Declan Breathnach Orkambi Pic
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– This in addition to the extension of Kalydeco for the two to five age group –

Fianna Fáil TD for Louth and East Meath Declan Breathnach has called on the Taoiseach and the Minister for Health to approve the reimbursement of the Orkambi drug and the extension of Kalydeco for the two to five age group and the R117h group without further delay.

“The matter is currently under consideration by the HSE Directorate.  The long delay in reaching a decision on this is extremely upsetting to the hundreds of Cystic Fibrosis sufferers and their families who urgently need access to these drug treatments.”

“This week the Taoiseach misled the Dáil by saying that the cost was still €159k.  However, information given at a briefing at Leinster House on Wednesday 22nd February is that the company has offered a substantial lowering of that figure.”

“56% of CF sufferers in Ireland have the gene that Orkambi assists as opposed to 50% in the U.K. and as Ireland has one of the highest incidences of Cystic Fibrosis in the world our Government needs to grant access to these treatments.”

“At the briefing at Leinster House on Wednesday, those attending were given a device to place on their nose and to then breathe through a straw to experience what it is like for a CF sufferer trying to breathe every day of their lives.”

“Cystic Fibrosis patients and their families deserve better.”

-Ends-

Johanna Walsh, Office of Declan Breathnach T.D., Leinster House, Dublin 2

(T) 01 6183549 (Email)  declan.breathnach@oireachtas.ie