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.

This is a matter that is of considerable stress and interest to those who suffer from cystic fibrosis for whom this might be an improvement in the quality of their lives. The company involved, Vertex, needs to be realistic in respect of what it is charging. The Minister, Deputy Harris, is not alone in his difficulties in respect of Orkambi for cystic fibrosis patients. The same situation applies in Australia, Canada, England and Scotland where this drug has not been approved as part of the public health system. The Minister has written to all the other Ministers for health in those countries seeking their co-operation in joining in a realistic set of discussions with Vertex in order that they can positively influence this drugs company to be more realistic in what it is demanding.

The Minister has also invited Cystic Fibrosis Ireland for an up-to-date briefing on where the process is at now. He has been in touch with Opposition spokespersons about this. However, as Professor Barry said yesterday, it is time for the company to put patients first and to reduce its price significantly. A five-year gross budget impact would be almost €400 million and the NCPE noted the significant opportunity cost associated with reimbursing the drug. We are fully supportive of the discussions that need to take place directly with the company on a renewed basis. These are not political decisions. Politicians are not in a position to be qualified to make the clinical judgments as to the extent of improvement in the quality of life for the patient and the cost that is being charged.

The HSE has been involved with Vertex since June of this year. It is disappointing that Vertex has given no ground. I have the letter here from the Minister for Health to the Australian Minister asking that people would get together in a number of countries and talk to Vertex in this respect. The NCPE which undertook the assessment of Orkambi noted that the drug was not considered cost-effective at the price of almost €160,000 per patient per year as submitted by the manufacturer. The clinical assessment of the NCPE estimated that the cost-effective price in this instance was closer to €30,000 or five times less than what the company is demanding. The five-year gross budgetary impact would be almost €400 million and, therefore, the company needs to be realistic in its discussions with the HSE based on the professional clinical assessment of the value of the drug in terms of the improvement of the quality of life of the patient. The other countries I have mentioned are in the very same boat. This drug has not been approved on the public health system for cystic fibrosis sufferers in those countries. I hope that Vertex becomes realistic in its discussions about the price it is demanding and what might be more appropriate, which would not only allow cystic fibrosis sufferers to benefit from Orkambi but many others to benefit from other drugs as well. I hope the discussions take place again quickly. The Minister will brief cystic fibrosis sufferers to give them the up-to-date position.