Luis is a kind, loving 8 year old boy who has cystic fibrosis. There is a drug called Orkambi that could help to slow his decline and give him a longer life but NHS doesn’t fund it because it’s deemed too expensive at the manufacturers asking price of £104,000 per patient per year. We have been campaigning together with thousands of others for access but we’re still waiting and negotiations are stalling again.
The photo above shows Luis having treatment. The one below is Luis and I telling This Morning viewers how much he needs Orkambi and what life with untreated cystic fibrosis is like. Luis does between and 3 and 4 hours of treatments, physio and medicines every day - just to maintain his current level of health. Cystic fibrosis is progressive, so without a drug like Orkambi which tackles the root cause, reducing infections and the rate of lung function decline, Luis will get more and more poorly and suffer an early death. I am part of a group that has found generic versions of Orkambi and we have set up a Buyers club to source the best prices from around the world. It will still cost £20,000 + per year to treat Luis and I can't afford it all on my own. Any help that anyone can give will be hugely appreciated and will extend Luis' life. You can find out more about the Buyers Club here: www.cfbuyersclub.org and https://www.bbc.co.uk/news/health-48357762