Belfast Telegraph

Northern Ireland mum's anguish as cystic fibrosis drug free in Republic is denied to her daughter

By Donna Deeney

The mother of an 11-year-old Co Tyrone girl living with cystic fibrosis has voiced her frustration that her daughter can't get a life-enhancing drug that is available just a few miles away in the Republic.

Little Zona Armstrong from Omagh suffers long periods when her lung function is weak. It means she can be hospitalised for weeks or unable to go to school, play with friends and take part in sports.

But just 20 miles away, across the border, cystic fibrosis sufferers are reaping the benefits of new drug Orkambi.

Zona's mother Ayrin said it was extremely tough knowing there was help available, but not accessible. She said: "Zona's condition has deteriorated and she is really unwell at the minute.

"Her lung function is dropping and she was in hospital for most of December, but still isn't well enough to go to school.

"I am frightened about the state of her health and I do try and play down how scared I am, but she is afraid too because she knows she can't do the things she loves to do, like running and playing hockey.

"It is so frustrating to know that if Zona was given Orkambi it would make such a difference to her quality of life.

"But what is even more frustrating is knowing that if we lived 20 miles away in Lifford, Zona would be on Orkambi. Children in the Irish Republic are being given Orkambi from the age of six, which means their life expectancy is increased.

"The impact of cystic fibrosis on their day to day life is greatly reduced, but the UK Government won't fund the use of Orkambi."

Liam McHugh from the Cystic Fibrosis Council in Northern Ireland is spearheading the campaign to see the drug rolled out across the UK.

He has widespread political backing, but with Stormont in limbo the campaign is being hampered.

He said: "Our campaign is across the UK, but within Scotland, England and Wales and Northern Ireland there are campaigns directed at individual governments, which is why it is so important for us that the Stormont government is formed again.

"We believe that if Orkambi is introduced in Scotland, for example, then it will be rolled out everywhere in the UK shortly after. Unlike Dublin, London does not think Orkambi is cost-effective, but we launched a petition to have that debated in the House of Commons, which gained 80,000 signatures in just six days.

"We need another 20,000, so we desperately need people to sign the petition because we know Orkambi will make such a difference to the lives of people with cystic fibrosis.

"I know this for a fact because my daughter Rachel was picked to take part in a worldwide clinical trial of the drug and the difference it has made to her has been incredible."

Foyle MP Elisha McCallion backs the campaign. She said: "The fact Orkambi has been made available to suitable patients in the south, like in other EU states, yet remains unavailable in the north, is unfair.

"The onus is now on the makers of Orkambi, Vertex, and the British Government to reach agreement as soon as possible, before being considered by the relevant clinical authority NICE in order for it to be made available through the NHS."

Belfast Telegraph

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