Professor Peter Conlon:

I thank the committee for inviting me to speak about organ transplantation in Ireland. I am the clinical director of one of the largest kidney transplant centres in the British Isles and have more than 20 years of experience in kidney transplantation. The views I express are shared by the vast majority of my colleagues in the care of dialysis and transplant patients in Ireland.

Patients with kidney failure have a number of therapeutic options. It is true to say that most patients in the world with kidney failure die without any significant treatment, as the treatment, although effective, is extremely expensive and requires a very sophisticated medical system to deliver it. Patients with kidney failure who have the good fortune to live in Ireland have access to a number of treatment options including peritoneal dialysis, home haemodialysis, in-centre haemodialysis, deceased donor kidney transplantation or live donor transplantation.

Kidney transplantation is without question the best treatment for almost all patients with kidney failure. It provides the best quality of life for patients with kidney failure, more than doubles their life expectancy compared to remaining on dialysis and, in the process, saves the State more than €750,000 over the lifetime of the recipient for each kidney transplant performed. Many patients receiving a live donor kidney transplant can reasonably expect their transplanted organs to function for more than 40 years, which mostly means for the rest of their lives. There are many impediments to delivering more kidney transplants, but the major impediment at present is the availability of suitable donors and the infrastructure to deliver these transplants.

As Professor Hickey described, Ireland has had a successful kidney transplant programme for almost 50 years, but it is nothing like as successful as it could or should be. Ireland should be aspiring to achieve kidney transplantation success similar to that of Norway. Professor Hickey has already described some of the Norwegian experiences. I will compare the two countries in terms of their approach to kidney transplantation. Ireland has a population of 4.6 million, and Norway has a similar population of 4.8 million. Ireland has performed an average of 150 kidney transplants per year over the past ten years, while Norway has performed between 270 and 300 transplants annually. As a result of this difference in kidney transplant activity, Norway has a stable population of 370 patients on maintenance dialysis while Ireland has more than 1,800 patients on dialysis. Ireland could, with appropriate investment, within a few years achieve transplantation results similar to Norway, with enormous benefits to patients with kidney failure in Ireland, and in the process save the State more than €300 million.

The scarcest resource in transplantation is organ donors. Kidney transplantation is almost unique among organ transplantation in that living donors are a major source of organs for successful transplantation. I will first discuss deceased kidney donation.

Organ procurement in Ireland, which is essential for all the disciplines of transplantation - including heart, lung and liver - is run on a shoestring. All organ procurement is run out of an office in Beaumont Hospital staffed by five very committed and professional transplant co-ordinators. These individuals also have many other duties besides organ procurement. There is practically no infrastructure for organ procurement outside Beaumont Hospital in the regional hospitals. The transplant co-ordinators at Beaumont Hospital have developed a network of link nurses in each intensive care unit, ICU, who - in their spare time - assist in educating their colleagues on organ procurement. This is no way to run a transplantation service.

These issues have become all the more urgent in view of the fact that the recently implemented EU directive on organ donation mandates the separation of organ procurement and transplantation and also insists on much more rigorous traceability and organ quality criteria. There is an urgent requirement to establish a formal national organ procurement agency, which would provide a national resource to every ICU and emergency room in the country, namely, expertise in organ procurement. As already stated, Ireland has five transplant co-ordinators. Northern Ireland, with a population less than half the size of the Republic's, has 27 and in the UK there are more than 200. When the UK recently implemented an investment in organ procurement, there was a 50% increase in organ donations. Implementing resources to properly manage organ donation is far more important than implementing a presumed consent law and is likely to result in a far more dramatic increase in organ donation.

Living donor kidney transplantation is also an important process in treating kidney failure and delivers far better long-term results than deceased kidney transplantation. I am pleased to inform members that the Department of Health and the HSE have recently committed funding to deliver the first phase of a very significant expansion in live kidney donation and have agreed, in principle, to fund a plan which, it is hoped, will deliver during the next three years 100 living kidney donation operations annually. This plan has been stymied at every turn and has not yet been implemented. I am unsure when it will be implemented, despite the urgent need that exists. There are currently almost 100 kidney donor-recipient pairs awaiting living kidney donation in Ireland.

There are, however, a number of very important other issues that need to be urgently addressed if Ireland is to realise the full potential of living kidney donation. In this regard, the implementation of the human tissue Bill will be necessary to deliver on the relevant targets. The first of the issues to which I refer relates to coverage of the out-of-pocket expenses of living kidney donors. Each living kidney donor saves the State more than €750,000 euros in health care costs. Currently, however, a living donor pays all expenses relating to travel to and from the hospital, extra child care costs, etc. Typically, a living donor will require several weeks off work following such major surgery and thus will not be available for work. It typically costs each living kidney donor between €5,000 and €7,000 in lost income and out-of-pocket expenses. It is common practice in most developed countries for health authorities to cover out-of-pocket expenses for living kidney donors. In the UK, the state covers up to £5,000 in such expenses. The EU directive requires the Minister for Health to implement such a system. I urge him to implement it without further delay. It is unfair that not only does a living kidney donor gives up one of his kidneys but that it also costs him so much money in lost income.

I am aware of at least two Irish individuals who wanted to become altruistic kidney donors. Such donors are people who recognise that there is a major need in respect of those with kidney failure and offer to donate one of their own kidneys to individuals they do not know. As a result of the lack of legislation permitting such donation in this country, it is not yet possible. The two altruistic donors to whom I refer donated their kidneys to people in the UK because it was not possible to donate in Ireland. This means that two kidneys were lost to Irish patients forever. Human tissue legislation would be necessary in order to legalise altruistic kidney donations here.

Patients with a donor who is incompatible due to a blood group or tissue type mismatch can now frequently find a compatible donor by way of a paired kidney exchange programme. We have recently developed a relationship with NHS Blood and Transplant in the UK for the sharing of living human kidneys as part of the implementation of a paired kidney exchange system. This will allow large numbers of Irish and UK patients to receive live donor transplants that would not otherwise be possible. In order to implement the paired kidney exchange scheme with the UK, the Government or one of its agencies will be required to enter into a service level agreement with the UK transplant authority.

A significant number of patients living in Ireland and receiving kidney treatment here have relatives abroad who would like to come to Ireland and donate a kidney to their loved ones. There is currently no clear-cut mechanism or policy from the Department of Health to allow these donors to come to Ireland and receive care in Irish hospital and health care institutions in order to facilitate organ donation here.

The Road Safety Authority, by way of its hard-hitting public awareness campaigns, has transformed people's view of road safety. I am of the view that a level of resources similar to that employed in respect of road safety campaigns should be invested in promoting organ donation awareness among the general public.

Transplant surgery commonly occurs in the early hours of the morning and is consequently arduous. If a transplant programme is to be successful, the system needs to ensure there is an ongoing supply of these highly skilled professionals. I refer, in particular, to transplant surgeons, whose training typically takes 15 years to complete. Failure to implement the working time directive and bans on recruitment have put this essential resource in peril.

As somebody who each day witnesses the fantastic life-saving and life-changing benefits that organ transplantation brings to the Irish population, I would support any proposal that would ethically allow for the expansion of this technology in this country. I am of the opinion that introducing a presumed consent law would have very little impact in expanding organ transplantation and should not be at the top of our priority list. Rather, we must focus on the reorganisation of organ procurement services to ensure that every potential organ donor, whether living or deceased, is identified and facilitated in order that successful transplantations can take place. There is also an urgent need to implement the planned expansion of transplantation infrastructure at Beaumont Hospital to ensure that all live and deceased kidney transplants can be performed to a high standard and without delay.