Seven-year-old Luis Walker from Horam received a personal letter from Prime Minister Theresa May replying to his plea to make a cystic fibrosis drug available on the NHS.
Luis was diagnosed with the debilitating disease when he was three weeks old. His letter was one of hundreds written by children across the UK handed in to No !0 in May. They want to access the precision medicine Orkambi that could benefit half the children suffering from the disease.
Luis mum, Christina said: “Luis got a really nice personal reply from Theresa May and I got one saying she ‘wants this issue to be resolved swiftly.’ In Parliament Jeremy Hunt called for the drug company to be fair in their new offer, which is expected next week. I’m praying that things are finally moving.”
Mrs May wrote: “I am sorry to read that you are not very well and that you have to spend a lot of time in hospital. It must be very hard for you and your famnily but I have no doubt that you are extremely brave. I am pleased you have taken the time to write to me about Orkambi, I understand that it will make a real difference to your life and I am determined to do what I can so people who are unwell can access medicine that can make them feel better.”
She explains the issue is complicated and her office has written to Luis’ mum to explain this in more detail. Campaigners say while conventional treatments target symptoms, precision medicines tackle the underlying genetic mutations which cause the condition. Orkambi has been found to slow decline in lung function.