NICE decision on kidney cancer drugs – have your say

This is a typical example of drug companies finding ground-breaking products then holding genuinely sick people to ransom for their own profit. DISGUSTING!

It seems to me you need to have a common type of cancer to stand a chance of getting the drugs/treatment you need. Far too much money is spent on ineffective hospital administrators, this money should be spent on drugs for the people that need them. And as for the drug companies, if they lowered their profit margins they may ultimately sell more of the drugs they develop, then everyone would be better off including the cancer sufferers.

ABANDONED BY THE NHS IN OUR HOUR OF NEED!
After removal of kidney in summer and scans showing spread- no treatment come back in 3 months for further scans and then NICE may have awoken from its slumber and provide treatment according to medical need not financial.
Will they ever really understand what it is like to know that treatment is possible but not available I do.

NICE…an ironic name really, they are far from it. Still waiting to find out if my mother who is suffering from Kidney and Bone Cancer will receive treatment, because of the fact this isn’t “cost-effective” for the NHS. She has been a Nurse for 35 years, working for the NHS and is one of the most respected nurses in the area. My Mum brought my sisters and I up single handedly, choosing not to rely on the state but to set a shining examply to us. After paying NI contributions all of her working life, and working for the NHS, they are now failing her when she needs them most. Such a traumatic time for my Mum, our family her friends and colleagues, and this is the thanks she gets from an organisation she has given her life to. I’m disgusted, angry, and totally shocked that a price is put on peoples lives in such a way. Why exactly do we pay NI contributions all our lives if we can’t use them?? You can bet your bottom dollar if we were a family of dole bates and living from benefits my Mother would have started treatment a long time ago!!!

I think it is useful and important to have an organisation such as NICE to focus attention on the cost effectiveness of treatments and in theory it is a step forward in promoting a rational approach to the use of resources. However, the flaws of an organisation such NICE need to be acknowledged and their decisions should not go unchallenged where their approach to assigning a monetary value to a standardised estimate of quality of life (the “QALY”) results in an irrational or unethical conclusion.

In the case of Renal Cell cancers NICE have rejected not one but 4 different but clinically effective drugs. The basis on which they have made their decision is by an analysis of randomised controlled trials looking at the 4 drugs separately. Whilst this is the only way to obtain statistically useful information about the effectiveness of an individual drug, it does not reflect the way that onchologists use such drugs in practice – patients are tried on first one drug and if they are a non-responder, they are swapped to another until an effective drug is found. This “suck it and see” approach is pragmatic but extremely difficult to test in a trial without introducing bias – the problem is that this may be an extremely effective strategy in treating patients – it may even be cost effective – we just do not have the tools to demonstrate it and NICE are not able to consider it. By rejecting all 4 drugs, NICE has put a stop to all “suck it and see” strategies using these drugs which are known to be clinically effective in a proportion of patients. I would like to see a trial that tests this approach – shuttling though several alternative drugs until a response is seen as I suspect it may prove far more effective (AND cost-effective) than trials looking at the outcome using individual drugs against placebo or one standard control drug such as Interferon.

A second problem with the approach of NICE in patients who are at high risk of dying is that the more effective the drug the less cost-effective it becomes using NICE analysis techniques. This is partly because dead patients are very cheap to treat whereas the costs of success continue to escalate. NICE acknowledges this problem (quietly) in their appraisal. It is a fundamental paradox of any cost effectiveness analysis that looks at groups of patients with a high probablility of dying and means that NICE should use a different type of approach when analysing “end of life” data – this applies to most cancer trials. The simplest way to accomodate this paradox would be to put a higher value on a “life” in this particular category of trial – for example by accepting £60 or 80,000 per QALY, rather than the current £30,000 per QALY.

By the way – I am a doctor (a cardiologist) and have no interests relating to any Pharmaceutical company or NICE. None of my friends or relatives have suffered from a renal tumour – my main motivation is to try to find ways of improving NICE’s decision making.

the cure for all cancers ,is the cancer it,s itself

Thanks for all your comments. We have now made our response to NICE – you can read it in this post here:
http://news.cancerresearchuk.org/2008/09/16/nice-rejection-of-four-kidney-cancer-drugs-our-response/

Kat

My mother died of kidney cancer, and it would have been great if she could have had a few more months or years to see her great-granddaughter growing up.

I took part in Race for Life to raise money and awareness of research, so that more people can be spared the suffering that my mother and husband went through. It is disgusting that new drugs that have been developed are refused to patients. I know that resources are limited, but it seems that funds are found for non- life-limiting conditions, while families continue to loose loved-ones who could have had a good-quality life extended.

PS

I shall continue to support Cancer Research and the wonderful NHS staff who work so hard on the limited resources available.

The decision by NICE to openly limit approvals on the basis of cost is a groundbreaking move. What it is saying in effect is that the NHS is limited by money and future treatment given will therefore be limited.

Over the years I cannot remember one politician single ever saying that when canvassing for my vote. Sadly, I do not believe this will change and the contributors who so bravely take the ‘let them die because of cost view’ play into the hands of the tokenist politicians.

The bitter truth is that the NHS, because of the lack of resource, does not work for many at the time that they need help.

To me it is as simple as this- a spending limit cannot be applied to human life. I understand that every treatment has a monetary cost but the majority of the time the cost of producing a drug and the price tag applied by the drug company for the end product are two entirely different things. Absolutely every avenue should be explored and exhausted before a decision that nothing more can be done, is made.

Thanks for all your comments, we’ll be using them when we make our representations to NICE

Again, a couple of the commenters above have been questioning the point of donating to cancer research when drugs are not made available to patients.

To answer this, we’ve explored some of the issues in this post here:

http://news.cancerresearchuk.org/2008/08/27/whats-the-point-of-funding-cancer-research/

Kat

What is the point researching and developing new drugs if we dont use them! I realize part of the problem here is that drug companies want to make money and are quite possibly one of the most evil corporations on the planet. I’m sure it wont take long for a generic drug to be developed, nevertheless patients need this drug now. No one should put a price on such drugs if they are going to save lives.

I make small regular monthly contributions to Cancer Reaserch U.K. so that the research programme can continue . However, I have recently questioned whether my small contribution is worthwhile simply because when a new drug is available the men in grey suits decide that it is too expensive to be prescibed despite those who know best i:e the scientists and doctors telling them that these drugs can prolong one’s precious life. What ,therefore, is the point in continuing research into a finding a cure for this terrifying disease ? I know what devastation cancer can cause, I lost my beloved only child, my son Tom to Hodgkins in 2003. Shame on NICE who are reputed to spend more on ‘spin’ than on drugs .

My partner Bob has been receiving the drug Sunitinib since last October.
Three years after having his kidney removed due to advanced kidney cancer, the size of the lesions in his lung started to increase.
After confirming with his consultant that he had insurance and that Sunitinib was the route we wished to take, our consultant agreed that Sunitinib WOULD be the preferred treatment and not the NHS option of Immunotherapy.
After the 1st few months of treatment he was scanned and the tumours in his lung had shrunk. Due to high blood pressure (a side effect of treatment) the dose was reduced from 50mg to 37mg the following scans were shown as stabel.
How on earth can NICE say this is not cost effective? He is nearly a year on treatment
and the tumours are still smaller than when he started.
Bob is not the only person in Scotland paying for this treatment who has had a reduction in their tumours. The expectation was stability not reduction,
how much more evidence does NICE need????
We have signed petitions to Downing Street which did absolutely no good.
If Herceptin at a cost of a pprox £1k to £2.5 per month for Metastatic and Adjuvant Breast Cancer (a far larger number of patients) and Glivec at approx £3k per month are licensed, where is the justice?
It has taken 30 years for us to have a treatment RCC for it then to be declined by NICE what is the point of haveing research done if we do not accept the results!!

Once again a terrible, terrible decision. I’m disappointed, not to mention disgusted. Please, please reconsider.

‘adam smith’ claims that NICE make good decisions based on available evidence but that is a naive assumption – it was recently revealed that many panels reach decisions without the involvement of a medical speiaclist in the relevant area. I know that difficult decisions have to be made but the idea that the money isn’t available is nonsense. It’s true that funds aren’t infinite but the priorities need to be sorted out – people with cancer shouldn’t be denied help and hope because of a bureaucratic whim.

Here’s your funding…….BBC NEWS, Oct 2007 – “MPs totted up £87.6m in expenses in the last financial year – a “like for like” rise of about 5% on the previous year, according to House of Commons figures.”

When will this Government wake up and smell the coffee – this should never be allowed – what they should do is allocate all the money presently allocated to drugs rehabilitation to junkies etc i.e. make them pay for their own methadone, after all they would pay for their own heroin – let’s not get away from the fact that drug addiction, unlike cancer, is SELF-INFLICTED and make them sort themselves out. This government puts a lot of funds into them yet NICE say that cancer drugs are too expense – let’s not beat about the bush and get the priorities right! Put the money into saving people’s lives through cancer.

Some facts and figures you may or may not be interested in.

It has been reported that Andrew Dillon, Chief Executive of NICE earns £190, 000 plus bonuses per year.

NICE costs something in excess of £30m per year to the taxpayer.

This year the NHS will report an overall surplus in its budget in excess of £1.7 billion.

The cost of one cycle of 50mg Sutent (Sunitinib)- £3363
(does not take into account the first cycle is free from manufacturer)

Not every one is on full 50mg. Most people are on 37.5mg, which is £2522.25
(me included).

Cost per patient per year of a full 50mg dose- £29,145.99

Number of people who would benefit from new Kidney cancer drugs per year- 1700 (figures vary but this would seem to be the uppermost figure).

Total cost per year of supplying Sutent to all these patients- £49.5m

(not every one would benefit from this particular drug, but there are 3 others included in the discussion, this gives us a general idea of the figures we are talking about)

Just one more thing. Not a figure, but a quote from the father of the NHS, Aneurin Bevan.

In parliament on February 9 1948 he urged ministers and doctors to “take pride in the fact that, despite our financial and economic anxieties, we are still able to do the most civilized thing in the world: put the welfare of the sick in front of every other consideration”.

What’s happened? The poor man will be turning in his grave.

My sister’s partner had one kidney and huge tumour removed in January this year. He is taking Sunitinib to combat the tumours growing in his lungs as a result of the kidney cancer. We have just learned the fantastic news that the largest tumours have again reduced in size. Sunitinib is working against this horrid disease. Please let it continue to do so. This drug is our hope – don’t let NICE take it away.

It is dreadful to read that cancer patients in the UK are denied the use of Sunitinib and the hope of life it gives. Many others should be allowed (free) access to this effective drug. Can the NHS/NICE not get some ‘purchasing power’ for this and other vital drugs through negotiation with drug companies on a Europe-wide basis? Surely that could reduce the price paid and ensure some consistency in drug availabliity across Europe.

It seem that i Scotland it is more important to be able to park your car or obtain over the counter drug free, than it is to be able ot receive Life prolonging drugs through the Health Service. In England the drug can be prescribed but on a postcode system, I live in Coventry where the drug has only been prescribed on compassionate grounds or if you can pay, while next door in Birmingham they are more openly available. I have had a tumour found in the Vein connecting the heart to the liver which is a regrowth from a tumour removed by surgery some 8 years ago. Sunitinib and Temsirolimus are the only drug that appear to offer any chance of steming the further growth of the tumour (WHICH IS IN ITS VERY EARLY STAGES OF GROWTH). NICE however seem to have decided my Life and other people in a simular position are not worth keeping alive as the Tax and National Insurance we will be able to pay after treatment finishes will not be enough to cover the cost. I am sure I sound bitter and sarcastic in this letter. That is because this decision has made me that way. I understand there are limited resources available, but there is collosal waste as well especially on NICE.

This is an abolsuute disgrace and on occasions like this mortifies me as to being part of this country, some of these drugs are available free in other parts of Europe, how can you put a price on life? Someone is cashing in here, ie most likey to the be drug companies, they should have legal inflictions to prevent the huge amounts of profits they make

Thanks for all your comments so far – keep them coming.

As with the commenter above, quite a few people are wondering what’s the point of donating to cancer research when drugs are not made available to patients.

To answer this, we’ve explored some of the issues in this post here:

http://news.cancerresearchuk.org/2008/08/27/whats-the-point-of-funding-cancer-research/

Kat

A good friend of mine has kidney cancer and I find NICE’s decision wholly unacceptable. How can you put a price on someone’s life – this is what they are doing. If she lived elsewhere there wouldn’t be this problem. How is this? Money is spent on breast enhancement/reduction which is surely in most cases cosmetic. I donate to Cancer Research and other cancer charities but what is the point of research, discovering drugs only to be told they cannot be used. What a crazy situation.
I pray someone comes to their senses soon before too many good people die.

Hi,

I do find the behaviour of the British Government shamefull.

It is clearly revolting that on the very day the Government’s shelter organisation the QUANGO N.I.C.E. is befouling the image of what was the envy of the world, the British NHS, by hiding in their luxury Head Quarters behind their £30,000,000 annual budget.

Hiding from some 60 Kidney Cancer patients and their carers peacefully demonstrating against the new Government policy, as announced by N.I.C.E., to selectively EUthenase an entire category of patients those Challenged by Kidney Cancer who are now to be deliberately denied the drugs they clinically require both to continue to live and to have a quality in the life that is left to the,

Whilst these brave people, some of whom were dying as a result of this deliberate action, were demonstrating I, as a Kidney Cancer patient was unable to attend due to the damage I have received physically as a result of my Kidney Cancer, but whilst my friends were there to protest at their impending death, against the very people who can save them N.I.C.E. – I was aware the disingenuous claim of N.I.C.E. was that they could not afford the drugs and rather than admit it was directly due to the incompetence of the Government in the management of the Health Service – the devolved irresponsibility of regionalisation that has led to the “post code lottery”.

N.I.C.E. has even tried to shelter their incompetence to manage or negotiate, behind the specious claim that the people who researched and funded the developement of these drugs charge too much – yet it is clear that America who fund the drug for prisoners on death row and the Argentine that prescribes it more than Britain, Malasia and the EU and a total of some 70 Countries around the world would seem to disagree!

Consider – on the very day whilst my friends were demonstarting and their servants the Government funded N.I.C.E. lacked even the manners to meet with these very ill people and N.I.C.E. security was turned on these sick people to intimidate them by photographing them in the street despite the presence of Police Officers invited BY the demonstrators!

Whilst they were peacefully demonstrating and N.I.C.E. hid in shame – I read on my computer that MY Government had pledged to squander from the NHS budget £170,000,000 to train therapists to councel those with ‘Cognative Behaviour Disorder’ – to buy votes by providing this fashion and lifestyle service rather than fund the drugs that are available world wide for Kidney Cancer that may, if nothing else, provide experience for the Oncologists and researchers towards an actual cure whilst giving hope to us The Kidney Cancer Patients that N.I.C.E. have selected to deliberately permit to die for economic expediency – whilst still funding breast enhancement, In Vitro Fertilisation, tattoo removal and many other treatments that can ONLY be seen as frivolous when compared with the deliberate death of Kidney Cancer patients!

Do warn us at what stage we are to be moved into The Harold Shipman Ward in our Regionalised NHS Hospital.

First they came for Kidney Cancer patients and took away their lives

but as you were no a Kidney Cancer Patient I guess you did nothing!
Then they came for those with Crohns Disease (?) and withdrew their treatment

but as you didn’t have Crohns Disease I guess you did nothing!
When they come for YOU in your hour of need and weakness –

there was no one left to help you they had been swept away, I guess ‘cos you did nothing!
Where will YOU draw the line – Must it be YOUR child, YOUR Mother, YOUR wife?

Or would it have to be YOU?

That is YOUR Shame to share with N.I.C.E. and the Government that hides behind them!

http://www.KidneyCancerResource.com provides facts, press coverage, MPs & MEPs declarations of support, a Forum for YOU to ask questions or give help, rolling news, In Memoriam, world wide news, links to other sites that may be able to help such as http://www.JamesWhaleFund.org, A.C.O.R & many more around the world.

If we are not covering the area in which YOU need help, speak out and we will try!

We are TOTALLY unfunded and Patient led, with help from professionals and Charities.

We are NOT there to compete we are there to compliment other organisations that can do parts of the job better!

Regards and Warm Hands for YOUR Hour of Need,

Greg L-W.

Available to help YOU 01291 – 62 65 62

Retrieved from “http://www.kidneycancerresource.com/index.php/User:Greg_L-W./BlogEntry:_2008_August_28_03:30:37_BST”

My father died from Renal Cell Carcinoma 8 years ago after a 5 year battle with the disease. I know how valuable every day of his life was and if there had been a way of giving him a bit longer, or easing his pain it would have been obscene for anyone to tell him (and us) that it wasn’t worth the money. These drugs which NICE have withdrawn could hold the key to remission and improved treatment for Kidney cancer sufferers. They may even be shown to offer benifits to other forms of cancer. It’s time the drug companies made a little less profit and NICE thought a little harder about the death sentences they are handing down to people who need these drugs. If there is a campaign running to lobby NICE please post the details and I will be happy to add my voice.

Andrew Dillon, chief executive of Nice, said: “The provisional conclusions on the use of drugs for treating renal cancer are those of an independent appraisal committee whose membership is largely drawn from NHS clinicians in active practice. They understand the issues at stake.”

He said that if the 26 oncologists are to “maintain the credibility of their argument” they must explain which patients “should forgo cost-effective care in order to meet the needs of those with renal cancer”.

May I usurp their authority and propose that savings could be made as follows:

1. £30,000,000 could be saved by closing N.I.C.E. which is merely a QUANGO behind which corrupt politicians shelter their mismanagement of the NHS.

2. £190,000,000 PER ANNUM could be saved by making organ donorship an opt out scheme rather than an opt in scheme. This being the sum spent on those who are on waiting lists for organs spent annually keeping them alive.

3. Upto £300,000,000 which the Health Service spends per annum on tattoo removal QUOTE Baroness Gardiner House of Lords see Hansard.

4. Cease providing any Government employees with ANY aspect of Private Health Care this would not only make massive multi £Million savings but would also ensure the inducement that they ensure the Heath Service is repaired.

5. Cease providing funding for inflation linked pensions for Government employees – since they are indemnified from their incompetence as inflicted on the balance of the public.

6. Place a ceiling on incomes in Government QUANGOs as few if any of these people are employable in the commercial world which is why they flourish in the unaccountable world of sheltered employment in QUANGOs.

Be minded of the fact that in the real world high salaries are determined by the ability to generate high profits leading to greater levels of employment and more tax profit for Government – high salaries in QUANGOs and Government merely produce a need for higher taxation and contribute nothing additional to the Country.
7. Cease giving early retirement and compensation for stress related claims – individuals should be free to select whether they do a given job it being their choice to accept the additional incomes of a given job. Stress in employment is a choice: if you are out of your depth and suffering stress hand back the salary you clearly are failing to earn and quit!

8. Cease providing life style care as a given whereby life style care should ONLY be provided once primary Health Care is provided thus saving on:

In Vitro Fertilisation.
Breast augmentation.
Rectal repair when self inflicted for sexual pleasure.
VIAGRA & other erectile defficiency drugs.
All forms of fertility enhancement.
Treatment of any long term condition for aliens & health tourism.
Close all councilling services on the Health Service that are not directly medical.
Charge for failure to attend appointments.
Cease all concepts of gender reassignment.
9. Withdraw from membership of the EUropean Union as clearly we have joined a club we can afford as we are unable to take care of our own people and are paying £1,800,000 per HOUR of British tax payers money (QUOTE Institute of Directors) and are having to kill British Kidney Cancer patients to find the money to fund the Warsaw Underground, Incompetent French farmers, Corrupt Fishing quotas for great maritime nations like Austria and whilst funding Spain to build their roads we permit them to enrich themselves by stealing fish from British fisheries.

10. Surrender the utterly specious Olympic Games which we clearly can not afford as already the budget of £2.8 Billion has already run to £9.3 Billion with an expectation of a final spend wasted on these irrelevant games of £18 Billion where less than 1% of the population will participate meaningfully in the related sports unlike 100% who will have need of the Health Service where the new policy is to Kill Patients who are too costsly.

I do appreciate that Andrew Dillon on his massive salary may well be able to turn a brief phrase in defence of his job and his QUANGO but clearly he is not competent to the job he is paid to do or he would not have made such a staggeringly stupid and ill considered statement regarding the murders he is planning to preside over.

Regards,

Greg L-W. 01291 – 62 65 62

I HAVE THE ANSWER

May I suggest that if you are worried that you have or may get Kidney Cancer and need to claim on your Health Service:-

Make sure you are o Government QUANGO the beauty of the job is that the Government doesn’t believe in the Health Service and provides all its senior staff with PRIVATE HEALTH INSURANCE!

Also the Government doesn’t believe in the Public Pension Service so it gives all its Staff prefferential INFLATION LINKED PENSIONS to compensate for the c*ck up they know they will make in Government.

Also Government staff on QUANGOs are not held accountable for mistakes just put all the data you can find on your provided Lap Top and lose it like the MoD do having lost over 700 to date!

If you want more expenses just loose your CD with all the records on them and claim for a larger sum.

Perhaps you have been away for the last month in Beijing with the other QUANGO members and 650 people funded from the public purse who had NO relevance to performing in the tedious and obscenely costly farce.

Join N.I.C.E. or a P.C.T. where you can be sure of no meaningful work, regular long holidays, inflation linked pensions, early retirement, stress related compensation, staff car schemes and of course PRIVATE HEALTH INSURANCE as of course you can’t relly on or trust the old NHS which is so badly managed it is obviously broken.

Don’t worry your job will be safe N.I.C.E. alone has a budget of £30,000,000 and if you need a pay rise you can take it out of the drug budget and kill off a few more Cancer Patients – they’re a nuisance anyway they just won’t die quietly they are just selfish – next they will start demonstrating but never mind the Government is on your side on a QHANGO so the State Police will be called in under the terrorism laws we can just murder them – woops sorry Mr. Menenez can we have those 8 bullets back!

Cover your risk – join a QUANGO.

The other beauty of a QUANGO or Government job is you get promoted for lies – look at Blair and his lies about Iraq which used so much of the money we could have used for health. Why do soldiers get health care? They knew the risks they should be like smokers or the obese and denied care!

Mandelson lied so often he is now an EU commissioner WITH PRIVATE HEALTH CARE!

On a £2.4Billion Budget I note incompetency and waste has already run that to £9.3Billion and it is rumoured the Olympics will cost Britain over £18,000,000,000 – Howmany people will the Government have to kill to pay for their tedious sport? Already they CLAIM that due to their incompetence they are going to have to kill Kidney Cancer patients!

Quick join a QUANGO and be safe for life.

Join me at http://www.KidneyCancerResource.com where we can fight this clearly non political issue!

‘First they came for the Jews but I was not a Jew so I did nothing….’

Regards and Warm Hands,
Greg L-W.

Besides finding out all the other different ways you can protest this decision on http://www.KidneyCancerResource.com join us there in the long haul if you are facing the Challenges of Kidney Cancer as a patient, carer or family member – we can also help Journalists and Lawyers as we have over 2,500 primary pages of frequently updated information – it is the largest web site of its type for Kidny Cancer and has a Forum where you can discuss all the issues or if you would rather read or write the blogs you can have one of your own.

We all know that some of us won’t make it and so to help those currently facing the Challenges there is also an IN MEMORIAM section to read of the courage and exploits of others who went before and know that there will be a place for family & friends to visit and commemorate those they lose whilst helping others they understand.

Try to get to the demo on Wednesday – I’ve just had a phone call from Chris Heaton-Harris MEP who is fighting for us in the EU under Human Rights Laws and wishes us well in the battle and has promised to continue to fight for us.

I can not fault my MP David Davis of Monmouthshire who has written so many letters for me over the years, support has been readily available from several MPs & MEPs I have worked with over the years and the general consensus is how can our Health Service betray people in their moment of need – it is like paying for fire insurance and the insurance company refusing to pay out because it was the wrong sort of fire! How long before the Fire Insurance Company would be shut down and its directors put in prison?

Perhaps we should start holding Government Cronies on QUANGOs as accountable as Companies and their directors!

Don’t forget they were able to find upto £300,000,000 for tattoo removal I QUOTE Baroness Gardiner House of Lords – Hansard.

Join us on http://www.KidneyCancerResource.com where we are fighting and keeping ourselves informed – not just for ourselves but for you too. If you don’t join us we can’t help you!

Good luck on Wednesday – & then the fight for life continues on http://www.KidneyCancerResource.com

Warm Hands – there IS someone to hold yours in those scarey moments!
Greg L-W.

A friend of mine has advanced kidney cancer and NICE have decided not to give him the drugs that would prolong his life because of the ban. NICE have said that the drugs are too expensive but is too much to pay for someones life?

A wonderful friend of mine has kidney cancer and two of the drugs that NICE have decided are not cost-effective have made a positive difference to her. Although I accept that NICE have to make difficult choices, how can you put a price on someone’s life when these drugs seem to be life-effective?

I don’t think that taxing pharmaceutical companies more is a viable option. They would simply move their operations elsewhere and still charge the NHS the same prices for the drugs.

I have a friend who has benefited from the use of one of these drugs and is now facing a prospect without any further treatment.

However, I feel until something is done to curb the profits of these pharmaceutical companies, or otherwise raise UK taxation to the level of other European countries for example, there won’t be much progress, as NHS is simply running out of money.

I have once spoken to somebody who worked in the NHS, whose job was to decide who should be given a treatment that’s very expensive, and they claimed that to fund support for a single patient like this would mean having to decide to withdraw treatment from 10 other patients, say with heart disease, whose treatment is much cheaper. How can we put a price on somebody’s life like this?

I will be travelling from South Wales next Wednesday 27th, to London to NICE HQ to add my support. I come on and read the posts every day, my brother is a KC patient, one of the lucky ones who gets one of the drugs, but there are too many people who are not as lucky. I am sad to say that I am not proud to be part of this country, GREAT Britain, what a joke!

I can’t believe the timing. I find out that a close relative has kidney cancer, which has spread to her pancreas, one week and the next it is revealed that there will now only be one drug available to cure such a cancer, if NICE has their way. My relative had one kidney removed 36 years ago because of cancer so she has no option to have the currently infected one removed. She has been told she has only months to live, with or without chemotherapy, and now it looks as though she will be unable to receive some of the life preserving drugs that might have extended her life for a few more precious months. I am lost for words.

My brother lost his fight for life 16 years ago from Kidney Cancer at the age of 43 when he was in the prime of his life. It devastated us as a family. Since then I have supported cancer research in many ways by walks, the race for life, running and I have raised lots of money. I also make a monthly donation as do other members of my family. I have never begrudged raising money for such a worthy course but having developed Cancer myself I now question as to why after the studies showing the benefit that these drugs can make should all those who need them be denied. So when I developed Kidney Cancer and had to have my kidney removed my thoughts were oh no not again. For my brother there was no hope. No treatment. Now there are drugs available after so many years and we are being told no. What gives people the right to say who is deserving of the drugs. I do not want my family to have to go through this all over again especially knowing that there are drugs available but which according to those in charge of the purses are far too expensive. How dare they. This is not something I or many others have asked for it has just happened. One day I was going along with my life the next I was told you have kidney cancer but if it comes back you can’t have the drugs you need to prolong your life because thats right there too expensive! I can only presume that the people at NICE who are making these decisions have not lost a family member to kidney cancer, or indeed cannot possibly of been through the same experience themselves and therefore do not comprehend the effect of the decisions they are making and the impact it is having on us and our families. I PRAY FOR US ALL.

Why are we all donating so much to cancer research, just to be told when a suitable drug is found that will help prolong lives that it is to expensive

For those interested a group of Kidney Cancer patients (myself included) will be descending on the NICE HQ on the 27th Aug to personally deliver our comments on the decision to deny SUTENT, NEXAVAR, TORISEL and AVASTIN.

it is being lead by the Oxford Kidney Cancer Support Group

Anyone interested in joining can get the details from:

http://www.kidneycancerresource.com/index.php/Kidney_Cancer_Support_Group_Oxford_27-Aug-08

Hope some folks will be able to join us.

I am completely amazed and appalled by the NHS decision to remove the right to be treated for some patients. It is hard to believe that in a civilised country the most basic human right – the right to live – can be denied. What other human right is more important I wonder? How far has bureaucracy gone? Are sums more important than humans? What is the role of the National Health Service other than protecting health and life? Who gives someone the right to say ‘you are not worth treating’? Would they say the same words to their parents, siblings, children? Why a wealthy state cannot afford to take care of it’s people when much poorer ones in Europe can? My answer is: money became the central value of this society rather than the real values like life, hope, help, love for people. We should be ashamed even to think like this!

This refusal to fund the latest drugs for kidney cancer patients is desperately sad for those suffering with the disease but is just a part of the problems that are besetting the NHS. I find it incredibly short sighted of drug companies (who use the argument that they need to charge the extortionate prices that they do because they need to fund the research), since they are pricing themselves out of the market – surely it would be better to make less profit on the drugs but at least get a greater return on their research investment?

But, without significant NI/Tax increases, the NHS cannot continue to be free at point of contact for all disease for all people. Perhaps we should be looking at other countries’ healthcare models – those where there is a combined system of self and government funding? Maybe this should be applied to certain (non life threatening)diseases?

Personally, no amount is too great to provide a longer and better quality of life for me or my family and I can understand the anguish and anger that this decision has caused. A way must be found to extend the life of these people – for them and for their families.

And I understand some of their anguish – I am a cancer sufferer.

MONEY is the problem behind this sad tale. There isn’t enough of it in the NHS and the PCTs can’t justify spending large amounts on one or two patients when they have to consider everyone under their care. For a start, I think that the prices that the drug companies charge for these new treatments should be carefully monitored by an independent body. Do they really need to charge tens of thousands of pounds for a handful of tablets? I understand that devolping the new drugs is expensive but testing and promoting them can’t be much (my husband took part in trials for an arthritis drug a couple of years ago and didn’t receive any payment). Also, nobody chooses to be a cancer sufferer do they, but what about those people who choose to smoke/drink/eat too much and then get free NHS treatment for related diseases and health problems that could have been prevented had they taken more care of themselves. This is unfairly wasting NHS/PCT funds on people that won’t help themselves while drugs requests by innocent cancer sufferers are turned down when the money has run out! It just doesn’t make any sense does it?

My husband has had very positive results from 2 courses of sutent. NICE’s stance is devastating news for us.
We can only echo previous comments; why plough so much into research if this is the outcome. is it necessary for nhs funds to be used on those who abuse alcohol, those who over-eat etc?
We pray that this life-saving drug will not be taken away.

Please don’t take my cousin away from me, he is a wonderful, caring, clever, funny fabulous gentleman in his early 40s who hasn’t abused his body in anyway, shape or form. Neil Haines is a wonderful artist, he likes to read books go travelling and play board games with his beautiful partner Harriet. It does amaze me why anyone should not be allowed to have their treatment for any disease and why does life come second to money? Why has NICE decided to give people a taster and build up hopes of the sufferers, their families and friends then take it away? What is the point of trying to improve on old drugs if they can’t be used? My cousin has had positive results from taking one of these drugs – Sunitinib and because they are in the minority they get discarded and told that if there were more of them then they would beable to have the funding for the drugs. This really doesn’t make any sense to me. Please, please don’t deny my cousin his life, I personally feel his life is worth more than £35,000! Please change your discision about stopping these drugs, and put a smile back on my and many other families faces, there is enough sorrow in the world we shouldn’t be adding to it! Thank you.

Helen Pengelly says that cancer is a curable condition which can be managed by diet and a healthy lifestyle. Wrong Helen! Whilst diet and lifestyle may play some part in preventing some cancers, ALL cancers are multifactorial in their nature – even lung cancer – and have many potential causes, some of which can be prevented and most not. Cancer is a pernicious and totally arbitrary disease which can affect anyone – which is why everyone, from Olympic athletes to the down and outs on London’s streets may be affected by cancer at some time, and one in three of us at some point during our lives. For your information though… kidney cancer is not one of those which (as your message suggests) is caused by bad diet or an unhealthy lifestyle. In my many years as a cancer nurse I have seen many young, fit, athletic people affected by this and many other cancers that many assume to be diseases of the lazy, the obese or the indolent (or any other stereotype you care to mention). Unfortunately, like most stereotypes, this one is wrong and your statement (like all such assumptions) is completely unfounded!

We need to face simple facts here.

Fact 1: these drugs work and offer inestimable benefits to patient’s suffering from this debilitating cancer

Fact 2: they are approved for use and funded in almost every other civilised democratic country in the western world

Fact 3: the cost of the drugs is no less than many other treatments given to other NHS patients

Fact 4: as a relatively rare cancer, the total cost of prescibing these drugs to those who need them will be a drop in the ocean of the NHS budget (currently being squandered on hugely inflated PFI agreements!)

Fact 5: unfortunateky, because so few people are affected by this cancer, this indolent government think that there are few votes to be lost in witholding the treatment

Fact 6: which is why I, as and experienced cancer nurse and academic of many years standing was only too pleased to leave the UK and move to a country where the benefits of science are not squandered by faceless bureaucrats operating on behalf of a parsimonious and totally unscrutable government.

Sign the petition on the number 10 website!

Fact 7: Gordon Brown and ‘New Labour’ are sunning scared of the polls and terrified of their electoral chances come the next election…. every signature matters and for the first time, may actually count in the minds of these self-seeking individuals who protect their own lavish salaries and allowances whilst denying those who voted them into office the blessing of an extended life span with significant symtom reduction and (wake up Mr Brown!!!!) actually incurr less expense on the NHS in terms of hospital admissions and the treatment of their otherwise manifold symptoms!

I have had 2 courses of Sutent and my tumour has shrunk from 6x4cm to 5×3.3cm! As I have already had one kidney removed and 20% of the remaining I am desperate not to go on dialysis and this drug is the only way I can prevent it. I am lucky that my PCT will pay for it but I don’t know how long for. It is vital that this drug is available on the NHS. How can drugs like Viagra be available and not lifesaving drugs? What have I been paying NI for all these years?

In response to the inhumane comments by Adam Smith- France has a system similar to the nhs and after lobbying by the french people they now provide anti cancer drugs!

Britain has the worst cancer survival rate out of all western european countries.

What is the point of giving money to research if the resulting improved medication is not going to be available (unless you are rich).

The decision from NICE to recommend that these drugs are not ‘cost effective’ is most disconcerting. Many people give time and money in support of research into treatments for cancer (of all types) and this news is extremely hurtful to them. NICE should not have the remit to decide on the relative cost value of treatments – but just on their clinical efficacy. How to fund treatment and whether to use certain drugs must be left to doctors, the Health Service and ultimately the Government. We, the electrorate can then make our feelings known when it comes to electing a government.
On a slightly different tack, I find it hard to believe that the NHS is unable to influence the cost of drugs and treatment. Surely the pharmaceutical industry could cope with ‘negotiated’ costs for drugs if the NHS tackled the supply of treatments centrally.

These life-saving drugs should be seen in the light of a waste of resources in some sections of the NHS especially in non-clinical functions. I agree with Pam. Steve – ukengineeringrecruitment.net

How come that invitro-fertilisation and all its attendant costs can be budgeted into the NHS scope of care when money is required for such important life changing kidney cancer drugs, and the new generation anti-arthiritis drugs which are also now under threat? Not being able to have a baby is hardly life theatening is it! Maybe the NHS should also look at the the way it serves those who come to this country without having contributed a sous to the system such as migrant workers, and look at a fair and sympathetic part payment scheme for them. It is time to stop worrying about the possibility of offending certain sections of people and get practical, and thus reduce I believe, the unnecessary cost burden off the NHS. Maybe NICE could then be a little less cost concious and concentrate more on the efficacy of what is available within the drugs market.

NICE seems to be run by accountants. They probably have a human life benefit/cost ratio versus drug cost program which makes their decisions automatically. No doubt if they had been involved in benefit/cost evaluation for streptomycin in the 1940’s/1950’s they would have decided this antibiotic was too expensive for the treatment of TB. Someone needs to ask them what monetary value they put on the lifespan measured in months of a kidney cancer patient

If something works it should be made available whatever the cost and make the cutbacks on the wars. Why is it that we could afford a war in Iraq but cannot afford to keep people alive. This is all wrong.

If you are worried about the environment and want to cut out your junk mail visit myletterbox.co.uk it really works and is very simple to use.

As part of the organising committee for CRUK Relay for Life we are raising funds to enable CRUK to do their outstanding work WHAT FOR are we to turn round and say to those discovering better treatments sorry guys good job but its to expensive to be of use .Money and costs shouldnt be the issue drugs like Sutent work and should be available to those that need it whatever the cost

There is going to be a demonstation on the Wed 27th August outside NICE headquarters.
HIGH HOLBORN LONDON at 12 noon ….
Please let everyone know.The moor that demonstrates the better chance we stand.

Thanks

I had my kidney removed four weeks ago because of a tumour growing in the ureter, and hopefully the cancer will not have spread any further. Having lived with the stress of the initial investigation, diagnosis and operation from which I am still recovering, I can only imagine the devasation if I was to be told that the cancer had spread, but that I could not have any further treatment.
If only a couple of thousand people a year are diagnosed with advanced kidney cancer then surely the money can be found to give this relatively small number of people the best possible chance of survival.
Money is found to support many self inflicted illnesses, such as smoking and drug related diseases, so it seems unbelievable that the same resources aren’t available for the small number of people who develop kidney cancer.
Its sad to think that our Health Service was once the envy of the world, but now we are way down the list when compared to most European countries.

How can NICE put a price on someones life? It would be useful to meet the people involved in this decision.

Why not try and get the NICE decision changed by supporting the petition on the 10 Downing Street website.

http://petitions.number10.gov.uk/kidneycancer/

How can the goverment be so shallow and uncaring?
They allow the NHS to fund sex change operations and yet will not help the unfortunate with cancer of the kidney.
They also help themselves to public funds everyday and yet refuse to pay for these drugs.
If a member of the ruling bodies was affected then I’m sure a exception would be made in their case.
Also anyone wanting assylum in the UK should have a full health check before they are allowed to claim on the NHS.
It is about time we looked after the people who have paid into the system for their whole lives.

This is disgusting the people that make these decisions want to try living with kidney failure or another of these terrible illnesses.After caring for someone with Renal failure we would have tried anything to make his and our family life better and putting a price on suffering especially someone elses suffering is not ok.I also donate to renal failure charities and cancer research and no-one has asked me were i want the money to be spent. I thought i was doing good for the benefit of others not as healthy as myself but it seems not.

It is not just NICE but the government must take their fare share of the blame as well for not giving cancer patients the treatment that is required. The UK for too long now has got to the situation where there is not enough money in the pot to treat every one that it should be. There has been in the past certain illnesses Aids for one where expense never came into whether patients were treated or not, it would not have been “fashionable” not to treat them.
Now we have too many people coming from abroad, never having paid anything but all getting treated, it’s another of our systems that seriously needs looking at, those of us that have paid all our lives into the NHS will not get the treatments we require. The sums for the NHS don’t add up but the government & NICE wont admit to it. How would they feel for a member of their own families not to get the treatment that would help them live longer.

I have been moved to tears of sadness by reading about sufferers of kidney cancer being denied drugs that may prolong their precious lives, and at the same time moved to tears of rage by reading of the money and resources wasted by the NHS and the Government. What about initiating a £10 on-the-spot charge to every person who turns up at A&E with some self-inflicted problem such as alcohol poisoning (if they can afford to drink themselves into a stupour, they can obviously afford the “donation”), and giving this money to the people who need it to pay for their life-saving drugs? Judging by the huge numbers of people who are treated free of charge in A&E units all over the country for this type of problem (we’ve seen it on countless documentaries), it ought to raise enough to cover the cost of life-saving drugs for those who deserve them. Simple idea, but it could be effective. Is there anyone who works in an A&E department who could give an estimate of how much this might raise every Friday and Saturday night?

A few months ago I lost my mum to bowel cancer. She bravely fought her illness and although she lost her battle, she was at least given all the chances possible for survival. She found the physical processes involved in trying to stay alive at best torturous, but at least she had hope! She was willing to try everything within her reach to beat cancer. If people aren’t willing to give up on themselves then no-one else should have the right to give up on them either – including our elected government!

Cancer affects everyone in the family, not just the person undergoing the treatment. Everyday we mourn her loss, but at least we know that there was nothing else that could have been done. Like most people with cancer there were no reasons why she developed the disease, she was just unlucky. People suffering with kidney cancer are NO different and they ALL should be given the most appropriate treatment for them as individuals. If that includes being given expensive drugs that may only prolong their lives by a few weeks then sobeit! Sometimes hope is all that remains when all else fails. If it also means that surviving relatives know that that their loved one was treated with compassion and fairness right to the end, then the money was, in my opinion, well spent!

We all know, especially in today’s rocky financial climate, that budgets have to be squeezed and spending prioritised, but there are some pots of money that seem to have no bottom! As others have mentioned above, the Government doesn’t seem to have trouble wasting money and how much have we spent now in Afganistan? Our soldiers are in a foreign land fighting for liberation. Can’t our own government see that British cancer suffers are just asking for their support to fight their own personal battles for individual liberation from almost certain death? I am sure that no-one urging for these drugs to be made available really wants any branch of the NHS to be squeezed to pay for them, just more money allocated from mis-directed pots elsewhere.

If we don’t have our health and compassion for our fellow human beings, regardless of why they are calling upon the NHS, what have we got?

Good luck and best wishes to all of you who are currently fighting cancer. My thoughts and prayers are with you.

It is very sad that whilst there are new advances in medicines patients are not able to benefit unless they can afford to fund this themselves. I would want my family to be given every opportunity to live!

I work for the NHS and realise that NHS funding is not a bottomless pit, but surely life saving or life prelonging drugs should be high on the priorities.

What a terrible decision and what a dreadful blow to the poor sufferers of this dreadful disease. I can see both sides to the argument, but its true that too much money is being wasted on non life threatning conditions and supporting individuals who have never contributed to the NHS and also those who do nothing to help themselves.

Please though do not listen to these people who say” do not give to cancer charities,” the things they have achieved over the years have led to many people going on to live normal healthy lives due to the advances in knowledge on how to treat this illness, WE ARE ALL AT RISK no matter how you look after yourself.

A curable condition that can be managed by health and diet!! ……DEAR GOD!!! what an insult to the millions of sufferers of this wicked disease.

The problem here is the success of a cadre of academic economists in presenting their work as though it is an equivalent science to that of the labororatory and clinical sciences that lead to new treatments. However, Economics is a theoretical social science, not a natural science like biology or chemistry.

Unlike knowledge about the pathological processes, economic appraisals are socially cosntructed – that is the underlying concepts are politically contingent. They don’t look like that, of course, because they are expressed using mathemetical terms. The QALY (Quality Adjusted Life Year) which is the measure put forward by health economists for assessing the value of new treatments, was designed quite deliberately to meet the requirements of the Thatcher government in the 1980s as it sought to control costs.

NICE economic reviews are carefully desinged to consider only direct costs to government (via the NHS) but not the personal costs to patients, families, friends etc, or other agencies (e.g. local authorities, charities, the DWP). The underlying assumptions of these economic models are not easily understood by policy makers, clinicians or lay people because they are presented as mathematical models. Since very few of us have the high level maths skills it is hard for people to criticise reviews or advocate alternatives.

Economic evaluations are now presented as though they are scientific facts when, in fact, they are no more than theoretical speculations expressed in mathematical terms. These make them incomprehensible to clinicians and patients alike, and this lack of comprehension protects neoclassical economic theory from questioning (which is what we are talking about, it sounds complicated but actually it is very dull).

It is astonishing that the major research charities and patient advocacy organizations – or even journalists – haven’t cottoned on to this. If peoples’ lives are to be calculated using politically contingent theoretical models, then perhaps we should pay more attention to what these are.

Cancer Research UK should start to aggressively question the theoretical economic models that underly NICE reviews. They need to attack these model’s assumptions about what matters and support critical economic research in the same way that they fund critical developments in the biosciences. Like other research charities, they should start asking serious questions about whether the economic evaluations that they fund within drug trials play a part in perpetuating this problem. After all, it is those evaluations contribute to the NICE reviews that decide how treatment is rationed…..

Do NICE care about people? I’ve just read some of the other blogs and my heart goes out to these brave people. How can a group of people make these decisions when we have the drugs to help others? Why promote the development of drugs if we are not going to use them.

How many of the NICE body, have been touched by a loved one having cancer? I do not understand how it is a post code lottery in this day and age, I Ithough we all paid the same taxes to the same body?

If a drug is availsble then we should use it even if it is not “cost effective”

It’s good to see these drugs are being rejected but it’s a sheme it’s for the wrong reasons. The only people that benefit are the drug companies. More needs to be done to expose the truth, cancer is a natural reaction of the body trying to heal itself. It is a curable condition that can be managed by diet and health living but sadly that isn’t profitable.

Teresa – I don’t give to cancer charities either because I suspect they are party to this knowledge and part of the cover-up. Cancer is big business and it is innocent people who suffer as a result.

My young sister passed away in November from kidney cancer, because she didn’t lie in the correct postal code area she was declined the drug that would have prolonged her life.

Like Teresa I wonder why we give to Cancer charities anymore as although they produce these drugs that will help Cancer patients – we have a body who decide on whether or not people shall live! Who gave them permission to act as God?

There is a lot of money wasted in this country and it is about time that someone stood up and demanded that the use of drugs is not dependent on how much they cost. If it can save or even prolong someones life then it should be available.

I don’t give to cancer charity’s anymore as I don’t see the point of researching to finds cure’s only to be told that you can’t have them because they are too expensive.

Our nephew who has cancer at 44yrs of age had a kidney and a rib removed last January 2008. Surgeons found a secondary cancer had spread to the lung, which is in the form of polyps. He is undergoing treatment by taking the drug SUNITUB. After his first course of treatment he had a scan, which showed a slight decrease in the size of the cancer after just one month.
This drug is one of three drugs N.I.C.E. has announced a draft decision NOT to allow funding for which is the only effective treatment for this type of cancer the reason given that it is not cost effective.
We can accept this reasoning if the cancer was caused by self abuse such as smoking, alcohol or drugs but we cannot accept for our nephew who has never smoked, taken drugs and only drunk alcohol in moderation.
Can you imagine what stress, anger and upset this has caused him, his partner and his mother and father and to all the other people and their families in the country whose sons or daughters has this life threatening decease.
Please, please do not let this draft become a reality.
A very concerned and sincere
Aunt and Uncle.

Our dad has just turned 66 (July 08), he had been retired for just 10 months when he was diagnosed with advanced kidney cancer. What a shock that was to him (he had no clue) and what devastation to the family. He has just had his follow-up appointment after a course of radio-therapy. He is going to start Interferon but his consultant told him the best drug for him would be Nexavar. He wants to live to enjoy the life he had before this destructable disease took hold, he wants to enjoy his 7 grandchildren, he wants to do the things he & my mum planned for retirement. WHY WHY WHY!!!!!!!! does NICE think it can play god. (We know there is not a bottomless pit of money, but when the NHS & government are wasting billions of pounds each year on furnishing second homes or the top cats getting above inflation pay rises – We could go on!!!!!!!!!!!). What value are NICE putting on human life, how can you sleep Prof Peter Littlejohns all 4 drugs have proven effectiveness. What if it happens to you or one of yours (I hope to god it doesn’t) but what would you do then?????

I live in Spain and am currently being treated for advanced Ovarian cancer, Here in Spain there are NO restrictions on any drugs for any cancer. As usual with the UK it all boils down to money, I thought the medical profession are there to save lives !! Perhaps the money should be directed to the people who really need it and not to people with self inflicted illness caused by obesity, smoking etc.,

As a 48 year old woman with kidney cancer, I am now sentenced to a very shortened life and probably won’t get to my 50th. I work for the NHS and appreciate that there is not a bottomless pit of money, but I do question how NHS funding is allocated for other things that we, as parents, should take responsibility for such as childhood obesity for example. I did not choose to develop kidney cancer and no-one can tell me categoricallywhy I have, other than it is not genetic. Can the drugs companies do more to reduce the cost of these drugs?
I hope NICE will reconsider this decision and allow people like me to make the most of the time we have left and use it as usefully as possible,

the news this week about NICE’s decision to not pass these drugs for genral use for kidney cancer is imoral.these drugs give hope to people inflicted with this horrible disease.Without hope they have nothing.These drugs have been proven to exstend life expectancy .The desision should be over turned.

MAKE A DIFFERANCE EMAIL [email protected] HAVE YOUR SAY.

Just to say that my impression is that there’s so much support out there, but it’s split between different patient groups/blog sites etc – who is actually going to be responsible for pooling all the comments/facts/individual pieces of research together/ I would like to challenge all the owners of the sites where these comments are made to make sure they all arrange ONE National coordinated response which can be used to show the extent of public outcry at this decision. I would also challenge evryone who wants to overturn this decision to bombard media and to keep this story in the press until it is over turned.

My husband has recently lost a kidney and the adjacent lymph node to kidney cancer. After surgery and upon biopsy of the kidney and lymph node it was found that the lymph node had renal cancer cells in it, therefore the cancer was out and it made our situation far more serious.
He has recently attended his first appointment with his Oncologist and been told by a member of the Oncologists team that it is pointless approaching the powers that be for any of the drugs that are being refused as we would just get a resounding no.
I cannot understand how these people sleep at night? Do they ever sit and think about the devastation caused to the families of the patients refused the treatment…I think not. I must say though that I will not, and I am sure neither will other relatives out there, sit and take there no and so I am prepared to fight for every single day I can get with my husband. I have already e-mailed my local Member of Parliament and he is presenting my e-mail in its entirety to the Minister for Health as he feels that it puts the whole issue in a nutshell to a senior Minister…I only hope it helps all of the patients and families out there who are feeling as I am.

What is the point of people in the UK giving to charity to enable further medical research. It seems a bit pointless when we are denied the benifits of any new drugs discovered. We ought to be celebrating fantastic breakthroughs such as these. I hope enough people are prepared to make a stand over this as something needs to be done. Everyone will lose out in the end. (Except for the rich obviously!)

We’ve just had very good news that after 3 months on Sutent as second line after interferon, my husbands tumours have shrunk significantly. The side-effects are minor so he can live and work normally. In fact he’s very fit and active.

I’m appalled that this treatment, which can be demonstrated to be effective for many people, could be blacklisted by NICE. The accounting models used are clearly flawed. Any statistician worth their salary knows that small samples require special consideration. In that context it is inappropriate to talk about extending life ‘by a few months’ as that is very much dependant of the particular circumstances of the patient and not reflected in a small sample. Average measures seem to me to be a poor way of describing a complex situation and one that is easily misunderstood by a largely innumerate media.

Although it would be better to scrap NICE altogether and let clinicians decide, politicians and policy types are sold on these crass, simplistic types of measurement (Quality Assurance, League Tables, the nonsense is endless not to mention expensive….), so we seem to be stuck with them. If we must put up with such dubious methods, a much higher weighting should be given to any benefits and lack of effective alternatives.

Since the drugs in question have been clinically proved to be effective in the treatment of patients, surely we must grasp this and move forward not backwards by removing them from the NHS list. As someone who has been affected by the tragically debilitating effects of this disease, I believe we simply cannot ignore the fact that there are people who will suffer as a result of this. Much as we know there are always budgets to work within, you cannot put a price on human life… Any treatment which is providing positive results should be embraced and forged, not shelved. I question whether the same concern for overspending is being echoed elsewhere within the NHS where it could be argued that a lack of accountability and an inefficiency in procedure has possibly led to a much larger deficit than the sum total of the drugs used in these treatments… Please, please reconsider this decision.

http://www.writetothem.com/

Contact details for MPs can be found by entering your postcode.

http://petitions.number10.gov.uk/kidneycancerRCC/

there was a petition- it has now closed, but response can be viewed .

This was a petition from before NICE’s decision, so perhaps a new one is needed petitioning against this decision

Unfortunately it is not possible to post new petitions during the PM’s holiday. So get posting after 1st September!!

There is another petiton, but calling for an “end to the postcode lottery ” of treatment.

http://petitions.number10.gov.uk/kidneycancer/#detail

Not sure how relevant this is since NICE’s decision?

I have needed to do a lot of reading over the last few months, of a subject that, I’m embarrassed to say’ I know very little about. This subject is Cancer – in particular Kidney Cancer.
I have wanted to know more, out of respect for a very close friend of mine who has been diagnosed with it.
Everything seemed to happen so quickly. He was ok one minute, then the next he had a countless number of stitches all over his body where they had taken out his Kidney.
Even after all this, my friend managed to drag himself back a little with the help of all his friends and loved ones.
He then rang round with some great news – funding had been granted for him to receive the right drugs to help reduce any Cancer left in his body.
Yippee we all shouted. Good for you!
The drug is Sunitinib. The effects were very promising. He was told that his Cancer was showing signs of reducing.
Perhaps now he could begin to look forward to a life and not a sentence.
BUT OH NO!
For some reason, funding of the drug is to be withdrawn, even though it is available in the rest of Europe and America. Are we not in Europe?
Imagine what effect this kind of decision has had on my friend and his family. It seems barbaric to say the least. Things were looking good. Now what?
We need NICE to please, please reconsider it’s decision. This cannot be allowed to happen. There are many people out there DEPENDING on this funding. Please find the money from somewhere, however difficult it might be, I beg you – even though I know my friend to be too courageous and proud to do so himself.
My friend has given me so much over the years. I just wish I could give him what he so desperately needs now!!
Please help.
Chris Gear.

NICE has accepted the clinical benefits of Sutent but maintains that it is not cost-effective, in short, kidney cancer patients are too expensive to keep alive.

Kidney cancer is very difficult to treat and these new drugs have made a dramatic advance in treatment. One of these drugs in particular (Sutent) offers real hope, since all clinical trials and experience in other European countries have shown it can dramatically lengthen survival.

I am puzzled by the costs quoted by NICE, as their threshold is set at £30,000 and yet Pfizer, the manufacturer of Sutent quote £28,000 for a years treatment. The media has also misled the public in stating that survival is only a few extra months. However, if this were so, the cost would be significantly lower. I was diagnosed with metastatic kidney cancer in 2003 and after five major operations, radiotherapy and Interferon treatment; my only hope of staying alive was having Sutent. For me, this has worked for the last 22 months!

The most worrying aspect of this decision must be the decline in cancer care in this country. Already we are near the bottom of the league tables for cancer care in Europe. Sutent is widely available in Europe and the USA. We are one of the richest countries in the world and yet we are rapidly moving towards a two-tier health service – one for the rich and one for the poor. Not only will this decision affect kidney cancer patients but the implications will reach far wider and could affect all present and future cancer patients who could be denied treatment to enhance and preserve their life, due to cost. Clinicians will be unable to provide the care for their patients they would wish and drug companies could be unwilling to invest in research and clinical trials for the advancement of cancer treatment.

On a very personal note:
Just imagine, you or a loved one are given a diagnosis of terminal cancer and you have only months to live. Your world is turned upside down. Yet, you know of a drug which could lengthen your life, allow you time to come to terms with your situation, enjoy what time you have left and most importantly, give you hope for the future. You are then told that you cannot have this drug unless you have the money to pay, not only for the drug but for all your subsequent treatment. How does that make you feel?

My son suffers from eczema and was repeatedly prescribed steroids when he was a baby. It wasn’t until we met another eczema suffering parent who told us about a cream called protopic that we were aware that there was a better alternative. It changed his life using the cream. The doctors wouldn’t tell us because ‘it was too expensive’.

You CANNOT not give a drug to someone because it is too expensive. I understand the pressure the government is under financially but maybe they should all stop and think, what if it was someone in their family, would the money matter so much then?

Cliff Findlay

Hi,

Dealing with others facing the Challenges of Kidney Cancer and other Urological Cancers each and every day on http://www.KidneyCancerResource.com where not only do we have over 2,500 primary pages of data and articles on Urological Cancers including Kidney Cancer with details on all 4 of the drugs that N.I.C.E. seeks to ban.

I have many friends still alive because of these drugs one in America has been kept alive since 2000 interchanging Sutent, Nexavar & Torisel and HIFU & RFA now 70 he still runs a multi $Million international engineering business on and off planes from India, America, China & EUrope.

I appreciate that someone must consider COST when allocating treatment – with RCC there is really only one set of drugs that work – when speaking of COST it is profligate with our money to squander it on Chemo. as a fob off – since it DOES NOT WORK – when the 4 drugs named are known to work and are advocated by every competent RCC Oncologist.

Let us look at COST on a relative basis – the cost of sending an MP to the Beijing games is much the same as keeping a Kidney Cancer patient alive for a year. Be minded that the public purse is funding 600+ individuals to go to The Olympics BESIDES the athletes & their trainers!

Then consider, since N.I.C.E. has orchestrated this leak during the Olympics consider the willingness of our Government to fund the 2012 Olympics for the very few when they are spending more in 4 years to build running, leaping, swimming & jumping zones only ever to be used by a very few when less is spent on Hospitals as used by all!

Perhaps we should consider, since MPs are on their extended holidays whilst more laws pass in their absence as ‘Orders in Council’ & ‘Statutary Instrument’ than ever when MPs are sitting. Note that less than 15% of our laws are now made at Westminster since over 85% are imposed by diktat undebated from the EU. Yet although the Government fails to fund drugs it can happily find money for payrises of MPs who do less than 15% of that which they did formerly. It may be of interest that there are MPs who spend more on travel in a year than is required to keep a Kidney Cancer alive and others who obtain more in funding mortgages for second home (on which they gain any profit in appreciation) this amounts to over 2 patients saved for a year by each MP in each electoral period.

Interestingly a criminal alien with HIV costs £18,000pa in treatment costs alone yet we must fund them as we are denied the right to repatriate these illegal alliens, criminal though they are! Then again we are expected to fund not just gender reassignment but also rectal repair incurred by perverts by self infliction.

Is it a Health Service or more a means of buying votes through provision of Politically Correct life style services and a raft of QUANGOs to hide the massive unemployment in the middle classes

The Lap Tops conveniently lost by the MoD each year would fund 9 years of life in the world of Kidney Cancer. The money garnered by an MEP with a non job, beyond the betrayal of our Country & its Constitution to no gain – save for Politicians & their parasites – would fun 8-10 years of life in Kidney Cancer drugs.

On the scale of cost management one may also bleat over Big-Pharma making huge charges but are they not there to make profits? These profits fund Government in taxes!

Perhaps it would be more apposite to consider the fact that The Government charges VAT on these drugs and also charge Business Rates on all Hospital property.

It would also seem that some 7,000 registered charities fund themselves on Cancer!! Perhaps before looking at the profits of Big-Pharma perhaps we should consider howmuch money the Government makes out of Cancer and the unlikely expedience of finding a cure for cancer when it funds so very many jobs!

One very major saving for the Government that would alone fund the drugs for Kidney Cancer is the morbidity of those of us with the disease and the massive savings in payment of pensions when we die prematurely!

Now there’s a thought – is the Government so badly managed that it is practicing EUthenasia to save on pensions!! NICE work if you can get it with a £30Million budget to squander!

I regret whilst the devolved irresponsibility of what was the NHS can willingly fund VW Tauregs, Porches and the like for its non medical executives, which it does, and salaries in the region of £120Kpa. for each of the 150+ PCT Chairmen and a mere £30M to finance N.I.C.E. and funds more managers in the Hospital service than there are utilised beds –

I for one refuse to accept cost efficacy as grounds for this new policy of State EUthenasia.

PERHAPS we can help you at:
http://www.KidneyCancerResource.com
we are neither a charity nor funded being solely run by Kidney Cancer patients with our own Forum for questions and help.

Regards,
Greg L-W. – details at:
http://www.kidneycancerresource.com/index.php/User:Greg_L-W.

I am absolutely disgusted but not surprised by the decision from NICE, infact nothing surprises me with this government. I think it is even more annoying when you see the grotesque waste of money that our government think is acceptable, for example ministers expenses; paying for a new kitchen at a ministers second home….oh yes of course that’s needed. I wonder what the cost was, was it the cost of a life?.

I believe that if our government were frugal then its citizens would not be so anxious about such decisions, it’s because they CHOOSE to blatantly waste so much money in other areas of society that is so unnecessary and too many to name.

There is and should not be a price put upon life.

Linda Jones

NICE – YOU HAVE TO RECONSIDER! How can it be the right decision to prevent the only treatment to a small group of cancer sufferers that shows any chance of working? If there were proven alternatives, perhaps there would be a justifiable rationale. But from all I’ve read, this is not the case. How can it be right to prevent sufferers in the UK from receiving the treatment that is freely available in other European countries? (Are we part of Europe or not?). If this decision stands, it appears to form a sort of death sentence combined with the torture of no hope to the few poor individuals who find themselves, through no fault of their own, in this desparate situation and in this country. It can not be morally defensible, and I beg you to re-consider. Especially when hope has one week been granted, in allowing patients to commence the treatment, only to have it cruelly then taken away, despite apparent success in reducing tumours. I appreciate tough decisions have to be made, and I would not want that job. However, I would also not want to live with this decision – you must think again.

As a Kidney Cancer survivor to date, currently with bladder cancer, working through http://www.KidneyCancerResource.com to provide a help line for those patients Challenged with Urology cancers, I am unable to understand the logic or the lies of our Government practicing EUthenasia on a cost basis – under which Act of OUR Parliament is the Government permitted to slaughter citizens based on expediency & cost efficacy.

The claim is a lack of money, yet Baroness Gardiner assured us in The HoL that the health service spent upto £300M on tattoo removal; it saves no lives on an over populated planet squandering public money on IVF Treatment, nor can it be seen as moraly right to fund the EU at the rate of £1.8M per. Hour (quote IoD), fund criminal unemployable drug addicts with Methadone @ £12Kpa. yet refuse to provide the drugs those of us with cancer NEED – with 50% of the population likely to get cancer it may yet be YOUR turn for EUthanasia!

How can we morally justify taking money from tax payers to fund subways in Poland, Airports in Greece, funding for incompetent French farmers under CAP and unaccountable corruption across EU Politics OR The John Lewis List.

It does rather seem that the Government is destroying what was Beverridge’s NHS a policy commenced when Aneurin Bevan politicised Beverridge’s Plan! This Government to its shame would seem in economic illiteracy and moral bankruptcy to be destroying not just our economy, our banking industry, our mortgages and now our once proud NHS.

Sutent has been proven to work for RCC for 70%+ of patients but neither N.I.C.E. nor P.C.Ts have shown they are worth more than a plugged penny – save on their costs, put Qualified Medics in the seats of authority and dump the cronies in the QUANGOs.

It is interesting that they are willing to squander large amounts of money on Chemo which is very costly when you consider it is only 5-10% effective with RCC. The N.I.C.E. decision is morally bankrupt as they are happy to be hugely funded which is clearly a waste of public money & they fund Chemo. which has little effect.

For as long as Britain can fund EU membership with no visible gain, fund Africa without strategy, tactics or undertanding, fund the farce of Gallileo & ID Cards – I ask you shouldn’t our care of our own peoples come first?

I see it as a no brainer but I have cancer just like you probably will during your lifetime, without the drugs you may need you WILL die – EUthenased by The State in this Brave New World to suit a Common Purpose! Is this all part of Blair’s parting curse on our peoples to go with the economically illiterate and graceless Brown – we note they are happy to shell out £Billions to fund the folly of their cronies who lost money gambling on property.

If N.I.C.E. is allowed to survive perhaps it should ask its fellow QUANGO cronies & Northern Rock for the money needed to bail out the incompetence of the present Government’s mismanagement of the NHS.

You may be Challenged by a Urology cancer but you are not alone – join us at our help site with over 2,500 pages of information to help you and a Forum to ask and help.

Warm Hands,

Greg L-W.

My reaction to this disgraceful by N.I.C.E. can be found here

http://www.kidneycancerresource.com/index.php/User:Andy.thomas/BlogEntry:_2008_August_11_20:29:20_BST

I once read that a civilised society is defined by the way it looks after its minority groups. I am 46 years old and belong to the minority group that has Metastatic Renal Cell Carcinoma. I am however one of the lucky ones. I take Sunitinib (Sutent) and after only one full cycle of medication have seen a small reduction in the size of the tumour.

The argument from NICE as I understand it is that the money would have been better spent elsewhere. Being able to perform 6 hip replacements for the cost of a cancer sufferer’s treatment for a year is an example often cited. Now don’t get me wrong, I would not wish to deny anybody any treatment they need. But I wonder if those 6 people would be happy to have new hips (for example) if they realised the cost was the death of a person with kidney cancer.

This decision by NICE is particularly cruel because this is the only effective treatment available to Doctors and their patients. There is no alternative. And, it works. When I was first prescribed Sutent I was told it was revolutionary and they were seeing ‘amazing’ results. But now Kidney Cancer suffers and their families not only have to cope with their disease. They will also suffer even greater torture in the face of this decision. I doubt very much if a single person at NICE who is involved in this, or a single one of you who subscribes to the argument that money is better spent elsewhere, has had to look a spouse or a child or a parent in the eye and tell them they are going to die of Kidney Cancer, an effective treatment is available, but you can’t have it! Maybe your opinion would be somewhat different if you did?

Personally I find it even more galling that this has been announced in the same week the government has announced a £3billion bail out for Northern Rock. A bank that found itself in trouble because greedy bankers wanted more profit out of dodgy, sub-prime American mortgages. And in the same week Gordon Brown announced plans to give every family in the country a £150 energy bonus. Costing us, the taxpayer over a billion pounds. These are just two examples. I’m sure there are many more (the war in Iraq, the 2012 Olympics. Need I go on). So don’t tell me there is no government money available. There is somehow, always money available when it can swing a few votes.

Who sets the cost of a life anyway? Who says my life is worth £35,000. I say it is worth more. And the thousands upon thousands of people who have raised tens of millions of pounds towards research. Who at NICE will tell them that all their efforts are for nothing and they have all wasted their time?

So I say this. If this decision goes ahead we will all suffer. You will suffer. Because we as a society, will have failed one of our most vulnerable minority groups. Because when these people who are sick and in need turn to you for help, you will be saying, even though a treatment exists your life is not worth the nominal price that has been put on your head. And when you or your loved ones are most in need, who in our society will stand up to help you?

This decision by NICE is wrong because it is cruel, because it is torture and because it is immoral. If it goes ahead our society will be the poorer for it and we will all suffer as a result.

I don’t want pity, I don’t want condolences, I don’t want apologies. I want LIFE!
Neil Haines

Cancer research has been close to my heart ever since my Nan passed away after suffering terribly with cancer. It showed me that cancer is not a nice disease to get and that everything possible should be done to ensure no-one else suffers from this disease unnecessarily. A price should not be put on treatment that could potentially save or prolong a human’s life, life is too short as it is anyway. My brother-in-law (Neil) has cancer, he is in his early 40’s, never smoked or drank to excess, he keeps himself fit enjoying rambling etc. He is just approaching the end of his second period on Sutent. After his first period on Sutent the tests showed there was an improvement and we are all hoping and praying that he will have even more positive news when he has the next tests. Cancer isn’t a pleasant disease we all know that and it does not make sense who does and does not get it. With the comments posted on this site so far, surley it strengthens the case to continue the research, clinical trials and make the drugs freely available to everyone who needs it on the NHS.

If there is someone clever enough out there to do it, can you please get an online petition together so that the country can rally together and put pressure on the government to help?

NICE PLEASE do the right thing. At the moment you are proving not to be very NICE!!!!

In the past 6 years i have lost 4 loved family members to Cancer, a vile evil disease.
to this end i have always contributed to help research, but what is the point.
When all you here of is treatments are not available due to cost.
There is almost a daily mention of someone in the UK who is refused the right to life due to BUDGETS.
We have the cure, but its only for the rich.
A wake up call is needed for the powers that be, the ordinary person pays for this research and we have the right to use what ever we can to keep a loved one alive.

I have just attended the appeals panel for my brother who is suffering with Kidney Cancer, his Oncologist asked for the drug Sutent to be provided for him. He has been turned down. He has been so brave throughout all this and just wants the chance to live as long as possible. He has a young family, baby only 1 year old and just wants to give her some memories of him. How can NICE be so heartless. When are we going to start looking after our own as a priority in this country. I feel ashamed of Britain’s NHS. The people that work in this organisation are just brilliant, but they are undermined every step of the way by this inept government and all their quangos.

I am a 44 yr old from south wales who was diagnosed with Advanced Renal cell carcinoma with mets to the lungs in Jan 2008.My Oncologist put me on Temsirolimus(Torisel) and this has helped reduce the primary tumour and the mets have reduced as well.I have paid Tax and Ni for almost 25 years and now that I really need the help of the Nhs/Government ,it looks like fron Jan 2009 I will begin my Death Sentence.I hope Nice will reconsider it’s decision and do the right thing.I am ashamed of this Country I live in.I find it hard to understand that these drugs are available in other parts of Europe but not in the UK-Very strange indeed!!!!!Why should People with Kidney Cancer be Penalised because it is a “Rare” Cancer.I’m fairly certain that if the people at Nice had relatives with this type of cancer then perhaps things might be different!! Let’s hope common sense prevails and that these life extending drugs are given to all kidney cancer patients in the United Kingdom.Dave Williams,Cardiff,UK.

The following was sent to The Daily Maily ‘debate’ pages:

NICE Decisions.

I have today 7/8/08 read the article by Dr. Martin Scurr regarding the drug for Kidney cancer. My comments here are not drug related, but do have relevance to decisions made by NICE.

March 2005 the NICE Interventional Procedure Guidance 118, para. 2.1.1,

High intensity focused ultrasound (HIFU) may be used to treat carcinoma of the prostate, either as a primary or salvage therapy.

In the following: IPG118 High-intensity focused ultrasound for prostate cancer information for people considering the procedure, and for the public, pg. 8 March 2005.
What has NICE decided?
NICE has considered the evidence on high-intensity focused ultrasound for prostate cancer. It has recommended that when doctors use it for men with prostate cancer, they should be sure that:
• the man understands what is involved, and that it’s not clear how the procedure affects men’s day-to-day lives or how long the effects last
• the man understands what alternative treatments are available to him
• the man agrees (consents) to the treatment, and
• the results of the procedure are monitored.

In Prostate Cancer: diagnosis and treatment CG 58 Feb. 2008 pg. 27

HIFU and cryotherapy

HIFU and cryotherapy have recently become options requiring evaluation.

HIFU and cryotherapy aim respectively to eradicate prostate cancer by heating the gland using ultrasound or by freezing it. Both technologies have been the subject of NICE Interventional Procedure Guidance on their use as primary therapy and for men with recurrent disease (NICE 2005a, 2005b, 2005c). Although they have been assessed for use on the basis of safety and efficacy, the guidance documents drew attention to the lack of evidence on quality of life and long term survival.

Pg. 28

• High intensity focused ultrasound (HIFU) and cryotherapy are not recommended for men with localised prostate cancer other than in the context of controlled clinical trials comparing their use with established interventions5.

Qualifying statement: There is insufficient evidence of the clinical and cost effectiveness of cryotherapy and HIFU in comparison to established interventions to recommend their routine use.
On page 29, HIFU subheading, the report lists a number of published papers, from these concludes: “Follow up n these series was short, most had a median follow up of less than 2 years…”. Not considered by NICE was a paper published in the European Journal of Urology, Oct. 2007: First Analysis of the Long-Term Results with Transrectal HIFU in Patients with Localised Prostate Cancer. The mean follow-up was 6.4 yr (1.1). The article concludes: “This study demonstrates the effective long-term cancer control achieved with HIFU in patients with intermediate-risk localised prostate cancer”.

My point in writing this is to express my concern for those suffering from prostate cancer,that are now denied HIFU treatment unless they can get on a trial. I was referred for the treatment about a year ago when it was decided that my cancer was not fully cured by radio-therapy 6 years ago. Treatment was carried out at Stepping Hill Hospital in Stockport; one of only two hospitals in the UK using the “Ablatherm” technique. The procedure was carried out November 2007, a prostate biopsy six months later showed “no residual tumour”. OK, this is not a ‘long term’ result, but how good is the news for those that receive the treatment.

It would be interesting to learn:

a. The Nice justification for its reversal of the 2005 decision in the light of the evidence in the EJU 2007 paper, which does not appear to have been considered.
b. How much evidence is required before procedure is approved for general use.
c. Is anyone putting on pressure to revert to the 2005 decision?

Finally, my web research reveals only one clinical trial active currently, in two locations:
1. Stepping Hill Stockport.
2. The Royal Marsden London

Recruiting 50 patients to end 30/4/2009, both under the Chief Investigator, Mr. Stephen Brown, Stockport NHS Foundation Trust. So, it is going to be some years yet before we see the results of this trial, in the meanwhile, thousands of other prostate cancer sufferers will be denied the treatment until NICE change their decision.

Brian Robinson

nice , my cousin neil has been through a hell of alot ,
Neil is in his 40s ,never smoked or drank to excess,a fit strong man, but nothing can prepare you for the diagnosis of any sort of cancer , neil has been on sutent for a few months and already scans have shown a reduction in clusters within his lungs.SUTENT has given us all alot of hope and we all pray that funding is not withdrawn.I will be writting to my MP and i urge everyone to do the same .SUTENT is giving mums, dads, brothers ,sisters ,aunties ,uncles ,cousins, neices nephews,nans, grandads ,friends alot of hope please please please do not withdraw funding for SUTENT.Please do not put a price on someones life .

I have looked at medaiduk website. If its a proper and above board organisation then
absolutely marvellous. At last somebody is doing something positive to solve the
problem since it seems like the NHS cant/wont .
Get rid of NICE and put the 30million it costs the tax payer into monies for drugs for
these and other cancer patients. Put the monies into this charity.
As much as it disgusts me that the NHS will not pay but should pay. We cant stand by and let these cancer patients not receive these drugs.

Nice – Please, please for heavens sake do not take away the funding for these very important drugs. My Cousin has been on Sutent, and has seen positive results. He is in his early 40’s and should be given every chance to beat and/or keep this terrible cancer under control.

here are the details – http://www.medaiduk.com

[Edited by Kat Arney, Cancer Research UK, to add – Although this website sounds like a great idea, it is unclear as to who is running it. It also doesn’t appear to have charity status. As such, we’d advise people to be cautious, and we do not endorse it. Cancer Research UK is not responsible for the content of external internet sites.]

LOOK AT THIS – Found new website setting out to help pay for cancer medication – check it out

Have tried to put a comment on NICE website and guess what.
IT DOESENT WORK. Just about sums it up

GET RID NICE

my husband has advanced RCC but is not yet ready to be treated at the moment. He will need this soon. I worked for CRUK for 7 years but in all that time from correspondence I read, people were getting all the treatment they needed until the end. What is the point of paying researchers to come up with new drugs if they arn’t used. Most new drugs will be expensive now, it is costly development, but if it saves a life for a while then it should be used. I agree with comment above that we need to be heard as ONE voice and lobby Dept Health or NO 10. Has anyone tried to put a comment on the NICE site as they have urged us to do. It is impossible to find the relative place to post. Contrived. Call me cynical. I want my husband to be around as long as he can be with the best possible chance of long survival. Come on, lets get started.

Yet again, I have been appalled by the recent interim decision of the National Institute for Clinical Excellence (NICE) to ban the drugs Beracizumab, Sorafenib, Sunitinib and Temsirolimus for patients who suffer from kidney cancer. It is particularly unfortunate since kidney cancer incidents are rarer and there are not too many practical alternatives.

These drugs offer patients the chance of an increased life span and potentially a better quality of life for the time they have left with their families. It is certainly a heartless and compassionless decision and it has clearly been made on cost grounds and not clinical efficacy grounds. Indeed, Professor John Wagstaff of the South West Wales Cancer Institute has codemned this decision as being outrageous and a devastating blow.

This is in contrast to the situation in continental Europe where these drugs can be prescribed for their patients. One way to help is for anyone to pressure their MP about this appalling decision and it’s easily done by going to http://www.theyworkforyou.com and sending them a message. I know from experience that if enough people do this then the politicians start to sit up and take notice.

MY HUSBAND HAS BEEN DIOGNOSED WITH KIDNEY CANCER WHICH HAS SPREAD TO THE LUNG, HE WAS HOPING FOR SUTENT BUT HAS NOW BEEN OFFERED INTERFERREN.WHERE IS THE JUSTICE WHEN WE HAVE THIS DRUG TO EXTEND LIFE AND EVERY DAY IS SO PRECIOUS, HOW CAN ANY ONE WITH AN ONCE OF COMPASSION IN THEM SAY ITS NOT COST EFFECTIVE. MONEY HAS BEEB SPENT ON ITEMS SUCH AS SEX CHANGES TUMMY TUCKS WHICH ARE NOT LIFE THREATENING, MY HUSBAND WHO IS 66YRS OLD, HAS PAID THOUSANDS OF POUNDS INTO THE N.H.S.WORKED ALL OF HIS LIFE AND HAS NEVER BEEN ILL OR CLAIMED OFF THE N.H.S. HE HAS BEEN SEVERLEY LET DOWN IN HIS TME OF NEED FOR THE CANCER DRUG SUTENT.PLEASE HELP MY HUSBAND AND FELLOW SUFFERERS,THEY ARE WORTH EVERY POUND IT COSTS.

MY HUSBAND HAS BEEN DIOGNOSED WITH KIDNEY CANCER WHICH HAS SPREAD TO THE LUNG, HE WAS HOPING FOR SUTENT BUT HAS NOW BEEN OFFERED INTERFERREN.WHERE IS THE JUSTICE WHEN WE HAVE THIS DRUG TO EXTEND LIFE AND EVERY DAY IS SO PRECIOUS, HOW CAN ANY ONE WITH AN ONCE OF COMPASSION IN THEM SAY ITS NOT COST EFFECTIVE. MONEY HAS BEEB SPENT ON ITEMS SUCH AS SEX CHANGES TUMMY TUCKS WHICH ARE NOT LIFE THREATENING, MY HUSBAND WHO IS 66YRS OLD, HAS PAID THOUSANDS OF POUNDS INTO THE N.H.S.WORKED ALL OF HIS LIFE AND HAS NEVER BEEN ILL OR CLAIMED OFF THE N.H.S. HE HAS BEEN SEVERLEY LET DOWN IN HIS TME OF NEED FOR THE CANCER DRUG SUTENT.PLEASE HELP MY HUSBAND AND FELLOW SUFFERERS,THEY ARE WORTH EVERY POUND IT COSTS.

As my mum has said above, my brother is in the early stages of taking Sutent which has slightly reduced the numerous clusters in his lungs, I pray to god this will continue. Just from the posts above there is a 12 year old child here today because of these drugs. A husband who after 18 months is alive because of Sutent. These are cases where life has been extended by more than just a few months. And I’m sure there are many other cases where lives have been extended. Isn’t that what all the research and work is about, helping people live longer? Nice – how can you deny others that chance????? How do other countries do it? What is the point in trying to find treatments for this evil disease if patients are then denied them? I really don’t understand? NICE – PLEASE DO NOT TAKE THIS CHANCE OF LIFE AWAY!!!!!

This decision should open a wider debate about standards in the NHS which have for example ensured that 5 year survivial rates for prostate cancer in the UK are 51% as against 74% in France (Lancet Oncology). The problem is not lack of money but waste of money. The patient has no control over the waste of money but is directly affected by the refusal to fund treatment, the natural result of the waste. The decision not to fund the kidney cancer drugs is a devastating blow to every person affected by cancer and to everyone in their families, to friends and to the doctors who must now be leaving urology and oncology in droves.

The only way to express anger about the waste of money is to ensure that there is a vote of no confidence in the government’s handling of the NHS. You might like to write to your MP and ask why the only thing that excludes you from the NHS is topping up. Ask your MP to explain why you can buy medicines over the counter and remain in the NHS, you can assault doctors and nurses and you will not be excluded, you can buy illegal drugs and still obtain NHS treatment and yet as a vulnerable cancer patient you cannot receive NHS treatment if you admit to obtaining non-funded cancer drugs, unless presumably you say that you are addicted to them.

As a patient you can vote with your feet, withdraw from the NHS and go to another European country with a better survival rate for kidney cancer. It will not be difficult to find a country with better survival rates than the UK in fact it will be hard to find one with a poorer survival rate, underlining the fact that this is not about money it is about the inefficiency, ignorance and waste of money which is depriving patients of effective treatments.

Iam a mother of a wonderful son who is oourageous caring and brave, through no faujlt of his own he has developed kidney cancer and it has spread to his lungs. He is at present on his second dose of Sutent and after the first period his scan showed a slight reduction in the clusters in his lung. This gave us something to cling onto and some hope. Anyone who has been near or in contact with cancer would know the feeling of utter despair , – not being able to help. For Gods sake please fight for these drugs it is morally wrong to give people a life sentence – ev ery life is precious.

Iam a mother of a wonderful son who is oourageous caring and brave, through no faujlt of his own he has developed kidney cancer and it has spread to his lungs. He is at present on his second dose of Sutent and after the first period his scan showed a slight reduction in the clusters in his lung. This gave us something to cling onto and some hope. Anyone who has been near or in contact with cancer would know the feeling of utter despair , – not being able to help. For Gods sake please fight for these drugs it is morally wrong to give people a life sentence – ev ery life is precious.

If NICE didnt exist think about all the extra monies that could be spent on patients instead of all the beuracracy and hot air that comes from this organisation and empty suits employed by it.
If europe including much poorer countries than ourselves can provide these drugs THEN WHY CANT WE?

Instead of saying no why isnt NICE saying yes and hears how were going to do it.

GET RID OF ALL THE OVERPAID BEURACRATIC EMPTY SUITS
GET RID OF NICE

I am a doctor whose mother recently died from cancer. So why do I so strongly support NICE in their decision? It’s because the world’s resources are not limited, and therfore we have to ask how expensive something costs before we refuse to fund it.

Suppose that the drug companies were asking £1 million per patient for a drug that was clinically proven to add just one month to that person’s life? Would even the most insistant amongst us who says “no matter what the cost, if it adds extra days to someone’s life we should give it them” agree the pricetag was excessive?

What if the price was £1 million per patient for an extra year of life? What about if it was say £100,000 per patient given an extra year? Because, given that not everyone who is given these new drugs responds to them, when a doctor prescribes them, he is paying, not just for the patients in whom it works, but in the others for whom it doesn’t work. When you factor in the cost of treating patients with the new renal cancer drugs who don’t respond (which NICE obviously has to do in order to calculate cost-effectiveness), the drugs come out much more expensive than if they worked for everyone, because they don’t. Maybe around that figure of £100,000 per person per year in fact. Enough to employ four nurses for a year perhaps.

An almost separate issue is the harm done from these drugs, not just the long list of side effects, but the harm done to people who read the stories of those fortunate enough to gain several months and assume it will happen to them too, only to be bitterly disappointed, because their hopes have been raised excessively.

I have enormous sympathy for anyone affected by NICE’s decision, but I’m glad someone is doing their job (and how few of us would want it to be us!). Because if NICE didn’t exist, and one day a treatment costing £1 million for an extra month came along, we’d be obliged to accept it. The questions for society are, how much do we want our country to spend on healthcare, and if we are not satisfied we are already spending enough, how much would be “enough”, and who do we suggest should pay the difference.

I don’t work for NICE, by the way.

Thanks to everyone who took the time to comment. We’re still collecting your views to add to our representation to NICE on the matter, so please carry on posting.

We’d also like to clear up a couple of misconceptions about Cancer Research UK’s achievements from one of the comments above.

Temozolomide and platinum drugs
Temozolomide (aka Temodal) was first made by Professor Malcolm Stevens back in 1962, with funding from Cancer Research UK. We also played a vital part in the subsequent development of this drug, funding the first early clinical trials that showed it was active in patients with glioblastoma, and we are rightly proud of this work. There is a history of temozolomide on PubMed

In 1999, we licensed the drug to Schering-Plough and it is now used to treat thousands of patients around the world with glioblastoma, an aggressive form of brain cancer. Cancer Research UK receives a share of the royalties from sales of temozolomide, which we re-invest in our research – obviously, as a charity we don’t have shareholders.

Furthermore, we played a fundamental role in the development of the platinum-based drugs carboplatin and cisplatin. We funded Alexander Haddow’s group at the Chester Beatty Institute (now The Institute of Cancer Research), including Tom Connors who carried out research showing that cisplatin was highly active against cancer.

He also began the search for a less toxic alternative to cisplatin. This work was taken forward by Ken Harrap’s Cancer Research UK funded team, ultimately leading to the development of carboplatin in collaboration with the Institute of Cancer Research, Johnston Matthey and Bristol Myers Squib.

Our research and achievements
It’s also worth bearing in mind we don’t just fund grants to study cancer drugs. We also spend millions of pounds on research into other ways to treat cancer, like surgery and radiotherapy, as well as into prevention, screening and diagnosis. And around 40 per cent of our spend goes on research to understand the fundamental biology of cancer cells – how they work, and how they go wrong.

There’s more about our achievements in all aspects of cancer research – from fundamental cancer biology to clinical trials, screening, prevention and psychological research – on our achievements pages

We’ll be updating these shortly as we’re currently pulling together many more examples of the impact our work has had.

Salaries
We couldn’t expect world-class scientists and staff to work for nothing or in, poorly-equipped buildings, while also expecting to make progress in our vision to beat cancer.

We have to benchmark salaries against market rates as well as the charitable sector. This helps us arrive at appropriate salary ranges which will attract and retain the best scientists, doctors, nurses, fundraisers and others, while ensuring appropriate levels of charity expenditure. All of the staff at Cancer Research UK are working hard to make a difference for people with cancer – whether that be in discovering new drugs, treatments and screening techniques or lobbying on behalf of the public for better cancer services.

Kat

“All singing from the same hymn sheet… GET RID OF NICE” ??

Nonsense. I think you’ll find some of the most intelligent and well written responses come from people whom may not necessarily agree with the decision but understand the complexity involved in making such a decision.

Do people not understand the limitation of resources? The vast expenses in development that require paying for?

10,000 potential drugs fail in their development stages. Every single one of them requires a great deal of effort by well educated and highly trained staff. Do you not believe if there was cheaper way the pharmaceutical companies would do it? Do you really believe NICE want people to die? I sincerely doubt it.

NICE are human beings just like yourselves, vunerable and have famillies like your own. I imagine many of them, like us, have lost people close to them through cancer.

You can march on the streets and blame them for everything including petrol prices but ultimately you’re just venting your frustration at what is largely an ethical organisation that exists for your benefit and serves you as much as it can (flawed as it may be).

My last post and again my sympathies. But I emplore you to perhaps consider reading deeper into the situation. Oh and I don’t work for NICE or have any direct dealings with them.

2 days ago Alan Johnson launched a review and confirmed that the NHS is currenlty over paying on drugs by over £500ml. My Dad needs this drug and we’re doing all we can to fight for access to this drug for him and the the other sufferers. In total, provision of Sutent would cost £81ml per year, which, minus the 16ml that would be freed up from people who would switch from their existing drug, would mean a total oultay of 65ml which is over 7 times less than the current over charge figure and a drop in the ocean compared to other non-critical expenditure. Also, as PCTs only “negotiate” at a local level with drug companies like Pfizer, it means they cannot command decent discounts , so are paying close to “list” price. NICE have clearly made up their mind on this and are slanting facts and figures to support their case, we’ve got 3 weeks to fight this, so it’s up to us and the media to turn this unethical decision around.

Seems like were all singing from the same hymn sheet. NICE is not working.
We need a fairer system. We need an organisation that helps people not hinders them.
We need an organisation that can ‘think out of the box’ an orgainisation that is creative in its approach to solutions. An organisation that is independant from any governmental pressure. An organisation that is clever enough to stop these blood sucking drug companies from making massive profits out of peoples misery. An organisation that comes up with solutions. Cancer charitys, General public, Scientists, Doctors have got to band together to get rid of this monstrous organisation. Cancer affects most of us we need a win win solution.
GET RID OF NICE

Although the decision is bound to disappoint some, and I feel very much for the people affected, I think that (from what I can gather from news reports) at the end of the day this is an expensive drug which will extend lives only by a couple of months, rather than save them.

In my view – and given that health budgets are always tight – it is better to spend the money elsewhere, on making available the drugs which have the potential to cure conditions outright, or extend life by a longer period than a couple of months.

In January 2007 my husband who has advanced RCC was very ill and expected to live only a matter of weeks. We were very lucky to be able initially to fund Sutent ourselves and even luckier after much effort to persuade our PCT to fund the drug. My husband has now been taking Sutent for over 18 months.

That my husband is alive at all today is a testament to the potential benefits of this drug. Furthermore, although he is poorly Sutent has relieved him of the worse paraneoplastic symptoms that he was suffering. We have been lucky to get the drug and it saddens us that others will now be denied the opportunity to experience the benefits it can clearly give.

I understand that difficult funding decisions may have to be made but am very concerned that this is the wrong decision made on the basis of flawed analysis. The rarity of this condition makes data gathering difficult and I understand that clinical trials data is compromised by the fact that patients in the control group were also given the drug once its potential benefits were clear and after it would have been ethically inappropriate to withold it from them. As a consequence I am convinced that the benefits are being seriously understated.

It has taken NICE over 2 years since Sutent was licenced to review this drug and come to what I believe is a flawed conclusion. During that time a significant number of pateints will have been denied the drug and will have died. Surely we need a different system for assessing drugs which treat rare but terminal conditions that defaults to allow them to be funded until the clinical benefits can be fully assesseed in use, and prescribing protocols can be developed to target patients who can tolerate and are benefitting from the drug. Perhaps some cost sharing approach could be negotiated with the Pharma companies during this period?

The lack of logic around the NHS is incredible to me
either everyone pays in and when it is needed it pays out
or it is a 2 tier system – one for rich and one for poor
because if the NHS will not pay then clearly people who can afford it are going to buy the drugs – they are not just going to accept death because NICE says so

The Issue of ecconomics has to be looked at differently in my view
what you should not be rationing is life sustaining treatment
and yes there are many things that can be rationed instead
many nurses and drs could give you numnerous examples
just to kick off when building the new hospital in Birmingham they have build the rooms for the scanners the wrong shape and size
so they have had to order scanners to be custome made to go in the rooms
how many patients lives will that have cost?

In many poorer countries they can afford things we in the UK cannot
we can afford to spend billions on games and Ministers expenses etc

and finally if the NHS wont pay why are people left with no options? surely they ought to be able to pay themselves without loosing NHS treatement as is currently the case

Some questions, is NICE funded by the NHS (Us) How much does it cost US per annum to support them and their decisions? How much has been spent on the NHS computer system which doesnt work? I do not know the answers, but I would think it a fair bet that the total of the two costs would pay for these drugs several times over. If anyone is clued up on these costs, I would ask that these costs be published on these pages.
With all of Europe, North America, South America,s citizens are provided with these drugs, after long clinical trials, why not follow their lead, and dispense with NICE altogether.

Back on again im so livid and angry. My parents fought in the war and fought for the NHS. (Not like the empty suits in NICE) I want to orgainise all cancer victims for a better deal.
Lets mobilise and walk on downing street. There is so much we can do if we all stand together. There are millions of people in the UK who have been touched by cancer.
We have fantastic brains in the country (We have fantastic scientists working so hard to cure this and in some areas we are nearly there. We also have fantastic doctors working so hard to treat patients)) I just do not believe we cant sort out something better. If you want change. Change to the whole bloody system including changing the way the drug companies work then lets do it.
Can somebody in charge of this website set something up so we can get together and do something. (No party political members just clever, motivated people who are not in anybodys pockets) WE WILL WIN THIS WAR AND CHANGE THIS MADNESS

I feel like i live in nazi germany. why not stop giving patients who have cancer any drugs at all and have done with it. Think of all the money the remaining population
would have to spend on things such as tvs, cars ,,holidays meals out ,UNTIL CANCER GETS THEM!
GET RID OF NICE AND FIND SOME SYSTEM THAT WORKS TO HELP ALL CANCER PATIENTS AND THATS CRACK ON TO CURE THIS EVIL DISEASE.

i am appalled by NICE decision to withdraw funding for these life saving drugs. how much value do they put on human life, how dare they say that someones life is not worth saving. they get to play god in their expensive suits. would they re consider if their nearest and dearest had this disease.
and by the way the nhs was originally set up to help the poorer recieve the treatment needed and EVERONE would have the chance to lead a healthy life. we seem to be going back in time not forward, as now only those who can afford to buy these drugs will have the chance for a future.

my son is 12 years old, not 40,not 70, he does not fit the “norm” of what catogorey of patient gets kidney cancer, but a teenager with reocurrant RCC, 4 tumours in total and sunitinib has extended his life capacity. his medication has caused shrinkage in the tumours and his disease is stable at the moment and with out sunitinib i truly think he would not be here today.

NICE need to re think theyre stratogies and research further and collate information from those who take these medications.
Pharmacutical companies do always start high in processing these medications and with time the price will come down. if europe and america can give out vital medication then Britain can too.

I had kidney cancer, which after being clear for 12 months, returned with a vengance on my liver !!! My type is even rarer (Chromophobic – 2% of kidney cancer types). I was put on Temsirolimus/Torisel for 6 months and in that time my tumours (YES PLURAL !!!) shrunk by 17% enabling me to have a liver re-section in May 2008.
If God forbid it comes back….I will have no option of anything because due to the type of cancer I have had, any remaining drug available will not work for me….
N.I.C.E. will pay money out for treatments to create a life, pay money out to stop a life, but those all ready here in need of help…….”TOUGH S*$@ !!!”
You will allow money to be spent on ‘self-inflicted’ diseases (but hey…..you have targets for that…)
Are any of these decision-makers in a PrivateHealth Scheme…..if so, and God forbid this happens to them…..will they get the drugs that we are being denied ?
You are stating that we are not worthy after all the taxes we have paid into the NHS. I and others with these diseases cannot get Private Health Insurance due to a ‘pre-existing’ conditions……
HAVE A GOOD NIGHTS SLEEP…..that’s something else you have deprived us of……..

This is a basically flawed decision by NICE which needs turning round based on exceedingly old and outdated information. Yes, they are killing people legally! Kidney cancer patients need to mobilise and lobby their MPs, write to drug companies about excessive costs and lets get a bit militant about this! Anyone with a cancer diagnosis knows the cost in real terms of losing pay or your job when cancer strikes. Come on everyone with a diagnosis of kidney cancer, lets rally and organise, march on NICE and Downing Street, send photos and letters from our families…. always remember that while you are alive there is hope of regression – it has happened to me, and although my cancer has since returned, I still have more than a fighting chance as long as I am not denied the life extending and saving drugs which are readily available for the chosen few.

NICE are not very nice. Please cant we get rid of this abissmal organisation.
There not fit for the purpose. Can somebody somewhere come up with a better alternative than this cruel abhorent system of judging who lives or dies.

CRUK has got a ton of all of our money and what drugs have they ever made. They fund expensive salaries and grants and claim temodal was theirs when it was made in germany, and that platinum had something to do with CRUK when it does not. It is about time CRUK is measured by what it does, not the money they have in the bank to fund expensive salaries and premises.

My husband has kidney cancer which is cuurently stable after taking the drug interferon.However this has caused him severe depression and has had to be stopped.
The withdrawal of these drugs is outrageous. He has paid into the NHS for 50 years. I have been donating to cancer research for many years-but today I have cancelled my direct debit. No longer will I contribute to the development of new drugs.

I wonder if the key decision makers, thoses who have the final power of veto or admitting a drug to be licensed for use for a given treament… I wonder, if it were a close family member of theirs a spouse, a child, a parent, a sibling, who were living with metastatic renal cancer and this new glimmer of light came along, would they be so quick to extinguish that light then? If that ray of hope were the only hope of someone near and dear to them would they be so quick to dismiss it as ‘too expensive?’

What price human life? How does one quantify the worth of a human being? What makes one cancerous condition more worthy than another? Surely there should be no limits on prolonging/promoting/improving human life lessening suffering? It is wholly unacceptable that a promising treatment should be discounted simply because of its rarity… if it is so rare, then shouldn’t the authorities who make these decisions thank their lucky stars that an ‘expensive treatment’ isn’t required on a widespread basis, but just to the unfortunate ‘rare few’ who need the treatment?

Bottom line, if a treatment can hlp but ONE human being, then no-one has the right to stand in the way of that. All life is sacred! All life is priceless. I pry that the powers that be will rethink this decision and have a heart. It could be their nearest and dearest next….

Looking at the bigger picture here, we can’t blame NICE for everything… Unfortunately this looks like another example of the Pharmeceutical industry giants showing that they’re evidentally more interested in profits than human life. That said, it would be nice if NICE would show more compassion in their decision, which apparently is not only based on costs, but on the ability of the drugs to add ‘quality of life’ – Surely that’s something that can be judged on each individual case? The thought of potentially having a few months of life with family & friends is not something we should even be able to place value on!
But wouldn’t it be interesting if they (pharmecuetical companies) actually published an honest break down of what it costs them to produce these drugs, and how they manage to sleep at night reaping the ‘benefits’ of people’s misery? It would probably severly test our faith in humanity.
I suppose this isn’t a huge surprise having heard various accounts of patients in the past, but this further highlights the urgent need to address the balance (or lack of) between money and morality. How much does a life cost? Too much?? Solution: Tax these illegal drugs that our children seem to have such easy access to, and free up some of the resulting funds to pay for any shortfalls.
Ultimately, I’m bitterly disappointed for kidney cancer sufferers and their families at this decision, and hope this doesn’t dampen their spirits too much.

NICE, please support (y)our people!!!

I very much doubt NICE make any of these decisions lightly and I think Adam Smith’s above post sums it up beautifully so I will make no attempt to add his post.

Unfortunately we must face some cold hard facts. The NHS does not have infinite resources. The funding does not exist to provide ideal care to everybody all of the time. I’m sure mismanagment is an issue but this is the reality of the situation.

What we are then left with is a system of “triage” where resources are pooled in order to protect the majority at the expense of the minority. This happens everywhere in medicine. From front line nursing (from which the phrase triage derives) chosing which soldiers are worth treating through, to intensive care units where “do not resuscitate” orders are issued on the basis of cost to benefit ratios and through to NICE’s decision on which drugs the NHS can afford. In this case renal cancer fighting drugs.

Whilst I cannot begin to express my sympathy for those of you who have commented and this decision affects this should not be forgotten. This decision will cost lives. But the intention is that the resources provided by this decision will save more. As someone who has lost a close relative due to NHS failures and a new member of the clinical research community let me reiterate that these decisions are not made on a whim.

It’s unfortunate but in modern medicine everywhere human life has a value. But in my opinion it is only weighed against the needs of others.

This decision by NICE just sums up this country at the moment.It always comes down to cost but no one thinks twice about how much money is sent abroad and looking after asylum seekers over here. It is disgusting how people are being treated who have paid into this country with Tax etc.

Who are these “faceless” beings that think they have the power to play God with our lives? How dare they think they have the right to decide who lives and who dies. These are desperately ill human beings who are clinging on to the hope of a preventative cure for this violent and tragic disease. What has gone wrong with our society that everyting revolves round the “filthy lucre”? I bet if a member of their family were suffering it would be a different matter. We are growing – no that is wrong – we ARE a heartless society, where money is the God of all evils, and to hell with the old, sick and infirm, as long as these “faceless” beings are in the comfy overpaid existences. The rest of can go to hell. Having done the Walk for Life and contributed so much to Cancer Research, I am appalled that this has even been given airspace.

The cost of these life-saving drugs should be seen in the light of a) the profits of the pharmaceutical companies and b) the waste of resources in some sections of the NHS especially in non-clinical functions, repeated reorganisations and time wasted by high paid staff in endless meetings.

I have had breast cancer and had to pay to get another drug that NICE refused to pay for. But I’m one of the lucky ones, still well more than 3 years on.

Today’s decision from NICE is appalling and deeply shocking – but sadly not surprising. Decisions like the one made today are simply morally wrong, and should have no place in our society.

My best friend Joan (66) was diagnosed with Kidney cancer last September we had to fight for the drug sutent which she is currently on and she is now in remission, her kideny could not be removed but she is responding well to these drugs.
how is it that everthing in life is about COST EFFECTIVENESS and NOT NEED!! I find this totally disgusting how these people play god with lives what has happend to Human rights and the country in general.

I am a kidney cancer patient who has been on Interferon but needs Sutent or Nexavar to curtail further growth of tumours following nephrectomy and splenectomy,as I now have a tumour in remaining kidney.I am dismayed by the NICE decision which is taking away hope from kidney cancer sufferers.Can they sleep at night when in effect are dishing out death sentences to many of us ?! It is apparently cost-effective for RCC patients to receive these drugs in far-flung places such as Mexico,and if we go to France there is no problem.Think again please NICE.

Why bother developing ground braking drugs when in our country commitees of people decide weather or not you are eligable down to cost!

My father has kidney cancer, Cancer is cancer …surley all cancers should be treated?…not only do you have to come to terms with the fact you have Cancer ,battle it,,then be told that the drugs that can prolong your life are not available…it stinks!

My father is on sutent and i am very very gratefull to our pct, its shown shrinkage and stabel disease what more evidence do NICE need??? this is happening all over the world and uk that thease drugs ARE WORKING… but only in the uk do we have to fight to get them .
What happens now then do just accept that the standerd drug interferon is the only option, beacause its cheaper? its not as effective as sutent,sorrennafib, torisel so surley its a waste of money? but as we all know our NHS is a buisness and they are there to make money!
or do we fight for every cancer patient in the uk that are being denied the right to all cancer drugs across the board? why develop them? the doctors must be horrified to think and know that there are the drugs out there to help there patients and not be abel to pescribe them, surley thats what medicine and science is about “saving lifes “not giving you a death sentance!

Gordan brown s goverment get out there and stand up for all the cancer patients in your “Great Britain” who faught for their country,and payed into the system.

“maybe if the goverment started to look after our OWN a little more….
our pot wouldnt be empty!!!

just want to add..
Jane tomlinsons remarkable family .. She was an amazing insparation to our country and i praise you all…UNITY IS STRENTH.

I have been fundraising for Cancer Research for 30+ years and over this period of time our committee have raised many many thousands of pounds from sponsors,friends ect. This decision is appalling after all the work that has gone into research and people giving freely as much as they can to help this process. Hopefully Cancer Research uk have enough of a platform to try and make NICE see sense. I dont think the general public realise just how broke all the PCT’s and its this thats stopping the drugs being available. We NEED such a radical shake up in the NHS . All cancer and chronic disease cases should take priority over self inficted problems that clog up the A&E . They should be made to PAY.

Let us not forget that NICE has always taken a differnt course from other similar bodies in europe. This applies to NHS too. These cancer drugs are being sucessfuly used in other countries in more financial predicament than UK. This is a matter of how life is valued. This is just the mentality of the people themselves. This is just another post colonial mentality.

A very insensitive and tactless decision on the most vulnerable. Since I have been in this country there is no single day NICE or NHS is not on front line. This is not the case in other part of europe. There must be something they are doing better than other similar bodies in europe that bring them in the front line, or is the reverse the case? Another UK experence.

I have just completed my second cycle of Sutent, and would like to comment as follows. This drug has enabled me to return to work, and also suspend carers allowance. I am now paying tax, and my contribution to the business that Iam in directly results in our company paying an extra £100,000.00 in corporation tax. Surely a conbined payment by my efforts of approximately £120,000.00 negates the cost of keeping me alive.
On a personal level, how could NICE determine the date of my death.
The last point is that the treatment received at Christies, and Professor Hawkins and his staff has been superb, but what a slap in their faces this decision is. I wonder how long these research professionals will stay on these shores, as it seems that their efforts on our behalf has been undermined.

I HAVE KIDNEY CANCER WITH METS AND WILL NOW LIVE A VERY SHORT LIFE AS THE DRUG I HOPED TO GET IS NOT AVAILABLE NOW DUE TO POSTCODE LOTTERY AND FROM THIS LATEST INFORMATION WILL NEVER BE AVAILABLE TO ME DUE TO COST. THE NHS AND NICE HAVE GIVEN ME A LIFE SENTENCE TO TAKE EFFECT ALMOST IMMEDIATELY, PEOPLE ON DEATH ROW IN AMERICA WILL LIVE LONGER THAN ME. I AM VERY ANGRY TO THINK RESEARCH IS BEING DONE BUT THE HELP IT COULD AFFORD MYSELF AND OTHERS IN MY SITUATION IS NOT BEING GIVEN.

NICE shouldn’t be crtisized for making a decision based on available evidence that is held of high standard (and yes, NICE would not make a decision based on bad evidence and a poor model; and no, i don’t work for NICE or any pharmaceutical).

There are a number of considerations that need to be thought of, and the above article is misleading:

First, whilst it is obviously not ideal to prevent the funding of this novel drug, there are other considerations to be made such as:

Given there is limited funding available (i.e, a constrained health care budget), how would you suggest paying for the new treatment? Would you accept an increase in how much you pay in taxes? But wait, there are numerous other drugs and health programmes that also get rejected—how much of an increase in your taxes are you willing to pay given there are numerous programmes to fund?

Or perhaps you would suggest less funding for another health programme? But which programme? On what value system would you base that judgment on? What about the effects on those patients who loose from the adoption of this new drug because their drug is no longer funded.

The point is that allocation decisions are difficult, and this article only presents one side of the story; moreover, the article is acting like a lobby group, which looks remarkably the same as lobby groups in the United States. An no, NICE is not held ransom to a pharmaceutical, indeed (from my limited meeting with people who work with NICE) it seems the opposite.

It seems that the only people not losing out in this sad situation are the pharmaceutical companies who are effectively holding NICE to ransom. Yes drug development is extremely expensive (particularly for rarer cancers) and this should be reflected in drug costs. What I’d like to know is how much money these companies are also spending on marketing these drugs to what is essentially a small and specialist audience? How many more patients could benefit from these drugs if less was spent on glossy brochures for doctors, sales representatives and high profile media campaigns?

So it seems you can put a price on human life? You don’t get to choose the type of cancer you get (obviously most would choose not to get it at all) and it is extremely unfair that people with rare types of cancer do not get the same chances and opportunities with regards to treatment compared to people with more common cancers. It is not the patients fault there are less people for the clinical trials. Yes less people have metastatic renal cell carcinoma than breast cancer but does that make them less worthy of drugs? We now have 4 drugs that can extend peoples lives by a priceless few months. It is horrendous that patients will not be given treatment due to the high cost. What about all the time and money that has gone in to the research and development of these drugs? What a waste. I just hope cancer research supporters and charities such as Cancer Research UK can change this decision when the appeal goes ahead. Please let your voice heard!!