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This morning, the UK’s drug guidance body, NICE, announced its preliminary decision on whether the NHS should use four new cancer drugs – bevacizumab, sorafenib, sunitinib and temsirolimus – to treat people with kidney cancer that has spread (‘metastatic renal cell carcinoma’).

Despite clinical evidence that these drugs can actually help, NICE has decided that they’re too expensive. In essence, NICE doesn’t think that these four drugs are value-for-money for the NHS.

We’re very disappointed with this decision, and we feel it raises fundamental questions about how NICE evaluates cancer drugs, particularly for cancers that only affect a relatively small number of people.

NICE have stressed that this is a preliminary decision, and are undergoing a public consultation. Cancer Research UK will be making representations to NICE on the matter.

That’s why we’d like to hear what you have to say – if you have a strong opinion on this, please leave your comments below.

Clinical trials for rare diseases

The gold-standard method of testing whether a treatment works and is safe is the clinical trial – a careful look at how a new treatment compares against the treatments currently in use.

The more people enrolled on a clinical trial, and the longer it lasts, the more sure researchers can be about its results.

But only about a couple of thousand people every year are diagnosed with metastatic renal cell cancer*. And only one in ten people diagnosed with this stage of the disease is alive five years later.

So, for relatively rare diseases like this, it can take a long time to run trials large enough to gather watertight evidence about how well new treatments work.

No other treatment options

Currently, the only available treatment for metastatic renal cell cancer is immunotherapy. This halts the disease’s progress for just four months on average. But if people are unsuitable for immunotherapy, or it doesn’t work, that’s it. There’s no other treatment option.

So doctors urgently need new treatments for this disease. And the four drugs NICE has rejected have shown considerable promise in clinical trials.

New generation therapies

These four drugs are part of a new generation of cancer drugs, developed after years of painstaking research. They target key processes within the body that get hijacked when cancer develops.

Trials looking at whether these drugs can help people with metastatic renal cell cancer to live longer have had extremely encouraging results. NICE’s assessment contains details of several such trials.

In fact, several of the trials were stopped early, to allow those people not receiving the new treatment to have it. Other trials showed that some of these drugs could stop the cancer from growing for several months more than immunotherapy alone. That doesn’t seem much, but when you’re trying to beat cancer, those extra months can mean a lot.

NICE agreed that patients tended to live longer when they were given these drugs. But they felt that the evidence wasn’t sufficiently robust. And when they put the data from the trials into their computer models, they found that the drugs cost a lot (£20,000 – £35,000 per patient per year) compared to the benefit they brought patients – too much for them to recommend that the NHS prescribes these drugs.

Our concerns

These computer models were developed to look at giving drugs to large numbers of people. We question whether they’re valid for looking at relatively uncommon diseases like kidney cancer that has spread.

We’re also worried that NICE is setting the bar too high with regard to the strength of evidence they require to approve these drugs. Doctors don’t have a lot to offer people with advanced kidney cancer. If these drugs can help them – and the clinical trials show that they do – shouldn’t they be made available?

Share your views

We’re keen to work with NICE to improve their drug assessment mechanism for ‘orphan’ diseases – diseases that affect relatively few people. But we want to hear from you. If you’d like to share your views on this decision, please email kidney@cancer.org.uk or post your comments below.

Worried?

If you have questions about cancer or its treatment, including kidney cancer, please visit our patient information website, CancerHelp - or contact our cancer information nurses. There’s also more information on NICE’s decision on advanced kidney cancer on CancerHelp UK

Henry

*A note on the stats:

According to the figures used from the NICE report, for 2006, 17 per cent of renal cell cancer cases were stage 4 disease, i.e. metastatic. If we were to apply this figure to the 2005 cancer incidence figures that we have published for the UK then this would mean that there are fewer than 1,100 cases of metastatic renal cell carcinomas in the UK each year.

However, data from the South East of England in 2005 showed that a quarter of kidney cancers were diagnosed with distant metastases, with a third of cases having unknown stage. If the South East of England was representative of the UK then we could assume that there are least 1,500 cases of metastatic renal cell carcinomas. But if the unstaged tumours followed the same distribution as those that are staged then this could rise to as many as 2,250 cases per year.

However, assumptions have been made with all these figures, which produce very different results. This underlines the necessity to have excellent quality staging data to assess just how many people are affected by distant metastases, for all cancer sites – not just renal cell carcinomas.

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Comments

Sam October 4, 2010

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

Anne Pullinger October 4, 2010

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.

Jack Large December 22, 2008

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.

Andrew December 15, 2008

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!!!

Andrew November 9, 2008

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.

tony 123 November 8, 2008

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

Kat Arney September 16, 2008

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

Kat

Jill Hobbs September 12, 2008

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.

Tony T September 11, 2008

PS

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

Tony T September 11, 2008

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.

Nicola Foster September 11, 2008

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.

Kat September 11, 2008

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

Kat

Michael September 11, 2008

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.

jean edwards. September 11, 2008

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 .

Kathleen Godley September 11, 2008

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!!

Katie September 11, 2008

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

Adam Jones September 11, 2008

‘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.

Anon September 11, 2008

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.”

Janis Dickson September 11, 2008

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.

Neil Haines September 8, 2008

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.

Dawn September 5, 2008

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.