Cystic fibrosis drug decision 'heartbreaking'

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Media captionLife with cystic fibrosis ahead of drug debate

Families campaigning for NHS access to "life-saving" cystic fibrosis drugs say it is "heartbreaking" they will be available to patients in Scotland but not England.

Costing £100,000 per person per year, Orkambi and Symkevi improve lung health.

The drugs have been deemed not cost-effective by the NHS.

However, the Scottish government and pharmaceutical company Vertex have agreed a "confidential discount".

Emma Corr, whose four-year-old daughter Harriet has the condition, said patients south of the border "can't afford to wait any longer".

Time 'not a luxury'

Mrs Corr, of Newcastle, said: "We're absolutely over the moon for everybody in Scotland. But it's so bittersweet because it's not us.

"I do feel it is now completely unacceptable that just a few miles up the road people can have access to life-saving drugs.

"Why on earth can't my daughter have that same drug? Why can't she have that same opportunity?

"We just hope something is done really quickly. Time is not a luxury that cystic fibrosis patients have."

'Postcode lottery'

Dave Louden, whose four-year-old daughter Ayda was diagnosed with cystic fibrosis shortly after birth, called for an end to the "postcode lottery".

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Media captionCarlisle family's hope over cystic fibrosis drug

The family, of Carlisle, Cumbria, are about 10 miles (16km) from the border with Scotland.

He said: "It's heartbreaking to know only five minutes along the motorway this drug could be available to her."

Health Secretary Matt Hancock is due to meet Vertex representatives.

The Department of Health and Social Care said NHS England had put forward the "largest" offer in its 70-year history and urged the pharmaceutical firm to accept it.

Cystic fibrosis is a life-shortening genetic condition that causes fatal lung damage, and affects about 10,400 people in the UK.

Only around half of those with the condition live to the age of 40.

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