Have just read that a new drug has been developed that is to be a huge step forward for Cystic Fibrosis patients. Then l thought 'Ere we go again' as l went on to read the drug company and NHS have yet to have talks about the costing of it. No doubt it will be ridiculously highly priced out of most trusts budgets and so wont be readily available to CF sufferers for a long time, sadly too late for many. Like my beautiful DGD aged 12 for one 
. There just seems no sense of urgency whilst it is agonising for the sufferers and their loved ones to know there is something out there but beyond their reach.
I mean should the drug companies be allowed to do this 'Nuh, Nuh, Nu ,Nuh, Nuh look what I've got' routine and then put an impossible price on it. They did this a while ago with an 'amazing MS' drug a while ago. My son has MS too btw ( l'm not the best person to be related to obviously, so much illness in the family - so if you discover me on your family tree , erase me immediately ! 
).
It's just so sad that years later these 'miracle breakthroughs' etc are still not out there or you read about one or two people who managed to get it by taking on the might of the NHS and winning their case.
Sorry rant over.
Now the real reason for starting this thread Anyone care to sign this e-petition for this drug to be priced reasonably ? Not to lay the emotional blackmail on too thick but if you could all meet my DGD l am sure you would, to help lift that cloud that hangs over her beautiful head, if only a little.
www.ipetitions.com/petition/campaign-for-kalydeco