08/03/2016 06:53 GMT | Updated 08/03/2017 05:12 GMT

So the Cancer Drugs Fund 'Reform' Is Happening

The Cancer Drugs Fund "reform" is happening. We have a new approach that puts NICE back in the driving seat. The hoped for result is no more surprises, no unexpected calls on a fund for a new drug that will change someone's outcome.

The Cancer Drugs Fund "reform" is happening. We have a new approach that puts NICE back in the driving seat. The hoped for result is no more surprises, no unexpected calls on a fund for a new drug that will change someone's outcome.

And, if there is, we can always blame bad pharma because it is their price setting that is really at fault isn't it?

Well, as Chief Executive of Beating Bowel Cancer, I can tell you that this is a retrograde step. It is a victory for those health economists who may know the price of drugs, but who do not know the value of them. We are heading back to the dark ages for cancer drugs funding.

I can tell you that under the CDF, patients with cancer had more treatment choices than they will under the new system.

I can tell you that the basis for this new system is fundamentally flawed. It assumes that the methodology for appraising drugs is robust and the best that we can have.

But don't take my word for it. Consider Ben, who was diagnosed four years ago with advanced bowel cancer. He clearly and openly says he is terminal. Ben has had over 70 - yes 70 - doses of chemotherapy. Oh, and he has run over 20 marathons while undergoing this treatment. But based on his initial diagnosis he should be dead by now. In fact, by the criteria NICE uses for evaluating effectiveness, the drugs that have been running through his system for four years should not have worked and he should no longer be with us. He, in their methodology, is not cost-effective.

Ben will still lose his "battle" - although whether Ben sees it as a battle or just another challenge is something you need to ask him. But, he will leave us much later than predicted, and for most of the time he has stayed with us he has been healthy and fully functioning - probably functioning much better than many of us who don't run marathons!

But it isn't just about people like Ben, facing the end of life and simply seeking more time with their loved ones. A rational desire that I would argue most of us would want.

There are also people like Simon, whose treatment made available under the CDF led to a liver resection that his doctors tell him now means he has no sign of disease. Simon's chemotherapy opened up other treatment options. His drugs under the CDF led to his oncologist providing his surgeon with a better candidate for the knife!

But let's depart from what some would like to portray as emotive stories that do not help illustrate just how complex these decisions are or recognise that we have the best system we can have. Let me lift the veil on what actually happened when some of us, in good faith, sought to negotiate with the powers that be to try and get an agreed fair solution that recognised the limited budget but that also allowed for the current approach to be reformed and made better for patients.

Back in October 2014 Beating Bowel Cancer, along with other cancer charities, the ABPI, NHS England, NICE, the CDF and the Department of Health sat round a table and agreed to work together to create a new approach that would be based on clear shared principles and a recognition that the CDF was only ever a sticking plaster. None of us wanted to continue the CDF as it was. We wanted to see a transparent and fairer system for assessing new drugs.

We worked alongside all these other bodies in good faith, keeping within the rules, not agitating externally, agreeing that, at some point, we would need to make some tough decisions. Indeed, we regrettably knew we would have to live with a short term de-listing of some vital drugs off the CDF list - and bowel cancer, in the words of CDF chair, "took the biggest hit".

And what happened? Did we co-create a robust, sustainable and fair new approach? Well, we never got the chance. Because in July 2015 the process was unilaterally abandoned and a consultation was announced that did not take account of the principles we thought we had agreed. Core to this consultation was the idea that NICE didn't need to change the way it assessed new drugs. That NICE's approach was basically fine and that what was wrong was the drug companies prices. The word kept coming out that the NHS has limited funds, and the appraisal system is the best method of ensuring only new drugs of proven effectiveness become available.

Of course, we all know that this at best was optimistic, but I would go so far as to say it was disingenuous. It was all about managing a set budget and not about trying to get a system that genuinely wanted to deliver new drugs to patients. Yes, some new drugs will get to some patients, but there will not be a level playing field and some of the assumptions about new drugs are grossly wrong.

I am getting a little tired of people saying that the CDF doesn't work and we need to be evidence based in our decisions, whilst at the same time not making any effort to actually look at the individual difference the CDF has made and use that evidence as a key driver for future methods of assessment. We need to show the difference the CDF made, not simply automatically assume it hasn't delivered anything of worth because the evidence hasn't been collected.

So, here is my summary of what is now happening.

1. We have what some opponents wanted all along when the CDF was introduced - control by NICE; using its own methods of evaluating what effective means and, therefore, what is cost-effective for the NHS.

2. Patients with terminal cancer are being judged as a cohort when it comes to considering the drugs that might make a difference to their cancer. This makes its very manageable for the NHS and makes the numbers add up, but it doesn't reflect the science of cancer treatments - which is now all about targeting, personalisation, an individual's tumour rather than a generic cancer.

3. The politicians, specifically David Cameron, have had a manifesto commitment removed and have been told that this has happened after expert consideration of the evidence, consultation with all interested parties and, therefore, is a fine example of evidence-based policy making. In fact the truth is rather different.

And finally,

4. The system has asserted itself. It has delivered what it wanted all along. It has used a pretence of consultation and engagement but, if you look at what has happened as a result, nothing has really changed.

I now predict that, within a few years, probably much sooner, we will again see headlines about patients being told their treatment will not be made available on the NHS. Their Clinicians will be furious as clear evidence of the benefits of a new drug is ignored because it doesn't fit the out of date methodology. Charities like Beating Bowel Cancer will have to take up the fight for better access again and, yes, we will work with some pharma companies to do this, because patients expect us to work with the people making the product that goes into their bodies. History will repeat itself.

It may be that this issue will be a general election issue in 2020. This will be too late for thousands of patients.