Tithe an Oireachtais An Comhchoiste um Shláinte agus Leanaí Tuarascáil maidir le Deonú Orgán Mean Fomhair 2013 ___________________________ Houses of the Oireachtas Joint Committee on Health and Children Report on Organ Donation September 2013 31/HHCN/013 Foreword by the Chairman of the Joint Committee on Health and Children, Jerry Buttimer TD. The Joint Committee on Health and Children warmly welcomes the Government‟s consultative process regarding its proposal to change the current practice of expressed consent or “opt-in consent” to one of “opt-out consent” in relation to organ donation in Ireland. In June 2012, more than 1,700 Irish adults were receiving haemodialysis, yet throughout all of 2012, just 163 renal transplants were carried out in the Republic of Ireland. To meet the needs of those receiving haemodialysis our health system should be performing in the region of 300 kidney transplants each year. This low rate of organ donation is reflected in Ireland ranking 23rd in European league tables for organ donation. Our current practice of using the “opt-in” system (or expressed consent) is used by only a small minority of countries in the EU. Countries that have changed to “opt-out” systems have seen significant increases in their rates of organ donation. Over a three year period after making the change to opt-out systems, Belgium saw its rate of organ donation increase by 100%, while over the same period, Singapore saw an increase of a massive 700%. Changing to a soft opt-out system has the potential to change public attitudes toward organ donation, and more importantly to vastly increase our rate of organ donation. It is vital that in such a new system, the family of the next of kin would always be consulted. This will ensure that the principle that donation is a gift is maintained. The Joint Committee is strongly of the view that any transition to a soft opt-out system must be supported by increased investment in essential infrastructure, transplant surgeons and trained support staff. Each kidney transplant has the potential to save €680,000 over a 15 year period. A short term investment in our organ donation infrastructure has the potential to deliver real long term savings for our h health system, not to mention the long term benefits to the lives of organ recipients. The Joint Committee welcomes the current public consultation on the proposals to change how Ireland operates its systems of organ donation. This underpins the ethos that everyone should have the right to participate in decisions affecting their health and to have their concerns heard. Individuals should be empowered to exercise control over their own health and to participate in the decision making process around health law and policy. Any transition to a new soft opt-out system should also be accompanied by a significant public awareness campaign prior to such changes taking effect. The Joint Committee recommends that any transition to a soft opt-out system will only apply to organs available for donation to other patients and not to reproductive organs, or other organs and tissues for research purposes. All persons over 16 years and with legally recognised mental capacity should have the ability to dissent from “presumed consent”. For children under 16 years of age and those lacking the legal capacity to consent, the next of kin should retain full control over consent, and the opt-in requirement should remain in these cases. The Joint Committee recommends the establishment of a National Register on Withholding Consent to Organ Donation. This should be automatically accessible to organ procurement services and managed by the health departments. In April of this year, the Joint Committee held two public hearings examining organ donation in Ireland, in which we heard the views of a wide range of stakeholders, including organ donors, organ recipients, practicing clinicians and surgeons, support organisations, the National Organ Procurement Service, the Irish Medicines Board and the Department of Health. 5 These hearings greatly enhanced the Joint Committee‟s understanding of the position pertaining to organ donation in Ireland and reaffirmed our view that the transition to a soft opt-out system is a necessary one. I would like to thank all the witnesses who attended our hearings, and made submissions, for their very informative contributions to this important issue. The oral presentations made at the hearings, along with the transcripts of those hearings are appended hereunder as the basis of the Joint Committee‟s submission to the public consultation process. I would like to thank all the members of the Joint Committee for their contributions and co-operation on this important body of work, and in particular, those of the opposition party spokespeople on Health. I would also like to thank the Oireachtas Library and Research Service, the Clerk to the Committee and the staff of the Committee Secretariat for their assistance in the production of this report. Jerry Buttimer, T.D., Chairman, Joint Committee on Health and Children 26th September 2013. 6 Members of Joint Committee on Health and Children DEPUTIES Jerry Buttimer TD Catherine Byrne TD Ciara Conway TD CHAIRMAN (Fine Gael) (Fine Gael) VICE CHAIR (Labour) Regina Doherty TD Robert Dowds TD Peter Fitzpatrick TD (Fine Gael) (Labour) (Fine Gael) Seamus Healy TD Billy Kelleher TD Eamonn Maloney TD 7 (Independent - WUAG) (Fianna Fáil) (Labour) Mattie McGrath TD Sandra McLellan Mary Mitchell O‟Connor TD (Independent) Sinn Féin (Fine Gael) Dan Neville TD Caoimhghín Ó Caoláin Robert Troy TD (Fine Gael) TD (Fianna Fáil) (Sinn Féin) 8 Senators Senator Colm Burke Senator John Crown Senator John Gilroy (Fine Gael) (Independent) (Labour) Senator Imelda Henry Senator Marc MacSharry Senator Jillian Van (Fine Gael) (Fianna Fáil) Turnhout (Independent) 9 Table of Contents SECTION 1 LIST OF THOSE WHO PRESENTED TO THE COMMITTEE ............. 11 SECTION 2 ORAL PRESENTATIONS ......................................................................... 12 SECTION 3 TRANSCRIPTS OF MEETINGS ............................................................... 48 SECTION 4 LIBRARY & RESEARCH PAPER FOR COMMITTEE ........................ 121 SECTION 5 SUBMISSION FROM FIANNA FÁIL .................................................... 141 SECTION 6 SUBMISSION FROM SINN FÉIN .......................................................... 142 SECTION 7 SUBMISSION FROM SENATOR JOHN CROWN ................................ 146 SECTION 8 TERMS OF REFERENCE ....................................................................... 147 10 SECTION 1 LIST OF THOSE WHO PRESENTED TO THE COMMITTEE National Organ Procurement Service Mr Joe Brolly Mr Shane Finnegan Ms Christine Quinn Irish Kidney Association Irish Heart and Lung Transplant Association Cystic Fibrosis Ireland Prof David Hickey Prof. Peter Conlon Dr. Colman O'Loughlin Dr James O'Rourke Dr Ruairi Dwyer Dr. Liam Plant Mr. JP McDowell Department of Health Professor Jim Egan Irish Medicines Board 11 SECTION 2 ORAL PRESENTATIONS My name is Mark Murphy. I am the CEO of the Irish Kidney Association. I will commence by giving you a brief outline of the history and evolution of the IKA and treatment of Kidney Failure in Ireland. Dialysis as a treatment is 70 years old. It came to Ireland in 1958 and kidney transplantation started in January 1964. In 1978 the Irish Kidney Association was founded by three groups of kidney patients coming together from Dublin, Cork and Galway, where haemodialysis was available. The catalyst was the need to start an Awareness Campaign to the public highlighting the need for kidney donation after death. The first Kidney Donor Cards were then produced by the IKA for the first awareness campaigns – 10 years after the UK Health System had produced theirs. As time moved on many more haemodialysis centres were built some funded by the IKA and some built by the IKA. The IKA grew as the success of dialysis and transplantation grew. A new drug was discovered, Cyclosporine which is very effective in stopping the body from rejecting a new strange donated organ. This permitted far superior longevity in successful kidney transplantation and liver, heart, lung and pancreas organ transplants also became possible and are now along with Kidney transplantation, normal surgery and expected by society. Currently in Ireland out of 3,900 patients with failed kidneys 53% or 2,100 are transplanted and 47% or 1,800 are on dialysis. Including all other organ transplants, there are just under 3,000 people in Ireland enjoying extended life because of organ donation resulting in transplantation. 12 Anyone who says that Irish organ donation and transplantation system is not working is simply wrong and misinformed. What is true, and why we are here today talking to you is that Ireland is the only country in Europe that never legislated for the Organ Donation and Transplantation Process. We did transpose the EU Directive on Quality & Safety of Organ Donation & Transplantation last August into a Department of Health Statutory Instrument. The Houses of the Oireachtas has never willingly debated organ donation and transplantation except for the Senator Quinn‟s private members bill number 43 of 2008. The discussion today surrounds the consent we seek from the public for deceased organ donation. For the last 49 years the consent has been Informed Consent by the Next-of-kin of the deceased. If no Next-of-kin are available, if they cannot make up their mind in time, if there is a dispute within the family, all these situations are described as “No consent” and organ donation does not proceed. If consent is refused obviously organ donation does not proceed, but that decision is also grouped together with the other situations and called “No consent” in all the records available to us. This dilemma of no consent has frustrated people across the globe and particularly in Europe where organ transplantation is advanced and as many as 10 people a day now die because of the lack of donated organs. Some jurisdictions created a law of Presumed Consent. The Spanish were the first to do so in 1979 and many countries choose to follow.