CF PROTESTORS ‘ENCOURAGED’ AS TALKS ON DRUG RESUME
KERRY families holding out hope of the public funding of CF drug Orkambi say they are encouraged by the resumption of talks between the HSE and the manufacturer - just days after they demonstrated in their thousands on the matter outside the Oireachtas.
Families were left reeling when it emerged the HSE would likely not meet the price demanded by manufacturing company Vertex to provide Orkambi in Ireland over a fortnight ago.
The news prompted an escalation of the long-running campaign by families to get Orkambi funded, culminating in a massive protest outside Dáil Éireann on Wednesday of last week.
Within days it was announced that Vertex and the HSE were to resume talks on the price of the drug.
The cost is far beyond the means of families at €159,000 per patient a year. But it represents the only hope for thousands of patients carrying a particular genetic strain of Cystic Fibrosis, who believe it would greatly lengthen their life expectancy amid numerous other benefits.
For that reason feelings ran high at Wednesday’s demonstration where placards carried slogans from ‘Don’t Put a Price on My Head’ and ‘Orkambi for Christmas’.
Former Kerryman journalist Marisa Reidy bore a poster of her six-year-old daughter Hanna, reading: ‘You tell this her she’s not worth it!”
“It was a hugely emotional day seeing how much this meant to so many people but it was very encouraging as it proved to the decision makers that there is strength in numbers and that we are all willing to do what it takes to get this across the line,” Ms Reidy told The Kerryman.
Their fight will continue until the drug is provided patients here, with the resumption of talks welcomed by all.
“It’s very encouraging and will hopefully have a positive outcome. I think both parties have seen just how much this means to so many people and please God the day will soon come when we can say ‘we’ve done it,’” Ms Reidy said, adding: “Those in the CF community fight every day to stay healthy so they really don’t need another battle on their hands.”