HEALTH ADVOCATES FEAR that legislation providing for soft opt-out organ donation in Ireland could be left off the government’s agenda – after it failed to sign off on it this week.
They say that attempts at bringing in the legislation began over a decade ago, and that they are frustrated at how long it’s taking Ireland compared to our neighbours in the UK.
Health Minister Stephen Donnelly said last December that the legislation would be brought to Cabinet early in 2022. It was then anticipated that it could get signed off before the Dáil took its summer break this month. However, that did not occur and it looks like it won’t be signed off now until September. Health advocates fear the delay might stretch out even longer than that.
The aim of the legislation is to make more organs available for donation. This is particularly important, say advocates, given the impact of Covid on the number of transplants taking place.
The Irish Kidney Association (IKA) told The Journal this week that the number of organ transplants carried out in Ireland has been adversely affected by the pandemic.
Its Chief Executive Carol Moore said: “People waiting on transplants live in hope. But they are also acutely aware that another family must experience death for their lives to be transformed.”
As well as the burden of dialysis treatment for kidney patients waiting for transplants and its impact on their physical health, there is a substantial psychological impact also.
Philip Watt, CEO of Cystic Fibrosis Ireland and the Irish Donor Network, also told The Journal: “There has been a massive drop in transplantations compared with before Covid.”
“And the indications are that other countries are recovering quite well but Ireland is still lagging behind really.”
In 2021, 203 transplants took place across Ireland’s three transplant centres, preceded in 2020 by 190 transplants. Pre-pandemic, there were 249 total transplants in 2019, 231 in 2018 and a record 308 in 2017, according to organdonation.ie.
The five-year average from 2015 – 2019 was 284 transplants.
In 2021, the figure included 64 deceased donors, and in 2020 it included 62 deceased donors – compared to the 5-year average of 85 deceased donors in the years from 2014 – 2019.
Soft opt-out organ donation, planned for Ireland, means that people would have to legally opt out of organ donation – if they don’t, they consent to organ donation in the case of their death. Their next of kin would still have to give permission for the donation to take place.
In the case of hard opt-out donation, the next of kin would not have to give permission, but this is not being planned for Ireland.
In Northern Ireland, opt-out legislation was given the go-ahead in February. It’s been called Dáithí’s Law after a five year old, Dáithí MacGabhann, who is awaiting a heart transplant.
It follows from opt-out legislation being introduced in England in May 2020. Over in Wales, legislation was brought in in 2015. Scotland followed in 2016.
In Wales, a government document compiled studies into opt-out organ donation, and found that the strands of evidence provided a “convincing basis” for the introduction of a system there, but there were no guarantees the change would result in increased organ donation rates.
In 2021, Phil Walton, the Project Lead for Deemed Consent [opt-out] Legislation with the NHS Blood and Transplant Division told a Harvard Law health reporter that a study was published on the progress of consent in Wales during the first three years following the legislation.
He explained:
The study found a statistically significant increase (10% or more) in consent for Donors after Brain Death (DBD) in Wales compared to England (which, at the time was an opt-in country).
Opt-out consent might not suit all countries, experts say. In the same article, Alexandra Glazier, the President/CEO of the New England Donor Services, pointed out that the US is second only to Spain for donation, despite having an opt-in system. She said part of this is cultural, as “Americans simply don’t want the government deciding to take their organs without asking”.
Those advocating for people on the transplant list in Ireland hope that the change would result in an increase in organ donation, particularly given the impact of Covid-19.
In an Ipsos MRBI survey in 2015, 85% of Irish people surveyed said they were willing to donate an organ from a deceased close family member. Of those unwilling, 14% were scared of the manipulation of the human body, 11% had a distrust in the system, 5% would not speak for a family member if they didn’t know their decision, and 3% would not donate for religious reasons.
Human Tissue Bill
The legislation that would provide for opt-out organ donation in Ireland is contained in the Human Tissue Bill. The details of the Bill were published by the then-Health Minister Simon Harris in 2019. It followed on from a Private Members Bill on the issue, which was introduced in 2008 by the late senator Fergal Quinn.
The Human Tissue Bill would also provide for non-directed altruistic kidney donation (donating a kidney to a person the patient does not already know). The IKA pointed out that delays in the enactment of the Bill means that those who want to be considered for altruistic kidney donation have to travel to Northern Ireland.
The Bill also covers the conditions around the removal, retention, storage, use and disposal of human tissue and organs, and has provisions for the public display of bodies after death.
Pressure increased on the government to bring in the legislation last year after RTÉ revealed the organs of 18 babies were sent to Belgium for incineration along with clinical waste, without their parents’ knowledge or consent.
A follow-up report by RTÉ Investigates earlier this month found that organs were sent for incineration at some hospitals around the country. The details were discovered during a national HSE internal audit.
In June of this year, the government was told it must publish the Human Tissue Bill before the end of the Dáil term this month, the Irish Examiner reported.
But in mid-July, an Oireachtas committee was told the Bill was still being finalised.
In December 2021, Health Minister Donnelly said that the legislation would be brought to Cabinet early in the new year of 2022, the Irish Times reported at the time.
As the summer break for the Dáil approached, The Journal contacted the Department of Health to ask if the Bill was due to be signed off.
It sent a statement which said:
Officials in the Department continue to work on the Human Tissue (Transplant, Post-Mortem, Anatomical Examination and Public Display) Bill, which has been brought to an advanced stage with a view to publishing it as soon as it is possible to do so.
Meanwhile, last week the Taoiseach said the Human Tissue Bill needs to be published, adding that he spoke to the Minister of Health and also to the Attorney General. He was speaking in the context of the HSE internal audit on incineration of organs.
“I made it clear I want that legislation published in September,” he said.
He added that it will be “all hands on deck now to get this done once and for all”.
‘Long overdue’
The Irish Kidney Association (IKA) said it has concerns about the delay in progressing the Human Tissue Bill “as it is inhibiting meaningful change in anticipation of the legislation being enacted”.
The IKA added that a culture of organ donation amongst the general population should be encouraged.
However, we must not forget about resourcing our health service to ensure that it too can foster a culture of organ donation from within. Successive governments have been promising to legislate for organ donation for 14 years.
The IKA said its position is that legislation in this area “is long overdue” but any legislation must be underpinned by appropriate resourcing in order for it to have an impact.
It said that not only is the legislation needed to be passed as soon as possible, it also needs need a commitment from government that its goals will be underpinned by adequate resourcing to ensure the following:
The IKA said it believes that in order to maximise organ donation in Ireland there needs to be an “understanding of the limiting factors in the past” and there needs to be an annual audit of potential organ donors.
‘Evidence shows it works’
Philip Watt, CEO of Cystic Fibrosis Ireland and chairperson at the Irish Donor Network, told The Journal: “It’s really disappointing it’s been delayed. It’s been promised in the last three programmes for government.”
He said CFI understands that it is not the opt-out section of the legislation that is delaying the Bill, and because of this he has asked the Health Minister to separate those parts out from the rest of the legislation.
He said that if other aspects are delaying the legislation, then the organ donation consent section should be prioritised.
There is a worry that with this latest delay the Bill will fall off the legislative programme again, said Watt.
“We are languishing well behind best practice in Europe on this,” he said.
It’s very worrying that the transplant waiting list grows longer and longer.
Due to the pandemic, people couldn’t get in to hospital to be assessed during lockdowns, he explained, which slowed things down in terms of people being put on the transplant list.
But he added: “I think that we’re now in a largely post-Covid world and it seems that the systems in other countries have bounced back, whereas ours have languished behind.”
New transplant figures are expected at the end of the year, but the most recent figures “compare very poorly with pre-Covid”, he said. “It’s very worrying.”
In Ireland, 80% of people say they want to donate their organs, according to opinion surveys, said Watt.
He noted that for every person who dies in a road accident, for example, potentially they can donate seven organs for transplantation. “It’s so important that we maximise that potential if someone has an organ to donate,” he says. He added that it is incredible to see the quality of life of people who do receive organ transplants.
“For some reason it seems that health legislation seems to be very slow – without blaming any minister in particular, a lot of it seems to fall off the legislative programme,” added Watt. “It’s unclear why that is the case but I just feel so sorry for people who are on the transplant waiting list.”
The question is – are we maximising the use of the organs that are available for transplantation? I would say no. It’s not just about organ donation consent, it’s about resources for people to counsel families and that kind of thing.
He added that there is a “real need” for a public awareness campaign on organ donation.
“The evidence from our nearest neighbours shows this works,” he said of opt-out organ donation.
While the Covid-19 pandemic had an impact on transplant numbers, it did mean that there were lessons learned from the lockdown’s impact. The IKA said in its 2021 appraisal that Beaumont Hospital has put in place a robust Covid-19 secure pathway for kidney transplantation to continue, after it had to suspend the programme between March and May 2020.
The ODTI and the IKA have also called for organ donation and transplantation to be recognised “as important life giving/saving services that must not be compromised by outside forces”.
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