South Tyneside mum pleads 'when is it going to be our turn' as NHS Scotland agrees deal for cystic fibrosis medicine Orkambi while it's still unavailable in England

A Jarrow family has reacted to the “bittersweet” news that a cystic fibrosis drug will be available in Scotland, but not in the rest of the UK.

Monday, 16th September 2019, 06:00 am
Jarrow cystic fibrosis sufferer Harriet Corr, four, with big sister Nancy, seven, mam Emma and dad Chris.

St Matthew’s Primary pupil Harriet Corr, four, suffers from the condition – but the oral medicine Orkambi, which is used to treat it, isn’t available on the NHS in England.

The drug is manufactured by US pharmaceutical firm Vertex, which has now agreed a price with the Scottish Government, meaning that around 400 Scottish patients will have access to Orkambi, which will be available for five years with a "confidential discount".

Health Secretary Matt Hancock has met with Vertex bosses, but there is no change to the situation in England where the medicine costs a reported £104,000 per patient, per year, although the manufacturer disputes that figure.

The wait for medicine goes on for four year-old Jarrow cystic fibrosis sufferer Harriet Corr.

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David Ramsden, chief executive of the Cystic Fibrosis Trust, said: "We celebrate the news in Scotland today, but our campaign must continue to focus on Vertex and all parties in England, Wales and Northern Ireland.

Harriet’s mam, Emma Corr, said: “We’re wondering how long it will take England to follow suit. This will hopefully put pressure on Matt Hancock to get a deal with Vertex.

“I just hope that Scotland getting the drugs gives us that final push. How can you leave people out? It’s frustrating because we live so close to the border.”

Emma, along with husband Chris, Harriet and elder daughter Nancy, seven, has even considered moving to Scotland to have easier access to the drug.

She added: “We don’t want to have to do it. Harriet’s just started school.

“We’ll give it another few months to see what happens. What other choice have we got?

“It’s bittersweet. We’re over the moon for the people of Scotland. We know some of them. They’ve worked for this and they deserve it.

“But when is it going to be our turn. It’s so cruel.”

A spokeswoman for the UK Government's Department of Health and Social Care said: "NHS England has put forward a very generous offer, the largest in its 70-year history, that would make Orkambi available to NHS patients in England and we urge Vertex to accept the deal.”