Oireachtas Joint and Select Committees

Thursday, 25 April 2013

Joint Oireachtas Committee on Health and Children

Organ Donation: Discussion (Resumed)

10:10 am

Dr. Liam Plant:

I might add two points of information on numbers which might inform the joint committee which I thank for its invitation. I work as a consultant renal physician at Cork University Hospital. Between 2003 and 2009, I acted as chair of the national strategic review of renal services.

Since March 2009, I have been the national clinical director of the HSE national renal office. The national renal office is responsible for planning, co-ordinating and managing the strategic framework of renal services across the country. Prior to 2001, I worked as a consultant renal physician at the Royal Infirmary of Edinburgh and was involved in the organisation, co-ordination and delivery of renal and transplant services in that country.

As has already been said, in common with all countries, the number of our fellow citizens affected by permanent kidney failure, a term which, as the committee will have heard, is technically described, perhaps rather unpleasantly, as end-stage kidney diseases, ESKD - it merely means that one's kidneys are permanently failed and one either needs dialysis or a transplant - continues to grow. The national renal office conducts an annual census of this on 31 December each year. On 31 December 2012 - this is in part answer to a question the Chairman posed to the Minister on 5 March last - just under 4,000 of our fellow citizens had end-stage kidney disease, 81 being children under the age of 18. Of the 3,876 adults with end-stage kidney disease, 1,560 or 40% of the total received treatment by haemodialysis at a number or haemodialysis units dispersed around the country. Some 237 or 6% of the total were treated by one of the forms of home haemodialysis or home dialysis - there are different forms - in their own homes. Thankfully, and I would echo what has been stated already that this is a testament to the existing success of the renal transplant programme in Ireland, 2,079 or 54% of the total already have a functioning kidney transplant, and 62% of children with end-stage kidney disease currently have a kidney transplant.

It is important to stress that whereas all types of renal replacement therapy are successful treatments for end-stage kidney disease, prolonging survival, improving functional status and allowing patients to carry on with their lives, there is no doubt that kidney transplantation is the best of these options. I will not reiterate what has been said on this already. It is the policy of the national renal office that strategic planning should seek to maximise the number of patients who can avail of this and whereas not all patients may be suitable as recipients of a kidney transplant, many more than have currently received one are so and this is reflected in the waiting list for transplantation.

As well as being a considerable physical, social and psychological burden on patients with end-stage kidney disease treated by any of the forms of dialysis therapy, the costs to the State of providing these therapies are very substantial. In 2011, the ESRI noted - the reference is given as "Activity in Acute Public Hospitals, Annual Report 2010" - that the single highest-ranked procedure for day patient attendances at acute public hospitals was haemodialysis and that accounted for one fifth of all day-case attendances. In 2012, we delivered just under 250,000 haemodialysis procedures in Ireland. Another metric which many may find compelling is that last year, with a careful mapping exercise, we identified that Irish patients who travel to and from dialysis - one must remember they go 156 times a year - travelled 13.5 million km in 2012, and the State provides a degree of subsidy to this.

Despite reductions in the unit costs of these treatments over the past few years, they continue to generate very substantial revenue charges. Professor Hickey referred to those numbers. The best estimate that our office could make on the cost of this would be as follows. We believe that the attributable costs for dialysis, excluding support for transplant and certain drugs, comes to approximately €91 million for haemodialysis and approximately €7 million for home therapies. If a patient is transplanted, he or she will also be on transplant drugs which would cost roughly the same as the other drugs they are on. Effectively, just under €100 million is the cost of the dialysis therapies for 1,800 of our fellow citizens.

In the five years since 2007, the number of adults with ESKD has increased by 24%. That is an absolute increase of 743 patients. Of this increase, 63% has been accounted for by an increase in the number of those with a functioning transplant - that number being 466 - with the remaining increase due to an increase in those treated by dialysis - 277.

The second point of information is that we are very comfortable in modelling the likely future growth in end-stage kidney disease. Based upon what has happened previously and what we would anticipate in the future - one must remember that the growth in the number of persons at the end of every year with end-stage kidney disease is the sum of new patients who start for the first time minus those patients who, regrettably, pass away and how they are distributed depends upon dialysis - we would project that every year we will have between 114 and 178 additional end-stage kidney disease patients in the Republic of Ireland. If I take the mid-point of that which is 150, and if there is no additional transplantation, that means that every year we will have to open a new haemodialysis unit the size of Cork University Hospital dialysis unit, which is the second largest in the State. If transplantation rates go up, that proportion that will go up will obviously diminish.

There is, therefore, echoing what others stated, little doubt but that an increase in access to organs suitable for transplantation would improve the survival, rehabilitation and quality of life of many more patients with ESKD than at present. Furthermore, the potential future costs of dialysis therapies that would be forgone - these would not be savings we would now make but future costs we would avoid - would benefit the renal programme, the health services as a whole and the Irish taxpayer.

The principal question that needs to be addressed and is being addressed by this committee is "how is this best achieved?". A variety of potential solutions have been advanced by a variety of individuals, organisations and healthcare systems. I am happy to offer my own observations on those elements that I think are likely to increase transplantation while at the same time, as has been mentioned, preserving the confidence of the wider citizenry in the organisation of this activity.

Undoubtedly, increasing the resources available to support living-donor transplantation is a key element, but what of deceased-donor transplantation? As has been highlighted in a 2009 United Kingdom health technology assessment, a number of elements contribute to the variation rates of organ donation between countries. These include: the national wealth and investment made in health care services; the legislative framework that underpins donation, particularly as this applies to questions of presumed or informed consent; the availability of potential donors - comment has been made about variations, thankfully, in road traffic deaths and other issues; public attitudes to, knowledge of and education about organ donation and transplantation; and, critically, the organisation and infrastructure provided to deliver organ donation and transplantation. Much of the commentary has focused on legislative framework which is of extreme importance. However, I would strongly associate myself with the views expressed by others that in the absence of a robust organisation and infrastructure to support this endeavour, any legislative framework is unlikely to achieve its maximum potential in increasing donation. Similarly, robust engagement with the public to minimise anxiety, misunderstanding and fear regarding any potential legislative change must also be of the highest importance.

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