This Morning

Boy's plea to the US, to lower cystic fibrosis medication

Must See 16/08/2018

An adorable eight-year-old boy with cystic fibrosis has pleaded to the US drug firm to lower the price of his medicine so it can belive available on the NHS.

Little Luis Walker is from Horam, East Sussex. He has recently handwritten a letter to the bosses at Vertex, asking to bring down the cost of Orkambi. Which is known in the industry as the "Wonder Drug" which helps Luis cystic fibrosis and makes him, 'feel much better and not have to spend so much time in hospital'.

Both Luis and his mother, Christina appeared on the British show, This Morning yesterday who outlined their issue and the case they have. She explained how the £100,000-a-year medication was 'transforming lives' of those who suffer from the incurable lung disease like Luis. 

She was describing her son's case as urgent due to his time continually going in and out of the hospital. She explained how tired he is, and how he is so tired that he 'keeps laying his head back'.

In Luis's moving handwritten letter to Vertex he told them: 

'You have the medicine that can make me feel much better and not have to spend so much time in hospital please sell it to my country.

'If your son had cystic fibrosis I know you understand and lower the price of Orkambi.'

The magic drug Orkambi, gained a European licence 1,000 days ago. However, the National Institute of Care and Excellence has not yet granted the effective costing to the NHS yet.

It is not just Luis awaiting this drug to lower its price. There are hundreds of other children who need this drug in the UK. These children are expected to write to Vertex Pharmaceuticals on Wednesday, as a way to resolve the issue of the cost of the drug.