Pat Buckley (Cork East, Sinn Fein)

I thank all the witnesses. There is a big advantage when you come in near the end of the full conversation in that you have nearly all the answers and you can break them down. In our job, specifically with the HSE and so on, we will ask a question and we will get a response, and then we go back and ask a question about the response we got. It is about deciphering stuff down.

I have made a few notes on this. This is about patients, human beings and families. I can understand where both sides are coming from here. Ms McGrath mentioned at the start of her contribution that she was here seven years ago and she is here again, and access to this, to anything we are looking for, has not changed in seven years. There is no progression. I was lucky with one or two other Members here to have sat on the committee that dealt with the Sláintecare report, which was about equality, putting patients first and the idea that everything should be based on your needs and not your means, that is, money. I will probably get into trouble for saying this but I do not care. Trouble is my middle name. When I listen to the witnesses saying they have to fight for proper prices for these orphan drugs and so on, it keeps coming into my head that pharmaceutical companies do not do cures, they do customers. Professor Barry himself said earlier that some of these drugs, even those for cancer, do not even work, so how do we find a balance?

The reason I ask these questions is that a very good friend of mine has a daughter who has Fraser syndrome, the incidence of which is one in 1.5 million or something. There is very little that can be done unless it is operations removing organs as she gets older or whatever. I look at her and think, "How do we support this family and give them better quality of life?" There are no guarantees. Any of us can walk out the door here and get knocked down going across the road or whatever. I listened to the witnesses speak about the Dutch model and the way the Dutch seem to have a stronger power in negotiating. When I hear "negotiating", it is price versus patient. On one side there are the cogwheels of how the system is working or not working, and on the other side the witnesses are like the oilers of the cogwheel, but sometimes they do not have enough oil so the cogs do not move and the whole thing is siloed whereby nothing is resourced properly. It is like being on a football team: if you do not have a full team, your chances of winning the match lessen.

We have pharma here that is funded by taxpayers' money. We put in the funding, they produce the drug, they get the pat on the back and they come back and say, "Thanks very much for that. We appreciate it. Now we have it and you are not getting it unless you pay extortionate money." They do not give one damn about the patient. They do not even call them people; they are patients. Patients equals money. The system is very much swayed towards pharma. It is as simple as that. It is swayed towards the producer. I have had the privilege of having sat on a lot of different committees here, between autism, disability, Sláintecare and mental health. These are all the knock-on effects boxed off into one for each and every one of these patients. When you are told you have a rare disease, we are normally, as citizens, as human beings, extremely reactive and very slow to be proactive. Put yourself in one of these people's position. They are told, "You have a very rare condition. There could be a drug in about three or four years' time. It might not work but you are going to have to wait another three or four years to find out anyway."

That is not a system that is working. It seems that in a lot of organisations across all the services I mentioned a while ago it is all silos, and silos slow down things. As Ms McGrath mentioned, we are in the European Union. God, they are very fast here to push the European army on us, but we cannot bring on a European cost-benefit analysis of human beings' health and welfare if we can pool our resources and get things out to people faster. Is that not a better outcome than saying to the pharma companies, "You beat us 3-0 last week in the match but we are playing you again in two weeks' time, and hopefully we will have a better result"? It is a football match or a hurling match - whatever you want to call it - but at the end of the day the winners are the producers of the drug. The guinea pigs are the people who have the disease. I do not want to sound derogatory, and people will take that out of context, but there are other words I would use that would lapse more into profane language, which I will not use. We, as legislators, are all human beings. We might not all have the same politics but we go into certain committees here, and the Sláintecare one had probably the best result. We all agreed to sign off on that for the betterment of our whole society, and it has been slow. As a Legislature, could we do something within the system that streamlines everything, including the brass tack supports? Ministers have statutory instruments to change things straight away. Why can we not use stuff like that?

If there were just one line, if the witnesses could get up in the morning and say, "Right, I need to streamline everything and fix it. I need this to happen", I would like to hear from both sides on that. Thank you, Chair, for your patience.