‘Everything I do in life, I do it for my donor’: Inside Aotearoa’s struggling organ donation system
We don’t have enough organ donors in New Zealand. The Spinoff investigates the problem – and how we might fix it.
At Dunedin Airport, passengers are boarding a small turboprop plane. The clock is ticking and they are in a hurry to get back to Auckland. Carefully, they slide three chilly bins to the back of the aircraft, buckle up their seat belts, and prepare for take off.
Inside the chilly bins, triple-bagged for sterility, are organs nestled on ice. Organs deteriorate quickly, like milk, and the donor surgical team onboard must move fast. As the plane traverses up the island, they continue to chase the clock. Tick, tick, tick. Ischemic time is critical; the time from when an organ has been cross-clamped in surgery, cutting blood supply, to when it is reconnected. The shorter the time, the better. And when the little turboprop touches down in Auckland, the chilly bins are whisked away to the hospital.
Jessica Manning had been waiting a year and a half for this phone call. “My heart fell out of my butt,” recalls Manning. “I just knew – nobody else would call me at 6.30 in the morning.”
“Jess, I think it’s your time,” the voice on the other end of the line said. It was her donor coordinator. Manning, who was born with multiple heart defects, and facing end-stage heart and liver disease at age 25, was being offered a new heart and liver.
“It was my only chance of survival,” Manning says. “When I say I was on my deathbed, I could not even walk to my letterbox without almost passing out.”
Nervous energy fizzed in the air. Suddenly, everything was happening, now. There were phone calls to family members – it was not guaranteed Manning would survive the surgery – and logistics to organise, as well as a race across Auckland to get to the hospital in 90 minutes.
Despite the 20-hour transplant surgery, followed by time in a coma and having to learn how to hold a pen again, Manning considers herself lucky.
But for Manning to be lucky, to receive a new heart and liver, she knows that somewhere, a family was grieving the loss of a loved one. This is the dichotomy of deceased organ donation: one family’s hope is another’s sadness.
Wikitoria Smith remembers a gentle touch on her elbow and someone asking her about organ donation. Her son Clifford, 36, had been in a bicycle accident and was on life support in Middlemore Hospital.
“At the time, nothing is making sense, but decisions have to be made,” Smith says. Her son, who she describes as a “colourful character” could be buried or cremated with his organs, but Smith felt that would be a shame when they could help others.
“For me, it wasn’t hard.” But that doesn’t mean it was easy. When she saw the hospital staff in their scrubs, that’s when she knew. “My defences started to crumble,” Smith says. She remembers watching the trolley her son was on being rolled away, and the sound, “clank, clank, clank”, of a misbehaving wheel. “I wanted to run out there and scream.”
Neither of these stories are connected. They happened over different years, and the deceased donor system in New Zealand is, by law, anonymous. But both of them provide a keyhole glimpse into the organ donation system in New Zealand; one which is full of life-saving success stories but which is also under strain. Put simply, we do not have enough donors in New Zealand.
Right now, about 400-500 people are on the organ transplant waiting list. It fluctuates as people are added and come off the list. There are two ways a person can receive an organ. One way is through deceased donation. This is only possible when the donor is on a ventilator in an intensive care unit (ICU), usually with severe brain damage. Less than 1% of all deaths happen this way. Deceased donors can donate heart, lungs, pancreas, liver and kidneys. They can also donate tissue, including eye tissue to restore sight, heart valves which are often used to save the lives of babies and young children, and skin for people with severe burns.
The other option for organ donation is a living donor, but this only applies to kidneys and livers. In this instance the donor usually, but not always, knows the recipient.
In 2022, 63 people were deceased organ donors in Aotearoa, and there were 71 living donors. This is middle-of-the-road when compared to other countries: not terrible, but not great. Globally, Spain is the frontrunner for deceased donations. It’s been that way for years, and the Spaniards are proud of it. There has been a long-term commitment from the Spanish government to support the programme. This includes funding comprehensive training for healthcare workers involved in organ donation and transplantation, with a focus on communication skills and family consent, this in turn has helped nurture public trust in the system. Despite already being top of the table, the Spanish programme has a culture of innovation and continuous improvement. And it works, in 2023 Spain transplanted 5851 organs, a remarkable 9% increase from the previous year.
Spain also has an opt-out system, meaning that, in theory, all citizens are automatically considered donors unless they choose to opt out. In practice, Spain will only seek donations if families approve. In recent years, other countries have joined the ranks of opt-out, including the United Kingdom, Switzerland, the Netherlands, Greece, and Iceland. Opt-out countries tend to have higher rates of organ donation, but the research is mixed as to whether the opt-out system itself helps to increase donation rates, or if other factors are at play, such as the increased public awareness that opt-out systems create and the increased funding that often comes with them.
“I think anywhere you have seen an increase in [donor] rates is because of good funding,” says Sue Garland, who is team leader of donor coordination for Organ Donation New Zealand. “Australia is an amazing example of that.” Australia introduced a new national strategy to increase donor rates in 2008, coupled with $151 million over four years. The money was spread across a number of initiatives, including specialist staffing needs, extra hospital beds, and establishing a national authority to coordinate organ donations. It paid off: from 2009 to 2019, Australia’s deceased organ donor rate more than doubled from 247 to 548.
Here in New Zealand, in 2017, the Ministry of Health published a national strategy to increase deceased organ donation and transplantation rates. Priorities included increasing training for clinicians, building public awareness, registering and sharing donation intentions, and increasing hospital-based capacity. The strategy was praised from across the political spectrum, but by 2021 non-profit organisation Kidney Health New Zealand said the government was “asleep at the wheel” rolling out its own strategy due to a lack of funding. Last year the Labour government allocated $12 million from the budget spread over four years to Organ Donation New Zealand to implement the strategy.
“There’s no one easy fix, but definitely money helps,” says Garland diplomatically.
Marcella Russell is 76, funny, of Irish heritage and a staunch Catholic. Born with a heart condition, she received a heart transplant in her 50s. Without it, she would be dead. Instead, at 70, she was canoeing down the Whanganui River with old friends and family. She had never rowed in a Canadian canoe before, and Russell recalls the memory of being perched in the boat as the owner pushed her out into the flowing current, calling out to her, “I’ll see you in three days!” “It was a bit terrifying,” she says, chuckling.
Russell writes to the donor’s family once a year at Christmas telling them what she has been up to. It’s done anonymously, with Organ Donation New Zealand acting as an intermediary. She doesn’t share exact details of herself, but includes photos from a distance, such as walking along a beach.
When Russell learned her deceased donor was a young man, she felt as if she had been “punched in the gut”. She had young adult sons of her own and couldn’t imagine the grief her donor’s family must feel. Russell eats well and exercises regularly. “I really care for that heart. I know how valuable it was for that family.” A fan of rock music, Russell was at a Guns N’ Roses concert a few years ago, when she thought to herself, “I’ll buy a T-shirt for my donor family.” The father wrote back to her. Guns N’ Roses was his son’s favourite band. In fact, the son had named his young daughter Rose. “I was so glad I did that,” Russell says.
Coincidentally, while I am researching this story, I need to renew my driver licence. For many of us, this is the only time we are explicitly asked about organ donation. Upstairs inside the local AA office, I fill in the licence paperwork, stalling on question five. Would you be willing to donate organs in the event of your death? It’s a simple yes or no. Actually, the option to tick ‘no’ is before ‘yes’. I look around for a pamphlet, a poster, some kind of information, but there is none. The two staff members are busy. Underneath the question is written: If you answer ‘yes’, in the event of your death your next-of-kin will be asked for their agreement to donate organs. Please let them know of your wishes. I bite the end of the ballpoint pen, question five, no or yes?
“We don’t have a [donor] register in New Zealand, we’ve talked about having a register but we haven’t had the funding for it,” says Garland from Organ Donation New Zealand. The driver licence record isn’t a register: ticking “donor” is simply a statement of your intent, not your consent. Adding to this, in the depths of a Ministry of Health report, I read that the driver licence record is not routinely accessed by clinicians in ICUs when discussing organ donation with a family.
Dr Joanne Ritchie, who is the national clinical lead (and Garland’s colleague) at Organ Donation New Zealand, says the issue is complex. “People tick yes or no for all sorts of reasons.” Someone might tick “no” thinking they’re too old for their organs to be of any use, or because they think smoking or drinking alcohol might stop them being a donor, she says. And what happens if you want to donate kidneys and lungs, but not heart and corneas? There’s nowhere to lay out these preferences. “It’s very binary,” Dr Ritchie says of the driver licence record. “It’s not informed consent … that’s one reason we don’t rely on it. The second reason is that it’s very difficult to get that information.” Sourcing driver licence details from the New Zealand Transport Agency takes time, particularly after working hours, when a lot of donation work occurs.
Dr Ritchie says it’s important ICU teams recognise every opportunity for organ donation, and every family has organ donation discussed with them when appropriate. A lot of work has been done in some countries for this to occur but in New Zealand some ICUs may not always see it as possible due to resourcing, she says. “We want to try and make it as easy as possible for them, and a lot of it boils down to resources.” New Zealand has a low number of ICU beds compared to other countries: just 4.6 beds per 100,000 people. Both Australia, the UK and Spain have more than double that.
If your family already knows your wishes, it makes it easier for them to make a decision while they are grieving, says Dr Ritchie.
I phone my mum and ask her, “Would you donate my organs, if I died?” There’s a long, considered pause. “I’m not sure, you haven’t made any wishes clear to me,” she says.
There are few groups of people, religious, ethnic, or otherwise, that collectively refuse organ donation. Across most religions, organ donation is viewed as an act of charity to another human. From the Amish to Judaism, support is widespread. In New Zealand, the idea that Māori don’t donate is a myth. There is no single Māori or Pacific view about organ donation and transplantation.
A report by Mauri Ora Associates Limited into Māori and Pacific attitudes towards transplantation found that, “Individual circumstances influence decisions as much as cultural beliefs do.”
Wikitoria Smith, who donated her son’s organs, grew up with her elders learning their stories and tikanga, understanding the body is sacred. But Smith had also seen “the other side” – one of her aunts needed a heart transplant. There are many forms of koha besides money, she says. “I think one of the greatest gifts of koha is the gift of life to others.”
Organ donation is a system. There is paperwork and processes, laws and strategy documents. But at its core, are deeply personal stories that shape perspectives.
When Lynnette Rowan’s mum passed away, and the family was asked if they would like to donate her organs, Rowan’s father declined. Although her mother had wanted to be an organ donor, Rowan respected her father’s decision. Her mother had experienced multiple brain haemorrhages over the years and her father felt she was now at peace.
Rowan felt the decision “was fine” – right up until she needed an organ herself. “It makes me feel like a bit of a hypocrite,” she says of her father’s decision.
Rowan was raising five grandsons when she underwent “clamshell” surgery, waking up with two new lungs. “She was a young Māori girl, that’s all I know,” Rowan says of her donor. “I was really quite shocked that they actually did transplants on people who had smoked. I hadn’t had a cigarette for 12 years at the time, it’s 20 years now.”
Rowan worries about young kids smoking and vaping, so she takes her old charcoal-coloured lungs into schools and educates students. “I’ve been downtown and kids have come up to me and said, ‘Oh miss, you talked to us, and I’m never going to smoke’. And that’s my goal. I think that for me, because I smoked, I owe it to the community.”
Rowan is adamant now about her own wishes. “I’m definitely a donor.”
Personal experiences can impact us all. Remember that $151 million Australia pumped into increasing organ donation rates? The person behind that was former Australian Prime Minister Kevin Rudd. He became an advocate after having a heart valve replaced when he was 32.
The first successful organ transplant was a kidney in 1954, and today kidneys make up the bulk of transplants. Kidneys are a powerhouse organ, filtering waste, regulating blood pressure, and balancing the body’s fluids, amongst other tasks. And you only need one of them, meaning people can donate a kidney while living.
Wellington transplant surgeon and urologist Dr Andrew Kennedy-Smith says it can be hard for people to pluck up the courage to ask someone for a kidney. “I’m born in Zimbabwe, and I’m from South Africa, and the problem that is often pointed out to me is a matter of directness and how you approach things when you’re from a different culture,” he says. “I think in New Zealand we’re much more reticent and careful not to give offence, so that potentially means we’re less likely [to ask]. As a system, we need to facilitate that approach.”
Nobody asked Rachel Rouge for her kidney, but she gave one away anyway. Rouge was inspired by meeting Georgina Beyer, the trailblazing politician who died last year from kidney disease. Rouge says Beyer made policy decisions that positively affected her life, and on meeting Beyer, Rouge thought, “Oh, she just needs a kidney, and I’ve got two.”
Donating a kidney, Rouge would discover, was a bit more complex than that. Dr Kennedy-Smith says there are numerous medical tests to undergo; mostly physical but also psychological. “Everyone ponders you,” he says, for a year, maybe longer. In the end, Rouge’s kidney was an anonymous donation to the waitlist. “I would love to know what happened to that left kidney,” she muses. Would she do it again? “Yes, absolutely, 100 percent.”
Kidney transplants make financial sense. The New Zealand Institute of Economic Research calculates an average saving of $389,000 over six years for every patient on dialysis who receives a kidney transplant. Not to mention, an improved quality of life by getting off dialysis treatment. “They transition from being a patient to becoming a person again,” says Dr Kennedy-Smith.
Jason McGregor, 38, is on the list. Jason has an intellectual disability and I spoke with his mum Alma about Jason’s renal failure (unfortunately Alma is not a kidney match). Jason was donated a kidney by a family friend some years back. It worked fabulously for five years, says Alma, and they were able to travel to the United States. But by 2012 the kidney failed and Jason is back on the transplant list, and receiving dialysis treatment for six hours a day, three times a week. When he isn’t having dialysis, Jason works at Cargill Enterprises and participates in golf and tenpin bowling for the Special Olympics. Alma hopes for another kidney transplant to give Jason’s body a rest from dialysis, but for now they try to make the most of the good days.
Merryn Jones, National Clinical Manager for Kidney Health New Zealand, says organ transplant inequity disproportionately impacts Māori and Pasifika. In 2019 the proportion of non-Māori/non-Pasifika dialysis patients who received a kidney transplant was 3.5 times higher than Māori dialysis patients, and four times higher than Pasifika. Studies suggest that an unfair health system and racism is contributing to this inequity.
Improving transplant equity requires improving health system equity, says Jones. This includes access to GPs, where prevention work is critical, and more screening in at-risk communities. It doesn’t help that kidney disease is ‘silent’, says Jones. Unlike cancer where you might lose weight, discover a lump, or become sick, kidney disease doesn’t have obvious signs. Cancer gets a lot of air time, she says. But what about diabetes or kidney disease? “Where are the public health campaigns, the billboards?”
There is a worldwide shortage of organ donations, and it’s being looked at through different lenses around the globe. In Czechia, the family of a deceased donor can apply for a contribution towards funeral costs. In the United States, there is a programme that gives kidney donors a priority voucher in case they or their family need a kidney in the future. Some advocates in the United States would like to see non-cash payments for living donors, for example, a payment of $50,000 in the form of tax-credit spread over 10 years. In New Zealand there’s no payment for donating a kidney, however since 2017 living donors are compensated for lost earnings during their recovery period.
But there’s something else looming large: gened-edited pigs. In 2022, American man David Bennett became the world’s first person to receive a pig-to-human heart transplant. He died two months later.
Xenotransplantation (cross-species transplantation) sounds futuristic, but actually has a long, if somewhat peculiar, history. In the 1600s Jean-Baptiste Denys attempted blood transfusions from animals to humans and in 1838 the first corneal transplant from a pig to a human took place. In the 1920s, slices of chimp testis were sewn into aged men’s testicles in the hope it would reverse ageing and add “zest for life”. It was popular with wealthy men, up until it was proven not to work. In 1964 a chimpanzee heart was transplanted into a human, beating on its own for 90 minutes. It raised ethical, legal, moral, and religious questions and public backlash was fierce.
These days pigs are the preferred animal for xenotransplantation, not only because they have similar sized organs to humans, and are easy to breed, but because, unlike primates, we already kill pigs for food. This perhaps makes it easier for society to accept, although animal rights activists staunchly disagree with the practice. There are also differing views within religions about the use of a pig’s organs. Dr. Muhammad Mohiuddin, a Muslim physician involved in Bennett’s pig-to-human heart surgery, encountered opposition from his own family.
Nearly 20 years ago, New Zealand’s Bioethics Council wrote that xenotransplantation would require us to confront our fundamental cultural, ethical and spiritual beliefs about what it means to be human, and about our relationships with other people, nature and other species.
When the first human-to-human heart transplant took place in South Africa in 1967, ethical questions were raised, and now human organ transplants are well accepted and valued by society. Our moral standpoints can shift over time. It also depends on whose shoes you are standing in.
Dr Kennedy-Smith thinks pig organ transplants will happen in New Zealand during his professional career. He’s a vegetarian at home, but can’t wait.
Manning makes TikTok videos using her old heart to educate people about heart disease. It’s a dichotomy, again: yes there are her scars, and yes she is holding up her old heart on screen, but Manning looks so… healthy. Her long dark hair shines, and she wears a pink floaty dress. So very far away from six years ago, when her old heart was “not really beating … kind of like hiccups” and her lips were purple from lack of oxygen. She talks about her future, about her work as a school teacher. One day she will bury her old heart under a tree.
Despite the problems – the lack of funding, transplant inequity, and low number of ICU beds – lives continue to be saved through organ donation. It’s because of people like Wikitoria Smith, who made a decision in the midst of her grief to help others. And Rachel Rouge, who wanted to contribute to “something that’s larger than myself” and give a kidney.
It’s because of the donor surgical teams who fly across New Zealand working against the clock, and all the others working to support transplantation and post-operative care. They give a second chance to people like Marcella Russell, who wants “everyone to know how appreciated it is”, and Lynnette Rowan, who messaged me later to say, “could you please add that I am forever grateful.” Jessica Manning, too: “Everything I do in life, I don’t do it for myself, I do it for my donor.”
But right now, there are still people waiting. People like Jason, and his mum Alma, hoping for a kidney. “You’ve just got to be positive and carry on,” says Alma. “One day, hopefully, Jason will get another transplant.”
Inside the AA office, I finished filling in my driver licence form, decision made. I call my mum and tell her my decision. “We should really have this conversation with the rest of the family too,” she says. Yes, we really should.