Orkambi - but probably wont be
Among many others, I've just read the remarkable statement from Vertex Pharma which appears to draw a line under the negotiations for access to Orkambi - and other drugs - for British patients.
Having wrote and deleted a number of tweets in response (mainly due to profanity), I feel the need to write something longer - this is catharsis.
It seems clear that negotiations are over and there's no next step in the offing. Describing the NHS as 'outrageous' and the Government as 'unconscionable' is as clear an indication to that as anybody need.
Vertex's Trumpian assertion that they offered 'the best offer in the world' smacks of exasperation on their part as well as shifts the blame.
I find it baffling that the Vertex people who have agreed the wording of this press release - presumably this would have gone right to the top - close with a plea to Government to intervene.
Guys, a little secret for you, you have been negotiating with Government, not the NHS.
The idea that NHS England doesn't take spending decisions delivered by ministers made on political grounds, is, frankly, absurd.
You'd have thought the guys at the top of a company which amassed $2 billion of sales last year alone, would know better.
Such naivety leaves us to wonder if they were ever sincere.
So, what of the other side, the NHS negotiators hamstrung by minsters? Well, we should probably apologise to them for campaigning for access when it was a complete waste of their time.
Personally, my hopes rest on a change of Government because we have zero chance with Jeremy Hunt and Stephen Brine calling the shots.
It's really disheartening to think that for all the campaigning energy led by the CF Trust and resourced by fundraisers, the campaign appears to have failed.
But, trying to identify the villain of this piece is the most pointless exercise.
There are no winners: but thousands of losers.
Somebody in the know once said to me it was a matter of 'when and not if' access to Orkambi would be granted. In Britain, that might mean when the patent expires.
Having wrote and deleted a number of tweets in response (mainly due to profanity), I feel the need to write something longer - this is catharsis.
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| Orkambi receipt found online |
Vertex's Trumpian assertion that they offered 'the best offer in the world' smacks of exasperation on their part as well as shifts the blame.
I find it baffling that the Vertex people who have agreed the wording of this press release - presumably this would have gone right to the top - close with a plea to Government to intervene.
Guys, a little secret for you, you have been negotiating with Government, not the NHS.
The idea that NHS England doesn't take spending decisions delivered by ministers made on political grounds, is, frankly, absurd.
You'd have thought the guys at the top of a company which amassed $2 billion of sales last year alone, would know better.
Such naivety leaves us to wonder if they were ever sincere.
So, what of the other side, the NHS negotiators hamstrung by minsters? Well, we should probably apologise to them for campaigning for access when it was a complete waste of their time.
Personally, my hopes rest on a change of Government because we have zero chance with Jeremy Hunt and Stephen Brine calling the shots.
It's really disheartening to think that for all the campaigning energy led by the CF Trust and resourced by fundraisers, the campaign appears to have failed.
But, trying to identify the villain of this piece is the most pointless exercise.
There are no winners: but thousands of losers.
Somebody in the know once said to me it was a matter of 'when and not if' access to Orkambi would be granted. In Britain, that might mean when the patent expires.
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