The government could make the drug Orkambi affordable for the NHS. Until then, people will suffer unduly

Luis was three weeks old when we found out he had cystic fibrosis. Neither my husband nor I had heard of the condition before, but we knew very quickly our lives were about to change for ever from that moment. Of all of the stats thrown at you when you hear the diagnosis, one sticks out more than any other: Luis’s life expectancy was 38, my age at the time. We would most likely outlive our baby boy.

Luis is eight years old now and, though parts of our routine will be recognisable to every parent, he has a life of many challenges. It starts in the morning with a medical regime that takes up to two and half hours. Every day he takes 22 tablets, three nebulisers, two inhalers, nasal sprays and lots of supplements. The condition means he struggles to put on any weight, so we need to keep a constant eye on his eating – to ensure he gets much more than the recommended calorie intake for children of his age. He’ll have physio sessions, too, and be surrounded constantly by adults worrying if he’s OK. Then, before bed, he’ll have another hour and a half of his medical regime. Those are the good days.

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Read More Ministers could change the lives of cystic fibrosis sufferers. So why don’t they? | Christina Walker

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