Mark Daly (Fianna Fail) | Oireachtas source

In the meantime, people have been going in and out of hospital or spending months in hospital. There is no urgency on the part of the Government on this issue. Members attended presentations on the matter in the audio visual, AV, room yesterday and last week. The presentation yesterday was by Deputy Kelleher, our party's spokesperson on health. It is particularly moving to hear about people whose families have suffered bereavement or whose children have had to be put into comas rather than suffer through the agonising pain of having their lung function decrease, and then to hear from those whose lives have been transformed and even saved as a result of this wonder drug. The issue here is economics as much as anything else.

Our organ donor system is a shambles. In 2013, the Seanad was recalled from its summer recess to discuss the organ donor system. We spend €325 million per year on kidney dialysis and on keeping people who are awaiting organ transplant alive. In this country 65 people die each year while waiting for an organ transplant. Then there are the people who are taken off the transplant list because they simply are not well enough to receive a transplant. They die quietly and are not even recorded as a statistic. A total of 650 people are awaiting transplants, be it a lung, heart or kidney, and it costs €325 million. We should have a system in which kidney transplants alone are carried out correctly. Croatia transformed its system ten years ago and it now has a surplus of organs to give to other countries. We do not have that system. Our system simply does not work. It is not fit for purpose. A Member of this House, who was the Minister for Health at the time, signed the first legislative measure in the history of the State relating to organ transplantation, and it was signed on the last day required under an EU directive. It was described by organ donation organisations as something that would cost people's lives because it was such a shambles. It did not improve the system but actually made a bad system worse. It did not give power to one authority but to a range of authorities. If we had a functioning organ donor system that worked, the €325 million per year being spent on keeping people alive could be used to purchase the drug Orkambi-----