By failing to monitor patient outcomes the Cancer Drugs Fund reveals its lack of a long term agenda
Edmund Stubbs, 17 September 2015
The fact that the Cancer Drugs Fund has not been collecting data on patient outcome for those it has been prescribing for seems inexcusable. The fund was created in 2011 to give cancer patients access to expensive, non-NICE (National Institute for Health and Care Excellence) approved drugs and has often caused controversy over its perceived lack of standardised methodology in decision making.
This failure to collect data reveals that the Cancer Drugs Fund lacks a clear mission or agenda to pursue. The fact that it focuses on immediate treatment, deciding whether or not to allow the prescription of certain drugs to patients, rather than studying how those decisions could be improved in the future, is worrying.
The decision-makers of the Cancer Drugs Fund know better than anyone the implications of abandoning NICE guidelines; how difficult decisions will become without a clear structural framework in relation to desperate and emotionally vulnerable patients. However, with every decision to fund an individual’s treatment comes an opportunity to make a more reasoned decision in the future.
In any case, the Cancer Drugs Fund’s days seem numbered. Plans to create an alternative Managed Access Fund could represent a more ethically sound way of managing the decisions surrounding the prescription of expensive cancer drugs. This new fund will cover the cost of treating patients with drugs that show promise but which are waiting to be evaluated by NICE in terms of their value for money.
As a large proportion of the drugs prescribed by the Cancer Drugs Fund fall into this category this new approach could prove more equitable. Drugs about which not much is known but which seem helpful for patients might bring hope, even while in the process of being evaluated, and could, in certain circumstances, represent a viable treatment option.
In the case of drugs that have been evaluated, and are not subsequently approved by NICE, it could be argued that at least patients now know where they stand. Instead of an anxious wait for a decision over the prescription of a drug that might only offer a few extra months of life, patients will be able to clearly understand their remaining options and make decisions based on these, perhaps focusing more on their family and possible valuable experiences as their disease progresses.
Of course, to accept the non prescription of certain drugs, confidence is required in the decision processes of NICE. It is extremely important that NICE can be shown to have satisfactorily evaluated the value for money of a drug in an honest and humane way as any decision not to offer a certain drug will become final in many cases.
Decisions concerning an entire population are very different from those regarding an individual patient perhaps desperate for extended lifespan. I am almost certain that if I personally learned that I required a non-NICE approved drug all thoughts of funding healthcare on a population level would become irrelevant and any decision by NICE to deny it would appear cruelly utilitarian, even heartless.
For this and many other reasons it is of concern that politicians are still largely ignoring the funding problems faced by the NHS. The types of diseases that we as a population now suffer from are often extremely expensive to treat. With only £8 billion of extra funding currently promised, and with the requirement to effect savings across the service, if we are to succeed in keeping all our large NHS hospitals open and care free at the point of delivery it seems inevitable that another part of the NHS, perhaps the funding of ‘expensive’ drugs, will suffer.
Hence, instead of seemingly arbitrary decisions by a Cancer Drugs Fund on what treatments to fund, we need to have a public debate about our lack of ability to help individuals in our society who are in urgent need.
Edmund Stubbs is Healthcare Researcher at Civitas, @edmundstubbs1