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Media campaign success for glioma drugs: Year-long effort rewarded by SMC & NICE u-turns on access to life-extending treatment
Brain Tumour UK, along with other brain tumour organisations, celebrated a u-turn on 22nd December 2006 by the National Institute for Health and Clinical Excellence (NICE) which issued draft guidance confirming the brain tumour chemotherapy drugs temozolomide (Temodal) and carmustine implants (Gliadel wafers) should now be available for people newly diagnosed with highly malignant brain tumours (glioblastoma) on the NHS in England and Wales. This follows an admission from NICE that it miscalculated the cost effectiveness of temozolomide earlier in the year. The Scottish Medicines Consortium (SMC) published similar guidance on 11th December.
We now call on the NHS to ensure speedy access to the drug for all patients who can benefit from it. Ella Pybus, speaking on behalf of a Media Campaign Consortium made up of Brain Tumour UK, the International Brain Tumour Alliance, the Samantha Dickson Brain Tumour Trust and the United Brain Tumour Campaign said:
“This is very good news for brain tumour patients and a truly welcome change of heart. Our anxiety is that NICE won’t issue formal guidance until next spring and we know from bitter experience that primary care trusts are reluctant to fund drugs that haven’t been formally endorsed by NICE. We hope and trust that from now on there will be no more PCT Scrooge-like denials of treatment.”
The call comes as figures released by the SMC show an assumption that only 35% of eligible patients are expected to be treated with temozolomide in Scotland in 2007 – patient groups want to see all eligible patients have access to the drug as soon as possible.
The consortium was disappointed to see that NICE has not recommended carmustine implants (Gliadel wafers) as a cost-effective treatment for people with brain tumours, given the very limited range of effective treatments for the condition. This is contrary to the SMC position which continues to support this therapy for Scottish glioma patients.
Roy Rampling, Professor of Neuro-Oncology at the Western Infirmary in Glasgow, said:
“Brain tumours are one of the most difficult and aggressive cancers to treat - only 30% of those diagnosed with the most severe tumours – glioblastomas -live beyond a year.
Professor Rampling added:
“The new recommendation by NICE is most welcome as it will allow patients in England and Wales to obtain the same treatment that is available in most other developed countries.”
Explanatory notes:
1. NICE first published draft guidance on the use of temozolomide and carmustine wafers for newly diagnosed patients with highly malignant brain tumours in January 2006. NICE subsequently confirmed it had made a mistake in calculating the cost-effectiveness of temozolomide and issued new and changed draft guidance for consultation today (22 December 2006).
The SMC issued its draft guidance on December 11 2006; NICE is expected to publish its binding guidance in the spring; the guidance will come into force ilater this month (late June 2007).
2. 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, their families and carers; The Samantha Dickson Brain Tumour Trust is the largest funder of brain tumour research in the UK and offers support and advice for patients; The United Brain Tumour Campaign is a group of eleven charities from across the UK working together to raise public awareness and increase funding for brain tumour research and support.
Brain Tumour UK Website: braintumouruk.org.uk