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A 'no pedestrians' sign

It's a provisional 'no' from NICE

EDIT 16/05/12 – NICE has now approved this drug. More here.

Today the National Institute of Health and Clinical Excellence – NICE, the body that decides which drugs the NHS should pay for – has given a preliminary ‘thumbs down’ to a new prostate cancer drug, abiraterone (Zytiga), after it failed to agree a pricing scheme with its manufacturer.

As regular readers will remember, we played a key role in this drug’s development, from pioneering lab work, through pre-clinical studies, all the way up to early patient trials.

This is a deeply disappointing and frustrating decision. Since it became available last year, abiraterone has become one of the most requested drugs on the NHS Cancer Drugs Fund. Both patients and doctors alike value the extra months it gives men with their families, if their prostate cancer comes back after chemotherapy.

Chiefly, we’re upset that the healthcare authorities and the drug’s manufacturers, Janssen (part of Johnson & Johnson), can’t agree a fair price for the drug.

We also think there are some issues with NICE’s calculations, which we’ll discuss below.

Thankfully, this decision isn’t final, and can be appealed NICE is now asking for comments through its consultation process. But we’re dismayed that this will mean another long wait of many more months before there’s any hope of progress. And while we wait, there will be men in the UK who will be denied a drug that could help them.

Here’s a video of our chief medical officer, Professor Peter Johnson, explaining what he thinks about the decision:

We need to be clear: abiraterone isn’t a cure for cancer.

But for the thousands of men diagnosed every year with prostate cancer that has spread, it has the potential to ease suffering in the late stages of a terrible disease, and give men more time with their families.  The average survival time for these men is just 11 months. Trials have shown that abiraterone could give them an extra four.

Vested interest?

Some will say that we’re only upset because Cancer Research UK stands to earn money from sales of abiraterone. And we do have an interest here: thanks to the way we licensed our initial discoveries to the pharmaceutical industry, we stand to receive royalties from the drug’s sale.

But those funds would be ploughed back into our urgent search for better ways to treat this terrible disease. We receive no government funding for our research – almost all our income comes from the public’s generosity. Things are tight for everyone, and we’re having to seriously prioritise our research funding. Every penny counts.

On top of this, it’s hard to tell our supporters that a drug whose development they helped to fund isn’t going to be available to patients. More recently, to try to prevent this situation arising, we’ve been much more forensic in contracts we sign with the pharma industry, to encourage them to market the resulting drugs at a price suitable for the NHS.

But we signed the original agreement to develop abiraterone in the late 80s, long before NICE was even a twinkle in the Department of Health’s eye.

Our motive is not self-interest. At Cancer Research UK we passionately believe that to help people with the disease, we have to understand what makes cancer tick, and use that knowledge to develop better treatments.

Abiraterone is a shining example of this vision. In the 1990s, we helped fund researchers at The Institute of Cancer Research to identify the molecular machinery that helps prostate cancers use testosterone to grow and spread. They developed chemicals that could interfere with this process. They tested and refined these chemicals into a drug that could make a difference. And they conducted early trials of this drug.

We watched proudly as others at The Institute of Cancer Research, with Janssen’s support, built on that platform, rigorously testing the drug in clinical trials. These trials proved that the drug could improve things for the people who really matter – patients.

So hearing that men are to be denied this drug as a routine choice is a huge let-down, and a real blow to the morale of everyone who shares our dream of conquering cancer through scientific research.

Where did things go wrong?

First, let’s look at NICE’s calculations.

Around 37,000 men are diagnosed with prostate cancer every year in the UK. Of these, about 10,000 are diagnosed with advanced disease.

But abiraterone is only currently intended for men with advanced prostate cancer who have already had chemo, which isn’t suitable for all men. We’ve spoken to a range of experts who agree that the true figure is probably fewer than 7,000 men – and we think this number is low enough for the drug to be assessed under NICE’s end-of-life guidance, which has less-stringent rules over cost.

So we think the overall cost could be more manageable than NICE’s initial calculations appear to have indicated. They disagree with us, and issued a statement to say so. But all the evidence Janssen gave them backs up our point of view; they appear to have dismissed this on the advice of a single expert.

The drug’s high cost is perhaps a more significant factor. We’re well aware that abiraterone is an expensive drug* – it costs about £3,000 for one month’s supply – and we live in straitened times. But the challenges of the current economic climate need to be shared. Janssen have offered the NHS a discount, but clearly not enough. We want them to agree a discount scheme that reflects the current financial constraints on the NHS.

If NICE tweak their sums, and Janssen are willing to compromise, we desperately hope abiraterone will be allowed to enter routine use.

Men in England with advanced prostate cancer can, of course, consider asking their doctor to apply for access to abiraterone through the Cancer Drugs Fund. But this is a finite pot of money that’s only available until 2014. It has to service the needs of patients with many other types of cancer. We mustn’t overload it, or others will suffer.

And crucially, the Fund doesn’t apply to men in Scotland, Wales or Northern Ireland (the Scottish drugs watchdog, the SMC, say they aim to appraise abiraterone by March 12th).

How long will the appeal take?

Appeals need to be submitted NICE want to hear from other experts by February 23rd, and say a final decision should be made by May. And this highlights a wider problem – NICE’s system still appears to be overly reliant on economic, rather than clinical, values. As we discussed in December, the Government is planning to reform drug pricing in the UK, through a proposal called ‘value-based pricing’. We want this new system, however it works, to be faster, more transparent, and focused on delivering positive outcomes for patients.

But that’s for the future. In the here-and-now, we’ll be consulting with our colleagues at other clinical and research organisations. If you have anything you want us to highlight, please leave your thoughts below. As well as people affected by prostate cancer, we’re also keen to hear from the people who look after them – clinicians, nurses, GPs and other carers.

We hope that the appeal is successful, responses to this consultation convince NICE and Janssen that the drug represents a real step forward for men with prostate cancer, so it can be made available on the NHS for those could benefit from it.

Henry

*Edit 03/02 – we’ve added more details about the cost of abiraterone above, in response to a request on Twitter

Edit 06/0 – after discussion with NICE, we have slightly amended the wording of a few points above.

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Comments

James Ritchey July 24, 2012

Isn’t it true that the older the man with terminal prostate cancer, the shorter the time benefit he gains from treatment, such as chemo and/or hormone treatments? Accordingly, why do not trial results show survival data as a
function of ages of patients. Admittedly, doing so might make it less likely that older men (like me) are able to obtain expensive drugs than their younger counterparts. Notwithstanding, is this reason enough not to collect and publish the data? I am 81 years old. Still, I”d like to know how little time I have left. If only a month, I’d rather avoid side effects and go on to hospice treatment

Patrick Murphy March 21, 2012

To D Manger, I couldn’t of put it better myself.

yvonne mulhearn March 18, 2012

Well said sir.

dennis manger March 18, 2012

I was unfortunate to get advanced prostate cancer and what a lovely country we live in i have worked here all my life and well over my retirement age and like thousands more have paid into the national health from when it first started. What a generouse country we live in we can send millions of pounds to other countrys and we are classed as a rich country yet we canot give our own people a cancer drug to help them, and only the other day it was in the papers that any people comming from abroad to this country with hiv can have free treatment i am fuming thanks for nothing D manger

Gaye Ellacott February 23, 2012

If cancer research helped play a key role in the research of this drug and gave funding what right do NICE have to overprice this drug so that the NHS cannot afford to use it for the very patients it was made to help! It should be made available at an affordable cost so that the very people that need it can be treated with it. This paragraph below is from the NICE website
The National Institute for Health and Clinical Excellence (NICE) was set up in 1999 to reduce variation in the availability and quality of NHS treatments and care – the so called ‘postcode lottery’.
Our evidence-based guidance and other products help resolve uncertainty about which medicines, treatments, procedures and devices represent the best quality care and which offer the best value for money for the NHS.

My Dad is due to start taking abiraterone in the very near future and I am quite frankly appalled and very angry at what I have just read. I have raised money for cancer research and think it is a disgusting that someone should be able to stop the NHS from using a drug which could help a lot of people for the sake of overpricing a drug when they are the very people that are mean’t to be helping and fighting for rights of these people. How do they benefit from overpriceing these drugs is for profit?

Gail February 23, 2012

I’m torn on this – I think it’s disgusting that the drug companies can essentially hold the NHS to ransom, but equally I understand that when budgets are tight that end-of-life-prolonging drugs may be shelved in favour of treatments for those who have a good chance of making a recovery. I don’t have personal experience and there is no such thing as a more convenient time to die, but I can imagine how important and extra couple of months can be, to set your affairs in order, to see a child get married or to be around long enough to meet your newborn grandchild. Government budgets are set – it is not as if the NHS can go penny pinching from transport, education or defence (and neither can they go penny pinching from the NHS) in order to fund it’s bottomless pit of worthy causes.

If there is anything to be learnt from this, it is the importance of early diagnosis – life is too precious to put off going to the doctor – the longer it’s left, the greater the risk of terminal illness and being trapped on the receiving end of expensive drugs and tight budgets. My uncle is 58 and was diagnosed with prostate cancer last week – they have caught it early. I hope he does not find himself in this awful predicament in months/years to come.

dennis manger February 22, 2012

i would like to say that i a absolutely discusted with this
goverment and te national health service that they are not paying for the new drug for prostate canser i have the desease and have payed in all my life since the nhs
started and now tha i need it they ae refusing to pay for the drus i need

Mrs. D. Ford February 22, 2012

I was horified to listen on the 6pm news tonight that NICE in their wisdon are saying that they are advising that the drug Abiraterone is not going to be prescribed for Prostate Cancern Patients. I think that this an outrage.

mr l hall February 22, 2012

I hope i can get the drug

healthy man February 15, 2012

IMO some pharma companies inflate costs. Hlding a patent is not for holding lifes to ransom. I understand that its a business, but there has to be a line drawn somewhere. The NHS cant be expected to spend thousands for every patient. Hopeing for the best!

Jenny Hickey February 13, 2012

why should we bother toraise money to find new drugs.when we arenot allowed the use of them to prolong our loved ones lives.it takes the heart out of the fund raises . why bother,spend thousands to fill the pockets of the drug companys.i give up,