IBTA E-News March 2010
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Dear Friend of the International Brain Tumour Community
Less common cancers: The European “RARECARE” project, which has the
support of the European Commission, and is intended to highlight the needs of
those with rare cancers, proposed to reduce the qualifying
incidence for rare cancers from 6 or fewer per 100,000 to 5 or fewer per
100,000. The most important group affected by such a change would have been
“GLIAL TUMOURS OF THE CNS and PINEAL GLAND”. Arguments advanced for the change
include that it is “more appealing” and “bettered [sic]
remembered”, which were not strong arguments at all in the opinion of the
IBTA.
IBTA Co-Director Kathy Oliver voiced her objections to the change as did
several others, including well-known European neuro-oncologist
Dr Alba Brandes who told the RARECARE
Committee: “…excluding these kind of tumors from
RARECARE might impact on patients’ treatments and outcomes, since non rare tumors might be considered manageable by any physician
(oncologist, neurologist, etc) without a specific training and know-how.”
The Committee quickly rejected the move and has reverted to its original
definition. Its listing of rare cancers can be downloaded from here.
The change in definition could have had a deleterious effect on the decisions
of those Government regulatory and subsidisation agencies that are moving
towards giving brain tumour (and other) therapies special consideration e.g.
orphan designation, based on the rarity of the relevant disease.
ASCO: For the fourth consecutive year the IBTA will have a presence in
the patient advocacy area at the American Society of Clinical Oncology (ASCO) annual scientific meeting at
Brain tumour tissue donation and banking: The IBTA has prepared a draft discussion
paper about brain tumour tissue and whole brain donation for research purposes,
which is available for download from here (PDF) and here (Word). If
these links do not work for you, email chair@theibta.org
who will send either version to you as an attachment
to an email. The paper arose from Kathy Oliver’s and Katie Sheen’s (Astro Fund) involvement in a sub-committee of the British
Society of Neuro Oncology Guidelines Group
looking at four rare brain tumours.
How many brain tumour therapies are in development: “Of the 861
medicines in development – all in either clinical trials or under FDA review
-122 are for lung cancer, 106 for breast cancer, 103 for prostate cancer, 70
for colorectal cancer, 23 for bladder cancer, 61 for brain cancer …”. (Source:
Medicines and Vaccines in Development for Cancer”. Oncology-times.com
2009.)
Obviously, brain tumours appear to be doing well by numerical comparison,
however the IBTA has looked through the list and some of the medicines appear
to have been a little “dormant” in recent years, or are medicines where another
indication probably has a higher priority. On the other hand, the list does not
include emerging therapies related to neurosurgery or disease evaluation such
as
With that in mind, one could say (to patients and others) that there are “more
than 60 new medications and therapies currently under examination for use on
brain tumours”. When one realises that brain tumours (unlike breast and
prostate and other cancers) can affect people of all ages that figure might not
be as impressive overall when paediatric brain tumours are considered.
Avastin: There is a fascinating
exchange between neuro-oncologists from the
Antisense Pharma: The European Patent Office
has granted Antisense Pharma additional patent
protection for the use of trabedersen. This patent
gives Antisense Pharma a comprehensive marketing
exclusivity for the use of this drug within the settings of tumour-illnesses,
illnesses of the central nervous system and immunosuppression,
taking into consideration the effective dose. Trabedersen,
or AP 12009, is involved in studies for brain tumours. Further information is
available in this article.
Seizure education: In a study
to be released at next month’s Annual Meeting of the American Academy of
Neurology, researchers found that doctors and nurses on TV medical shows
responded inappropriately to seizures almost half the time.
Opioids for cancer pain: Fortunately,
brain tumour patients do not, as a rule, suffer from major pain but it can
occur and in the end of life stage brain tumour patients must have adequate
access to opioids for pain control, anti seizure
medications, and dexamethasone (or an alternative)
for brain swelling. The IBTA has been concerned about this issue for some time,
particularly in the less developed countries, and in a comprehensive survey
by ESMO-EAPC of 41 European countries N.I. Cherny and
colleagues have identified severe restrictions on the availability of opioids for cancer pain in a number of East European countries.
One possible method of overcoming some of these problems is the opioid delivery device known as the
hydromorphone
polymer implant developed by well-known neuro-oncologist
Dr Stuart A Grossman and his colleagues, which is still in a
developmental stage.
ALA and brain tumour debulking: The proof may
not be there in terms of evidence based medicine (and how would one design such
a study?) but Sanai and Berger (2008) have
stated: “Despite persistent limitations in the quality of data, mounting
evidence suggests that more extensive surgical resection is associated with
longer life expectancy for both low- and high-grade gliomas.”
One method of enabling a greater resection is to use the prodrug
As a patient advocacy group we are puzzled as to why this compound has not been
more widely approved and used for the benefit of brain tumour patients
throughout the world. If you know anything about this product and its adoption
please click here to
convey information and suggestions to the IBTA.
Words and music: Bruce Blount, a brain tumour survivor who is
involved with the adult ependymoma on line discussion group
has put together a mix of words
and music (music by David M Bailey) as a tribute to those involved in the
brain tumour community. It lasts for four and a half minutes and is a pleasant
diversion.
A brain tumour patient’s Charter of Rights: There are already a number of charters of patients’ rights and our colleagues at the ECPC have even suggested their own additions to the European Charter of Patients’ Rights from a general cancer perspective. A group within the IBTA has come up with a draft Brain Tumour Patient’s Charter of Rights. We welcome your comment, particularly from the patients, family members, caregivers and former caregivers, among our readers. Please visit here to review the draft and to offer your suggestions.
Awareness
Week and World Walk: A reminder to those
organisations who have yet to advise the IBTA of their support for these two
projects. Please email chair@theibta.org
so that you can be listed.
Thank you for your continuing support.
Denis Strangman (Chair and
Co-Director)
International Brain Tumour Alliance IBTA
www.theibta.org
Kathy Oliver (Co-Director)
Tel:+ (44) + (0) + 1737 813872
Fax: + (44) + (0) +1737 812712
Mob: + (44) + (0) + 777 571 2569
The International Brain Tumour Alliance is a
not-for-profit, limited liability company registered in England and Wales,
registered number 6031485. Registered office: Roxburghe House,
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