My Letter To N.I.C.E……………………..

Andrew Dillon
Chief Executive
National Institute for health and Clinical Excellence
MidCity Place
71 High Holborn
London
WC1V 6NA

Dear Mr Dillon,

RE:Bevacizumab, sorafenib, sunitinib and temsirolimus for renal cell carcinoma

As a Kidney Cancer patient I write to you in reference to your draft report on 7th August that outlines your recommendation to not approve the drugs for Advanced Kidney Cancer i.e. Sutent, Nexavar, Avastin and Torisel.

Over the past weeks I have heard a number of arguments that you’ve used to back your recommendation.

1. QALY, i.e. that these drugs do not extend a person’s life for long enough given the cost of the drugs

My response:

• These drugs are used successfully across Europe and the US and have been proven to offer significant improvements to quality of life as well as extending the life of a terminally ill kidney cancer patient for up to 26 months (latest clinical trails data) or longer as witnessed by many Kidney Cancer patients around the world.
• It seems to me to be a carpet bomb approach to say no to all 4 on this basis, this says to me that the decision was purely cost based and not on efficacy and clinical trial evidence, it was just NICE saying no to Kidney Cancer Patients no matter what the drug.
• Although I realise that the QALY calculation is complex, (although we don’t know as NICE wont release their methodology), I believe that your calculations have not taken into account the clinical trial evidence from other countries. I believe you now have this and will be using it.
• There are no other effective treatments for Advanced Kidney Cancer patients. As you know the current treatments have a very small percentage chance of working. You have also now heard from 25 UK experts in this matter backing this fact. To not give these drugs to patients is effectively condemning them to an early death.

2. The Pharmaceutical companies are to blame, their profits are too high and they charge too much for these drugs putting them out of reach for the NHS

My Response

• They do pump billions into research and as businesses are driven by their shareholders to make profits. Admittedly there maybe an argument to say their profits are too high and should be looked at. This however to me is a separate battle that the government/NICE should fight. It is not fair to use patients as negotiation tools to try and bring the costs down, if the treatments work they should be given as part of the NHS. NICE would earn more public respect and you will find much stronger public support for you battle with the pharmaceutical companies if you weren’t using patients in this way and I suspect you would win.
• The Pharmaceutical companies do offer schemes (e.g. Sutent) whereby they will pay for the first round of treatment. Why is this overlooked? It seems common sense to me to allow this because if the drug doesn’t work for that patient then the treatment is stopped.
• The figures you quote do not seem to take into account central procurement deals you would be able to negotiate, bringing the costs of drugs down.
• These drugs are offered at a lower cost to the UK than many other countries.
• Why do you ignore part funding/risk sharing schemes?

3. Who else would have to suffer if these drugs were funded? Which critically ill patients should be condemned instead of Advanced Kidney Cancer patients?

My Response

• This to me is an unfair argument. Yes, costs have to be factored into the equation, but with all the waste going on in the NHS and in the country as a whole this is just sheer bad management at the most senior levels. We seem as a country able spend billions bailing out our banking system (e.g. Northern Rock) and yet we can’t spare the cash to provide patients with much needed drugs. Not that I condemn the decision to bail out the banks because of the human impact, however it does seem odd that we’re able to do that and yet not provide for the NHS and patients who have no where else to turn.

4. The PCTs are adding to the confusion by not having a collective response to Exceptional Treatment policies and hence are fuelling the Post Code lottery.

My Response

• Patients are meant to be judged on their individual and specific exceptional needs. Wasn’t that their purpose to provide local accountability and community based support? If the PCTs and NICE are not communicating then what hope is there? It means 2 layers of management in-between the doctors and their patients. I’m so heartened to see that finally consultants and specialists are highlighting the clinical case for innovative cancer drugs and are fighting back.

5. Patients are using the media in an unfair way to put pressure on NICE.

My Response

• What did you expect? Central government does nothing, our local MPs do nothing, NICE denies the drug, the PCTs turn down the exceptional cases. What course of action are patients left with?
• Try and put yourself in the feet of a patient, of course you would do anything you can to get drugs that you know will help. If you personally were told by a specialist that there is a drug that can help but it wont be approved for you even though it has been proven to work in other countries. How would you feel? It is nothing short of cruelty.

Now that you can see the weight of public opinion I implore you to change your recommendation and approve these drugs now, not next year. Give patients and families their lives back. Please back the clinical case and restore the faith of the public in our NHS doing the ethical thing and giving these vulnerable patients the treatment they desperately need.

Yours sincerely

Andy Thomas

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