Keeping up the pressure for access to new medication

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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 debate if his diary allows - the whip's life can be unpredictable. 

It was great to introduce him to E so he can understand first hand that this is a decision which affects real people not just abstract numbers of people or faceless 'communities'.

I hope, and think, we made a good impression on our MP and will look forward to hopefully seeing him in action making the case for Orkambi to the people who can grant us access with the stroke of a pen.

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