Seán Crowe (Dublin South West, Sinn Fein)

I am delighted to be one of the Bill's cosponsors with my colleagues, Deputies O'Rourke and Cullinane. I am disappointed that the Government is putting this on hold for 12 months. I thank Dr. James Larkin, who is a senior postdoctoral fellow at the Royal College of Surgeons in Ireland, RSCI, for his research and assistance in the preparation of the Bill.

When this issue first arose, most people listening in on this debate would have thought there was already sufficient legislation in place. Unfortunately, when we dug deep down, that was not the case. It is very much an issue of self-regulation. As my colleague stated, payments to healthcare professionals and organisations can create a conflict of interest. Evidence from this jurisdiction and others is that payments from the pharmaceutical industry is associated with higher prescribing rates, higher prescribing costs and an increased use of specific drugs. There is a saying: "Big pharma, big pockets". Unfortunately, that issue has impacted families and individuals across the world. There are many horror stories about how this happened that we are all familiar with. The idea that we would ask people to voluntarily register for these payments does not make sense in the world that we live in today.

One of the facts that has emerged is that the RCSI found that the identities of many of the recipients are anonymous. This is supposed to be the register of interests of those who have got payments, yet we have come across entries with no name. It does not add up; it does not make sense. The Bill is proposing that failure to register would result in a large fine of €100,000. We are open to amendments if people feel that should be higher. The Minister of State is talking about referring it to the health committee and having more discussion on it. Why is this not already in situ? What is the delay? What was the reluctance to try to legislate in this area? It seems like a logical practice that, if people are getting funding off a particular pharmaceutical organisation or group, there should be some sort of tracking device. That is what the Bill tries to set out. It is good for patients. It is good for the industry that it be monitored. It is good practice for, and in the interests of, everyone involved.

I was in the audiovisual room earlier. There were people there from Queen's University. They were talking about the hugely positive work and co-operation that they were doing in the whole area of health, North and South. We travelled north when I was Chair of the health committee. We looked at all-Ireland cancer facilities. People in County Donegal were availing of cancer treatments there. There are others. It makes sense that we try to work with one another across the board. The idea that the industry can have carte blanche or that someone can pay some individual to possibly prescribe a drug is nonsensical and bizarre. It is totally wrong.

I raised earlier with the Tánaiste the case of children with muscular dystrophy and, again, it is children on the island of Ireland. The challenge for these children is that they cannot access this drug, and the families are saying it is time-sensitive. What happens to the child, and it is mostly young boys it affects, is that they basically waste away and end up in a wheelchair and eventually die very young. There is a child in my constituency called Archie and his family have been doing massive fundraising. They are not only seeking access to this drug that is currently not available in the South of Ireland, but they are also trying to fundraise for a genetic procedure in the US and trying to raise millions of euro. The Minister of State might have come across it. In the North, it is similar. There is a child there called Alfie and, again, his family are trying to do it. The problem in the North is that they have access to the drug, but they do not have the funding to roll out the drug. In the South, we have the funding to roll out the drug, but we do not have the drug. I suggested to the Tánaiste that he raise it possibly on a shared island basis and that we would try to look at this.

I thank the Ceann Comhairle for allowing me to raise this particular issue. I am raising it as part of this Bill because it is important for patients, but it is also important for their families. There is no linkage between this company trying to pressurise people to roll out this drug or anything else. There is no linkage on that basis.

I will go back to the question again as to why we are delaying it. The surprise for most people is that they would have thought there was already robust legislation in this whole area for monitoring the payments to individuals and groups. That is at the heart of what we are trying to do in this Bill, but there are other elements of it as well. I am disappointed we are kicking the can down the road and leaving it for another 12 months. If the Bill was passed, it would probably take a number of years to try to get it up and running and so on. There are a lot of practical solutions within the Bill, particularly with regard to those who would hold the register and so on. There has been a lot of thought put into the Bill. I commend those who were at the centre of drawing this up and those who brought it to our attention. I say well done to all who drafted the Bill and brought it before the House. I look forward to others taking part in this debate. I ask the Minister of State to try to clarify the reason for the delay and why this legislation is not in place.

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