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TX: 29.01.07 - Velcade/George King Interview

PRESENTER: Peter White
THE ATTACHED TRANSCRIPT WAS TYPED FROM A RECORDING AND NOT COPIED FROM AN ORIGINAL SCRIPT. BECAUSE OF THE RISK OF MISHEARING AND THE DIFFICULTY IN SOME CASES OF IDENTIFYING INDIVIDUAL SPEAKERS, THE BBC CANNOT VOUCH FOR ITS COMPLETE ACCURACY.


White
Health is our subject tomorrow. The National Institute for Health and Clinical Excellence or NICE as it tends to be known is the chief organisation which rules on the medicines which should be available free on the NHS, chief organisation that is in England and Wales, in Scotland the same function is performed by the Scottish Medicines Consortium. And before NICE reaches a final verdict on individual drugs it's up to each primary care trust to decide policy on whether to allow the prescription of new drugs. Now this situation is very much uppermost in the mind of 56-year-old George King from Cleveland on Teesside. He's currently in remission from myeloma, or bone marrow cancer, after surviving two bouts which have attacked is spine and destroyed vertebrae. If his cancer returns for a third time and sadly there is a considerable risk that it will, he wants to be treated with a licensed drug called Velcade. Now at the moment primary care trusts are making the decisions on Velcade in England and Wales. NICE has ruled that the drug has significant side effects and isn't cost effective but that decision has gone to appeal. In the meantime in Scotland the drug has been allowed and as a result Mr King is considering uprooting his family to go north of the border.

King
I have bone pain, I've got limited movement - I can't walk very far without the use of a stick and certainly longer distances with a wheelchair. When I was diagnosed in 2002 I was going three months to three years to live but luckily with the treatments that have come along I've managed to fight the cancer now for five years. When I first diagnosed I had a high dose steroid along with chemotherapy and then I had - in the September of 2002 - a bone marrow auto stem cell transplant and that actually gave me remission for 22 months.

White
Now there is a drug that you think could help you at the stage to which your condition has now developed, tell me about that.

King
There is a drug called Velcade which has been quite successful throughout the world for third line treatment, which would be my case next time the cancer comes back. We've followed the progress of Velcade over the internet from its use in the States since 2003 and certainly as it's been adopted in Europe and of course in Scotland. But NICE have never considered it to be economical for use in England and Wales.

White
So what are you actually planning to do?

King
Our plan is to relocate from our present home in Skelton to the Scottish borders. We spent a week in the borders looking at property and we've come to the conclusion that the easiest solution would be to move into rented accommodation there first and then put our property in England up for sale.

White
And you're prepared to go to these lengths to get access to the Velcade drug?

King
We discussed it as a family and we feel that if it can buy me a couple more years then the upheaval of moving to Scotland and being separated - the family considers that's worthwhile. In the long term we feel that the way NICE comes to their decision on drugs we're more likely to get those in Scotland than we are in England and Wales.

White
George King, thank you very much indeed.

Well literally while that interview was taking place we received an e-mail from the primary care trust which seems to set a rather different gloss on things. It says this:

"Currently within the North East of England and ahead of the final decision from NICE Velcade is approved for use as a third line agent after all licensed options have been exhausted in the treatment of myeloma. Currently it can be prescribed in this manner without a direct request from the PCT. This approval will have to be reviewed once the final NICE guidance is forthcoming."

Well George King is still with us. George, what's your reaction to that?

King
I'm extremely surprised at that because this is a complete U turn to the decision - certainly the letter that I got from the PCT in September, where they categorically stated that Velcade was not available. Obviously this decision, if it's right, is wonderful news for myself and all myeloma sufferers. I was under the impression that it was a definite no for Velcade. I'd like to see certainly NICE agreeing with this statement and approving Velcade for third line treatment and if that was to happen in February then it certainly would impact on my decision - there's no way I want to leave Teesside.

White
Cancer patient George King deciding whether to stay in England after we told him that his primary care trust appears to have changed its policy and would, at the moment, prescribe Velcade if his myeloma were to return. While the trust - Redcar and Cleveland - has not been able to tell us when it changed its guidance, it also hasn't confirmed whether consultants have been told of this change, patients certainly don't seem to know. The only thing that is clear is the confusion. NICE describes itself as the independent organisation responsible for providing national guidance on the promotion of good health and treatment of ill health but with stories like that one, that we've just heard, from George King would you say NICE is succeeding in its aims? On tomorrow's Call You and Yours we'll be putting that question to the chief executive of NICE and as always taking your calls.


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