The Velcade Three
Article: All Party Parliamentary Group on Cancer - 9th Annual Britain Against Cancer Conference
We were once again invited to attend The Britain Against Cancer Conference hosted by the All Party Parliamentary Group on Cancer held in London on December 4th 2007. Jacky and Janice took up the invitation but unfortunately Marie was still too unwell to attend.
Prior to the event we wrote and e-mailed Andrew Dillon, Chief Executive of the National Institute for Health and Clinical Excellence, Alan Johnson, Secretary of State for Health and Mike Richards, National Cancer Director at the Department of Health to ask for a short meeting with each one of them to talk through issues we have regarding the final ruling by NICE on Velcade. We accept this ruling is now in law and cannot be changed but feel there are details we need to discuss with them which would help us to gain a clearer insight into how certain elements of the final appraisal were decided. Why and when was the wording changed from after 1st to at 1st relapse, where has the research been taken from to show Velcade to be at its most effective at 1st relapse and what clinically effective licensed treatment are they proposing to be offered to Myeloma sufferers who are post 1st relapse. As a result, this ruling will eventually affect ALL Myeloma sufferers as and when they experience a further relapse and are not allowed to re-visit Velcade. For us a major part of our campaign for access to this drug was the fact that it could be re-visited again when a patient relapses, thus giving Myeloma sufferers peace of mind for the future when our blood results begin to falter.
Neither Alan Johnson or Mike Richards took the time or trouble to either reply or acknowledge our correspondence, in fact we were amazed and dismayed to find neither Alan Johnson nor Andrew Dillon did not even attend the conference. The only person representing NICE was a young man working in the communications field, who by his own admission had no specialist knowledge of Velcade so therefore could offer us no help with our questions. However since then, following further contact with NICE, we have been offered a meeting with Chairman Professor Mike Rawlings. The meeting will take place in Newcastle in the very near future.
In attendance at the question and answer session was Professor Mike Richards and Ann Keen, Minister of State for Health Services. We asked Mr Richards why he chooses not to answer our letter asking for a meeting. We also asked why NICE had restricted the drug Velcade to patients suffering their first relapse of myeloma. Mr Richards said that the problem here was that NICE was limited to look at license indications only, and that maybe a review was needed. As to not responding to our written communications, he said he had been extremely busy and therefore had not opened his mail for two weeks! Ann Keen concluded that it was particularly worrying to see patients in the audience feeling “let down”. Prior to Ann Keen leaving the conference prematurely she stated she would meet up with us to discuss the matter in more detail. Since the conference we have heard nothing from Ann Keen, so we have contacted her PA. We are now waiting for Ann Keen to contact us to arrange a meeting, which she promised. Sadly Professor Mike Richards has still not contacted us.
We came away from the Conference this year feeling both disappointed and unimpressed. The question time, both in the main hall and in the breakout sessions were considerably limited and the main thrust of the Conference seemed to be that half of all cancers are due to lifestyle choices, diet, smoking, weight etc and are therefore preventable. Do these people realise how devastating it is to be sitting there with an aggressive incurable illness and in effect being told “its your own fault”? There is no doubting the importance of these issues but surely more research needs to be done into other aspects, environmental pollution for example.
As cancer patients we have a unique insight into this disease and its effects both physical and psychological. It is so frustrating when we are blocked or denied access to the very people who, in theory, are there to help us in our fight for life. As the Velcade Three, our health permitting, we are always available to meet or discuss elements of Velcade or Multiple Myeloma with anyone who has concerns on these issues.
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