all agreed that Sutent was indeed an effective drug - but the cost effectiveness as worked out by the QALY system deemed it too expensive. When questioned about the true cost of Sutent Andrew Dillon even had the gall to suggest we (terminally ill cancer patients) should be lobbying the pharmacutical companies - until I pointed out that was HIS job. It is HIS job to provide guidelines for the very best value health care for US - the taxpayers and customers.
Globally, 53 countries fund Sutent. The UK is the only country to decide to deny funding. What does this say about the state of the NHS right now? That we, as the 3rd richest economy in the world, cannot provide the same cancer treatment as the likes of Mexico or Argentina?
By this time the board members were visibly squirming in their seats. Although we may be small in number Im sure they underestimated our determination. And the press were still there, which was excellent.
Prof Michael Rawlins abruptly wound up the Q&A session, which is a shame because we sure had them on the back foot by then.
The point that really struck home to me was that we (patients) and NICE shouldnt be treating each other as the enemy. NICE should make provision for proper patient involvement and have an advocacy system to resolve these problems. They should be working with us - not delivering their report and then hiding behind their desks.
To simply refuse to fund the most effective and up to date treatment for mRcc is not only callous - it is inhumane. A solution must be found.
The 'threshold' figures that NICE work within when making their decision havnt been increased for 9 years. Not even in line with inflation. And yet the NHS budget has doubled in that time. Surely that is something they should be looking at - and urgently.
Im sorry NICE - this isnt going to go away and neither am I. I shall be there in November in Stoke for your next Q&A session. And I shall be demonstrating in London again shortly.