We’re just 10 miles from hope and a brighter future for Ayda
Frustrated dad may move to Scotland so his girl can get Orkambi
We must now seriously consider the move across the Border
THE parents of a young cystic fibrosis sufferer have spoken of their frustration at being unable to get a wonder drug now available to patients in Scotland – 10 miles from where they live.
Ayda Louden’s dad Dave has told how his family are “seriously considering” moving from Carlisle to Scotland to access Orkambi, which would prolong his daughter’s life.
The Scottish Government last week agreed a deal with the manufacturer of the US-developed drug to pay to treat the 350 patients eligible for it north of the Border.
The move came after a year-long campaign by the Daily Record, a cross-party group of MSPs and patients for the drug to be made available.
Cystic fibrosis is a debilitating illness that shortens life by causing lung damage, diabetes and liver disease.
There is no cure and the average life expectancy for the genetic disease is just 31.
Ayda’s parents have pled with NHS bosses in England to strike a deal for the drug that could add years to their daughter’s life.
If taken by age six, Orkambi can increase life expectancy by 23 years as well as alleviate symptoms.
Dave, 34, said: “It is heartbreaking and frustrating knowing these drugs are literally now so close, yet so far from Ayda herself having access to them.”
Orkambi is already available in 11 other EU countries after it was developed by US drugs giant Vertex, thanks to funding from a cystic fibrosis charity and taxpayers’ money from a national research agency.
But NHS England has deemed the drug unaffordable for patients south of the Border, where more than 10,000 adults and children could benefit from the vital medication. Vertex and NHS England have been locked in a three-year row over Orkambi, which would cost £105,000 per patient per year. The pharmaceutical firm is refusing to budge on its price and has blocked NHS England’s offer of £500million for a five-year supply of the drug. But Dave hopes the news that the Scottish Government has managed to hammer out a deal with Vertex for Orkambi and a second cystic fibrosis drug, Symkevi, will mean patients in England could be next in line to benefit.
The fire alarm engineer, who is also father to seven-year-old Alfie, 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.”
Dave added: “Ayda’s cystic fibrosis is a volatile condition.
“We are only too 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.
“Making the switch would be easier for us than many other families across England, Wales and Northern Ireland, who will also now be considering the move to Scotland.”
Responding to the success of the campaign in Scotland, Dave added: “It’s a conclusion, I hope, that will make Orkambi, Symkevi and the future drug Elexacaftor available without delay on the NHS.
“At the very least, this is a defining point where, 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.”