Family of cystic fibrosis girl say deal to provide Orkambi drug on NHS is 'best news ever'

The family of a Jarrow girl is celebrating ‘the best news ever’ after a deal was finally struck to issue a drug treating cystic fibrosis on the NHS.

Harriet Corr, 5, is to benefit after a deal was struck that offers a cystic fibrosis drug on the NHS.
Harriet Corr, 5, is to benefit after a deal was struck that offers a cystic fibrosis drug on the NHS.

Jarrow schoolgirl Harriet Corr, five, lives with her parents Emma, 39 and Chris, 37, and big sister Nancy, seven. Harriet was diagnosed with the condition, which causes sticky mucus to build up in the lungs, at just five days old.

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

Until now, St Matthew’s Primary pupil Harriet has been taking a daily cocktail of other drugs.

The Corr family, from left, Nancy, seven, mam Emma, 39, Harriet, five and dad Chris, 37.

Earlier this month Health Secretary Matt Hancock held talks with Vertex bosses. An agreement has now reached that will change the life of Harriet and up to 5,000 other sufferers.

The drug costs a reported £104,000 per patient, per year, although Vertex have disputed that figure. Both sides said financial details were commercially confidential.

English teacher Emma, who said: “This is the best news - ever! We’re overjoyed.

“I was at work when I found out. They said to get myself home. There was no way I could have taught another three lessons after hearing that. It’s been bedlam.

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Harriet Corr with her parents Emma and Chris, who are 'overjoyed' that their daughter will soon have access to a cystic fibrosis drug.

“It’s really difficult to put into words. I was overcome with emotion when I finally found out that they’d got a deal after all this time. We’d been told that this could happen, but we’d heard it all before. I’m overwhelmed and overcome; but in a good way.

“Harriet’s not really aware of everything that’s gone on. She knows she needs her ‘magic medicine’, but she’s a bit nonplussed.

“I hope in years to come she looks back and thanks everyone. We’re going to have a big party this weekend to celebrate.

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“I’d like to thank the Gazette for all they’ve done to raise awareness over the last four years, Stephen Hepburn who’s done everything he can and everyone who helped us with the campaign.

Mr Hepburn, Jarrow MP, said: “It is pleasing that these life-changing drugs will be made available on the NHS now, because every day without them is another day of suffering for the people living with the condition.”

Describing the deal as ‘wonderful news’, Health secretary Matt Hancock tweeted: “We’ve agreed a deal to provide Orkambi and other lifesaving Cystic Fibrosis drugs on the NHS.

“Huge thanks to the many campaigners who have worked so hard, and to Vertex & the NHS. #OrkambiNow

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“The deal is great value for money for the NHS, is backed by NICE, and crucially, will improve thousands of lives.”