Enda Kenny (Mayo, Fine Gael) | Oireachtas source

This is obviously a very sensitive and personal issue for those people who have to meet the challenge of cystic fibrosis. Vertex is ripping off the taxpayer and I do not agree that there have not been intensive discussions. I do not agree that there has been an attempt to diminish the impact on quality of life which Orkambi can bring for those patients aged 12 and over who would benefit from it.

It is not a political process that determines the value and the impact of a drug and this has been pointed out by those who are qualified in clinical practice to determine such things on behalf of persons with cystic fibrosis. It is disappointing that the latest round of discussions between Vertex and the HSE have concluded. I trust Professor Michael Barry from the National Centre for Pharmacoeconomics, who said last week that it was time for the company to put patients first and to significantly reduce its price. He said the five-year gross budget impact of reimbursing Orkambi was estimated at more than €390 million and that the centre had noted the significant opportunity cost associated with reimbursing the drug. That is not a political charge but one that comes from people who are qualified to determine these matters in the medical area.

The Deputy seems to be suggesting that the Minister or I should negotiate directly with the company but the Minister for Health, Deputy Harris, has travelled to Lisbon today and has written to his fellow Ministers in Australia, Canada, England and Scotland, where the medicine has also not been approved. He is seeking co-operation with these countries and to join forces to impact positively on and influence the manufacturer to accept other innovative pricing approaches to significantly reduce the cost of this medicine. There are those within the cystic fibrosis community for whom Orkambi does not work and even were Vertex to reduce the cost in line with the assessed proportion for whom it does not work, there would be a significant reduction in the cost of the drug.

Things have moved on from the days when the political process made a determination as to the value of a drug in terms of quality of life. We all empathise with and understand the sensitivities associated with this but this company is using cystic fibrosis patients. It has a drug which enhances quality of life but there is a percentage for whom it does not work and the charge being put forward by the company is grossly excessive, as determined not by a political process but by a clinical professor in charge of this who has been very clear about the situation regarding this company.

I urge the company to return to the intensive discussions that have already taken place and reduce the price. Then we can move on and those whom the drug will benefit will have the benefit of it.

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