B positive

Ive written a letter to the new health minister. And here it is. Dear Mr Hancock Congratulations on your recent appointment as Secretary of State for Health and Social Care. I am writing to you as a concerned father to a two year old girl who you are in a position to help. My daughter has Cystic Fibrosis (CF) – an incurable life-shortening genetic disease. She is in the care of the excellent staff at Royal Manchester Children’s Hospital and, like the thousands of others with CF in the UK, has a daily routine of treatments to maintain her vital functions as long as possible. Much of her treatment involves the consumption of medications which help prevent infection taking hold and destroying her ability to breathe. This masking will only last so long and there is a grim and inevitable end point to this path of treatment. New treatment options are the things which I cling to, to provide my daughter with an alternative route as outlined above. News of clinical tria

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.  Orkambi receipt found online 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