The Velcade Three
Article: 10 Months on from NICE guidance on Velcade.
In May of this year we wrote to Myeloma UK, Cancer Charity Cancerbackup and the drug company, Ortho Biotech which makes Velcade.
We wanted to know how many people have gained access to Velcade since October 2007 (NICE guidance) and also how many patients were given Velcade in the six months prior to the guidance. One of our aims was to establish whether the Risk Sharing Scheme (Velcade Response Scheme) was being utilised by the NHS.
We received an e-mail from Cancerbackup, stating “Cancerbackup doesn’t keep details of numbers of callers who are on a particular treatment, so I’m sorry not to be able to help. Also, Cancerbackup has now merged with Macmillan Cancer Support and so we’re not able to direct people to your survey – I’m sorry”.
We were also interested to hear the views of people who have been treated with Velcade since the guidance was issued - to see what their experience has been and how easy it has been to obtain the treatment. Our objective is to compose a geographical picture of which PCT’s are supporting Myeloma Sufferers by offering Velcade at 1st relapse and under “exceptional cases”. Please fill in our survey which is on our home webpage if you have had Velcade after October 2007.
A survey released by The Rarer Cancers Forum last week (Yorkshire Post, 11 August 2008) uncovered shocking statistics about which PCTs approved applications for rarer cancer drugs and which refused them. The figures were obtained from 62 of England's 152 PCTs using the Freedom of Information Act. It revealed that 100 per cent of applications were rejected in some areas, while in others every single request was approved. This survey shows that the exceptional cases process is in chaos and patients are suffering.
We also received a reply from Ortho Biotech which stated, “Following the NICE guidance over 80% of the Hospital Trusts has signed up to the Velcade Response Scheme… In addition following the NICE guidance access to Velcade for Myeloma patients at 1st relapse has improved significantly in England, Wales and Northern Ireland. We estimate at least 500 extra myeloma patients will gain access to Velcade this year on the NHS”.
This reply seems encouraging. What are your views of access to Velcade? We would love to hear from you. E-mail myeloma@velcadethree.co.uk.
Copyright © The Velcade Three, 2010.