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In anticipation of a parliamentary debate on access to a drug for cystic fibrosis, the 4-year-old Harrier Corr family recorded a video diary to show the impact of life with disease.
In the UK, more than 10,000 people are suffering from a debilitating genetic lung disease and for about half of them, Orkambi could make a big difference, but the NHS says funding is too expensive .
The official price of the drug is about £ 105,000 per patient per year. Makers Vertex says that, in practice, the price negotiated with health systems is always lower than that.
Emma, Harriet's mother, says the dream is to have access to drugs.
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