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New NICE advice condemns people with brain tumours, says cancer consortium
26/01/06
 A consortium of brain tumour groups has condemned a new recommendation from the National Institute for Clinical Excellence (NICE) which will deny people in England and Wales newly diagnosed with ‘high grade’ malignant brain tumours – around 2000 a year - from receiving vital and effective treatment.

The Samantha Dickson Research Trust, Brain Tumour UK and the International Brain Tumour Alliance are ‘outraged’ at the decision, which means that people with brain tumours are likely to be denied access to Temodal (also known as temozolomide), a chemotherapy drug which is proven to slow the progress of high grade tumours, and Gliadel, a wafer containing an anti-cancer drug which is inserted in the brain during surgery.

Professor Roy Rampling, Professor of Neuro-oncology at The Beatson Oncology Centre, Western Infirmary, Glasgow, said:

“NICE simply got it wrong. They haven’t appropriately evaluated the evidence which shows how a drug like Temodal (which was invented by Cancer Research UK) not only increases survival rates but maintains quality of life for people with brain tumours.

“A brain tumour is one of the most aggressive and difficult to treat cancers, with only 30% of those diagnosed with high grade tumours expected to live beyond a year. The medical options are currently limited and these therapies represent the biggest advances in brain tumour treatment in 30 years. They could benefit many newly diagnosed patients.”

The consortium is calling for NICE to change its position as they respond to the deadline for the NICE consultation on February 1st. Patients living with this devastating condition rightly expect the treatment that gives them the best hope of life expectancy, and the best available quality of life.

Neil Dickson, of the Samantha Dickson Research Trust, the largest brain tumour charity in the UK, is appalled by the NICE decision.

“According to the current government, we’re supposed to be following a national plan which means cancer survival rates in the UK don’t fall behind those in Europe; this decision means it’s doomed to failure. Yet these treatments are available in France and Germany, not to mention the USA, Canada and Australia.”

Professor Rampling added:

“Telling patients they have a brain tumour is a difficult thing to do; we now might be in the invidious position of explaining that there are treatments available, but the flawed decision by NICE means their chances of getting them on the NHS are pretty much zero.”

ENDS
Notes for editors:

1. Evidence on the efficacy of Temodal is contained in a study published in the New England Journal of Medicine in March 2005.

2. The Samantha Dickson Research Trust provides funds for research into brain tumours and offers support and advice for patients; Brain Tumour UK works to conquer brain tumours through research, education and support; the International Brain Tumour Alliance is a worldwide coalition of support, advocacy and information groups for people with brain tumours and their families.