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Thanks for all your comments on our blog about the recent decision by NICE to reject four drugs for advanced kidney cancer. We have been reading your comments, as well as emails we have received, and are now making our representation to NICE on this issue. You can read our full response in this document (45kb pdf file), but here’s a potted version.

An unfair decision
Cancer Research UK believes that NICE’s appraisal process for deciding whether or not to recommend new drugs is not appropriate for all types of cancer drug, as this case highlights. Metastatic renal cell carcinoma is one of the less common cancers, so the number of patients who could be entered into clinical trials is low. Furthermore, in several cases, patients on the control arm of a trial (i.e. who were not receiving these new drugs during the trial) were moved into the treatment arm (i.e. they were given the new drugs part way through) as the benefits of the drugs became clear. This means there is a limited amount of clinical trial data which NICE can use to make its decision.

We believe that NICE should take account of the lack of other treatments for metastatic renal cell carcinoma. For the majority of patients, there is no alternative treatment – interferon, the only current treatment, is only effective in 30% of cases, leaving 70% untreated. Doctors urgently need new treatments for this disease and these four drugs have shown considerable promise. We are very concerned that patients are being denied access to treatments which have been shown to be clinically effective.

We believe it is unfair that patients with this condition are penalised because of the way these drugs are priced by the manufacturers. NICE should negotiate with the pharmaceutical firms involved to resolve the issue of cost-effectiveness.

Consequences for research
We believe that this decision has potentially serious consequences for UK science and research. The UK is in the enviable and unique position of having a population who are enthusiastically supportive of medical research. Every year, people donate in their millions to medical research charities in the UK, including Cancer Research UK. However, decisions such as this are likely to cause people to question the point of supporting such research, both financially and in terms of willingness to participate in trials. This could have a devastating impact on medical research in the UK.

Our supporters have shared their views with us. In particular, people feel frustrated and angry at NICE’s preliminary decision. Many people questioned why these drugs were available in most European countries but not in Britain and cannot understand why the NHS doesn’t have more negotiating power with the pharmaceutical firms who set the prices for new drugs.

To sum up
In conclusion, we call on NICE to reconsider this decision, review whether its current process is suitable for all cancer drugs and introduce flexibility into their appraisal process to ensure patients can access drugs which are likely to benefit them.

We have sent a copy of our response to the Secretary of State for Health.

Please be assured that Cancer Research UK takes its responsibilities to patients and those touched by cancer very seriously. Thank you again for sharing your views with us. Together we will beat cancer.

Kat

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