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

Since May 2017 E has been on an intensive, time consuming and sometimes soul destroying treatment regime. The aim - to rid her lungs of   Pseudomonas aeruginosa . She has inhaled antibiotics twice a day – every day and had them pumped into her veins. We wanted to eradicate this bug which had made itself at home in her lungs. We didn’t want any permanent, lasting damage. She needed to have 12 months clear before we could stop this additional treatment. The pseudomonas grew back. Twice. Reset the treatment clock. Positive mind-set. Resume our new normal. We have poured our hearts, minds and toddler negotiation skills into her treatment - never missing any. This has meant we have had to plan days out and activities around her treatment. Ensuring we always had access to electricity, to a television (distraction!) and to hygienic surfaces so that we could clean, air dry & sterilise medical equipment. We still had fun, adventures & lots of love but it was alwa