I've written to the Health Select Committee
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