Article written by Catherine smyth,
A Northern Ireland mother whose young daughter has cystic fibrosis has said she is "screaming and shouting for help" to access a life-changing drug but "no-one is listening".
The Orkambi drug helps to increase lung function but is deemed too expensive by the health advisory body NICE.
However, it is available for free to patients in the Republic of Ireland.
Ten-year-old Zona Armstrong's family are considering moving there so she can access the medication.
Cystic fibrosis is a life-shortening genetic condition causing mucus clogs and damage to patients' lungs, leaving them prone to infection.
Lower life expectancy
Ireland has the highest incidence rate of cystic fibrosis in the world, with one in 19 people estimated to carry the altered gene that causes it. Zona was diagnosed with the condition when she was a baby.
The 10 year old said she is aware that her life expectancy is lower and that is why she wants the drug as soon as possible.
While she was a fairly healthy child, her health has deteriorated in the last year.
She has had a number of lengthy admissions to the Royal Belfast Hospital for Sick Children and has battled pseudomonas and aspergillus infections.
Her lung function has dipped as low as 80% at times.
Every day for her begins with an hour-long session involving physiotherapy, nebulisers and taking up to 10 types of medication. <!-- Global site tag (gtag.js) - Google Analytics -->
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