Cystic fibrosis funding move is 'devastating'
A Riverchapel mother has said that the decision of the National Centre for Pharma Economics (NCPE) to deny funding for a life-changing drug for cystic fibrosis patients, is 'devastating.'
Claire Merrigan is now urging the public to get behind the campaign to persuade the Minister for Health and the Taoiseach to get funding for the drug Orkambi approved. She said the Twitter campaign is using the #yestoorkambi slogan.
'We are asking Minister Simon Harris and the Taoiseach Enda Kenny not to put a price on 600 people's lives,' she said. Her son Mason (4) is one of around 600 CF patients in Ireland who would benefit from this drug, as it has been proven effective against the DDF08 strain, which affects 60 per cent of the CF population in Ireland.
'We're just devastated,' she said. 'It's just another blow. We're asking the minister to give serious thought to this.'
Claire raised the issue with the Taoiseach when he visited Gorey during the election campaign.
'Four people in Courtown and Gorey can benefit from this drug, and more than 20 people in Wexford in total,' she said. 'We understand about price, but we're asking the Minister and the Taoiseach to sit down with the company and the powers-that-be, and discuss it and agree on an appropriate price.'
'They have put a price on my child's future, and a price on his quality of life,' she added.
'The CF community will not accept this and we will fight it all the way.'