Joy for Meath families living with CF as Minister announces Orkambi deal

Health Minister Simon Harris has confirmed that the cystic fibrosis drugs Orkambi and Kalydeco will become available to patients from next month.
Minister Harris confirmed that a deal had been reached in principle on the drug.
These drugs will be available to Irish patients in this country from next month, Harris said.

The CF community has been on tenterhooks for almost a year now while the HSE has been involved with negotiations with company Vertex – which manufactures the drugs – over securing their use for Irish people suffering the disease.

 

“I wish to inform the Dáil that both parties are working to finalise the contractual arrangements to complete the approval process in advance of the first of May,” he said.

Harris said that he recognised that this had been “an extraordinarily difficult time for cystic fibrosis patients, for their families and for their friends as they have been waiting for this process to conclude”.

The Meath Chronicle has highlighted the plight of local families fighting for access to Orkambi and Kalydeco. Trim man Paddy Peppard (above) lost six sons to the life limiting disease and made a passionate plea to the Health Minister to do the right thing by families who need treatment now.

The huge cost of Orkambi – put at €158,000 per year per patient, at a cost to the State of €390 million over the course of five years – led to protracted negotiations. Now comes the news all families dealing with CF have been waiting for. The final cost of delivering the drugs has yet to emerge.