Lobbying Update

UK brain tumour charities have joined forces to raise awareness and lobby government and make them aware of the issues faced by the brain tumour community. We are delighted that under the chair of John Bercow MP for Buckingham, the All Party Parliamentary Group (for which Aliís Dream is providing the secretariat) is supporting us in our cause and hope that together we can make a real difference during 2006.

The group met for the first official meeting on 19 th December 2005, to discuss key issues in the fight for greater access to treatment for brain tumour patients. Presentations were made by Dr Barry Pizer, Consultant Paediatric Oncologist at Alder Hey Childrenís Hospital and Professor Garth Cruickshank, Professor of Neurosurgery at Queen Elizabeth Hospital, Edgbaston.  

  • The NHS expenditure on brain tumour patients of £16,000 is well below that spent on other cancers such as lung and breast.
  • NICE (The National Institute of Clinical Excellence) has recognised that brain tumour patients do not receive equitable and best care in the UK and is currently producing guidance, but this will be too late for the hundreds of patients currently being treated whose prognosis of surviving beyond twelve months is poor.
  • Although approved in Scotland and other European countries, recently licensed drugs that can support many brain tumour patients are not widely available in the UK as they have not been approved by NICE. The final decision by NICE is planned for August 2006 and once approved it can take up to three years to be fully implemented throughout the NHS.

Neuro-oncologists, neuro-surgeons, and other brain tumour experts are faced with the moral dilemma that they can inform their patients that licensed drugs are available but that they cannot be provided on the NHS due to funding restrictions. Clinicians have to write to their Primary Care Trusts and ask for exceptional funding, which is often refused.

Members committed to raising the profile of brain tumours amongst parliamentarians to ensure greater funding and greater access to treatment for brain tumour patients. An Early Day Motion was tabled in January and has already attracted 81 signatures.

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 gliomaís, the most aggressive form of brain tumour.

Aliís Dream along with 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.

Whatís 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 such as ours will 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 28 th February, we expect to hear the outcome at the beginning of AprilÖ watch this space...

MP Lobbying – How you can help

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