John Brassil (Kerry, Fianna Fail) | Oireachtas source

I can only express my extreme disappointment at the weakness of the Minister of State's reply. The only aspect I welcome is the news that the HSE has agreed to re-engage with CSL Behring to seek to find a resolution. It is clear from what we have heard today that the Minister and the HSE accept the NCPE claim that the drug does not provide value for money and is not effective. However, every other source of information, including recognised experts such as Professor McElvaney, have found to the contrary. There seems to be a disconnect in terms of how the NCPE assesses drugs. We had the same situation with Orkambi and it is difficult to understand. There may be a broader discussion to be had as to how we reimburse high-tech drugs in general. Consideration might be given, for example, to funding research on the basis that any breakthrough drugs would be subsequently provided at a low cost base. However, that is a discussion for another day.

We are talking in this instance about 21 people who are being denied the lifestyle to which they, like everybody else, are entitled. The company is taking a humanitarian approach by making the drug available for a further period. I reject any suggestion its actions are being done on some sort of lobbying basis. The people who are suffering from this debilitating condition are living from month to month and it is not acceptable. Will the Minister of State relay to the Minister, Deputy Harris, and the NCPE the need for an urgent resolution of this matter? We are dealing with people's lives here and their suffering must not continue.

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