Cystic Fibrosis Drugs: Orkambi
Debate between Gillian Keegan and Paul Scully(5 years, 5 months ago)
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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 The young son of the lady who had her Orkambi withdrawn at the end of the trial asked her, “Mum, what was the worst day of your life?”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.
Gillian Keegan (Chichester) (Con)
I thank my hon. Friend for securing this debate. I met my constituent Jack when I went to visit our local hospital. It is not surprising that I met him, because he spends six months in the hospital every year. He is now running out of treatment; he has tried everything. He is on 30 tablets a day, and he is on nebulisers. He is trying treatment after treatment, and the treatments are running out. Patients like Jack need this drug urgently, because there is almost nothing left.
Paul Scully
My hon. Friend is absolutely right. People are desperate; this has been dangled in front of them and it is about time that we acted.
I welcome my hon. Friend the Minister to her place—it is fantastic to see her serve as well as she does. I know that Vertex and NICE will be listening to the debate, and I hope that they act. It is so important that that we get this right and get it done now, for the sake of the thousands of people across the country who look to politicians to do things. I talked about the independence of the system, but we need none the less to do everything we can to bring the parties together to ensure that they deal with the matter. As I keep saying, this is about human beings, their life expectancy and their quality of life. I look forward to the Minister’s response.