John Brassil (Kerry, Fianna Fail) | Oireachtas source

I have no issue with the methodology by which Professor Barry operates. I have met him specifically on this issue and he has told me specifically that if the company comes forward with more detailed clinical information, he will look at it. The problem I have, as I stated in my earlier contribution, is that I can see the obvious clinical benefit by meeting the patients who are getting the drug. Something is falling between the stools here. Is the company not submitting enough data? Is it not presenting them in such away that it allows Professor Barry to get it over the line? We have mentioned reimbursement. We are led to believe that the costs of reimbursement offered to some countries is much lower than what is offered in Ireland. All those are issues but next week, and I have absolutely no doubt about this, regardless of how poorly the company may have informed or not informed as the case may be, those patients are going to lose their drug.

I ask the Minister, Professor Barry, John Hennessy, who heads up primary care in the HSE, Professor McElvaney in the Alpha One Foundation and CSL Behring to sit around the table and thrash out a solution, if not the long-term solution over the provision of the drug to the general population, then specifically for those who are on the compassionate access programme. We need to do something for those patients. I mentioned an individual who has the double condition of alpha-1 and panniculitis. That is critical for that particular individual. He will be in a hospital bed in a week's time if his drug is withdrawn from him. The likes of John Hannon and his colleagues who I met have had their lives changed. I feel it is my responsibility to ensure they continue to get the medication they need.

I ask the Minister to keep this issue live. The next week is critical. I ask the Minister to call all the relevant parties together and get a resolution. It does not matter to me that CSL is a company with a €1.2 billion profit per year. It does not matter to me that it has endless resources. It matters to me that the patients in our jurisdiction, who I represent, get the drug that allows them to live a normal life. I trust in the Minister and his Department to make sure that heads are knocked together to allow these people the access that they need to live a normal life.

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