We are in a hole with the Cancer Drugs Fund – why do we keep on digging?

The news that the Cancer Drugs Fund was to be extended into 2016 delighted its proponents. However, it raised huge concerns for those that could see its obvious flaws.

Blog post

Published: 14/01/2015

As demonstrated in Helen Crump's recent blog for the Nuffield Trust, the debate around both the merits and future of the Cancer Drugs Fund (CDF) has reached fever pitch over the last month or so following the announcement that drugs not deemed to be of value for money were to be delisted. I do not think anyone should be surprised or shocked about this – it was just a matter of time before this car crash happened.

The news that the Fund was to be extended into 2016 brought equal amounts of delight and concern. The proponents of the Fund, who had hailed its introduction, were delighted, however, it raised huge concerns for those that could see its obvious flaws.

The issues underpinning appropriate access to cancer treatments in the UK are complex and multifaceted. We may not be in control of all the causes as many don’t stem in the UK, however, unless we fix the problem of the CDF urgently, it may well do more damage to more patients in the long-term than it has helped to date unless those responsible for it come to their senses.

The Fund was established in 2010, as a ‘quick fix’ to politically damaging newspaper headlines about cancer patients dying because their ‘life-saving’ treatments had been turned down by NICE. Since then it has courted controversy and split stakeholder opinion.

Nearly five years on the current government are in a deep hole with it. What is worrying is that they seem intent on digging deeper when arguably, the very concept of the CDF has been flawed since inception. 

Quite simply, the Government did not understand the underlying problems it was trying to fix. Why didn’t the Government take the time to understand why this was? Why did they not look at the very clear and well published reasons why NICE say no?  If they had taken the time to understand, and if they had really wanted a strategic long-term solution, they surely would not have conjured up the idea of the CDF. 

What is more, they may also not have embarked on the now defunct idea of value-based pricing, which much like the CDF, was never on its own going to solve all of the problems underlying why NICE say no.

By not understanding the issues, despite what may be good intentions, successive governments have failed to address the underlying issues and as a consequence, continue to let patients down. Arguably, they may also have been influenced by their need to be popular with the electorate, the powerful lobby of big pharma and, the always well-meaning, but not always well-informed, patient groups.

Patient groups can be forgiven. They rightly want access to the best possible treatment for the patient group they represent. However, achieving this may not always be possible because the current system of how new treatments are researched, developed, priced and approved for use is no longer fit for purpose. 

Simply throwing money into the CDF, in attempt to solve this is not a good use of scarce NHS resources. 

I am as strong a patient advocate as the next, but is it right to continue to advocate for the approval of drugs through the CDF (or indeed NICE) that can cost in excess of £10,000 per month to treat cancer patients at the end of their life, often when there are significant uncertainties of their true benefit? Should we be advocating a willingness to pay but at a difference price or could that money not better spent elsewhere in the cancer journey? 

Would advocacy groups not make a bigger impact on patients’ lives by lobbying industry on price and trial design as hard they do government?

I am less forgiving to big pharma.

It seems that they will stop at nothing until all their drugs are approved at the price they want regardless of the magnitude of benefit and level of side-effects for patients – especially at the end of life. Many of them called for the end of NICE when the CDF was announced. Now they are upset about the lack of in-depth analysis of their drugs during the de-listing process. Well they had that with NICE and complained about it and, to be frank, they did not complain about the lack of robustness when their drugs were added onto the CDF in the first place. To this end, calls for the CDF to become more NICE-like are hypocritical and flawed.

I am as much an advocate for industry as I am for patients – we need a thriving industry delivering ‘truly’ innovative drugs that clinicians and patients desperately need and yes, they have a right to make a profit. They are, after all, businesses. However, while systemic, cultural and behavioural change is needed in every stakeholder group, industry may be the group that need to change the most. They need to engage earlier, do better studies, deliver better data and price their drugs appropriately. They also need to put patients first.

The issues underpinning appropriate access to cancer treatments in the UK are complex and multifaceted. We may not be in control of all the causes as many don’t stem in the UK, however, unless we fix the problem of the CDF urgently, it may well do more damage to more patients in the long-term than it has helped to date unless those responsible for it come to their senses. 

The problems outlined above are what Myeloma UK is working to fix. Through the Myeloma UK strategic plan, we are building collaborative models, changing behaviours aligning stakeholders around commons goal and above all else, delivering solutions that work for all.

Eric Low OBE is the Chief Executive at Myeloma UK. Please note that the views expressed in guest blogs on the Nuffield Trust website are the authors’ own.

This blog is part of a series on the Cancer Drugs Fund. In this series you can read another perspective from Macmillan Cancer Support as well as an introductory blog from the Nuffield Trust. 

Suggested citation

Low E (2015) ‘We are in a hole with the Cancer Drugs Fund – why do we keep on digging?’. Nuffield Trust comment, 14 January 2015. https://www.nuffieldtrust.org.uk/news-item/we-are-in-a-hole-with-the-cancer-drugs-fund-why-do-we-keep-on-digging

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