Recently the NHS have declined my application for Eculizimab, the only drug in the world that could save my life. I will use this petition to help my appeal to them. My name is Lewis Brimble I have had MPGN, a life threatening, ultra rare kidney disease since I was 9 years old. Very quickly after I was diagnosed it progressed into end stage renal failure, so I spent 2 years on dialysis, before eventually receiving a kidney transplant from my Mother in December 2011. Life on dialysis is not really a life at all, merely an existence. I was nauseous all the time and required overnight feed through a tube directly into my stomach due to my complete lack of appetite. On top of this I had excruciatingly painful headaches which no medicine could help. I hardly ever went to school which you can imagine did not help one bit. My kidney transplant changed my life and even though I had lots of post-operative complications, I slowly became healthy and I was a normal boy again. In March 2013, a kidney biopsy showed that I had recurrence of the disease in my transplanted kidney, which meant that everything would happen again if we did not find a more viable treatment. In March 2015, after significant protein was found in my urine along with other abnormal blood levels, another kidney biopsy showed that the disease had progressed substantially and that there was prolific damage to the kidney. We had been looking into Eculizimab for a long time and we had previously been told that when I got to this stage I would get Eculizimab. Now we don't know how long it will take for me to get to the stage when I need dialysis, but if the drug worked it would stop my disease from getting any worse. An application was made to NHS England for Eculizimab by my regional hospital however it was refused on the grounds that it was too expensive. It is a very expensive drug but this comes at a time for me that if I deteriorate in the next 18 months I will surely fail my GCSEs and my dream of becoming a doctor will remain dreams and won't be possible. I will get one chance to appeal the decision by NHS England and I am doing my best to change their minds as I believe I deserve this drug. Thanks for reading and signing. Lewis












