Thank you Ellen for your post, after having my mum diagnosed with MM just over two weeks ago I could hardly believe the news of these two drugs being dropped from the CDF. Obviously my mum is only just starting Velcade treatment so it doesn’t affect her quite yet (I hope not for a little while anyway) but I can see that she is one of the people that look set to be deemed ‘too expensive’ by this government to help in the future.
I understand from your post that Myeloma UK is doing everything they can to get these reinstated via NICE rather than the CDF but if agitation from carers and patients alike can help to focus government attention on the issue then I for one would be very willing to lend my support to any kind of protest etc that you think would be effective. This must be a terrible time for anyone approaching their first stage relapse, it is bad enough knowing that I and my family are likely to be faced with this in due course with my lovely mum but what could we do now to help those in most immediate need? Could a media campaign via Facebook and Twitter help at this stage or use of petitions etc? I am a graphic designer and I would willingly have a look at creating some Facebook type protest graphics for example if it helps. Perhaps you could offer some advice to us as to what kind of pressure/actions might be useful from carers and patients to bolster your arguments.
Thank you for all you are currently doing.
