A rational approach to rationing

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 long term funding of cancer drugs both the Government and the drugs companies have failed to seize the opportunity and both must share the blame for failing to fix this problem.

It would be helpful to begin with a reminder of why the Cancer Drugs Fund was set up in 2010.  Prior to the Fund existing we saw repeated cases of cancer patients told 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” given patients a few more months of life at best.  Cancer doctors, patients and health charities knew that the truth was more complex.  These new drugs would often lead to not weeks or months but in many case years of extra life and the quality of this life would be infinitely better and pain-free than the alternative life without them.  That is why we 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 was only supposed to be a temporary measure to provide cancer patients and their doctors with certainty that they would get new drugs of proven effectiveness.  Everyone recognised that a long term solution was needed and we all awaited the publication of new proposals for this, called “value based pricing”.  Sadly this has never appeared and, in the meantime, the demands on the Fund grew because NICE continued to reject drugs. Yet there has been no review of why NICE continues to reject these drugs for funding on the NHS, despite the evidence that NICE’s systems for deciding this are increasingly irrelevant to the new, targeted treatments that are becoming available.

The recent argument in favour of dropping some drugs from the Cancer Drugs Fund was that these drugs are not clinically effective, that “None of the drugs showed evidence of prolonging life by more than three months, and many had nasty side effects with a serious impact on quality of life.”  The truth is that the evidence required to assess these drugs is limited to clinical trial data made available by the individual pharmaceutical companies.  This data is, by its very nature, subject to severe limitations on its validity for the wider patient population.  In fact, thanks to the last four years of the cancer Drugs Fund we have a wealth of available data about the impact of these drugs on patients outside of a clinical trial and we believe this evidence will show the drugs have a massive effect on extending and improving the quality of life.  But, despite repeatedly being asked to by many cancer charities, NHS England has refused to make this data available and, importantly, use it in its assessment of the effectiveness of these drugs.  The reality outside of a restricted, outdated process is that patients do live a lot longer than the trials indicate.

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. 

If patients like Simon are diagnosed after 12^th March this year they will be 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.

Simon Hawkins has a clear message for the PM

But, we all know that the Cancer Drugs Fund should be no more than a temporary measure.  Few of us want to spend time defending a short term fix.  But, if the Fund is a sticking plaster then it is wrong to rip that plaster off and, by removing key drugs from its list, leave a gaping wound without better alternative in place.    We should not act in haste without knowing we have fixed the problem for the long term.  Without this solution then we risk returning to the repeated problems that brought about the need for the Fund in the first place.

Patients want to know that the system is working for them not against them. Patients cannot afford for the system to give up on them. The NHS needs to urgently get round the table with the drugs companies to see what can be done to protect access to these treatments.  We should not give up on cancer patients.  Patients should not pay the price for a failure of imagination and will on the part of others. We should put in place a long-term solution that has the confidence all cancer patients.

Cycling to Kazakhstan

Okay, a slightly misleading blog title.  I am not actually cycling to Kazakhstan.  But this year I will attempt to cycle 3,000 miles, or just under 5,000 km.  That is like going all the way to that central Asian, land locked country.  It is all to raise funds for Beating Bowel Cancer - the support and campaigning charity for everyone affected by bowel cancer. I hope I can make a go of it. Last year I got on a road bike for the first time and did the Ride London 100 in August.  I have set myself an even greater challenge this year and, in taking on this challenge, I want to raise £2 for every mile cycled - that's £6,000 to help Beating Bowel Cancer in its vital work.

I was very grateful for your support last year when I took part in the Prudential Ride London.  I was very touched by all the messages I received.  I was also touched to hear your stories about how bowel cancer affects you and why supporting the work of Beating Bowel cancer is important to you.  But, if I said I was simply going to do it again and wouldn't it be good if you could support me I might be told "so what, you like cycling now, where's the challenge in that?".  I would tend to agree.  So, my challenge this year has to be greater, just as each year Beating Bowel Cancer has to have bigger ambitions to beat bowel cancer.

The challenge won't be easy.  To achieve my goal of 3,000 miles in training and events I will have to be out consistently on my bike quite a few days each week this year - pretty much every day as the nights get lighter.  Doing specific events will help me focus, as I couldn't do them without training. So, I am taking part in, at least: the Woking Sportive in March (85 miles); the Wales Velothon in June (75 miles); a Summer Solstice ride in June with my cycle club (102 miles); the Prudential Ride London in August (100 miles); and I will ride from London to Paris in September (280 miles).  It is all to raise vital funds for Beating Bowel Cancer.  I want to fund our excellent nurses, our information booklets, our events bringing together bowel cancer patients and our campaigns to beat bowel cancer.

So, can I have your support this year?  I will need it.  £6,000 is the equivalent of £2 per mile.  So, how many miles will you sponsor me to cycle?  I expect to be fitter and slimmer by the end of the year - and I will also know that I have helped Beating Bowel Cancer to help more people.

Please show your support by donating via my Just Giving - Cycling to Kazakhstan - page and please share it with others.