Orla Tinsley: Ireland’s long road towards making it easier to receive a transplant

The Human Tissue Bill is finally at committee stage.

Fifteen years ago, in 2008, the Bill was first proposed. The timing was significant. It was three years since Ireland opened its lung transplant programme at the Mater hospital and one year after the first double lung transplant of a person with cystic fibrosis there. Before this, Ireland’s lung transplant list was outsourced to the UK. To Newcastle. Paul Minchin was the first person with cystic fibrosis to have a double lung transplant on Irish soil. He was a passionate young man who I had the pleasure to interview during his recovery. He wanted nothing more than to be able to work the land with his brothers again once he had recovered from surgery.

It was an honour to interview him after his transplant and it was devastating to hear of his death some time later.

When we look at the path to transplant and the recovery from the surgery we must also look at the aftercare and the infrastructure we need to honour the gift of life. In order to honour the donor, we must have legislation that protects and privileges the care of organs. This legislation supports the growth of this – though more is needed.

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Human Tissue Bill

According to the Department of Health, the Human Tissue (Transplantation, Postmortem, Anatomical Examination and Public Display) Bill has been drafted to legislate to:

• Provide general conditions for the removal, donation and use of organs and tissue from deceased and living persons for transplantation.
• Regulate practice and procedures for postmortems in hospital settings.
• Provide general conditions and regulations for anatomical examination.
• Provide general conditions and regulations for public display of bodies after death.

The Bill introduces a soft opt-out system. Under this, consent for organ donation is presumed unless the person has, while alive, registered their wish not to become an organ donor after death.

I was 21 when I first became aware of the Bill through my work as an advocate. I am 36 now. I would say, no matter what your life experience has been, that’s a hell of a lot of time

As just one person who has supported the need for this Bill, it is striking to measure the length of time it has taken. I am not surprised about the delays, given the creaky and laborious routes Ireland seems to have to always take to change our health system and our legislation, despite the best efforts of activists and advocates. It is endlessly burdensome for those who find themselves dealing with a service that could, with enough political will, be better by now.

I was 21 when I first became aware of the Bill through my work as an advocate. I am 36 now. I would say, no matter what your life experience has been, that’s a hell of a lot of time and, although you may not know it yet, the existence or non-existence of this Bill will directly affect your life and the life of your family and friends at some point in your life.

Fifteen years ago, I was used to the slow rate of change for urgent cystic fibrosis services, so I expected this Bill to be difficult, but I did not think it would take a decade and a half to see real movement. We have to ask ourselves, why?

Why wouldn’t something like this be paramount to pass and provide life-saving options to people and families who are staring death in the face? Education, I believe, is a huge factor. When there is not enough effort across the board to make people aware, then donation cannot happen, and when there is no awareness, there is no public conversation and therefore no political will.

Is Ireland ready to become a nation of organ donors?

Listen | 20:47

However, grassroots efforts have been under way for some time. In 2013, I was invited to work with brilliant transition year students at Eureka Bodie Secondary School (in Kells, Co Meath) who created a video package about organ donation after their friend had been directly impacted by it. This package was made available to all schools via the Irish Kidney Association. These teenagers were profoundly passionate about helping people understand organ donation.

Ireland lags behind other European countries in donation figures. Out of 28 countries, we sat at number 18 in terms of numbers of donors in 2020

In Belfast, the Aquinas Diocesan Grammar School has been running a module for more than five years to educate students on organ donation. They have screened my documentary, Warrior, as an educational tool. And earlier this month, six-year-old Dáithí Mac Gabhann won his campaign, his heroic effort, to get opt-out legislation passed in Northern Ireland. He has been waiting for a heart transplant for the same length of time that I have been living with my donor lungs. I hope he gets his transplant soon.

Legislation around the retention and donation of organs is vital, as Ireland lags behind other European countries in donation figures. Out of 28 countries, we sat at number 18 in terms of numbers of donors in 2020. The proposed soft opt-out legislation will bring Ireland into line with Dáithí’s Law, but it will not solve the issue of too few donors. But with robust legislation in place, we might not have had the gut-wrenching story from Cork University Hospital in 2019 where the organs of 18 precious children were sent to Belgium to be incinerated without their parents’ knowledge.

Would legislation passed any time between 2008 and 2019 have prevented that? It’s hard not to think: yes, a legal framework would have helped.

The highest rate of transplants in the world is in Spain. In the years following the implementation of an opt-out system in Spain, there was an increase in transplants carried out over a 10-year period and this was supported by the investment and development of more resources. Crucially, this meant hiring more transplant co-ordinators to approach families when the possibility of donation arose. How families were approached made a big difference as to whether they would donate, they found. And when you think about the tenderness, care and skill needed for this kind of conversation, we cannot skimp on the staff numbers and training for something so deeply profound. And those who currently do it need breaks. We need more co-ordinators.

Following that, the appropriate number of critical care beds were made available in Spain. However, in Ireland, in 2021, a young woman arrived at hospital for her double lung transplant only to be told that it would not go ahead. This was not because of an error with the donor lungs. The reason this young woman could not have her life transformed that day was there was no ICU bed available for her to recover from the seven-hour surgery. Sometimes, the lungs are no longer suitable and you have to return home. This happened to me six times before my miraculous donor saved my life. Each time, I returned home and got a little sicker and a little slower.

Altruistic kidney donation

Another important part of the Human Tissue Bill is the provision for non-directed altruistic kidney donation. This service currently exists in many other countries, including Northern Ireland, where up to six people from the Republic travel every year to donate to a stranger they have never met and will never meet.

[ How to be an organ donor: ‘The surgeon said he wasn’t going to take my kidney out if I wasn’t sure’ ]

This gift, this ultimate altruistic act, saves lives instantly and dissolves the dreary contract of driving to dialysis three times a week and all of the dreadful side effects. The manifestation of non-directed altruistic donation in Ireland will dramatically increase the donor pool and transform lives.

We must honour our donors and celebrate their lives and the lives they save

Ireland having a robust transplant system that works and is supported by legislation and resources should be a matter of national concern, because you never know when you or your loved one might need a transplant. It should be as significant as when an Olympic gold medal arrives home and we celebrate together as a nation. In this, to be clear, I mean we treat the possibility of donation with tenderness and care, but we also must understand how rare and precious an actual match is.

When someone wins a gold medal, we reminisce on where the person started, like in the case of the phenomenal Kellie Harrington, whose wall mural I pass on the way to dialysis three times a week. We think about what they have overcome and how they continue to learn and lean in on their homeplace while conquering outwards. Looking inward, we can say: somehow, because I know this story, and even if only for one single moment it feels relative to a place in which I’ve stood, I can claim it. Maybe I can be it in my own life. Community and transplant – the death-defying miracle that is tough, terrific and tremendously tender, is just like this. And we must honour our donors and celebrate their lives and the lives they save.

[ Orla Tinsley: Returning to Covid-19 Ireland after my lung transplant ]

Some people are born knowing they will eventually need a transplant. Others, whether health-obsessed fitness fanatics or exercise-adverse adventurers, it doesn’t matter: at some point, we will all need support and all we have is each other. All we can control as a nation is that we give our country, and ourselves, the best shot at supporting those who need this right now, that we future-proof the possibilities and build a system that celebrates the miracle.

A legacy we can leave for generations to come and be proud of.

Is Ireland ready to become a nation of organ donors?

Listen | 20:47

In 2017, Orla Tinsley’s life was saved when she received a double lung transplant at the age of 31. Today, she is awaiting a kidney transplant and must undergo dialysis treatment three times a week. An activist for cystic fibrosis and organ donation, Tinsley has campaigned for the Dáil to pass the Human Tissue Bill, which would introduce a 'soft' opt-out system for all adults in the country. In this episode, she speaks to Bernice Harrison about the miracle of organ donation and why she believes the laws around organ donation need to be changed. Produced by Suzanne Brennan, with vox pops from Katie Mellett.