Senator Daly: “65 people a year die on the Organ Donor waiting list because of the flawed system the government has put in place”

Cystic Fibrosis Treatment: Statements

Thursday, 8 December 2016

I thank the Minister for coming to the House. I have three questions. First, how many countries have done a deal with the company? Second, have any of those countries done a deal on the basis of risk sharing? Finally, what price did they end up paying? Obviously, these are benchmarks on which we could base our negotiations.

  Many colleagues have touched on other issues to do with cystic fibrosis. One feature of CF is the consequences of having a diagnosis and the fact that there is now hope for patients. There is a drug that offers hope for some, but it does not offer hope for all. That is where risk sharing comes in to play. This is where we could possibly improve and lengthen lives. Indeed, we could not only lengthen lives but improve the quality of life.

  I thank the Minister for coming to the House today to take this debate. He did not send anyone. He has come himself. The Minister was sent out to bat on an equally tough issue in 2013 when it came to organ donation. The House was recalled at the time. We had a number of debates on radio, television and in other locations. As the Minister will recall from those debates, the system of organ donation in this country is a disaster. The EU regulation brought in at the time was signed on the last day designated by the European Union for signature. The 27-page EU directive was the first tranche of legislation in the history of the State to do with organ donation.

  Our system is so bad that 65 people per year are dying on our organ transplant waiting list. The figure does not include those who are taken off the waiting list because they are too sick or deemed to be too ill to receive a transplant. They do not even feature as a statistic in our organ transplant system. We have 650 people waiting for organ transplants. Some 500 of this number are awaiting a kidney transplant. If we simply reformed the organ donor system for kidney transplant alone, we would save over €1.3 billion in a decade. More important than saving such a vast amount of money is that we would be saving and transforming lives.

  In the overall context of the debate, this drug, Orkambi, is one element. The question is how to pay for it, regardless of whether we decide to pay such a vast sum. I am not suggesting the amount in question should be paid this minute, but we need to know what other countries have done. That is why I have asked my questions. If the Minster does not have the answers to hand, I would appreciate it if he sends on the information to us.

  I know the Minister has met organ transplant organisations. Our system is failing people from start to finish. The issue of organ donor co-ordinators was central. As a result of the debate in 2013, several were appointed. I will highlight how bad our system is. Some hospitals in the country have never asked any family to consider donating the organs of a loved one. Over the course of a decade, not one organ donation has come from some hospitals in this State. Why is that? It is a systems failure from top to bottom.

  An opportunity was missed at the time of the EU directive in 2013. I will not go into all the elements of it now, but the foregone opportunity is not only relevant to this issue.

  The answer to the questions will come from the evidence of what other countries have done, whether they have been involved in risk sharing and what price they have paid. Furthermore, if we can get an EU solution, it will be all the better. The fact is that this drug gives hope. There is nothing worse than to know that there is a solution but to be denied that solution and, by extension, be denied the hope that a child or loved one will be given a chance – that is all patients and families are hoping for.

  I would hate to be in the Minister’s position. A Minister of the Government gets lambasted from all sides. Now, the Minister is in a situation whereby it is a life or death decision for people. It is no easy position to be in when that simple question is put in front of the Minister. It is a complex question. Many issues must be weighed up, including the cost and the future impact in respect of purchasing other drugs for other sicknesses and illnesses. Anyway, this is really for the families that the Minister and all of us have met. It is a life-or-death decision. I hope the Minister will support them.

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