Tory Election promises and Kidney cancer

I keep reading various blogs and comments on articles in the press – you know where people go on and give their comments at the bottom of the article – saying that the issues around David Cameron’s election promise to set up a Cancer Drugs Fund and the scandal of patients who can’t get drugs on the NHS are just plain wrong – well the facts are 100% accurate , many people just don’t bother to find out what actually happened before having a go or some even saying he was lying…..

Fact – these kidney cancer patients visited David Cameron with Clive Stone in August 2008.

N I C E initially refused to fund this drug.

100′s of kidney cancer Patients including those in Camerons constituency were refused Sutent, the drug their NHS Consultant Oncologists wanted to prescribe for them, before N I C E did their U Turn in March 2009.

Following unprecendented protests from Clinicians, MP’s, patients, Cancer Research UK , Macmillan Cancer Relief, National Cancer Research Institute and public ridicule from many of the other health systems ( including social welfare systems) around the world who provided Sutent to their cancer patients, N I C E were forced to admit they had got it wrong.

N I C E took 3 years to reinvent the wheel over this drug during which time 100′s of cancer patients were denied drugs and died prematurely. 100′s of families watched loved ones die early and 100′s of Doctors and Oncologists watched their patients die before their time because they were not allowed to do their job and prescribe proven clinically effective drugs.

And that was the scandal , thankfully it did not affect the families of the people who are making these allegations against DC. However those families it did affect deserve a little compassion.

How sad that people think it is OK to use us a political football.

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2 Comments so far

  1. Malcolm May 4, 2010 7:08 am

    Well you quote something back in March 2008 two years ago! Lets go back to the stone age and start quoting stuff from there. What matters is now and the fact a turnaround was made. Yes people died and that was terrible, but people have to accept there is not, and never can be, an open bottomed financial purse. Sometimes refusals have to be made as in the long term more peoples lives can be saved with cheaper drugs than one persons life prolonged with a very expensive drug. I am not saying that is correct, it shouldn’t be, but I do not envy one little bit the person who has to do the NHS budget or NICE who has to decide who lives and who doesnt. It would be a miracle if we could save every single life with available drugs. Maybe if income tax was put up to 40% or even 30% we could, but I bet a lot of the people reading this would be the first to complain. Who then would be responsible for denying the drugs …. the very people who complain now.

    I do not know what the answer is .. maybe the drug companies should be ganged up against instead of the NHS etc … why are these drugs so expensive, how much profit do these drug companies make? I bet they make a huge amount. To me it is the drug companies etc who are the ones that should be held accountable.

  2. AndyThomas May 4, 2010 12:33 pm

    Malcolm,

    It’s good to open up this debate, and thanks for coming back.

    It’s too simple to push the blame on the pharmas, they can argue that they invest billions in high risk research that has a high percentage risk of failure, therefore their reward is higher. Without them we’d have nothing to argue over in the first place even if they are too expensive. Either way, it’s the wrong argument. it’s much deeper than that.

    I love the NHS but it’s being mismanaged. Within the NHS there is a huge ammount of waste, especially at the PCT level.

    Only this morning I’ve been reading one of a local PCT’s policy documents. I dont have a problem with the document per se (although it is not at all patient centric), what I do take issue with is the thought that this Local PCT has wasted £1000s creating a policy that should be created centrally for them, it’s no wonder we have a postcode lottery. Goodness only knows how many other policy documents they’ve created on similar lines.

    I conservativley estimate it cost £60,000 to produce. If you then assume all PCTs create there own individual policies and multiply that out… the costs to the patient are huge ….what a waste! This should be done once and once only at the SHA level.

    Maybe they share this information, maybe they dont, but this is a simple example amongst many others of total mismanagement.

    I agree with you Malcolm, sometimes hard decisions have to be made, however we need to listen to the people (patients) who have to deal with this day to day, these people have the real inside story NOT the politicians. These are the people who have to go through unimagineable appeal process’, these appeal process’ are beyond harsh … they are cruel. People who have paid into the NHS their whole lives and who are now denied when they really need it.

    NICE is just not working, the QAly figures they spout just do not hold up. How can a drug like Afinitor that costs about £30,000 per year suddenly be converted into £75,000/year by NICE and the Qaly calculations? … it makes no sense, it’s an oral drug straight out of a blister pack and requires nothing else beyond it (except possibly a few small things to help with side effects).

    I could bang on in depth about the NHS National Program for IT and how wasteful that is. I’ve spoken to CEOs and Financial Directors of Hospital trusts about it… do they think it adds value? No, but they’re forced to comply.

    Speak to the Drs and Nurses and Oncologists who are screaming for these drugs. These are the people that know they’re clinically effective and yet still they’re not listened to.

    These are the hard cold facts Malcolm. Going back to 2008 isn’t the stoneage, the only reason we had a turnaround was because we campaigned and stood outside the NICE headquaters in London, up to that point they denied us. It’s a good example to use in the not too distant past.

    The answer I believe is radical reform of the NHS management, not the Consultants, Drs and Nurses. We have gone way too far with the red-tape and it has to stop otherwise we will strangle what is otherwise a fantastic service.

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