Enda Kenny (Mayo, Fine Gael) | Oireachtas source

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.

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