Mr. Philip Watt:

I would also like to acknowledge my colleagues in the Gallery, Ms Nicola Cassidy, Ms Nicola Hurley, Ms Ann Marie O'Dowd and Mr. Michael Geoghegan from the Irish Donor Network and various patient groups. We are dedicating our presentation to former Senator, Feargal Quinn, who sadly passed away earlier this year. He was a fantastic champion of organ donation and was very supportive of the soft opt-out system.

Organ donation is a precious gift that saves lives. In large part due to a shortage of organs, people continue to die in Ireland unnecessarily while on the waiting list for organs they desperately need in order to preserve and enhance their lives and health. One organ donor can potentially save seven lives. There are also benefits to their families, Irish society in general, the Irish health system and the wider economy in promoting transplantation. That is why IDN is committed to encouraging transplantation and to increase the numbers of donors and of lives saved. In this context, IDN warmly welcomes the introduction by the Minister for Health and the Irish Government of the human tissue Bill 2019, and in particular the provisions to provide for an opt-out system of consent for organ donation and for an associated register. We note that this change is also widely supported by most political parties in Ireland, the medical community and by the vast majority of relevant patient groups and the general public. We also note that it is an important part of the programme for Government.

However, we also wish to make clear in this submission that the ambition to make more organs available for transplant may be blunted or may not reach full potential if it is not accompanied by the necessary supporting resources and infrastructure. In particular, we need more organ retrieval surgeons and donor nurse specialists in our major intensive care units in our hospitals. We also need improved hospital infrastructure and staffing levels in the three transplant centres at the Mater, Beaumont and St. Vincents’ hospitals, including pre- and post-operative rooms and sufficient access to operating theatres.

We also need sufficient resources for a national public awareness programme and register, and some modest resources to help patient groups to support the public awareness campaign that will accompany the human tissue Bill.

The Irish Donor Network is made up of the following patient groups: the Alpha One Foundation; Chronic Obstructive Pulmonary Disease Support Ireland; Children’s Liver Disease Ireland; Disease Support Ireland; Cystic Fibrosis Ireland, which is my organisation; Cystinosis Ireland; the Irish Heart and Lung Transplant Association; and the Irish Lung Fibrosis Association, which is represented here today. Soft opt-out is also supported by the Irish Heart Foundation, the Irish Thoracic Society and the Irish Hospice Foundation and many other key stakeholders concerned with organ donation and transplantation in Ireland.

I will now turn to why the Irish Donor Network supports the human tissue Bill and soft opt-out. The IDN strongly supports the introduction of a soft opt-out system for organ donation, which basically means an opt-out system with inherent safeguards. The IDN has been campaigning for such a system for many years. Under the proposed new system, the donor’s next of kin would still be consulted, but deceased donors’ consent would be presumed unless there is evidence that they did not wish to donate. An alternative approach is the hard opt-out system, which has been tried in other countries including Austria, where next of kin are not consulted. This system has been shown not to work. It was tried in Austria and it failed, so we certainly would not suggest that system be brought into Ireland.

While it is always challenging to make direct comparisons with other countries, the decision to bring a soft opt-out system into Ireland follows the success of soft opt-out in many other EU countries, including in Austria, Spain and Belgium. There has also been a strong momentum growing in the UK to introduce soft opt-out in recent years. In England, the Organ Donation (Deemed Consent) Act has passed through the UK Parliament, with implementation due to start in April 2020. This will replace the present on line opt-in and opt-out system that has failed to deliver and which should not be considered for Ireland. Under the existing system in the UK, only 38% of the UK population has registered their wish to opt in on the existing online organ donor register, which is why most UK health bodies concerned with transplant are now seeking to replace this system with the approach that we are advocating for Ireland. The IDN does not want to import an opt-in and opt-out system into Ireland, because this system has clearly demonstrated failure in England.

Donor cards, apps, and codes on drivers' licences are worthy additions to a programme, and we pay tribute to the work of the Irish Kidney Association in developing these excellent public awareness initiatives. We believe there is no reason these initiatives would not continue into the future. They are not, however, a substitute for a comprehensive organ donor consent legislative process and a system based on evidence.

In Scotland, a new Bill was enacted in July 2019. In Wales, such a system has now been in place since 2015. Of 160 organ transplants in 2017 in Wales, 39 were organs transplanted using its deemed consent system. Only 6% of people opted out of the system in Wales. Authoritative research published by the British Medical Journal concluded that the change in Wales had a positive impact on donation but stressed the importance of resourcing transplant and donation infrastructure.

The groups involved in the IDN have been involved in supporting organ donation for many years. The IDN believes that, as part of a broader strategy, including improvements in organ donation and transplantation infrastructure with resourcing and organisation, a shift to an opt-out system will have a positive impact on donation rates. Independent research carried out by the University of York, which I will go into in detail, showed four major methodologically sound studies comparing donation rates in countries with and without soft opt-out and found that the practice of soft opt-out has been proven to increase organ donation in three of the four studies.

Research undertaken in Ireland shows that 80% or more support organ donation but only about a third of us tend to carry a donor card. The IDN supports the principle behind an opt-out system, that if people do not object to their organs being used after death they should be used to save lives. Under an opt-out system, individuals have the same choice as in an opt-in system - to donate or not to donate - so individual autonomy and choice are protected and respected under this proposed new system. The proposed new system is simply a change in the way people’s views are expressed. All organ donation is a gift and should be recognised as such in the future, irrespective of the model of consent in place. Families are often comforted by knowing something good has come from their loss. The expectation of IDN is that, under a soft opt-out system, organ donation would become the default position which, over time, would change expectations in society and so become the societal norm. Thus, there would be a shift where donation is a natural and expected thing to do.

We would also point to other aspects of the legislation that are important, such as the introduction of a living kidney sharing scheme. This has worked very well and is called altruistic donation. This allows a stranger and people who are not relatives to donate a kidney. This is working very well in Northern Ireland and 89 donors have provided such support in recent years. We also strongly support the public awareness programme and patient groups should be involved in this too.

People continue to die waiting for a transplant in Ireland. The submission from the seven patient groups of the IDN contends that the momentum in Ireland for change is growing, as it is with our nearest neighbours in the UK. As with all major changes, however, the introduction of soft opt-out needs to be accompanied by a persistent, continuing and adequately resourced public awareness programme, an online register and a significant additional investment in transplant infrastructure such as organ retrieval surgeons and other key specialised staff. We are delighted to continue to play a supporting role in this change. We hope that the living kidney sharing scheme would come in under the new legislation also.

IDN wishes to acknowledge the work of senior officials in the Oireachtas Joint Committee on Health, Organ Donation and Transplant Ireland and Professor Jim Egan, the HSE, and the Department of Health, led by Michael Conroy. We also thank the Minister, Deputy Simon Harris, the Minister of State, Deputy Finian McGrath, and all of the political parties here today. We urge that this legislation is enacted as soon as possible.