New Zealand has one of the lowest deceased organ donation rates in the developed world as more people need help. Some are calling for incentives to get people to donate - and even for legal trading of body parts. Matthew Theunissen of APNZ reports.
Arthur Sanston wishes that when his 18-year-old brother Richard was fatally wounded in a plane crash his family had considered donating his organs so one of the hundreds of people needing transplants in New Zealand could have had another chance at life.
Richard, who died in 1980, was one of the few people that die in New Zealand each year who are suitable to be deceased organ donors: he was fit, healthy and his injuries resulted in brain death while the rest of his body was unscathed, so he could be kept alive - albeit briefly - on a ventilator.
But doctors never asked his family whether they wanted to donate his organs, nor was it a discussion they'd ever had.
Eight years later, the issue was put into perspective for Mr Sanston when he was told his own kidney was failing and he would require a transplant.
"Hindsight's a wonderful thing but we didn't know what the issues were at that time. Now, in my own view, I wish we had talked about it. I mean, the guy who I got my kidney from, his family had to make that decision and I'm so grateful that they did.
"It's an extraordinarily difficult situation because you've got a family of someone who's dying after a sudden accident, or a stroke, and having doctors asking if the organs can be donated is not easy to deal with."
When his kidney went into end-stage renal failure in 2002, Mr Sanston was on dialysis for two years, at a cost of between $50,000 and $60,000 a year, before a suitable donor became available.
"I've seen the film of the surgeons putting my kidney back in and the moment they connected it up it just changed colour and started producing urine, which is really exciting from the point of view of people like us. And literally within days from being very sick, people start to gain a bit of weight and their energy levels just go off the scale."
About 600 people are waiting for organ transplants in New Zealand, mostly for kidneys. Last year there were 57 live donors - mostly friends and family - but just 38 deceased donors, 36 of whom donated following brain death.
According to 2010 Organ Donation New Zealand figures, of 18 developed countries, only Greece and Mexico had lower deceased organ donation rates than New Zealand, which had 8.7 donors per one million people. Spain had the highest rate at 32.
It is not uncommon for people to wait more than five years for a transplant.
Latest figures from the Australia and New Zealand Dialysis and Transplant Registry show that in 2010, 319 people died in New Zealand while on dialysis. Most were waiting for a transplant.
The registry shows a rapid increase in the number of people requiring transplant closely associated with increases in diabetes and hypertension-related kidney disease, often a result of obesity.
Outspoken organ donor reform campaigner Andy Tookey has been scathing of Organ Donation New Zealand, the organisation which co-ordinates deceased organ donation in this country, due to what he sees as its "inflexible" approach.
"Ten years ago, when my daughter was born, I found out that she was going to need a liver transplant to survive. We were told that with a transplant she would have a 97 per cent chance of a normal life, which was a huge relief, but then I discovered we have the lowest organ donation rate in the world.
"I started researching it, sending out Official Information Act requests and so on, and and just opened up a whole can of worm about what a mess the system was in."
He says part of the reason rates are so low is the current system where people consent to be an organ donors on their driving licence does not provide enough information about how important it is.
"A lot of people will go to get their driving licence renewed during their lunch break from work. The last thing they're expecting is to be presented with such an important question like whether they'd be willing to give up their organs.
"If you added one further question to that driving licence form 'If you needed an organ in order to survive would you accept one? Yes or no', I can guarantee that 99 per cent of people would say yes. And then when they're asked whether they're willing to be an organ donor they can't very well say no."
Furthermore, he says even when a person has made it clear that they wish to donate their organs when they die, their families often veto that decision when faced with the grim reality of the situation.
"What I find hard to accept is that people could have a near 100 per cent chance of being cured if only they received an organ, but the cure is just being buried or cremated."
Mr Tookey says there needs to be incentives to encourage people to donate organs, such as tax breaks or covering the cost of funerals.
"Just about everybody is getting a funeral grant from the Government - anyone who dies in an accident from ACC, and beneficiaries - but not organ donors, the very people who are saving the health system millions of dollars. It's bizarre."
Organ Donation New Zealand is opposed to any sort of incentivisation for donations.
Chief executive Janice Langlands says there is a risk people would not respect the wishes of their dying family members if they thought they could benefit from it.
"If your mother didn't want to be a donor but if you knew that by saying yes to donation you would get a lot of the funeral costs covered then you might not necessary respect her wishes."
Ms Langlands says families are generally very generous about donating organs, especially if they think it will mean something good can come from their tragedy.
In her thesis, Canterbury University masters student Rachel Walsh explores the possibility of legalising the trade in body organs, which she says has been very successful in Iran.
"They've completely eliminated the wait list and they're the only country in the world to do so," she says.
"Throughout the research it's quite clear that everybody gets paid throughout the whole transplant process, except donors. It sounds terrible but if there is an incentive there people are more likely to donate. In the current system there is a WINZ provision for people who donate to cover lost wages, but its very minimal, it's not enough."
Ms Walsh says there is no risk of people becoming organ donors in order to benefit financially, as still happens in third world countries like India and Pakistan, where black-market "transplant tourism" is rampant.
"If you actually understand the organ donation process and the psychological and psychosocial evaluations you have to go through which leads up to a transplant, it takes a minimum of nine months so nobody in their right mind would go through all of that just for an incentive at the end.
"Those tests do pick up on people who may have underlying mental illness, or who may have that sort of martyr personality where they're doing it for the wrong reasons. So, having said that, what is wrong in having an incentive?"
National MP Michael Woodhouse's Financial Assistance For Live Organ Donors Bill, which is currently in the members ballot, aims to increase the support for donors from the equivalent of the sickness benefit to the equivalent of 80 per cent of the donor's pre-operation earnings - the same formula applied to income support for ACC recipients.
Ms Walsh says another area where New Zealand is lagging behind other developed nations is in the training of medical professionals about speaking to bereaved families about organ donation.
"Spain has the highest rates of deceased donation in the world and there's been a lot of research which has found that this is because of the training the staff have in the ICU wards and the approach they take towards the families of people who are on life support.
"For example, there were 10 British people killed in Spain over the course of a year and every family said yes to donating their organs, but in the UK the rates are far, far lower."
Organ Donation New Zealand was recently given $2 million by the Government to try to utilise all opportunities for deceased organ donation, including staff training.
But Ms Walsh says the most important thing of all is for families to get together and discuss organ donation.
"If they just talked about it we would save lives every year in this country, no doubt."
