WITH no sign of the HSE coughing up for a revolutionary new drug called Orkambi that could greatly ease the pain suffered by Cystic Fibrosis patients, one Waterford child is hoping he makes enough from his First Communion money this Spring to cover the cost of the treatments.
Dubbed ‘unjustifiably expensive’ by the HSE, Orkambi has been shown to significantly increase the comfort and life expectancy of Cystic Fibrosis sufferers such as Dungarvan first-classer Niall Lenihally, 8.
With Ireland having one of the highest Cystic Fibrosis rates in the world per head of capita, Lenihally and his parents were under the impression that the HSE would surely provide Orkambi to patients suffering from the chronic lung disease, only to be met with the news that ‘negotiations have yet to reach a breakthrough’ on the ‘not sufficiently cost effective’ drug, which costs on average 159,000 euro every year per patient – almost the equivalent of the Taoiseach’s average yearly expenses (€197,000).
Speaking exclusively to WWN, young Lenihally stated he remained confident that his network of grandparents, uncles and aunts would ‘sort him out’ enough at his first communion to ensure he could pay for the breakthrough treatment himself, so that he could play like a normal boy for a while and give his parents something to smile about, if only for a day at a time.
“If the HSE think that Orkambi is too dear, well, I’ll pay for it myself” said Lenihally, one of an approximate 1,200 CF patients in Ireland.
“My nana is normally good for 20 euro at birthdays, so I’d say that could go up to 40 for first communion. 5 uncles, three aunts, that’s another 100 I’d say. How far off the target are we there?”.
Minister for Health Simon Harris, who you can contact to let him know what you think about this matter right here, has stated that he will ‘stick a tenner in a card’ for the youth come Communion time.