Protest To Take Place Outside Dail Over Availability And Cost Of Cystic Fibrosis Drug
The parents of children campaigning for the widespread availability of Cystic Fibrois drug Orkambi say it has now become a humanitarian issue.
Activists are to hold a protest demonstration outside the Dail this lunchtime as talks between the HSE and pharmaceutical company Vertex on the cost of Orkambi are ongoing.
Vertex had initially sought €159,000 per patient per year for Orkambi but this is understood to have been significantly reduced.
As part of any deal with Vertex, the State is also looking to ensure quick access to any new improved versions of the firm's cystic fibrosis drugs in the years ahead.
Cork Mum Kara O'Callaghan is travelling to Dublin for today's protest on behalf of her 5 year old son Leon who is a CF sufferer.
She told RedFM News that people with CF should be granted access to the drug:
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