Donations to cancer research – have they ever run aground on NICE?
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Someone with a grip of basic science and drug development may be able to answer this question. Has NICE ever refused to approve drugs where their earlier development was based on charitable donations to cancer research? As the sums of money involved run into the millions and are our own Great British tax and charitable pounds, there’s good reason to consider it. So I release my speculation into the wild, for investigative journalists to run with, if they, and the notion, have the legs.
We all know there is a postcode lottery for drug treatments – most conspicuously, but not exclusively, drug treatments for cancer.
We also know that there is huge public interest in cancer. ‘Donating to cancer research’ is probably the generic good cause with the widest support, other than the cute and furry faction. However, has the money, and the effort spent raising it, ever driven straight into the buffer that is somtimes NICE?
Or is the question not ‘if’ but perhaps ‘how often, and how much of it’?
The costs of drug development have to include aborted lines of research where early promise was not fulfilled in the lab or, more expensively later, when a drug has been developed for patients. Research and development organisations have to take that attrition into account and try and reduce costs.
One of the ways to do this is for pharmaceutical companies to develop promising initial results from public and medical charity funded basic lab findings, when some of the initial uncertainties have been overcome. Drugs are not necessarily the children of pharmaceuticals companies alone. Research that culminates in a drug treatment consists of particular projects and many ideas and stimuli. Think of this work as a family tree, with a place for close family and long lost relatives of ideas, contributing to generations of research input, finally leading to ‘breakthroughs’ in treatment.
However, at the very latest stage, drugs are still at risk.
The National Institute for Health and Clinical Excellence was set up, in major part, to tackle postcode lotteries, over a decade ago. NICE “provides national guidance on the promotion of good health and the prevention and treatment of ill health in line with the best available evidence of clinical effectiveness and cost effectiveness for England and Wales.”
It has three streams of activity
- public health - guidance on the promotion of good health and the prevention of ill health for those working in the NHS, local authorities and the wider public and voluntary sector
- health technologies - guidance on the use of new and existing medicines, treatments and procedures within the NHS
- clinical practice - guidance on the appropriate treatment and care of people with specific diseases and conditions within the NHS.
But for this exercise we need to know about health technologies; guidance on the use of new and existing medicines.
NICE advice is meant to end the uncertainty and standardise access to healthcare. It is critical because the NHS is legally obliged to fund medicines recommended by NICE's technology appraisals.
Clinical and cost effectiveness is the battle ground on which many recent disagreements have been fought. NICE asks ‘What is the clinical defectiveness and can we afford the amount it costs to achieve it?’ NICE has not approved several cancer drugs on cost effectiveness evidence e.g. – Avastin (bevacizumab) for metastatic bowel cancer, Nexavar (Sorafenib) for advanced and/or metastatic renal and liver cancers and Torisel (Tesirolimus) also for renal cancer .
In 2007/08 alone Cancer Research UK funded £333 million of research. The National Cancer Research Institute (NCRI) records their 2007 total as £423 million of cancer research spend. The difference between CR-UK and NCRI is made up by the partners in the NCRI – research councils, heath departments of the devolved administrations and the like - i.e. tax payer funded – and other charitable organisations. It is a big budget.
How much have this and previous years’ funds contributed materially to the development of drugs that NICE has not approved? Bizarrely, those same drugs may be available in continental Europe or the US. The Association of the British Pharmaceutical Industry says around 20 per cent of the world's top medicines were discovered and developed in Britain. Whilst there is perhaps a hint of trading on past glories in that sentence, it’s still a fair bet that some of that holds true and cancer charity and tax payer funds also contributed to modern cancer drug development.
So what evidence is there that our research fund given in good faith (or taken in tax which, much as we may grump on the specifics, is taken for uncontroversial reasons, like cancer research, at least some of the time) is being stymied by NICE? I don’t know the answer but may be you could find out?
If NICE confounds charity donors’ hopes and tax paper investment can this be reconciled?
The objectivity required for managing limited health care budgets, rationing and cost effectiveness does not fit with the honest, deeply felt crowd sourcing of cancer research funds.
