She had to be gravely ill to get Orkambi
JESSICA’S STORY
A-LEVEL student Jessica Cranfield-Smith is one of the few Britons actually on Orkambi – and without it her family say she would not be alive today.
Jessica, 17, was granted the life-saving drug by Vertex on “compassionate grounds” after accepting she was gravely ill.
Her mum Sharon Cranfield, 53, contacted the US pharmaceutical giant directly to plead the case.
Now Jessica is well enough to study two A-levels at school in Tadworth, in Surrey. But her mum Sharon has vowed to keep on campaigning so that Orkambi is freely available on the NHS.
She said: “Letting children have Orkambi only when they are close to dying is plain wrong.
“Yes, Jessica is now on the drug but it is a bitter pill to swallow in a way, as she has had it simply too late.
“Jessica already has irreversible lung damage and tragically will still die younger than a healthy person – this makes me so angry.
“I only found out about the compassionate grounds possibility through a friend. No doctor mentioned it to me.
“I fought really hard for her to get it and if she hadn’t I fear she may not be with us now as at one stage her lung function was down to 33 per cent. The drug stops the clock on her cystic fibrosis but won’t make her improve or better.”
The mother-of-three collects three months’ worth of Orkambi from King’s College Hospital in London, as Vertex will not deliver.
Jessica takes two doses twice daily but still has to spend hours on other therapies.
Sharon added: “She is my special princess. She’s gorgeous but shy – brave but scared for her future too.”