Family to move to Scotland to access NHS treatment for four-year-old daughter

23 September 2019, 10:38

Sarah Collins

By Sarah Collins

A family in Cumbria say they are being forced to move to Scotland to access life-lengthening treatment on the NHS for their four-year-old daughter.

Ayda Louden has cystic fibrosis - a genetic condition that shortens life expectancy - and her family are trying to get access to the Orkambi drug that could give her a better prognosis.

But the drug is currently only available on the NHS in Scotland, which has forced her parents to consider uprooting the family to make the short move north from their home in Carlisle.

Ayda has cystic fibrosis
Ayda has cystic fibrosis. Picture: David Louden

“There seems to be becoming healthcare borders now that shouldn’t really happen in the United Kingdom,” Ayda’s father David told Global’s Newsroom.

He added: “These drugs have proven to tackle the root cause of the disease and can ultimately add decades to [Ayda’s] lifespan.”

“Where I live in Carlisle it is not available, and yet just 10 miles up the road - a short journey on the motorway - the drug is now available.”

The Scottish government agreed a deal with Orkambi manufacturers Vertex Pharmaceuticals earlier this month, despite NHS England saying the treatment was unaffordable.

It costs £105,000 per patient, according to the British Medical Journal, but it is not clear what price tag was agreed in Scotland’s deal.

Mr Louden said it “would mean the world” to have access to the treatment without being forced to recloate his family, especially since Ayda had recently started school.

“Everyone in Britain should be able to access these drugs,” he added.

And it “would mean the world to all people with [cystic fibrosis] to have full access to them.”

In response, a spokesperson from the department of health and social care urged Vertex to contemplate a “very generous offer” already put forward by NHS England “so patients can benefit from treatment as soon as possible”.

They added: “The health secretary will be bringing in Vertex representatives to explore what the barriers are to reaching an agreement.”