Seven-year-old joins thousands pleading with PM for ‘life-saving’ drug Orkambi for children with cystic fibrosis

Luis Walker who has cystic fibrosis writes to Theresa May pleading for Orkambi drug. Credit: (CF Trust/PA)

Luis Walker is one of thousands of children who have written to Prime Minister Theresa May asking for access to “life-saving” drug Orkambi.

Writing in his letter he said: "Please can you give Orkambi to me so I will feel much better and won't have to spend so much time in hospital."

More than 1,000 personal 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.

  • What is Orkambi?

Orkambi is not seen as a cure but it is said to slow the decline of lung function, which is the most common cause of death for people with the condition.

People with cystic fibrosis have a life expectancy between 30 to 40 years.

  • Who has access to it?

Orkambi is currently only available on compassionate grounds.

  • Why is it not available to everyone?

There is a deadlock between the drug's manufacturers, Vertex Pharmaceuticals, and the Department of Health.

Although it has been recognised as an "important treatment" by health watchdog NICE its too expensive to be provided on the NHS, politicians argue.

  • What is cystic fibrosis?

It is a genetic condition that affects the lungs and digestive system.

  • How many people have it?

It affects more than 10,000 people across the UK.

  • Can Orkambi help everyone who has cystic fibrosis?

It is only appropriate for around 50% of people with cystic fibrosis.