BLOG by CEO Owen Sharp
When I went to school - many years ago - schools across the country needed renovating and overhauling. A plan was hatched - temporary buildings would be put up for a short time whilst work commenced on the schools to get them up to scratch (you can see where this is going). I don't know how many years these temporary classrooms were standing, but I wouldn't be surprised if there weren't still a number of them being used today. A proper sticking-plaster job to make ends meet (and that was just the kids trying to plug the holes in the walls).
Now imagine a world where a similar approach was used to administer life-extending cancer drugs in England. Nobody would be that short-sighted, right?
The Cancer Drugs Fund (CDF) was founded in 2010 by David Cameron to help provide a lifeline to men and women who needed vital cancer drugs that were otherwise unavailable to them, in the majority of cases down to cost. Five years down the line, it's propping up a creaking drug appraisal system and costing an arm and a leg. The CDF budget was initially £50million, and for 2014/15 it has spiralled to £280million. By 2016, more than £1billion will have been spent on the CDF.
And it's easy to see why. Doctors and patients took a while to get up to speed on requesting drugs through the CDF, but now they know this 'temporary measure' is the only way of getting effective life-extending drugs that NICE have turned down because they were deemed too expensive or their effectiveness was thought too small. CDF spend has gone up year by year, as more than 55,000 cancer patients have taken advantage of the drugs on offer, and will continue to do so until March 2016.
At Prostate Cancer UK, we're very aware of the number of men who have benefited from drugs they could only have accessed via the CDF. Who would deny men access to medicines that have - if not lifted their terminal diagnosis - certainly delayed their decline and given them precious extra months, and sometimes years of life? Providing access to new and innovative treatment that can extend their lives or radically transform their experience of a disease is imperative. We just think there's a better way of doing it.
So what's wrong with the CDF? Nothing, as long as you live in England (Scotland, Wales and Northern Ireland have different and far more restrictive systems), are lucky enough to have got your foot in the door already, and like your life-saving drugs administered on a case by case basis with no look to the future.
"This drug's working a treat, doc, but what happens to the next poor sap when the Cancer Drugs Fund runs out of money or removes my drug from the approved list?"
It's pretty good too if you're a pharmaceutical company peddling a new drug that NICE have turned down because it's too expensive. Why bother haggling too much on price if you know the CDF will probably pay the bill anyway for 83% of the UK population?
The Cancer Drugs Fund shouldn't need to exist. It's one of the best examples of why the UK drug appraisal and funding system needs urgent reform. In fact it was set up as a short-term sticking plaster solution to what was acknowledged in 2010 as a failing drugs appraisal system. When the current government came into power we were promised a brand new Value Based Pricing drugs appraisal system that would radically change how all patients get drugs. And in the meantime we would have the CDF. Well that was over four years ago and we're still no further on.
The CDF has had many unintended consequences but the one that troubles me the most is a growing number of voices that are suggesting that cancer patients are 'stealing resources' from other patients. This argument is simplistic and it is dangerous. It may be the case that it is only cancer drugs that have a separate fund but I have no doubt that the very existence of that fund has, at times, picked up a bill that would have otherwise gone straight to core NHS budgets. We really need to concentrate our efforts and energy on designing a new system that works for all patients - not 'blaming' people with cancer for the ills of a system that is clearly in danger of falling over.
I would not begin to pretend that there is a magic answer, but we and many others are determined to do all that we can to find a better solution. We're working in coalition with other cancer charities to work with NHS England, the Department of Health, NICE, and the Association of the British Pharmaceutical Industry (ABPI) over the coming months to develop a better process for commissioning cancer drugs.
We're also collaborating with Breakthrough Breast Cancer to commission a look at alternatives ways to obtain sustainable access to cancer treatments in the UK. This research will give us a clear idea of what a good drug appraisal and funding system would look like in the round, but there are a few obvious changes. Clinical benefits and cost effectiveness of drugs should be continually reviewed to take into account new evidence (this takes far too long at the moment). I'd also give NICE (or whoever's best placed to evaluate drugs in the future) the power to negotiate on price.
The trouble is: who's going to be brave enough to stand up - particularly in the run up to a general election - and state that they think having a massive pot of money to help treat cancer patients needs a rethink? All the political announcements so far have been about extending the CDF and nobody is really talking about reform because it is not exactly a vote winner. We need to engage the public in this important debate as it's one that gets to the very heart of our healthcare system, and the value that we as a society place on the quality of life for all patients.
Real change is needed to provide future cancer patients reliable access to innovative and effective treatments, or for future generations, the CDF may become an IOU.