‘Why make Orkambi if no-one can afford it?' asks Evan (13)

THE mother of a 13-year-old boy from who suffers from Cystic Fibrosis has said ‘her son is not a statistic’ as both she and other parents seek clarification from both the HSE and the drug manufacturer, Vertex on the issue of funding for the CF drug Orkambi.

Carol-Anne O’Leary from Belgooly, whose son Evan has CF wrote an open letter to Vertex, ahead of a planned protest outside Dáíl Eireann last week.

‘My son is a not a statistic. He is a 13-year-old-boy who should be worrying about his school Christmas exams or whether he gets picked for the soccer team next week. He shouldn’t have to listen to the news and wonder why his government doesn’t think he’s worth it,’ said Carol-Anne, in the letter.

‘He shouldn’t have to ask me why a drug company went to the bother of developing Orkambi only to make it so expensive that no-one can afford it.’

It was revealed last week that it would cost €160,000 per patient per year to use Orkambi, which the HSE deemed was too expensive.

Speaking outside the protest at Dáil Eireann, which drew hundreds of people, Carol-Anne told The Southern Star that both the HSE and Vertex need to sit down and sort the agreement of Orkambi.

‘There was a huge turnout at the protest and Michéal Martin came out and spoke to us but the fact remains that the government has a responsibility to do something about this situation,’ said Carol-Anne.

‘Nobody is telling us anything and it was only a leak from the HSE two weeks ago that we found out that they were refusing to fund it.’

Carol-Anne, who has been involved in Build4Life Cystic Fibrosis for several years said Evan, who goes to Kinsale Community School, is doing well and is very aware of the campaign to get funding for the drug, as he is a candidate for it.

‘He is not a figure on a spreadsheet. He is Evan. He is 13. He is relying on you for his future,’ said Carol-Anne as she signed off the letter to Vertex.