Kidney Cancer – is it the wrong type of cancer !!!

Today we hear that once again  N I C E have refused to provide NHS  kidney cancer patients with  licensed  cancer drugs for kidney cancer. Sometimes I despair of this NHS. In the same week that Gordon Brown announces that each cancer patient will receive a one to one care plan and home visits from nurses, the same cancer patients are told they will be refused treatment that is readily available throughout the rest of world. And not just  Countries like the USA where insurance companies hold sway over who gets what, but countries like France and Germany  and Sweden who operate social welfare systems. What is the UK doing wrong; why can’t we look after our own desperately ill cancer patients in the same they do in the parts of the EU. Will we ever  achieve their high standards of care while UK patients are refused treatment with clinically  effective and proven cancer drugs.

Perhaps someone from N I C E  can explain their actions to the kindly people throughout England who run relays in aid of cancer research, who hold coffee mornings, who clean cars on Saturdays etc  and do so because they want  cancer patients in their communities to receive the best care possible and not condemned to die prematurely because the NHS  can’t manage it’s  own money despite the huge salaries they pay their administrators.

Afinitor,  the drug are refusing to pay for  to help kidney cancer patients,  will cost  less than £100 per day – last week a Director of Commissioning  ( thats costing and buying services to you and me) for a PCT  in London was offered a salary of  £800 per day !!!!!!! . 

Kidney Cancer patients are ill & many are desperately distressed by what they & their families are going through, but we are not stupid. We know that NHS funds are not infinite, but when  for instance,  someone ( who exactly? )  at the Department of Health can sign cheques for £40,000,000 ( forty million pounds) for legal contract advice about the NHS IT programme that doesn’t exist, how do we rationalise that to cancer patients who are told they are too expensive to treat ? Why do we tell patients  their treatment is not a cost effective use of NHS resources when we have Health Authorities sitting on unspent surpluses in their annual accounts. Are cancer drugs are too expensive at £100 per day when we pay Directors of commissioning in PCT’s  £800 per day ? Will we soon reach a time when  the NHS will stop treating ” expensive”  serious road traffic victims, will we stop offering “expensive” dialysis at £35000 pa ,who will say if  heart or lung transplants and after care  are  too expensive? 

I have a dear friend who has terminal cancer who said to me – “being told you have terminal  cancer is not the worse thing in the world, far worse is being told there is a  treatment that will help you but you can’t have it”. That is the reality kidney cancer patients are living and dying with. Do you want your Mum or Dad or son or daughter to spend the last few months of their life with these words ringing in their head. “You are not worth keeping alive”   It is an unforgivable way to treat anyone let alone cancer patients  and their families !!

Posted under Afinitor(aka Everolimus/RAD001), Cancer Drugs, General, N.I.C.E., User Posts

2 Comments so far

  1. Maria February 10, 2010 6:44 pm

    Here here Rose!

    When my husband dies of this dreadful disease as he surely will given his diagnosis and the refusal of 2nd line treatment, my family and I are unlikely to be a “burden on the state” as I have a good job and am the main breadwinner. However, the lack of foresight on the part of NICE means that many families will be forced onto state benefits through their need to care and later loss of opportunity to return to work. All this at a far greater cost than £100 per day.

  2. Chrissy Newman February 19, 2010 6:15 am

    I take my hat off to those people that do charity runs, car washes, shaves, morning teas, whatever, but I would bet my bottom $$ (I am in Australia) that they, as we were when Jeff was dx back in 1996, think that cancer is cancer is cancer. They are raising funds to find a cure for “cancer”, not realising that it is only an umbrella name for over 200 different diseases.

    People were of the mind that RCC wasn’t a “real/serious” cancer when we told them about it, as there was no chemo involved. When he had mets return in his lungs in 2003, they had to be re-educated again … “no, he does not have lung cancer”.

    I agree with what Maria said on the ACOR list. It is the inequality of the funding that sucks. Don’t get me started about breast cancer.

    I don’t wish any cancer on anybody … as mentioned, Jeff is a 14 year survivor (the past 7 as stage 4) of RCC and I am a 23 month survivor of stage 3 esophageal cancer … but there has to be equaality of care and treatment.

    keep up the good fight.

    Chrissy

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