I thank the Chairman and members of the committee for the invitation to attend this morning's meeting, which affords us an opportunity to set out our proposals, which we feel would improve the current organ donation system in Ireland. Mr. Michael Kiely and Ms Annette Betson and I are very pleased to be here and have listened with great interest to the many invited guests. We also hope our personal experience of organ failure will assist the members of the committee and give them a greater understanding of how organ failure affects the lives of patients and their families.
I will give a brief introduction. Mr. Kiely suffers from end-stage kidney failure and after being on hospital haemodialysis, his sister, Ms Betson, decided to become a living donor to him. As a result in January 2012, Ms Betson successfully donated one of her kidneys to Mr. Kiely. I was diagnosed with polycystic kidney disease at the age of 18 and started peritoneal dialysis or home dialysis in September 2011. I am happy to report that five weeks ago I received a kidney transplant from a deceased donor through Beaumont Hospital. My form of kidney failure is hereditary and unfortunately has affected four generations of my family. My father, Mr. Tom O'Halloran, has suffered with this illness for 30 years and is currently awaiting his third kidney transplant. So far he has been waiting for six years. It would be more common for a parent to be proud of his or her child, but I can say wholeheartedly that I am so proud of my father as a result of what he has been through. While I would always have loved to have given my dad a kidney, since that is not possible being here is the only way I can help him.
It is because of what we have been through or in my case what I still see my father going through that Mr. Kiely, Ms Betson and I would like see an improvement in the current organ donation system. In that respect we have two proposals we feel could greatly improve the current system of organ donation. Our first proposal is the employment of more co-ordinators in all acute hospitals. We feel that the role of the co-ordinator is extremely important, particularly in identifying potential donors and also in comforting families who have decided to donate their loved ones' organs. At present Beaumont Hospital has six co-ordinators with none in any of the other acute hospitals. As a result we believe potential donors are being missed. Having two co-ordinators in each acute hospital would go a long way towards ensuring that organs are not being overlooked and result in more transplants thereby saving more lives.
Our second proposal is the establishment of a national organ donor register, which we believe would encourage more people to sign up indicating their willingness to be a donor. In this age of technology, this seems the most effective way to obtain donors. The UK operates a similar register and after running a campaign at the start of the year to highlight organ donation, an additional 147,000 people registered. While I appreciate that it has a greater population, as this form seems to work there, why should Ireland not establish a similar register?
The newly introduced driving licence format gives an opportunity to tick part 4 in question 20 agreeing to become an organ donor whereby code 115 will appear on the licence. The Government is already in effect collecting this information therefore making it easier to establish a register. For people without access to a computer we feel that organ donor cards could still be used but perhaps a prepaid envelope should be included with the card allowing them to send their details for entry into the organ donor register. It would be imperative for all acute hospitals to be able to access this database should an issue with organ donation arise.
Over the past nine years there has been a significant increase of 785 patients needing dialysis. There are various reasons, including obesity, diabetes, and high blood pressure. The end result is that the number of patients needing dialysis is increasing annually. As of 31 December 2012, some 1,828 people were on dialysis at a cost to the State of €118.9 million. This can be compared with the cost of transplant per patient at €96,000. I should say I got these figures from the HSE. If we were to increase kidney transplants by 100 each year to reach a target of 250 per annum, the cost to the State would be €24 million, thereby reducing the burden of dialysis on the State to €94.9 million. It should be noted that post-transplant the cost of maintaining a patient on drugs and hospital visits is approximately €10,000. An estimate is that each transplant results in a saving to the health service of in excess of €830,000 per patient over the lifetime of the graft, which is approximately 15 years. An increase in transplant activity of 100 transplants therefore results in savings of €83 million over the lives of those 100 patients when compared with maintaining them on dialysis.
Since I received my kidney transplant and after consulting various renal consultants and clinical nurses, I have been informed that the rate of rejection of a kidney transplant is now minimal. This is due to the exceptional cross-matching in Beaumont Hospital and advances in immunosuppressants. Therefore the medical staff rarely see rejection anymore. While I say that the average life of a kidney transplant is between ten and 15 years, as a kidney recipient, I am certainly aiming for many more than 15 years. Hence the saving of €830,000 I mentioned earlier could possibly be greater.
The kidney transplant programme in Ireland is at a critical juncture where, in order to further develop the programme for both living and deceased donors further investment in infrastructure is needed. The investment would result in a doubling of the life expectancy in patients with renal failure and a saving to the health service of in excess of €240 million over the next ten years. Expansion of kidney transplantation to 250 transplants annually would result in the following benefits over the next ten years: a reduction of more than 1,000 in the number of patients maintained on dialysis; a reduction in dialysis treatments of 1.4 million; a reduction of 2.8 million patient journeys to dialysis treatment centres; and a doubling of the life expectancy patients would have if they continued on dialysis. All those figures have been supplied by the HSE.
Having been on two forms of dialysis over 17 months - I know Mr. Kiely will agree with me on this, I cannot overemphasise how my life has been transformed in just five weeks. I have never felt better. A weight has been lifted from my shoulders and my life is my own again.
The following needs to be done in order for Ireland to reach its full potential of donors. We need to train more co-ordinators in all acute hospitals. We appreciate there would be initial costs to such a project, but as highlighted by the figures I quoted earlier, the cost would be greatly outweighed by the benefit of getting patients off dialysis and improving their quality of life. We need to establish a national organ donor register that is accessible by all acute hospitals.
The information could be collected on this register or on the new driving licence application form. Promoting living donors could be achieved by trying to reduce the time it takes for cross-matching and work-ups. People could be encouraged to donate through incentives. In some parts of the United States tax incentives are offered to those who offer a kidney to a loved one. In the past week, Australia announced it would pay three weeks wages to anyone who agreed to become a living donor to a loved one to a maximum of AU$3,600. Perhaps Ireland could consider a similar or different incentive to encourage living donors.
Public awareness is extremely important. We feel most people not affected by organ donation do not fully understand its implications or how they can help. Recently, and unbelievably, I was asked by a man in his mid-30s what was dialysis. This is why educating and informing is so important. Real-life stories are the best at achieving this. For my part, six months ago I decided to establish a website, kidneyfailuremystory.com, with a view to raising awareness of dialysis and documenting how it has affected my life. In a way I wanted to give hope to other patients who had just started dialysis. At times the isolation can be immense. To date, in less than six months, more than 19,000 people have viewed the site. If only a fraction of these 19,000 people decide to carry a donor card as a result I will have been successful in raising awareness. At no stage has anyone ever disagreed with soft opt-out. Everyone has been in favour of it.
Mr. Kiely, Ms Betson and I hope committee members have found our presentation informative, and that they appreciate our concerns regarding organ donation. While we do not expect miracles we would like to see an improvement of the current system, a change for a better, and a more positive future for all patients awaiting any form of transplant, whether heart, lungs, liver, pancreas or kidney. Who knows when any of us or our families may be affected by organ failure. It should be noted one is three times more likely in life to need a transplant than to have one's organs donated. Since the numbers awaiting transplants are growing yearly we cannot emphasise enough the real need for an immediate improvement. For this reason we are in favour of soft opt-out and for change sooner rather than later. I thank the committee.
