Cystic Fibrosis sufferer Harriet Corr, 5, is to finally get her life-changing 'magic medicine'

Harriet Corr, five, is about to finally receive the cystic fibrosis drug Orkambi after years of campaigning.Harriet Corr, five, is about to finally receive the cystic fibrosis drug Orkambi after years of campaigning.
Harriet Corr, five, is about to finally receive the cystic fibrosis drug Orkambi after years of campaigning.
Young cystic fibrosis sufferer Harriet Corr and her family are celebrating a great start to the new decade as, after years of campaigning, a revolutionary drug has been made available on the NHS in England that could change her life.

The Jarrow schoolgirl, five, who lives with her parents Emma, 39 and Chris, 38, and sister Nancy, seven, was diagnosed with the condition, which causes sticky mucus to build up in the lungs, at just five days old.

The drug, Orkambi, is an oral medicine made by US pharmaceutical giants Vertex, but which has not been available on the NHS in England.

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At one stage the Corrs considered moving to Scotland for access to the drug.

Jarrow schoolgirl Harriet Corr and her mam Emma are excited by the news that she will receive a revolutionary cystic fibrosis drug.Jarrow schoolgirl Harriet Corr and her mam Emma are excited by the news that she will receive a revolutionary cystic fibrosis drug.
Jarrow schoolgirl Harriet Corr and her mam Emma are excited by the news that she will receive a revolutionary cystic fibrosis drug.

But in October 2019, Health Secretary Matt Hancock held talks with Vertex bosses and agreed a deal that would change the life of Harriet and around 5,000 other sufferers.

At the time, mum Emma hailed it as “the best news ever”.

The drug costs a reported £104,000 per patient, per year, although Vertex disputed the figure. The actual financial details are commercially confidential.

Now, after all their efforts, the Corrs are expecting their first Orkambi delivery on January 20.

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St Matthew’s Primary pupil Harriet has been taking a daily cocktail of other drugs. But her delighted family are waiting to see what changes Orkambi will bring.

English teacher Emma said: “It’s not going to be instant. We hope we’ll see subtle changes over time.

“I think we’ve got to accept that we’re really lucky. We’re the first generation to get Orkambi. In some ways we’re kind of guinea pigs. It might be a few years down the line before we know how well it’s gone.

“Harriet wil be monitored and tested. She’ll have blood tests every three months and the doctors will keep a close eye on her.

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“But it’s really exciting, although we’ve known we’ll be getting it since October 24. It’s surreal. But it should finally sink in when we can see it in the cupboard next to the other medicine.

“Last year was Harriet’s worst year in terms of her health. Fingers crossed, this is going to be life changing. It’s really hard seeing her when she’s poorly.”

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