Sunday Times: Health Minister must put Organ Transplant Law up for debate

Sunday Times 18th August 2013

The history of the Irish health system is pockmarked with horrific systems failures that have damaged people’s lives thanks to political incompetence. Now we are facing another one. James Reilly, the health minister, had the opportunity to put in place an effective transplant system that would save lives and enhance the quality of life for thousands, in the process saving the healthcare system vast sums of money. Instead, he has rammed through a flawed EU directive on organ donation that the Irish Kidney Association believes is a disaster. He needs to debate this law and listen to his colleagues, the medical profession and organ donation groups.

Since this EU law was signed into Irish legislation last year (ignoring the Dail, Seanad and health committee in the process), 65 people have died on waiting lists for organs. There are more than 650 people awaiting heart, lung, liver, kidney and pancreas transplants in Ireland. About one in 10 of these people will die. That 650 figure would be greater were it not for the number of people who have been taken off the transplant list because they are deemed too sick to receive one.

There is a way to raise the tally of successful transplants, cut waiting times by years and improve people’s lives. All the minister has to do is listen to the advice that is readily available and he can take hundreds of people off dialysis in the next decade, saving taxpayers about ¤325m in the process.

The reason we have so many people waiting, and dying, on transplant lists is because we have not put in place the proper systems to ensure we have more organ donors. The responsibility for this failure lies not with the medical profession but largely with successive governments.

Until 12 months ago, Ireland had no legislation on organ transplants. When Reilly signed the EU directive into Irish legislation it was, according to Mark Murphy, chief executive of the Irish Kidney Association, “the worst implementation of this EU directive in any EU member state”.

It is the dysfunctional manner in which our laws are made that leaves us with a dysfunctional organ transplant system. There is a perception that the Dail and Seanad make most of the laws in the land. In fact, most of our laws are made by ministers incorporating EU laws into Irish legislation by signing a statutory instrument with no reference to the Dail, the Seanad or specialised committees.

In one 12-month period, ministers signed 164 EU laws directly into Irish legislation, compared with 49 acts passed by the 166 members of the Dail and 60 members of the Seanad.

This dysfunctional legislative process meant that for 650 people waiting for a life-saving organ transplant there was no scrutiny, debate or oversight by the elected members of the Dail on an EU law that affects their lives. These people were entitled to amendments to the draft EU directive which would have made it work better for all those on waiting lists and the people who will be joining them.

So what should the health minister have done with this

EU law? He should have followed the example of Croatia, a country with the same population as Ireland. Ten years ago Croatia was bottom of the European table when it came to organ donation and transplantations. Now it is top.

The key to Croatia’s transformation was the placement of organ donor co-ordinators in every hospital to meet and discuss options with families who have to make the hardest decisions at a time of enormous personal loss. Reilly should have put the same system in place in Ireland. At the moment we operate an ad-hoc system of medical professionals who do this work without the necessary training or proper support.

Croatia also allowed for data sharing. Our health minister should have forced state agencies to share information with each other. So the Department of Transport should be required to share with the HSE information collected from driving licence applications where people tick the “organ donor” box.

Reilly should also have appointed one competent authority on organ donation and transplants. Instead he is sharing the competencies across two existing government agencies, the Irish Medicines Board and the HSE. This ensures the leadership required to drive organ donation is doomed because neither body has sole responsibility for the task.

The minister now wishes to legislate for ‘presumed consent’, that people are deemed donors unless they actively opt out of the system. This should have been discussed and argued last year before the Reilly signed the law regarding consent on August 28, 2012. The Oireachtas health committee spent two days hearing from experts on the subject of presumed consent in April this year, seven months after the minister signed the EU law which defined consent laws in Ireland for the first time. Croatia had presumed consent for 10 years but it made no difference to its donation rate. Its turnaround was achieved by putting proper infrastructure in place.

Despite the existence of legislation allowing for the recall of the Seanad, the government last year blocked the recall of the upper house to discuss the EU law on organ transplantation. The government has since conceded that it did indeed act unlawfully. Once again I have obtained the required number of signatures to force the recall of the Seanad, where the government will be called to account for legislating without consultation.

I hope that this flawed legislation will be amended, those waiting for organ transplants deserve better from their government.

Mark Daly is a Fianna Fail senator

Twitter-64Be part of the Conversation! Tweet @SenatorMarkDaly to stay up to date on Mark’s work for Organ Donation and Transplantation in Ireland here. The Seanad will be recalled from recess Tuesday, 20th August.

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