Belfast Telegraph

Stormont impasse means girl can’t get cystic fibrosis drug - only option is move to Republic, says angry mum


By Lisa Smyth

A Co Tyrone woman has said she may have to move her family to the Republic so her daughter can get a cystic fibrosis (CF) wonder drug.

Ayrin Armstrong hit out at the ongoing political stalemate while her 10-year-old daughter - and hundreds of others across Northern Ireland - are living in the shadow of the deadly disease.

The mum-of-three from Omagh is backing a campaign to make Orkambi available to CF patients here and has called on the parties to return to work at Stormont.

"It's heartbreaking. If Stormont was up and running they could make the decision to make Orkambi available here and that's why what is going on at the moment is so frustrating," she said.

"I am not just making a plea to the politicians as a mother, but as someone who knows the drug would help hundreds of people living with CF right now.

"It breaks my heart that there are people whose lives depend upon Orkambi, people are dying now.

"The damage is happening now and we won't stop fighting until Orkambi is available here.

"Our politicians have the power to make Orkambi available here, but they aren't even talking at the moment.

"It makes you wonder what they would do if it was their child that they were watching struggle to breathe and spending so much time in and out of hospital."

Orkambi has been hailed a lifesaving treatment that has the potential to improve the condition of CF sufferers across Northern Ireland.

However, it has been deemed too expensive by NICE - the body that decides what drugs should be available on the NHS - so it is not routinely available here.

Ayrin (29) discovered daughter Zona had CF when she was just six weeks old after it was picked up through routine screening tests done on newborn babies.

CF is a genetic condition that affects the lungs and digestive system, and half of the people with the condition who died last year were aged under 30.

Symptoms include a persistent cough, wheezing, shortness of breath, repeated chest infections and malnutrition.

Orkambi is the only therapy that tackles the underlying cause of CF.

It has been found to reduce hospital admissions and extend life expectancy by slowing down lung deterioration.

It is estimated the drug could help just under a third of the 500 people here with CF.

In June the Cystic Fibrosis Trust held a series of protests to press the UK Government to make the drug widely available to patients.

Ayrin said: "Zona was reading about CF during the summer and saw the life expectancy and she came to us and said that it isn't very old.

"It was very difficult. We had to sit her down and talk to her about her condition and what it means, but at the same time I was able to say to her that it is a very exciting time because of Orkambi.

"The only thing is Zona can't have Orkambi until her lungs are at 40% capacity, by which time they will have suffered irreparable damage.

"Our only option at the moment would be to move to the Republic, where Orkambi is available."

Ayrin added: "It is a lot for a little girl to live with, she is missing out on so much and having to fight so hard and grow up so fast."

A spokeswoman for the Department of Health said that without NICE approval Orkambi will not be made routinely available to cystic fibrosis patients here.

"Since 2006 the department has endorsed NICE guidance for use in Northern Ireland," she explained.

"Whilst there is a process to check the guidance for legal and policy applicability here, there is no reassessment of the clinical or cost evidence used by NICE in coming to its decisions and forming its advice."

She said the use of Orkambi to treat people with cystic fibrosis is due to be reviewed by NICE again in July 2019.

The review may happen sooner if the drug company that makes Orkambi lowers the price of the treatment, she added.

Belfast Telegraph

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