The Velcade Three
Article: One year on since NICE recommended Velcade at 1st relapse on the NHS ... What's happened?
In the past year we (the Velcade Three), have been busy advising and supporting Myeloma sufferers and their families with regard to accessing Velcade. Our support is not just confined to the UK. We are in contact with Myeloma sufferer’s world wide. This gives us some insight into which countries give Velcade readily and which countries don’t. We support Myeloma sufferers to access Velcade via the NHS regardless of where they are in their disease process.
One of our aims was to obtain a geographical comparison of which PCT’s are offering Velcade and which are turning Myeloma sufferers down, leading them to go down the appeal route. We were disappointed in the response; hoping more people would have completed forms to give our findings clarity. So far, only 18 people have completed the survey which is still accessible on our home page.
The information gained from the survey; together with e-mails which we have received from Myeloma sufferers and their families have given us a snap-shot into PCT’s that are supporting the use of Velcade and PCT’s that are not. Areas which we have supported Myeloma sufferers through the appeal process over the past year are Grimsby, Hull, Sheffield, Bradford and Bristol. All of the Myeloma sufferers that have asked for our help, have, after the appeal process been offered Velcade. However, the time lapse of up to 12 weeks in some cases is a major cause for concern. The Myeloma is progressing while beaurocracy takes place. Sadly some Myeloma sufferers were too ill when their families made contact with us to start to apply for Velcade. Our thoughts go out to their families.
Two stories have given us cause for concern. One is of a young Myeloma sufferer who was refused Velcade at 2nd relapse in the Derby area. This person managed to access Velcade in a trial setting. Thank god for trials.
Another Myeloma sufferer from the Grimsby area was refused Velcade. Initially there was a dispute on whether it was their 2nd or 1st relapse. After reviewing the evidence it was agreed it was their 1st relapse. The appeal process was started however their myeloma had escalated and their consultant at Grimsby hospital commenced CDT prior to waiting for the appeal outcome. The appeal was submitted, but by the time this was put forward to the appeal panel the CDT had been effective therefore the decision was made not to continue with the appeal. However, the concern is that when this person needs further treatment they will be past 1st relapse; therefore, Velcade will not be as easy to attain. Please if you are at 1st relapse consider Velcade as the drug of choice with your consultant at that time.
Some Myeloma sufferers are being re-challenged with Velcade. I (Jacky) had Velcade in the PAD trial back in February 2006 when I was at 2nd relapse. I managed two years disease free after having had only 2.5 cycles of PAD. Earlier this year my Consultant applied for Velcade for me at 3rd relapse and was successful without delay. I have heard that a Myeloma sufferer from the Doncaster area is set to be re-challenged with Velcade. We, the myeloma community must continue to ask and get our lead professional to apply for us to access Velcade, despite where we are in our disease process.
Lastly, please can we ask you to complete our survey if you have had Velcade, or been denied it since NICE made its recommendations in October 2007. Our aim is to share with you a geographical representation study regarding access to Velcade at the point of need. In order to achieve this aim we need lots more data.
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