The Velcade Three
Article: Mixed fortunes for myeloma patients
There are mixed feelings today amongst campaigners The Velcade Three following the publication of the Final Appraisal Determination by NICE on Velcade.
For Janice Wrigglesworth, and any patients who have recently been diagnosed with multiple myeloma, or those who haven't yet relapsed, there is joy and relief. These patients will at last be able to be treated with Velcade on the NHS following the money back guarantee offered by the manufacturer. However, Janice can not feel happy with the results because she has campaigned for Velcade to be available to all myeloma sufferers at the point of need. However, this is not the case.
For Marie Morton, and those patients who are on their second or third relapse, this decision is quite simply too little too late. Under this guidance they won't be eligible for treatment with Velcade.
For Jacky Pickles, and those few patients in the UK who have been lucky enough to receive a course of Velcade already, there is uncertainty and fear. Despite the fact they are living proof of the effectiveness of Velcade, they will have to fight to get further treatment as and when they need it.
On what should have been a day of celebration after two years of campaigning for access to Velcade on the NHS, we are instead angry and disappointed that NICE has once again ‘moved the goalposts'.
In the Appraisal Consultation Document (ACD) released in June, NICE indicated that Velcade would be available to all patients after first relapse, meaning that no-one would die of myeloma without having access to this treatment. But once again, they have changed their minds. Though this decision will help a lot of myeloma patients, there are some of us who are devastated because NICE gave us hope and have taken it away again.
NICE had nothing to lose by approving Velcade for all patients at first relapse and beyond - the manufacturer had offered a money back guarantee - If it didn't work, the NHS wouldn't pay. Why shouldn't myeloma sufferers be able to have the treatment again if it worked the first time?
We have seen from Jacky the benefits to be gained from Velcade - 16 months after receiving this treatment; she is well and working as an NHS Midwife. We hope that steps will be taken to ensure this group of patients who fall between two stools- who, like Marie had passed first relapse before NICE made their decision- will be given the opportunity to try Velcade.
We look forward to full guidance being issued so that most myeloma patients can access Velcade, but urge clinicians to prescribe Velcade for all other myeloma patients who need it.
No myeloma patient should die without having Velcade. We won't stop campaigning until everyone is allowed Velcade at the point of need after consultation with their consultant.
Copyright © The Velcade Three, 2010.