Marc MacSharry (Sligo-Leitrim, Fianna Fail) | Oireachtas source

Page 64 of the programme for Government refers to the Government commitment to making greater use of effective but costly medicines. Page 33 of the Health Service Executive service plan indicates that 2016 will see new drugs being a significant feature. At the weekend we saw press reports that the decision has already been made not to make the game-changing and life-saving drug Orkambi available to those of the 1,200 cystic fibrosis sufferers in this country who are suitable to be treated with it.

I ask that a decision be made in the same vein as that made previously by the then Minister, the former Deputy, James Reilly, when he, despite a decision by the National Centre for Pharmacoeconomics, NCPE, and the committee within the HSE not to provide the drug Kalydeco to relevant and suitable patients, overruled that decision at the time and made it available. I ask that the Government immediately move to make a decision and direct that Orkambi be made available to those patients who require it such as that of the Golden family in Sligo whose daughter, Grainne, sadly passed away as a very young girl some 12 months ago. Her dying wish was that other children would not have to go through the same suffering and experience the same fate she had.

If it is merely the cost of the medicine rather than the value of life, I would make a simple point. The cost of acute beds per day is between €1,000 and €1,200. Many cystic fibrosis patients at their sickest spend up to nine months per year in an acute bed. At that cost, that works out between €270,000 and €324,000 per year. To provide this game-changing and life-saving drug to those people at a cost of €160,000 would be between 49% and 59% of the cost of providing the acute care that we are providing. In essence, it would be cost saving and free up many of the acute beds we heard Deputy Grealish and my leader, Deputy Micheál Martin, highlight as needing to be freed up because of the waiting list throughout the country. I appeal to the Taoiseach to take the right and just decision in this instance.

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