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BBC article about funding drugs for rare conditions

I suspect the BBC reporters aren’t really looking for MS sufferers BUT PPMS is relatively rare and it angers me that Fampyra is so expensive when it is one of the limited lifelines we have so I’ve filled it in and thought some of you might want to do the same :slight_smile:

Sonia x

Hello Sonia, I’ve just filled it in. I tried to do it without getting red. We’re a bit better than that aren’t we? The trick with the BBC is that they like a bit of an edge to get their teeth into. I’ve tried to be as comprehensive but as succinct as possible. All the very best, Steve.

Hi Steve, me too, just tried to approach it as calmy as possible. I was pretty shell-shocked when I was told PPMS and the attitude was very much “see you next year then”, don’t get me wrong, my Neuro was knowledgeable and kind and took plenty of time explaining thngs to me, he even looked up Fampyra for me but shook his head. I think when you are likely to have something like PPMS then the NHS should at least support trying things that might be beneficial. Fingers crossed we might be heard at least :slight_smile: Sonia x