Toddler with cystic fibrosis cannot get wonder drug available just 10 miles over Scottish border

Little Ayda Louden, aged four, suffers with the debilitating illness that shortens life by causing lung damage, diabetes and liver disease.
Little Ayda Louden, aged four, suffers with the debilitating illness that shortens life by causing lung damage, diabetes and liver disease.
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The parents of a young cystic fibrosis sufferer have spoken of their "heartbreak" after being unable to access a wonder drug now available to patients just 10 MILES away.

Little Ayda Louden, aged four, suffers with the debilitating illness that shortens life by causing lung damage, diabetes and liver disease.

A new US-developed drug called Orkambi, if taken by age six, can add 23 years to life expectancy - as well as correct gene mutation and alleviate symptoms.

A new US-developed drug called Orkambi, if taken by age six, can add 23 years to life expectancy - as well as correct gene mutation and alleviate symptoms.

There is currently no cure for cystic fibrosis and the average life expectancy for the genetic disease is just 31.

A new US-developed drug called Orkambi, if taken by age six, can add 23 years to life expectancy - as well as correct gene mutation and alleviate symptoms.

Orkambi's manufacturer, drugs giant Vertex, and NHS England have been locked in a three-year row over the drug, which would cost £105,000 per patient per year.

Vertex is refusing to budge on its price and has blocked the NHS's offer of £500m for a five-year supply of the drug, the largest commitment the NHS has ever made.

However, the Scottish Government last week agreed a deal with the manufacturer to pay to treat the 350 patients eligible for the drug north of the border.

The parents,who live in Carlisle, Cumbria., which is 10 miles from the border, have pleaded with NHS bosses in England to strike a deal for the drug that could add years to her life.

Her father Dave Louden, 34, a fire alarm engineer, has told how the family are 'seriously considering' moving to Scotland to access the crucial drug which would prolong Ayda's life.

He said: "It is still heartbreaking and frustrating knowing these drugs are literally now so close, yet so far from Ayda herself having access to them.

"They cannot allow for a postcode lottery between the home nations where some people with cystic fibrosis are treated and others are not."

Orkambi is already available in 11 other EU countries after it was discovered by Vertex thanks to funding from a cystic fibrosis charity and taxpayers' money from a national research agency.

But NHS England has deemed the cystic fibrosis drug unaffordable for patients south of the border even though there are more than 10,000 adults and children who could benefit from the vital medication.

As the positive news was celebrated in Scotland, campaigners like Dave, who is also father to seven-year-old Alfie, is hopeful patients in England will be next in line to benefit from having access to the drug.

He said: "I'm over the moon that full access has been made available for all patients who can benefit from the two drugs in Scotland.

"It's the biggest leap forward yet that has come from the relentless campaigning of cystic fibrosis sufferers and desperate parents, family members, friends and the public.

"Myself and my family must now seriously consider the move across the border to Scotland as these drugs are and will be a crucial factor in Ayda's health.

"I would much prefer a deal be struck with the NHS in England to prevent such drastic measures to have to be taken.

"It would be a lot of change and upheaval, not only for Ayda, but for her brother Alfie and the rest of our family who we rely heavily on for support, but ultimately we may be left with no other option.

"Ayda's cystic fibrosis is a volatile condition, we are only to aware that it only takes one bad infection for these drugs to become her only lifeline.

"We are lucky to have the advantage of living so close to the border and that making the switch for us would be easier than many other families across England, Wales and Northern Ireland who will also now be considering the move to Scotland."
Dave voiced his 'refreshed hope' that the news will push the campaign in England towards a positive result.

"It's a conclusion I hope that will make Orkambi, Symkevi and the future drug Elexacaftor available without delay on the NHS," he added.

"At the very least, this is a defining point that if NHS England can still not strike a deal even when Scotland can, that they must now take the alternative measures of looking to import the generic version of these drugs.

"They cannot allow for a postcode lottery between the home nations where some people with cystic fibrosis are treated and others are not."