The Velcade Three
Article: A general update
We wanted to try to explain what this week's final ruling by NICE means to us, the Velcade three, and all myeloma sufferers in England. It's been a strange few days for each of us, trying to make sense of this unexpected and unjust decision made by this government body.
When the final result of the appeal, which we attended back in February, was made public and announced on Thursday we were all shocked and angry at its outcome and we and our families, to tell the truth, are still struggling to come to terms with and make sense of what it will mean to each of us individually.
We really believed NICE were going to allow everyone who needed Velcade access to the drug. I don't think some people realise how much it takes out of us to keep this issue in the public eye, or that for us it truly is a life and death situation.
Back in June, in a draft document issued by NICE, we, the Velcade three, Myeloma UK and all other charities concerned with the appeal process and the drug company which has made this entirely innovative offer of a risk- sharing agreement to the NHS were led to believe Velcade would be available to ALL myeloma sufferers - the very thing the Velcade three have been aiming to achieve from the start of our campaign two years ago.
But when the final ruling was made public on Thursday we were stunned to discover NICE has “moved the goal-posts” and that the wording of the draft document has now been adapted to read that only patients at first relapse are to be given Velcade on the NHS, ironically directly affecting two of the Velcade three, Jacky and Marie who now will not be able to access Velcade at point of need without having a real battle on their hands. Anyone needing to access Velcade at a further relapse will have to go through a strenuous and distressing confrontation with their individual PCT's to try to gain access to and be allowed to re-visit the drug-all this at a time when the patient will be feeling far too ill to cope with all this extra stress and with no guarantee the process will be successful.
We find this ruling to be unfair and unjust beyond belief: the myeloma community has not been given what it deserves and NEEDS at this point in time. In truth by this ruling NICE has totally let down and penalised ALL myeloma sufferers, it's all very well to give Velcade at first relapse but as patients we need to be able to re-visit the drug and this decision takes away EVERY patients chance to do that in the future. When the drug company came up with their risk-sharing scheme we all breathed a sigh of relief and dared to presume, wrongly as it's turned out, that we would achieve a positive outcome for all and at the moment we are all feeling incensed, disappointed, and distressed by this ruling.
Copyright © The Velcade Three, 2010.