December 13, 2007 at 7:44 pm #18372saraMember
Way to challenge them, Helen! Thank you so much for providing an update on the forum. We have a mountain to climb, but we sure are making some progress!December 13, 2007 at 6:11 pm #18371devoncatParticipant
Thanks for the information Helen. When I was first diagnosed, my bestfriend (a pediatric oncologist) said that what cc really needed was someone famous to get it and lobby for it. I think she REALLY underestimated the power of those families who have lost loved ones to make a change. HATS OFF to you and AAMF and to Stacy and Rick for this site and to all the bloggers who share. Each of you is making an impact on our lives. Thank you.
KrisDecember 13, 2007 at 11:07 am #968helenmorementMember
Last week I attended the launch of the Rarer Cancers Forum manifesto on behalf of AMMF (a small UK charity with a particular interest in cc) – and on behalf of everyone involved with cholangiocarcinoma – at the House of Commons, Westminster.
The event was introduced by Dr Ian Gibson MP on behalf of the Rarer Cancers Forum, and the speakers were Ann Keen MP, Minister for Cancer Services, Professor Karol Sikora and Professor Mike Richards. All agreed on the need for those with rarer cancers to receive the best possible care at all stages of their illness, starting with better diagnosis, and that doctors, patients and their familes all should have access to high quality information tailored to their needs – and that this is just not happening at the moment.
Penny Wilson-Webb of the Rarer Cancers Forum spoke last and explained that people with a rarer cancer are having the slowest diagnosis, fewest drugs, least research, least information and the poorest services. This has to change – and the Rarer Cancers Forum are committed to making sure that it does. With the support of the MPs and medical professionals who attended the manifesto launch, it will be interesting to see what happens in the future.
There were many representatives attending from different small charities and bodies, many working to fund research and to help supply information about their particular rare cancer to patients. However, I and Harry Corrigan (a fellow trustee of AMMF) seemed to be the only people there with an interest in cholangiocarcinoma.
Interestingly, we managed to talk to a representative of one of the large drugs companies who was there as a guest (title, “Business Unit Head – Oncology”), and we asked him why there was so little interest by the drugs companies in funding research into rarer cancers (apart from the glaringly obvious, of course) and he defended his company saying that they would be prepared, in principle, to fund research into treatments for a disease such as cholangiocarcinoma! So, I have taken him at his word and written asking how we go about getting this going … Watch this space – but don’t hold your breath!
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