Approval of Azacitidine in the UK

[Anonymous]

I was diagnosed with MDS in January 2007 and am keeping reasonably well. I was to have a bone marrow transplant in January this year but it did not go ahead as the donor failed his medical. Following that, Professor Mufti, my consultant in King’s College Hospital London has prescribed Azacitidine. My consultant in my home town, Dr Ahmad of Queen’s Hospital Burton upon Trent will be approaching the relevant PCT in the hope that I can be treated with the drug whilst awaiting the decision from NICE for general approval in the UK.

In the meantime we are to attend an MDS Patient Forum in Leeds on 14th April and are seeking advice on how best to lobby MP’s to both raise awareness of this drug and progress its approval.

If anyone can offer any advice about this or tell us of their experiences then we will be very grateful.

Stuart and Joy Davidson

[jaxem]

Stuart & Joy
I assume that you are going to the Int’l Bank since no sibling is qualified as a donor. My wife’s sibs never matched so we tried for an umbilical donor but her level of disease was too high. A trial in the US at The Univ. Of Minnesota using our son’s Natural Killer Cells, then Stem Cells, never came to fruition because of the level of her sickness. She never would have survived the pre-treatment. Azacitidine (vidaza) or decitabine (dacogen) is a good alternative which hopefully might work for you.

[Author]

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