B positive

The batle for access to Orkambi continues and we've sent our MP another letter asking him to add his name to a different letter which is going to be sent to Jeremy Hunt - the health minister. I've been indulging in a bit of social media campaigning relating to access to Orkambi with this bloke.   This is Steve Brine, MP for Winchester and under secretary of state for health. It was Mr Brine who was in the room listining to the access to Orkambi debate on behalf of Government. Paraphrasing his summing up he said: you wanted us to hear, we have heard you and we'll act - something like that anyway. I've been tagging @brineminister in a range of twitter messages relating to CF. I feel he needs to know that CF never takes a day off and I sort of hope that my tagging of him becomes a bit irritating to him for that reason. Whether he reads his own twitter or not I've no Idea, but you'd think his 'people' would flag something like this up to him. Mr B...

Any of you who have been following the posts on this blog - or are otherwise involved in the CF 'community' in some way, will know that the CF Trust is leading a campaign to obtain access to Orkambi - the first precision medicine which targets the underlying cause of CF in patents with the F508-Del-CFTR mutation.  We've been doing our bit - signing petitions and making our MP's life a misery by firing off letters to him for the past two years.   The recent online petition reached its 100,000 target - thanks if you signed it - and the subsequent Westminster Hall debate has been scheduled for Monday 19th March. The Trust has been asking people to visit their MP, to ask if they can attend to represent us. So, last Friday, E and I packed up our bike and chariot and set off for the HQ of Jeff Smith - MP for Manchester Withington constituency.   Jeff has been supportive of our aims and been responsive to us over the past months and agreed to attend the debat...