Hundreds of children write letters to PM asking for ground-breaking cystic fibrosis drug

Around a thousand letters have been mailed to 10 Downing Street in a new campaign calling on the Government to provide a life-changing drug for people living with cystic fibrosis.

The drug, known as Orkambi, was not recommended on grounds of “cost effectiveness”.

It is reported that around 750 of the 1000 letters are written by children with the life-shortening disease.

They follow a letter first sent to the Prime Minister by seven-year-old Luis Walker.

His mother, Christina Walker, said: “My son Luis is not very well. He is aware of the campaign that has been going on. One day he was sat at the table, he was struggling to breathe, coughing up phlegm and in desperation he said: ‘Mummy why won’t they give me the medicine?’

“I said ‘why don’t you write a letter?’ So he did, he wrote a letter.”

The drug manufacturer, Vertex, and the British Government are currently arguing over the price of the drug.

The drug has been shown in clinical trials to improve lung function and respiratory symptoms in people with cystic fibrosis.

David Ramsden, chief executive of the Cystic Fibrosis Trust, said: “Significant advances in medical science mean new precision medicines are available or in development that have the potential to transform the lives of people with cystic fibrosis.

“We urge the prime minister to ensure that they are available for the thousands of children and adults who have been waiting for far too long.”

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