Campaigning for Advanced Melanoma Treatments

NICE has just published draft guidance on the use of vemurafenib for the treatment of advanced or metastatic melanoma on its website for consultation. The draft guidance does NOT recommend that the NHS uses vemurafenib – this is concerning as it could mean people with metastatic melanoma will not routinely be able to access this treatment on the NHS! You are able to comment on the draft guidance until 7 July 2012 and send your comments to NICE. It is important that as many people as possible contact NICE to urge them to change their guidance!

WHY and WHAT should I say to NICE?? Well....

* Vemurafenib represents a major breakthrough in treatment for patients with metastatic melanoma, and is the second new melanoma treatment that NICE has not recommended. There have not been any major developments in the treatment of metastatic melanoma for decades and there is a risk that neither of the two new treatments will be available on the NHS if the draft guidance is not changed!

* NICE’s decision not to recommend vemurafenib is disappointing because it is based on the cost of the treatment. NICE recognised that vemurafenib is “a step change in the management of advanced malignant melanoma and that there is a significant need for effective therapies in this patient population”. However, NICE has highlighted concerns about uncertainties with the data on long-term survival patients as a reason for its decision. This is often a problem for new medicines which have not yet been widely used beyond clinical trials.

* Given that NICE has acknowledged short term benefits for this group of patients, we feel it is unacceptable that it should be rejected because of a lack of information on the impact of the drug five to ten years after starting treatment. By the time this information is available, it will be too late for these patients who on average will live for less than a year with existing treatments.

* Although patients are currently able to apply to the Cancer Drugs Fund to get vemurafenib, this is decided regionally, so patients in different parts of the country might get different responses, making access to the drug a postcode lottery! Also, the Cancer Drugs Fund will come to an end in 2014 and it is not clear how patients will be able to get the medicines they need after that.

It is crucial that as many people as possible respond to the consultation and ask NICE to change their decision. People can send their comments to NICE via their website.

http://guidance.nice.org.uk/TA/Wave27/5/Consultation/DraftGuidance

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Campaigning for Advanced Melanoma Treatments

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