Andy Tookey still remembers the moment he had a choice: to keep going forward as a very squeaky wheel about changing New Zealand’s organ donation system, or do as was being subtly suggested, and for the sake of his daughter, park up somewhere quietly.
“I took a step back for about a week, and then thought ‘hell, no’.”
It’s been 15 years since Andy and his wife, Janice, were told their then six week old Katie had biliary atresia and probably wouldn’t live past her first birthday if she didn’t have a liver transplant.
While trying to process the information about his daughter’s rare liver disease, Andy found it even more confusing trying to work out how organ donation worked. “I discovered that even if you list donor on your driver’s licence, it doesn’t make any difference.”
He set up givelife.org.nz to campaign for a more effective organ donor system. He thought it would be simple. It turned out to be anything but.
Last year in New Zealand, there were 541 people on waiting lists for organ transplants. There were just 61 donors. While the figure is slowly climbing year on year, which
Organ Donation New Zealand attributes to ongoing quality improvement programmes in hospital intensive care units, New Zealand’s donor figures pale in comparison to those in countries like Wales, France, and Spain.
In these countries the organ donor system runs by deemed consent: you are regarded as an organ donor unless you opt out on a national register. When Belgium changed to an opt out system, its donor rate went up 183%.
Andy explains that the problem in New Zealand is that once a person dies their family can override their wishes.
“It wouldn’t even matter if you had ‘donor’ tattooed on your heart.”
While Andy is still slightly incredulous that his mission has turned into a 15-year battle, he’s not giving up.
“I just pick my fights now,” he says.
More than anything he wants to change the narrative around talking to a deceased person’s family about donating their loved one’s organs. He says six out of ten families say no to organ donation.
“It doesn’t matter how much you spend on creating link nurses or training health professionals to be aware of how end-of-life processes jeopardise organ retrieval, how many protocols you write, or how many reviews you do, if just one family member says no, that’s it.”
“I’d like to see the donor’s wishes honoured over and above those of family members. I’d like to find out why people say no.”
He’s not scared to ask either. He faced death threats after challenging some of the cultural norms that stop organs being removed from a body.
“People are quite happy to take body parts if they need them, but they don’t want to give them,” he says.
It’s the same argument he has for drivers. Around 46% of the 3.5 million licensed drivers in New Zealand have ticked ‘no’ in the donor box on their licence. “I bet if those people ever needed an organ, they would say yes if they were offered one.”
Andy would like more surveys to find out why people tick the ‘no’ box. That way he believes the government can direct resources straight to the problem. “People still don’t realise that even if you’ve told your family you want to donate, they can still override your wishes once you are dead.”
His approach hasn’t made him popular, and few in the organ donation field will work with him. “We have different ideas,” he says, resigned to the fact that he is actively disliked by medical professionals. “But it is frustrating because my argument is really just about autonomy.”
While Katie continues to defy the odds – she turns 16 this year – Andy is wistful: “I wasted so many years worrying about her dying.” But he doesn’t regret the fight, or the personal financial cost.
Givelife is not used for fundraising, he says. “I don’t want money. I want public awareness.”
Andy believes he has made a difference over the last 15 years and he has no plans to stop. “After all,” he says, “there are only three things you can do with your organs after you die: bury them, cremate them, or save lives with them.”
Mike Noon, General Manager of AA Motoring Affairs, concedes it's a sensitive issue, but one that the AA will be looking at more closely.
“Organ donation has the potential to give life out of death and Andy Tookey challenges us all to think about whether the system in New Zealand needs to change; because the stakes couldn’t be higher for those in need.”
Reported by Kim Triegaardt for our AA Directions Winter 2017 issue