KEY POINTS:
When Mary England learned she needed a new kidney, she thought she would have to wait a year. But it was five years before she received her transplant, last March.
"I had a live donor lined up, then I got a call on Mother's Day, at 5am: 'We've got a kidney for you, from a cadaver."
Now England, an Auckland sports merchandiser, is on the slow, hard path to full recovery.
Her wait is not unusual. About 570 people in New Zealand are waiting for a kidney, and a further 38 waiting for other organs. Last year, there were only 38 dead donors, who furnished organs for 129 transplants.
And the shortfall is set to worsen with obesity-related diabetes on the rise, longer life expectancy and improved emergency medicine reducing the pool of dead donors.
This carries immense financial and social costs. Dialysis costs about $60,000 a year a patient; the cost of a kidney transplant is about the same as a year of dialysis. And the outcome for transplants deteriorates for every year spent on dialysis.
England and three other women founded the Organ Donation Awareness Trust (www.organawareness.co.nz) to help demystify organ donation. What many people don't realise, says England, is that indicating you want to be a deceased donor on your driver's licence doesn't carry any legal weight.
A new law, expected to be passed by the end of the year, puts the decision squarely in the hands of the dead person's immediate family.
In practice, that's what already happens, says donor co-ordinator Janice Langlands. Emergency doctors don't stop to check driver's licences, nor will they wrestle a body away from distraught family members who are opposed to donation.
The new law, the Human Tissue Act 2008, cements a family's rights to veto donation, regardless of the dead person's expressed wishes.
However, says Langlands, it's very rare that families over-ride the wishes of their loved ones. And even families split over the issue usually come to a decision.
If you want to be a deceased donor, says Langlands, the best thing to do is to talk it over with your family.
"In reality, they're the ones who have to live with that decision."
Health campaigner Andy Tookey has lobbied for a binding national register of deceased donors to be implemented. His efforts were stymied when a bill to that effect by National MP Dr Jackie Blue was thrown out in favour of the new law.
Health professionals argue a binding register wouldn't directly raise the donor rate, and the money would be better spent on public education.
Now Tookey wants the Government to pay for dead donors' funeral costs, as medical schools do already. "A lot of people might sign up to be a donor if they think it might ease the financial burden on their family at their death."
Medical experts believe most of the future growth in donors, though, will come from live donors such as Alex Milne.
Here and overseas, a debate churns over whether governments should pay live donors as an incentive. In May, an Australian doctor rocked the medical establishment by arguing young, healthy Australians should be allowed to sell their kidneys for A$50,000 ($60,000) to the Government, which could pass them on to sick patients.
In Auckland transplant surgeon Stephen Munn advocates that the Government pays live donors a more moderate amount, about $10,000, to cover costs and provide an incentive. "You'd only have to give a little bit to tip the balance."
