Cystic fibrosis: Father considers Scotland move to access new drug

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Media captionAyda Louden was diagnosed with cystic fibrosis shortly after she was born

A father has spoken of his agonising dilemma about whether to leave England and move to Scotland so his daughter can access life-prolonging medication.

Dave Louden's four-year-old daughter Ayda was diagnosed with cystic fibrosis shortly after she was born.

The family live in Carlisle, 10 miles (16km) from the Scottish border, where a new drug has become available.

However, despite the position in Scotland, NHS England said the drugs were not cost-effective.

Costing £100,000 per person per year, Orkambi and Symkevi improves lung health and life expectancy for sufferers of cystic fibrosis.

Patients in Scotland can access the drugs after the Scottish government agreed a "confidential discount" with the pharmaceutical company Vertex.

Image caption Dave said the prospect of a move north was having an impact on the whole family, including brother Alfie

Cystic fibrosis affects about 10,400 people in the UK and causes fatal lung damage, with only around half of sufferers living to the age of 40.

Mr Louden said it was "heartbreaking" that his daughter could not get the treatment.

'Starting to understand'

He told Radio Scotland's Stephen Jardine programme: "It's really heartbreaking to know that it's so close, but so far away.

He added: "It is a really, really hard decision that we're going to have to make.

"It's ultimately one where the benefits of these drugs are so that they're going to add decades possibly to Ayda's life.

"If England ultimately can't do a deal, we will be heading across the border."

Mr Louden said his daughter, who started school last week, was mostly unaware of the implications of her illness.

He said: "It's difficult at the minute. She is only four. She understands that she has cystic fibrosis and that she has all these treatments that she must stick to. But the reality of the long-term effects haven't really sunk in for Ayda yet.

"But it's more the effects for her brother. He's seven - Alfie - so he's starting to understand and be aware of the effects.

"Obviously it's starting to worry him that he might have to move school and that he might have to move away for his sister. It doesn't just affect Ayda, it affects the whole family."

'Failing to engage'

Mr Louden said the family was hoping that planned meetings between the UK Health Secretary Matt Hancock and Vertex would ultimately lead to the drugs being made available to patients in England.

"It's not as simple as just moving a few miles up the road. There's family, friends, education, Ayda's brothers, work - and that's just scratching the surface of what's involved.

"Our dream situation would be that Matt Hancock is meeting with Jeff Leiden the CEO of Vertex soon.

"The dream would be that if these guys can look at the deal that's been done in Scotland and mirror that in England and Wales and Northern Ireland."

Mr Louden said the family were due to discuss with Ayda's medical team what would be in her best interest and whether or not a move north would be the right thing to do.

In a statement NHS England said: "Regrettably Vertex is still failing to offer patients in England fairly priced drugs and is still failing to engage with the independent and internationally respected Nice (National Institute for Health and Care Excellence) assessment.

"A number of patient groups in this country are understandably therefore now exploring alternative routes by which they could circumvent the company's block on these medicines, but the quickest way would be for all those who benefit from this drug to reengage with the National Institute for Health and Care Excellence and price fairly and responsibly."

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