In the lead up to our Annual Conference 2015, Mark Flannagan, Chief Executive of Beating Bowel Cancer, reminds us of the massive benefits the Cancer Drugs Fund delivers and explains why, five years on, changes must be made to ensure patients are able to access medicines that can extend and improve their lives.
The recent decision to remove some drugs from the Cancer Drugs Fund approved list generated stark headlines, combative comments and an apparent wide chasm of views.
But, whatever the reaction, it is clear that when it comes to future funding of cancer drugs both the Government and the drugs companies have, in recent years, failed to seize the opportunity and fix this problem for the long term.
Recent problems with the Cancer Drugs Fund make it easy to forget the massive benefit it has delivered; we need to remember why it was established in 2010. Prior to the Fund existing, we saw repeated cases of cancer patients being told that they could not get new cancer drugs on the NHS because NICE had said, based on their existing model, that they didn’t meet the criteria for cost-effectiveness. To some this seemed a hard but reasonable approach, given that the NHS has limited funds and these drugs would ‘only’ give patients a few more months of life at best. Cancer doctors, patients and health charities knew that the truth was more complex. They knew that these drugs would often lead to not weeks or months but in many cases years of extra life and the quality of this life would be pain-free and infinitely better than the alternative life without them. That is why we saw constant headlines in the newspapers about NHS rationing accompanied by heart breaking stories from cancer patients who couldn’t understand why they were being denied drugs that would buy them more time with loved ones.
Take Simon, diagnosed with advanced bowel cancer over four years ago. Thanks to the Cancer Drugs Fund he was given a drug that according to NHS officials would not prolong his life by more than a few months. Simon is still here, very healthy and with a normal quality of life. The fact is that his treatment worked, and allowed him to go on and receive further treatments that also worked.
Simon – and many more like him – are why so many fought so hard to make the case for a better approach that would give cancer patients access to new drugs that provided real advances in their treatment and prognosis.
The Cancer Drugs Fund in England ended these headlines. They took the political pressure off until a long term solution was worked upon. But, five years on, the Cancer Drugs Fund has, to some, become institutionalised and a means of undermining NICE. The widely hoped for new approach, Andrew Lansley’s ‘value based pricing’, never appeared and in the meantime the demands on the Fund grew because NICE continued to reject cancer drugs. Pharmaceutical companies had little incentive to address the issue of price because they knew that the Cancer Drugs Fund would pretty much guarantee availability. The Pharmaceutical Price Regulation Scheme (PPRS) was negotiated and, as ever, is a masterclass in something that few really understand. There has been no review in the meantime of why NICE continues to deny drugs for funding on the NHS, despite evidence that NICE’s systems for deciding this are increasingly irrelevant to the new, targeted treatments that are becoming available.
Countless opportunities have been missed to fix the system in the interests of patients. Industry, along with the Government and the NHS, must bear its share of responsibility for this.
The result is a mess. It is one that we, along with other cancer charities, the ABPI, NHS England and NICE, are trying to sort out. We are committed to putting in place a sustainable approach that gives patients what they need and settles this issue for the future. Our central point in such discussions is that the recent argument that some of the drugs on the Fund are not clinically effective is flawed and reliant on an outdated model of their worth. We believe that because the evidence required to assess these drugs is limited to clinical trial data made available by the individual pharmaceutical companies, it provides a false picture of the drug’s potential. In fact, thanks to the Cancer Drugs Fund, we have a wealth of data available about the impact these drugs have on patients outside of a clinical trial, and we believe this evidence will show that the drugs have a massive effect on extending and improving the quality of life. The reality we know is that patients live a lot longer than the trials indicate and lead a better life that is not being measured. We believe that we need a new approach that allows us to assess this “value” alongside the more traditional and rigid approach.
Simon is the clearest example of this. Yet had Simon been diagnosed after 12 March this year he would have been refused funding for the same treatment with devastating consequences. That is why Simon is campaigning hard for a change of heart and he wants the Prime Minister to listen to patients and keep his personal promise on cancer drugs.
Patients want to know that the system is working for them, not giving up on them. It simply isn’t rational to know that we could see the benefits of new drugs but we ignore them because it doesn’t fit our ‘preferred model’. It’s time to fix this.
Chief Executive, Beating Bowel Cancer
Cost, value and affordability are fast becoming the critical issues that are shaping the dialogue and dominating the headlines around our industry. We face an ‘affordability conundrum’.