Cystic fibrosis children plead to PM for drug

Hundreds of children plagued by a life-shortening disease have written to the Prime Minister begging her for access to a “life-saving” drug.

More than 1,000 letters are to be delivered to 10 Downing Street, imploring Theresa May to intervene and help patients with cystic fibrosis get access to Orkambi.

Around three quarters of the letters have been written by children with the condition.

The campaign was inspired by a seven-year-old who wrote to the prime minister asking: “Please can you give Orkambi to me so I will feel much better and won’t have to spend so much time in hospital?”

After hearing about his letter, friends, family, teachers and fellow patients decided to also write letters to Mrs May.

“It snowballed into a massive emotional outpouring of desperation,” said his mother Christina Walker.

Mrs May is also expected to receive a question from Teresa Pearce, Labour MP for Erith and Thamesmead, about Orkambi during Prime Minister’s Questions.

Ms Walker from Horam, East Sussex, 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 write a letter and felt good that he’d done it.” She added: “Luis won’t live to make his teens if he doesn’t get this drug.”

More than 1,000 letters will be handed over later today by Gemma Weir and her four-year-old daughter Ivy who also suffers from CF.

Campaigners want Orkambi to be made available to patients on the NHS. According to the Cystic Fibrosis Trust, Orkambi has been found to slow decline in lung function, the most common cause of death for people with cystic fibrosis, by 42%.

Cystic fibrosis is a genetic condition affecting more than 10,000 people across Britain.

Luis Walker.