Post-debate Orkambi activity

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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 Brine will have constituents with CF and I just hope they are impressing upon him the gravity of the decsion he can help make.

 If he was my MP, it would be made crystal clear.


Comments

  1. Marnold26 March 2018 at 20:24

    I am a constituent and I have. He mentioned me but not by name in his summation.

    ReplyDelete
  2. Unknown27 March 2018 at 13:32

    Hi Marnold, its great that he was there to represent you and others with CF or people caring for others with CF. The debate was remarkable for a few things, one of them being the overwhelming consensus from all political stripes that action was needed. That's down to the efforts of normal people up and down the land. I think it's vital that we keep fighting.

    ReplyDelete

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