The Velcade Three
Article: Minutes from Meeting with Ann Keen (Health Minister) 20/07/09
Last July (20/07/09) I (Jacky), met with Ann Keen to discuss a few outstanding issues that The Velcade Three had and to share some ideas that we felt may aid smoother transition when Consultants are applying for Velcade for Myeloma sufferers. We also wanted to thank Ann and the people responsible for listening to the Myeloma Campaigners over the last four years. This has resulted in Myeloma sufferers gaining access to Velcade at first relapse and access to Revlimid when relapsing after having had two or more prior therapies.
Ahead of the meeting with Ann Keen, we asked the Myeloma community, through the Velcade Three website if there were any questions they wanted us to raise with Ann Keen on their behalf. No one responded with any questions or concerns. This may be due to the Myeloma community being satisfied with outcomes made by NICE in relation to treatment programs or apathy on their part. We sincerely hope it is not the latter. Enclosed are the minutes of the meeting. Please feel free to respond to any of the issues. Click here to see the minutes.
At the meeting I again asked what evidence supported NICE’s claim that Velcade should be offered at first relapse and not when the Consultant thought it was the right time in the individual’s disease process. I was referred back to Mike Rawlins (chairman of NICE). Below was his response to the same question last year:
Studies considered, and evidence supporting use only at first relapse.
As part of the development process for the guidance we commissioned the National Coordinating Centre for Health Technology Southampton, Southampton Health Technology Assessment Centre (SHTAC) to gather and review all available evidence relating to the effectiveness of bortezomib at first relapse. This reflected the remit passed to us by the Department of Health. We have published their findings on our website at: [link] We have also published the other evidence we considered, such as the manufacturers submission and the expert evidence statements, and you can find these at: [link] Following the appeal in 2007, we requested further analysis on the cost-effectiveness of bortezomib at first relapse, and these documents are all available on our website at: [link]
We considered another meeting with NICE, but then it was felt that going over old ground is not going to change the answer to the question. Therefore we have not pursued another meeting with Mike Rawlins.
Over the past 12 months Janice has been extremely ill and therefore has not been able to fulfill her usual active campaigning role. Also Marie and I are expecting to undergo more treatment as our Myeloma is becoming active again. It is with this in mind that if the Myeloma community feels our work is done then we, “The Velcade Three”, will donate funds made to the charities previously mentioned. We will not make any decisions for four weeks. This gives anyone in the Myeloma community time to e-mail us with any outstanding issues that they feel we need to address before stepping down from our active role as campaigners for Velcade. Please e-mail us with your thoughts at: myeloma@velcadethree.co.uk
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