Oral Question: Cystic Fibrosis Drugs


John Stevenson: My hon. Friend is giving personal experiences of how this illness has affected individuals. I met Ayda’s family last week to discuss how it affected them. I have been thinking about the benefits that the introduction of the drug could bring about. One is a saving to the NHS through not needing to use other drugs. The family would need fewer visits to the hospital, which would have an effect on patient care and would free up time for the hospital to look after other patients. Does he agree that it would also bring about a significant improvement to family life, not just for the individual, but for the extended family too?

Paul Scully: My hon. Friend is absolutely right. The young son of the lady who had her Orkambi withdrawn at the end of the trial asked her, “Mum, what was the worst day of your life?” She said, “It was when that drug was taken from me.” Her son—from memory, I think he was seven—said, “You know what? That was the worst day in my life as well.” This is about the extended family and the people around the patient. A number of hon. Members have talked about the cost per patient, but it is not just about the patient; it is also about their friends, family and loved ones.


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