IBTA e-News – February 2011

By 15th February 2011e-News Archive

Dear Friend,

Childhood cancer: 15 February is International Childhood Cancer Day. For those who are drafting media statements to commemorate the day it is worth noting that CNS tumours are now the greatest childhood cancer killer in the 0-15 age group in the USA, UK, Canada and Australia, having overtaken all leukaemias in each of those countries. As far as conferences are concerned, the scientific conference of the International Society for Paediatric Neuro Oncology (ISPNO) will be held in Toronto in 2012 but the 43rd Conference of the International Society for Paediatric Oncology (SIOP) will be held in New Zealand this year during 26-30 October 2011 (abstracts close 25 March). SIOP includes a paediatric neuro-oncology component. The International Confederation of Childhood Cancer Parents Organisations (ICCCPO) usually holds a conjoint parents’ conference. Meanwhile, during 18-19 March the Cincinnati Children's Hospital Medical Center, Children's Memorial Hospital, CancerFree KIDS and the Jeffrey Thomas Hayden Foundation, in collaboration with The Cure Starts Now Foundation, will hold a paediatric brain cancer symposium at Cincinnati, USA, with a focus on DIPG tumours. The Society for Neuro-Oncology, with support from the Pediatric Brain Tumor Foundation, will hold a conference in New Orleans during 18-19 May 2011 on Pediatric Neuro-Oncology Basic and Translational Research, covering all major pediatric brain tumours.

UK needs: In a frank submission to the UK Government’s “Improving Outcomes: A strategy for Cancer” paper the British Neuro-Oncology Society has stated: “The Society welcomes the use of intensity modulated radiotherapy with the emphasis on other forms of world class treatment.  The Society is disappointed that Radiosurgery has not been mentioned, and would like to see Proton therapy introduced earlier than the Government’s schedule.  The Society believes that sending the most disabled cancer patients – mainly children – abroad for treatment should be replaced by at least 2 Centres in the United Kingdom.” It goes on to state: “There are approximately 3,500 new cases of primary malignant brain tumours, 1,500 benign and 3,000 metastatic (and rapidly rising) tumours diagnosed per annum. There are approximately 65 Neurosurgeons who spend some of their time and a very similar number of Oncologists with an interest in Neuro-Oncology treating such patients.  A comparator with any other developed country will reveal that we need at least twice as many doctors.  The same applies for the 70 Neuro-Oncology Specialist Nurses who are vital to running the service. There is virtually no funding from the Government for research into brain tumours. Very few academic units carry out such research. The Society believes there needs to be an expansion of this leadership in order to improve outcomes in brain and spine cancers.”

South Africa: Deirdre Kohler of the newly-established Brain Tumour Foundation South Africa advises that she will have an exhibition stand at a conference of neurologists at Durban in March. We wish her well. The IBTA hopes to be involved with Deirdre and the Foundation in connection with public meetings for patients and families tentatively planned in South Africa for June-July.

IBTA magazine: The IBTA volunteer staff are working hard on the compilation and production of a 2011 edition of the magazine “Brain Tumour” which will be distributed for free in our 83 contact countries. We plan to print 11,000 copies of a 128 page magazine in the production style of “Time” or “The Economist”. Those who did not receive a posted copy of the 2010 edition can register to receive a free copy of the 2011 edition here.

RANO Report: The Response Assessment in Neuro-Oncology Working Group (RANO) has produced an interesting report on “Clinical trial end points for high-grade glioma: the evolving landscape”. In canvassing the origin and current relevance of various end points they refer to the emergence of auxiliary or secondary end points, one of which is the assessment of patient function and wellbeing which may assume greater importance in randomized phase II and III clinical trials. Patient advocates have not had a great deal to say on this subject but it warrants their attention, particularly as it may impact on future regulatory approval and subsidisation (where available) of new therapies.

UN non-communicable diseases (NCDs) Summit: Close to 700 people have associated themselves with the Open Letter initiated by the IBTA to delegates attending the NCD summit to be held in September 2011. Our concern is that the Summit will focus almost entirely on policies of prevention, early detection and screening, to the virtual exclusion of an appropriate regard for research and support, particularly in regard to the unpreventable cancers, of which brain tumours are a prime example. The signatories to date can be viewed here and you can add your name at this webpage which has links to versions of the Open Letter in English and ten other languages. Anyone who has had experience of lobbying at the UN level and has relevant advice to offer should contact the Chair of the IBTA.

Brain tumour care coordinators: Our colleagues in Australia recently initiated an on-line survey of attitudes to the concept of brain tumour care coordinators who are health-related staff (not necessarily nurses) who assist patients and families as they undergo treatment for their tumour. There was overwhelming support for the concept and verbal quotations from patients and carers were used in a submission to the Australian Government for financial support for these positions, which are currently funded by internal and external sources, including philanthropic groups, commercial companies, and cancer institutes. The survey and submission can be accessed on the website for Brain Tumour Alliance Australia (BTAA).

NovoTTF-100A device: Al Musella, President of the Musella Foundation, will appear before a public meeting of the Neurological Devices Panel of the Medical Devices Advisory Committee of the Food and Drug Administration (FDA) in Washington DC, USA, on 17 March, in support of the Novocure NovoTTF-100A device currently under review for the treatment of recurrent glioblastoma. (The device is also in a Phase III trial for newly diagnosed GBM.)  To ensure that he is not speaking solely for himself he has initiated an on-line form for US residents to complete so that they can publicly associate themselves with his stance. He is aiming for 1,000 signatures.

Boswellia serrata: Researchers in Germany have identified an oedema-reducing benefit from the use of boswellia serrata by brain tumour patients undergoing brain irradiation which could be potentially steroid-sparing. Boswellia has been popular in Germany and among knowledgeable brain tumour patients in other countries. Its use has been prompted by patient aversion to the common side effects of dexamethasone, including the emergence of cushingoid symptoms.

Brain tumour publication, comic-style book: The IBTA received a copy of a new publication, written and illustrated in comic-book style, explaining brain tumours to children and we asked a 13 year old person with a brain tumour to review it. Our reviewer liked the book and we will publish her review in full in the forthcoming IBTA magazine. She writes: “I loved reading this book, I wish that when I was first diagnosed with my high risk Medulloblastoma that a resource such as this was available to myself and my family, it would have made a difference. I feel it is also a valuable resource to be able to give to school to assist them to explain to peers what is occurring to their friend …”.

Conferences: The IBTA plans to have a presence at the EORTC/EANO conference on “Trends in Central Nervous System Malignancies” in Bucharest, Romania, during 25-26 March.

David M Bailey: A seven minute musical video tribute to the late David M Bailey, singer, songwriter and long-time brain tumour survivor, was shown at the January conference of the Florida Brain Tumor Association and has been uploaded to You Tube here.

Statistics: The GLOBOCAN database, produced by the International Agency for Research on Cancer, generates worldwide cancer statistics. The latest estimates for 2008 show the worldwide incidence of “brain, nervous system” tumours to be 237,913 persons (126,815 men, 111,098 women) with a mortality of 174,880 persons (97,251 men, 77,629 women).

Thank you for your continuing support.

Denis Strangman (Chair and Co-Director)
International Brain Tumour Alliance IBTA
www.theibta.org

Kathy Oliver (Co-Director)
PO Box 244, Tadworth, Surrey
KT20 5WQ, United Kingdom
Tel:+ (44) + (0) + 1737 813872
Fax: + (44) + (0) +1737 812712
Mob: + (44) + (0) + 777 571 2569

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