Posted by Michael Wonder on 15 Aug 2018
'You have the medicine that can make me feel much better': boy, 8, pens letter asking drug company to lower prices
14 August 2018 - Watch eight-year-old Luis Walker, who has cystic fibrosis, read his letter to a pharmaceutical company urging them to lower the price of a drug so it can be made available on the NHS.
Cystic fibrosis, which affects around 10,000 people in the UK, leads to sticky mucus building up in the lungs and digestive system.
Luis and hundreds of other children are expected to write to Vertex Pharmaceuticals on Wednesday, in a bid to bring a resolution to negotiations over the cost of the drug.
Orkambi received its European licence exactly 1,000 days ago, but the NICE has not recommended it for use on grounds of cost-effectiveness.
