Lobbying	NICE Update	What can I do?

NICE recommendation update

On 30th December 2005 – NICE dealt a blow to the brain tumour community.  They issued a recommendation that, ground-breaking treatments which are proven to extend life expectancy for sufferers of aggressive brain tumours should not be funded on the NHS.

The treatments being appraised, carmustine implants and temozolomide, have been proven to extend life expectancy by at least two months and both are available throughout Europe and the USA to treat high-grade glioma’s, the most aggressive form of brain tumour.

United Brain Tumour Campaign and fellow brain tumour charities, scientists and clinicians do not agree with the preliminary recommendations, this would deny hope to thousands of patients and their families.  Both carmustine implants and temozolomide represent the first major breakthrough in brain tumour treatment in twenty tears.  If this recommendation becomes the decision the UK will be left behind Europe and the US – this goes against the aim of the National Cancer Plan.

What’s more if the approval of new drugs becomes a barrier, research in this area is likely to come to a standstill.  Drug companies will not invest and brain tumour research charities may lose the will to carry on. Time is not on the side of patients diagnosed with a high-grade glioma.  Incidence is irrelevant when you are the patient or the family or friend of an individual diagnosed with a brain tumour.  Access to the best treatment available should be a given in the UK as well as the rest of the world.

All brain tumour charities and other interested parties have written to NICE.  Indeed 36 clinicians got together to draft a letter which was sent to Patricia Hewitt.  NICE met again on 28th February, we expect to hear the outcome at the beginning of April… watch this space...

12 March, 2006

For more information see the IBTA: http://www.theibta.org/NICE.htm