B positive

Big news splashed across the media today in the latest attempt to reach a resolution on access to Orkambi for CF patients in England and Wales.  The front page of The Guardian and R4 Today both - among others - covered the access battle with The Guardian reporting how the suggestion that Vertex's patent could be annulled under a 'crown use'. This, as the article explains allows the Government to 'effectively override a patent in the national interest.'   deeds, not words While I fully endorse the approach and would enjoy the Vertex-strength meltdown if it did occur, it does worry me that the result would be that Vertex would just decide to wash its hands of England for future medications. The piece notes the decision from Vertex to remove Symkevi from the NHS approval process meaning price negotiation will never come to pass for newer treatments from Vertex - this is from a company which is led by people who took an oath. So, is this just posturing for...

It's been a while since we blogged but, amazingly, we still wait to get access to Orkambi. The CF Trusts' campaign has led to the Heath Select Committee seeking evidence from people. So, here's what I've just submitted.  Good afternoon It was almost three years ago that my wife and I became very proud parents to a wonderful girl. She was everything we ever dreamed of. Within a fortnight of our dreams coming true, we were hit with the bombshell of her diagnosis of Cystic Fibrosis. The staff at our hospital were, and continue to be, superb and incredibly supportive. At our first meeting with them, they explained that, for the first time, there are pharmaceuticals available which can treat the underlying cause of the disease and that there are reasons for optimism. Since then we’ve devoured research papers, taken part in clinical trials and had that optimism repeatedly dashed by the inability of the two parties to come to an agreeme...

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...