NICE still reviewing their kidney cancer drug decision

Hi Malcolm !!!
I’m a Chromophobic as well. I went on Temsirolimus for liver mets….and they shrunk by 17% enabling me to have a liver re-section in May 2008. I have got written proof from my CT Scans to say so…..People with the rarer form of RCC like us are on an even stickier wicket so we NEED HELP !!!!!
I would love to be able to work……I worked for nearly 30 years, paid my taxes etc. and this is the thanks I/we get.
Good Luck Everyone !!!
Win

My husband has advanced RCC in the lungs, and whilst not advanced enough to be treated yet (they say) he will need treatment soon. NICE have had this info since we protested in August, probably before, and when Mmy Husband met Andrew Dillon he was not interested in any new info and not prepared to discuss the matter. We have since met our PCT and hit a brick wall because they keep referring to the NICE guidelines awaited in the new year. Meanwhile patients are dying. That is a fact. So please NICE, I think you already know what you are going to do, so show some compassion for once and do the decent thing, make your announcement early and save some lives. You may still have a little respect left then. PLEASE DO IT SOON!

I am pleased that you are able to carry on working Malcolm. I hope that more and more people who are taking these life enhancing drugs take up, and press home the net cost effects of being able to go about as normal a life as possible. NICE annd PCTs must be pushed into taking the true financial costs into account, as well as the resulting quality of life that these treatments have on their citizens. After all, they do, or should be working for us, the very people who have, or do work, and pay their costs.

I have recently been lucky enough to be prescribed temsirolimus and put on a trial to evaluate the effectiveness of the drug on a chromaphobic carcinoma, the reason being there is very little (if any) evidence as to how temsirolimus will perform, against this rare type of tumour. So far the side affects have been limited to mouth ulcers and a skin rash, with some muscle ache and a little fatigue. I have however been able to continue working. I still have a long way to go before we can evaluate whether the drug has been effective.

The point I wish to make to the debate is this drug has so far allowed me to continue my contribution to society (not least the Tax and National Insurance) as well as this my wife and family have all continued to work as normal with only one day a week being taken off for treatment.

This drug and I believe the others in question will allow the user to continue some sort of normality whilst (if treated early) considerably extend there life expectancy. This is how NICE should view the cost effectiveness and not just on a relatively small and narrow field of vision.

I feel for those who,s PCTs do not fund these drugs. I am lucky that Cheshire PCT always do. I am just completing my forth cycle of Sutent, and the effect has been dramatic. I feel better now than I have done for 2 years, the side effects have been manageable, and have been able to return to work, being productive and valued. I just wonder if NICE and unfeeling PCTs take into account the fact that many people with kidney cancer can return to work, and pay taxes, and contribute to companies who in turn pay corporation tax which includes profits from our efforts. At the begining of 2008, nobody, including myself would have given twopence for my life, and would have laughed if I had said that I would return to work. I am now in remission, and this is thanks to Sutent, and the willingness of Cheshire PCT to value the lives of its citizens.
My message to NICE and the PCTs that refuse to fund, and value their own people is this:- You are denying your own people the chance of a prolonged, valuable life. In addition, you are allowing benefits to be paid to people who could possibly work, and pay taxes. Add these together, and the cost would be minimal, and could well be cost neutral. Take off the blinkers by looking at cost alone.

My heart goes out to all of you, and your families who are denied this wonderful drug.

Beaurocracy gone daft!!! People will die whilst waiting. NICE need to get this sorted and fast. What a fantastic Christmas present they could deliver to sufferers and their families if they just pulled their finger out.

When I protested outside the NICE HQ in High Holborn, I did so to help others get access to the drugs they needed. Since that time I have found that I have need of the drugs too and life has become more and more precious each and every day. These delays are putting a lot of stress on my family and myself at a time when it is not very helpful. I wonder if NICE are waiting for a decision from Alan Johnson on ‘topping up’ treatment, before they make their reflections. Topping up is not an option for many of us and it would mean we would be denied the treatment that could help us live for many fruitful,cost effective and happy years.

Well done NICE, does this mean that my brother, a kidney cancer sufferer has to wait another year before he will be able to obtain a drug that may prolong his life. He has already been left with no treatment for 7 months whilst NICE decide on whether his life is cost effect or not. I am not impressed. Obviously the drug companies have proved that cancer drugs do indeed work well, but unfortunately all those poor people who are fighting the injustice of the post code lottery may not be around to benefit from these drugs. Could those that can please inform South Glos PCT to make decisions in the interest of the patient in conjunction with what their cancer specialist recommends instead of deciding on the grounds of whether the person is exceptional enough to warrant the cost.

It’s all very well that NICE are reviewing it – but it’s the same evidence that was presented at the ASCO in June 08, which means that it was probably available to NICE in May atleast !! You have to ask, why this wasn’t included in the 3 months of consultation before the deadline in August.
Great news if they do decide to overturn their initial decision, but not so great for the patients awaiting a decision.
I hope that NICE go back to the PCTs and share the evidence so that they can make up their own minds as to whether to fund the drugs in the forthcoming months.
Here’s hoping.
Andrew Stone