Reconsider your decision to refuse Eculizumab for Lewis Brimble
This petition had 142,328 supporters
My name is Lewis Brimble and I'm 15 years old.
Recently the NHS declined my application for Eculizumab, the only drug that could save my life.
I have had DDD, 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. Eventually, when I was 11 my mum donated her kidney to me, and after a lot of complications and 4 months in hospital I slowly got to go back to living a normal life.
In March 2013, after just 15 months, I found out that my disease had come back and that there was damage to my transplanted kidney. Since then I have been slowly deteriorating. My doctors have made it clear that there is only one drug, Eculizumab, that can stop my disease from getting worse and forcing me to go back to a nightmare half-life on dialysis.
But now, NHS England have rejected my application for the drug simply because it is "too expensive".
I know that this drug is expensive but it’s the only thing that could save my kidney. After all I went through after my transplant, this kidney deserves one last chance. Life on dialysis is not really a life at all, merely an existence. Whilst I was on it, I got nauseous all the time and needed feeding through a tube. I had excruciatingly painful headaches constantly and I hardly ever got to go to school. I can’t go back to that.
I know that if I don’t get the drug in the next 18 months I will fail my GCSEs and my dream of becoming a doctor will never come true.
The manufacturer Alexion Pharmaceuticals has refused to drop the eye-watering £136,000-a-year price, making the NHS the only route for us to fund the drug.
If I lived in another country such as USA, Canada, Sweden or even Scotland I could have this drug so why not here.
The NHS has approved this drug for people in the past, and I don’t understand why they won’t give me the same opportunity to live a healthy life.
My appeal to NHS England has been turned down but I am doing my best to change their minds. I know that petitions have helped other children get access to the care they need, and I believe if enough people sign my petition, we can make the same happen for me.
Please sign my petition to tell NHS England that I am worth the money.
Thanks for reading.
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