BLOG by CEO Owen Sharp

13 Mar 2015

A big fat principle of health justice – and of healthy democracy, come to that – has always been: “No decision about me without me”. So people with an interest in the activities of the Cancer Drugs Fund (CDF) must be as hacked off as I am by the baffling way in which the national CDF panel went about the business of knocking 16 cancer drugs off the NHS England prescription pad this week.

In a brutal shorthand, they call what happened ‘de-listing’. To me, de-listing sounds rather like ‘collateral damage’ or ‘downsizing’ – phrases dreamed up by bureaucrats to sanitise events and hide the impact these decisions have on real people. Unfortunately, in this case a process which is of huge public interest has gone on behind closed doors rather than adopting the transparent and inclusive approach that was promised by politicians and civil servants alike. It fuels suspicion that the decision was made on a muddle of flawed criteria.

Let me explain. What has been de-listed from the CDF are drugs that improve or extend the lives of desperately ill people. But patient groups and representatives like Prostate Cancer UK were excluded from the deliberations and have therefore been denied a vital opportunity to understand exactly what decided which drugs were to be dropped from the CDF. Why the secrecy? Presumably there’s no conspiracy.

This lack of transparency has been made even worse for people who are going to be denied life-extending drugs thanks to the pharmaceutical companies. They had been privy to the secret and confidential discussions, but as soon as they found out their drugs were for the scrapheap, they leaked the news into the press. Not great breakfast reading for those concerned.

It also means that when worried people call Prostate Cancer UK, like other patient groups we’re unable to throw light on the reasons behind these life-smashing decisions because we’ve been excluded from the knowledge of how those decisions have been made.

So, to recap. A judging panel sat in secret and decided which drugs would be removed from the Cancer Drugs Fund. No patients’ advocates were allowed in the room to hear the deliberations, let alone make representations. What’s more, no patient voice will be heard in any appeal.

How can this be right? No decision about me without me. Let alone a wrong one. Of course, in an ideal world, smiling doctors would hand out suitable treatments to every single person who needed them, but down here in Realworld UK, we know that the public purse is finite. We know that some tough decisions need to be made. So this is not about people being denied their drug, it is about being denied knowledge of why?

One criterion we do know the CDF Panel used to score drugs for their continued use on the CDF is unmet need – but there’s no clear definition of what this means. Cabazitaxel, a drug for prostate cancer, scored zero for unmet need. Nix. Nada. Nothing. Nil points. However, there’s a group of blokes who’d say that’s rubbish, and it should have scored well. And they should know, because, for them, it’s one minute to midnight and thanks to Cabazitaxel, the clock’s stopped ticking for a few golden seconds. Cabazitaxel is a fantastic last-chance treatment for a group of men for whom it is the only option. This may be as many as 45 men a month and they tell us how deeply they value the precious couple of extra months this drug can provide.

So this ruling means such men in the future will be denied their only effective active NHS treatment. Their need was being met by Cabazitaxel and it is only going to be ‘unmet’ now as a result of this decision to strike the drug off. Sorry, I mean to de-list it.

This lack of transparency – or is it deliberate obscurity? – feels sinister, but more importantly, it means we just can’t be sure that the differing needs of men with prostate cancer have been properly considered within the review process. Is it possible the drugs were just crossed off the list randomly, by the stroke of a pen? Or did the special pleadings of pharma moguls – who, let’s face it, have so much to gain – sway what ended up on The List and what got ditched? We are free to speculate wildly here because in reality, we just don’t know.

And because we don’t know, we’ll be unable to explain to the men who will contact us in the future why they can’t easily access the only drug their doctor is recommending. While a de-listed treatment can be requested through a fiddly ‘independent funding request’, a man will only get it if he can live long enough to jump through a bunch of hoops and prove ‘exceptional’ clinical need. It’s pretty random. And, let’s face it, if you’re at the end of your life and trying to grab two months' extra life with both hands, who the hell is going to want to spend it poring over forms?

Or lists, come to that.

This is about real people with real lives and their voices must be heard, even if all their needs cannot be met all of the time. We need clarity on the rationale behind the decisions to dump certain drugs and to retain others. We need to know the criteria and definitions used – because, right now, it isn’t clear what the crucial scoring around unmet need is, who made the decisions, and whether the test was fairly applied to reach a proper result. It is unacceptable to exclude patient groups from future deliberations and it further highlights the desperate need to get the drug appraisal process reformed once and for all. But until then, we need to demystify delisting.

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