Kidney for sale: One careful owner

by Mike White / 01 December, 2013
 

Hundreds of New Zealanders are dying each year for want of a kidney transplant. On Dec 1 2016 Parliament passed legislation allowing donors to be paid 100% of their earnings for up to 12 weeks while they recover. It's a step toward encouraging more people to consider organ donation.  A 2013 investigation by Mike White looked at why New Zealand's donation rates are so low, and what it would take to get that to change.

So here’s how it works. Your kidneys are crucial organs that filter your blood and remove the waste through urine. That’s about all you need to know – other than that if they stop working, you die. Pretty quickly. In about a week.

Each year hundreds of New Zealanders suffer irreversible kidney failure and have three options.

One, they go on dialysis, which generally means that several times a week they’re hooked up to a machine which artificially cleans their blood.

Secondly, they can look for a transplant – a kidney from either someone who’s just died, or someone who’s alive and donates one of their kidneys (most of us have two but only need one to function perfectly well).

The third option is that you die.

But here’s the kicker – even if you choose option one or two, there’s a fair chance you’re going to die anyway. That’s because dialysis can only keep you alive for so long – and because the demand for kidney transplants outstrips supply by more than 10 to one.

It’s a grim, grim story and one which worryingly, is only set to get much worse.

This is a story about why so many people are dying unnecessarily. And why, despite so much extraordinary work by health staff, we still apparently haven’t got to grips with this critical problem.

Pretty much everyone whose kidneys fail goes on dialysis. But it’s a holding game. It’s time-consuming, painful, expensive and extremely limiting.

However, as Wellington man Michael Papesch points out, “It keeps you alive.”

“Dialysis is shitty. Nobody enjoys it. And it’s a dead end option – you die on dialysis. It’s better than dying immediately but you still die early.”

Michael Papesch has a 30cm scar running from below his belly button around to his righthand side to remind him of the day he got off dialysis, thanks to his wife Paula Martin.

So most patients seek a kidney transplant, a reasonably common operation that’s been done in New Zealand for nearly 50 years.

Traditionally, the main source of such transplants has been people who’ve died in intensive care – often road accident or stroke victims. In recent years, however, more people have been receiving kidneys from living donors – family members, friends (remember Jonah Lomu who got a kidney from his mate Grant Kereama?), or strangers who want to give a patient one of their kidneys.

The big problem is, there just aren’t enough kidneys to go around.

More than 2500 New Zealanders are on dialysis. But each year we only do around 100 transplants, meaning most people on dialysis will die before they get a lifesaving transplant.

The number of people on dialysis is rising four to six per cent a year, largely due to obesity and diabetes, and better medical care; in 2000 there were 1335 people on dialysis but it’s nearly double that now. At the same time, our transplant rates have remained virtually static. In 1997 we did 112 kidney transplants. Fifteen years later in 2012 we only did 108. All this at a time when many comparable countries have markedly increased their transplant rates.

Our donation rate from deceased donors is particularly poor – about eight per million of population. Australia is nearly double that. Spain, Croatia and Belgium are over 30. Moreover, our rates are decreasing. Fifteen years ago there were 81 kidneys donated from deceased donors – last year there were only 54.

Our rate from live donors is slightly better but has steadily dropped from 16 per million in 2008 to 12 in 2012 and still lags internationally; the Netherlands by comparison is nearly 30. Consequently, only four per cent of dialysis patients in New Zealand receive a transplant each year.

All of which is cold statistical comfort for those sitting in a hospital unit or sitting on a waiting list, waiting for that miraculous phone call telling them a kidney has become available and their days on the slow dive of dialysis are almost over.

Michael Papesch has a nice, neat 30cm scar running from below his belly button around to his right-hand side to remind him of the day he got off dialysis.

Suffering from an auto-immune disease, the same type of condition as Jonah, he was 43 when his kidneys finally packed up in 2005 and he went on dialysis. If he’d stayed there, statistics suggested his life expectancy was six years. With a transplant it was 17.

For Papesch, the wait for a solution was mercifully short – his partner, Paula Martin, immediately offered him one of her kidneys. The week before the transplant operation he proposed to her. Within days of the operation Papesch says he was doing DIY jobs around their house and was back working at Treasury in four weeks.

Fellow Wellingtonian Dave Henderson says his life has changed markedly since he got a kidney from a deceased donor four years ago. “And markedly is an understatement. It’s a whole new lease on life.”

Henderson is adamant he would have been dead by now without his transplant as he’d been going downhill and ended up in a coma once.

But the benefits aren’t just personal for the recipients and their families. The cost of keeping someone on dialysis is about $30,000 to $70,000 a year. The national cost of dialysis is estimated at more than $150 million annually – about 1.5 per cent of our total health budget.

As the problem explodes, we’re spending vast sums on the ambulance at the bottom of the cliff – new dialysis centres. In 2011 a new dialysis unit in North Shore cost $9.2 million. The following year, one in Gisborne cost $1.2 million. An expanded unit in Porirua is costing nearly $5 million. Another in Waitemata will cost $3.6 million. And the list goes on.

By comparison, the cost of a transplant is about $50,000 but after that the patient’s medical costs drop below $10,000 a year. Thus, the savings for the taxpayer of getting people transplants are enormous. Not only that, recipients are so much healthier they usually return to work – paying taxes rather than being on a sickness benefit.

So why, when there are nothing but massive benefits to be gained, can’t we do more transplants?

Well, again, there aren’t enough kidneys being donated. When it comes to kidneys from deceased donors, despite almost 2 million New Zealanders indicating on their drivers’ licences they are willing to donate their organs, only a very few die in a way that allows this – being brain-dead but on a mechanical ventilator.

The service that oversees this area of transplantation is Organ Donation New Zealand and its medical specialist, James Judson, says only 1.2 per cent of those dying in public hospitals each year – about 125 – died in circumstances that meant they could be considered for organ donation.

When the family is approached about donating their loved one’s organs, they say no about half the time. (Despite someone indicating they are willing to be a donor, their family can override this and refuse donation.)

Judson says fewer road accidents and better medical care mean opportunities for organ donation are decreasing and thus, “You can’t automatically say it’s a bad thing that we’ve got so few donors.”

However, Michael Papesch, who is the consumer representative on the National Renal Advisory Board and on the board of Kidney Health New Zealand, says our deceased donor transplant rates are unacceptable – but people are unwilling to criticise Organ Donation NZ’s performance. He thinks this might be because clinicians rely on ODNZ for organs to transplant and, given the renal community is so small, doctors are uncomfortable challenging their colleagues.

One frequently raised concern is that ODNZ hasn’t sufficiently put organ donation on the public’s radar. This meant that often the first time people considered the issue was in hospital during the highly emotional moment of a loved one’s death.

ODNZ’s James Judson says while they carry out some education, they don’t believe mass public awareness campaigns would automatically lead to more transplants.

But the South Island kidney transplant programme’s director, Nick Cross, says in Australia, public awareness and education helped transplants rise 33 per cent in the first six months of 2013. “Unless we’re actually as a society confronting this, we’ll just have more and more people stacked up on the waiting list with no organs for them and more people dying.”

ODNZ, however, often appears reluctant to be part of this. When Radio New Zealand’s health correspondent, Karen Brown, approached them for input into a programme on organ donation, ODNZ refused to co-operate if she also spoke to campaigner Andy Tookey (who has previously criticised ODNZ), mentioned his name, or named his organisation. Brown wouldn’t accede to this demand and thus, in a rare opportunity to gain greater public awareness for a pressing problem, ODNZ remained silent.

So the 700 patients who’ve managed to get on our rationed kidney waiting list know that each year only about 50 of them will get a transplant from a deceased donor. That leaves them with only one other option – asking someone else to donate a kidney to them.

Dave Henderson, who chairs the independent patient group Kidney Health New Zealand, said when he went on dialysis he began raising the issue with friends and family. “In a group they’d say, ‘Oh yeah, yeah, yeah – one of us could donate.’ But when you speak to people quietly, individually, they say, ‘I’ve got too much going on in my life, or I couldn’t afford to take time off work, or I don’t want to put my family at risk.’

“And after a while you just stop asking.”

Papesch’s wife, Paula Martin, who gave him one of her kidneys, says she can’t think of any other medical area where patients essentially have to organise their own treatment. “Leaving it up to patients on their own to go out and find a donor without any support is a huge barrier and one of the reasons we only do 50 or so [live transplants] a year.”

Martin has just completed a PhD looking at how to increase kidney transplant rates from live donors and discovered financial issues are also clear obstacles.

Martin found one of the main things preventing patients approaching possible donors was the financial cost the donor would suffer by stopping work – on top of the physical impact. And even when people offered them kidneys, many patients told Martin they refused, because they didn’t want them to be out of pocket. When Dave Henderson asked one of his brothers if he’d consider being a donor, his brother said he simply couldn’t do it – the Work and Income benefit was less than his mortgage payments.

 

Martin, who spent many years managing Ministry of Health budgets, welcomes the $4 million government allocated to transplant initiatives last year. But she says kidney issues still receive very little support compared to other areas of health - despite the rapidly escalating cost.

“Our failure to pay any attention to this – to not even do quite modest things, not to treat this as a serious public policy issue, not to say people lives are being shortened and their quality of life greatly reduced, and we’re incurring a whole lot of costs we don’t need to – that’s an ethical and moral failure.”

Pakistani villagers show their scars after they each sold a kidney to pay off debts. Patients can pay up to $US100,000 for a kidney transplant in some countries.
The main reason the government has been so cautious about reimbursing donors fairly or fully is their fear it could encourage people to give up one of their kidneys.

This is because it’s widely held that any incentive offered to people donating their organs is morally wrong – the act should be altruistic and done for love not money.

Hence, we have the arguably irrational situation where we are urging people to donate kidneys because it’s a good thing, yet are putting hurdles in their way by leaving them out of pocket. And as many people point out, this approach confuses reimbursement of genuine costs with the more controversial issue of “incentivisation” or paying for kidneys.

In August “Phil”, from Putaruru, advertised one of his kidneys on Trade Me for $250,000, highlighting his rising cost of living. The auction was removed within hours because under New Zealand law, like most countries, it’s illegal to sell organs.

But for years, people have gone to countries like China, the Philippines, India and Egypt and paid between $US60,000 and $US100,000 for a transplant from someone who has sold their spare kidney. This “black market” hasn’t always had good outcomes – many patients have received substandard care and donors have received less than they were promised or had subsequent health complications. In China, organs from executed prisoners were used for transplants although this is being phased out.

In 2008 more than 150 doctors from around the world drew up the Declaration of Istanbul, strongly condemning any payment for organ transplants. Their fundamental tenet was that poor people were exploited and induced into selling a kidney for the benefit of rich people.

Auckland renal physician Ian Dittmer was part of the Istanbul Declaration and is adamant harm will be done if incentives are offered, with donors ending up worse off and still in poverty. “And I don’t think that 10 or 20 or $50,000 for someone giving a kidney is going to make up for something going horribly wrong.”

Dittmer knows of more than 10 New Zealanders who’ve gone overseas for transplants – about half have been successful but the rest have returned with problems. And while he sympathises with those on a waiting list, “I don’t see that transferring the problem by doing something immoral somewhere else is the solution.”

Debate about letting people sell their kidneys is automatically negatively framed by the language used – “black market”, organ “trafficking”, organ “harvesting”.

And the actions of those paying for kidneys are often likened to slavery or paedophile sex tourism.

The doctors behind the Istanbul Declaration base their case on there being few if any positive outcomes when money changes hands for organs. But when Canadian filmmaker Ric Esther Bienstock investigated the issue she found a much more complex situation.

Her documentary, Tales from the Organ Trade, screened in New Zealand this year and showed that for many, willingly selling a kidney was a way out of extreme poverty, a way out of the hovel they lived in, a way to educate their children.

Bienstock initially thought her documentary would be about the evils of illicit organ transplantation, but ended up utterly ethically conflicted. In one powerful moment, a young Filipino man, Eddie Boy, who desperately wanted to sell his kidney, was turned down because Bienstock had filmed him. His devastation that he couldn’t move from the fetid shack he shared with his wife and baby was overwhelming.

“At that point, I didn’t feel like I’d saved his life, I felt like we’d messed up an opportunity,” says Bienstock.

When she put it to Eddie Boy’s wife that selling a kidney might be wrong, she tearfully replied, “You don’t have to live how we have to – you don’t get it.”

Bienstock says without money changing hands, society considers donating a kidney a selfless, saintly act. With it, suddenly the parties become heinous monsters. “I understand the people who are against it – I get it – nobody wants to think we use people for body parts. But I don’t think they have the moral high ground. And just because it’s an uncomfortable question doesn’t mean it’s a question we shouldn’t consider.”

Bienstock says our medical advances have simply evolved more quickly than our ethics. But trying to shut down the black market without fixing the underlying organ shortage problem was hopeless. “When it comes to life and death, people are going to find a way.”

Martin Wilkinson, an associate professor at Auckland University’s political studies department, says the arguments against letting people buy and sell organs were very weak. Unfortunately, any discussion was usually captured by an elite group with a “keep your bloody hands off this” view.

Wilkinson, author of Ethics and the Acquisition of Organs, says there is also a distinct element of Western paternalism from opponents, insisting they knew best how to protect poor people. “The argument goes, ‘These dopey people will act against their own interests.’ To which the reply is, ‘Well why do you think that?’

“It wouldn’t be a rational decision [to sell a kidney] for somebody who has plenty of money. It might well be a rational decision for someone for whom the alternative is to carry on in debt bondage.”

Wilkinson points to the hypocrisy that we are happy for poor people to do unpleasant and dangerous jobs that we wouldn’t do, even though this was often their only way to survive and their wage was an obvious incentive.  “At what level of risk do we say, ‘You’re not allowed to make this decision about your own body?’ And for something like being an organ donor, the risk just isn’t high enough – it’s no higher than the risk of being a commercial fisherman.”

As Canterbury University economics lecturer Eric Crampton puts it: “Why would it be morally unacceptable to let someone take on a risk that helps save someone else’s life, in exchange for money, but morally acceptable to let someone take on a very similar risk that helps us get tasty fish, in exchange for money?”

And what about policemen, foresters or miners? Do we flinch with unease or indignation when a poor person joins the army in America to get ahead or pay for a university education, knowing they may well be killed or maimed while deployed overseas?

The World Health Organisation, which opposes payment for organs, stresses the need for organ donors’ “dignity” to be respected. But many argue, where is the dignity in wealthy foreign doctors and decision-makers telling a poor person they must stay in squalor and can’t make their own choice about selling a kidney, because the rich have moral qualms about it? Where indeed is the dignity for someone slowly dying for want of a kidney that is available, but unattainable?

Wilkinson says creating a legal, regulated market for kidneys would eliminate many of the black market’s abuses such as brokers cheating donors, poor medical facilities and no health follow-ups.

And there does seem to be curiously inconsistent and arbitrary logic at play sometimes. We allow people to be paid to be guinea pigs for drug trials where the outcome is uncertain and potentially very dangerous. In many countries we let people pay for egg and sperm donation or for someone to carry their baby. Equally, around the world we allow people to sell their blood products or hair. We let people sell space on their bodies for companies to permanently tattoo their logos, and view it as merely a diverting oddity. The fact that many of those doing the above are driven to it by their financial circumstances is seemingly ignored.

An oft-used comparison with the current situation is of a child trapped in a burning building. As the mother screams for help, a stranger rushes in, emerges with the child and becomes a hero. But if the desperate mother says, “I’ll give you $100 to save my daughter,” would we stop the person going in to save the girl because his motives might not be purely altruistic, and would we deem his actions abhorrent, if he did?

Paula Martin says every time the question of incentivisation arose, the argument became heated, polarised and never advanced very far.

Only one country, Iran, allows people to sell organs. Inevitably, the merits of its system are clouded by Iran’s political image and there are conflicting views on how well its semi-regulated scheme works.

But one undisputed fact remains – despite transplant rates improving in many countries, the gap between the number of kidneys available and the number of people needing them continues to grow.

To this end, a group of doctors has broken ranks, arguing we need to consider some form of payment for kidneys. One of them is Stephen Munn, the clinical director of transplantation at Auckland Hospital, who was part of the Declaration of Istanbul but says over the years, his thinking has changed.

Munn says at one conference he attended, an opponent of paying for organs stated the whole concept was wrong, “like having sex with your sister”.

“And that in a nutshell is the intuitive answer – it’s taboo, it’s completely inexcusable and non-discussable. There’s an instinctive moral repugnancy that doesn’t hang too much on logical or rational argument.”

Yet when Munn gives talks on organ donation and remuneration, people’s views are much less entrenched. He gives audiences three scenarios. 1: Someone donating a kidney gets paid for travel, accommodation and the unemployment benefit. 2: They get these things plus a modest cash payment – maybe $5000 – as an appreciation for doing an extraordinarily good thing for the community. 3: They are paid the same as Iranians – about $25,000.

Munn says if everyone was as philosophically opposed to payment as they say they are, they would choose option 1.

“But they don’t. The vast majority in every audience have voted for scenario 2.”

Even among kidney specialists and surgeons, this was the overwhelming feeling – suggesting people would accept a reasonable “thank you” payment for donors, as long as it wasn’t excessive.

And Munn stresses incentives don’t need to be lump sums. Payment could be drip-fed, donors could be offered health insurance, tax breaks, superannuation fund contributions, or gifts could be made to charity.

He dismisses claims such a system would attract the most impoverished and desperate, saying the extended medical and psychological checks donors go through would weed out those wanting a quick buck.

“People couldn’t just slip up to the office here and say, ‘Look, I’m in big trouble because I went to the casino last night and if you just slip a kidney out and give me the money my wife never has to know.’ That’s never going to happen.”

What Munn and his international colleagues are arguing for is a trial of incentives which would at least inform the often angry argument that occurs between doctors, academics and philosophers

If a transparent pilot was run in a country like New Zealand, with payment by the government, no middlemen skimming money, full consent of donors and guaranteed medical follow-up, then at least there would be evidence whether incentives could work equitably or not. But such is the unflinching opposition among the majority of doctors, whose views remain the most influential, that Munn says we can’t even get to the stage of a trial.

However, slowly, ultimately, things will change, he believes. “I think there’ll be a quantum leap eventually. Somewhere in the world there will be a group, maybe in Scandinavia, who’ll say, let’s do a pilot study and let’s report the results. And they’ll do that and everybody will say, ‘Oooh – why don’t we do that, that’s a good idea.’ And 10 years after that everybody will say, ‘I don’t know why anybody would be opposed to this – what’s wrong with this?’”

Every second day, Robin Howarth of Titahi Bay in Wellington settles into his special armchair, arranges his drinks, food and remote controls around him, and gently jabs two thick needles into his forearm. For the next eight to 10 hours he won’t get up, as his dialysis machine circulates and cleans his blood.

In 2008 Howarth was mistakenly prescribed a drug which caused his kidneys to fail. Since then, the 52-year-old father of six has relied on the dialysis machine he’s nicknamed Stephanie, to keep him alive. “Everything in my life revolves around Stephanie – I’m either on it or I’m off it.”

Of the 10 people he began dialysis with, only two others are still alive. “One day one of you doesn’t turn up. Then another doesn’t. All your friends you make are only temporary.”

But Howarth has hope. His daughter Elsie has offered him a kidney and is a good match. With luck, the operation could occur within six months.

Before this was confirmed, Howarth seriously considered using his ACC compensation to pay for a black market transplant overseas and had begun looking for donors. If Elsie hadn’t come forward, he’s sure he would have taken the risk.

Likewise Dave Henderson, who admits he would have considered it if his transplant here hadn’t happened. He strongly supports trialling an incentive system for donors in New Zealand because if people knew they could get a kidney here, they wouldn’t risk the black market in a despairing effort to stay alive.

For Michael Papesch, it’s a decision he’ll have to face in the future. “When this transplant fails, I either find a donor or I die young. If it was the difference between living and dying, or taking off to the Philippines, I think most reasonable people would say, ‘I’ll pay the $50,000 , go to the Philippines and get a transplant to live,’ if they could afford it. And I would think about it quite seriously.”

While Papesch agrees we need more discussion about financial incentives for organs, he worries it could distract decision-makers from other things that could also improve our transplant rates and erode our waiting lists such as better support for patients to help them find live donors, or reimbursing donors’ costs and lost income.

“In a perfect world, I think financial incentives are sensible. I think you can construct regulated systems that would deal with almost all of the moral or ethical objections. But society isn’t ready for it.”

Ultimately, it might take the explosion of diabetes and kidney disease for clinicians and politicians to confront the issue.

“But we need people who will continually ask the ‘Why not?’ question and ‘Is it really so terrible?’ and chip away and chip away.”

His wife, Paula Martin, saw the desperation among the patients she interviewed for her research. And while many of them baulked at paying for a transplant overseas, they often mentioned wanting to give a donor a gift – even though it would be deemed illegal. “They wouldn’t see what they are suggesting as buying an organ, they’d see it as, ‘Someone is doing this really good thing for me and I’d like to give them something in return.’”

It’s likely this already happens behind the scenes between donors and recipients.

And several people spoken to while preparing this story confirmed they knew of cases where a foreign “friend” or “distant relative” had arrived and donated a kidney – in reality a stranger who had entered a relationship with a patient here.

But as long as the majority of clinicians who hold the ear of the politicians oppose any debate, as long as our current laws remain, and as long as we remain comfortable with the human cost of our avowed ethics, such shadowy deals are likely to continue. And, moreover, anyone crossing those boundaries and offering money to save their life will be deemed morally shameful.   

But as documentary maker Ric Esther Bienstock reminds people, “The big question is, would I do it, would I go overseas? And I think I would. I think everybody has to ask themselves, ‘What would you do if your life depended on it?’”

 The Opposing Ethical Views

 

“The fundamental truths of our society, of life and liberty, are values that should not have a monetary price. These values are degraded when a poor person feels compelled to risk death for the sole purpose of obtaining monetary payment for a body part.”

Francis Delmonico and others, New England Journal of Medicine

 

“There remains something morally unattractive about kidney sale and the commodification of the body. But it is far more unattractive for us to let our moral scruples about this condemn others to die from kidney failure, or at best, a long period of misery on dialysis.”

Philosopher Jeremy Shearmur

 

This article first appeared in the December 2013 edition of North&South magazine.

 

 

 

   

Latest

Give Kate A Voice: Bringing Kate Sheppard's speeches to life
96352 2018-09-19 00:00:00Z History

Give Kate A Voice: Bringing Kate Sheppard's speech…

by Noted

Famous Kiwi women read the powerful words of Kate Sheppard, who fought for the right for women to vote.

Read more
Fémmina: The story of NZ's unsung suffrage provocateur Mary Ann Müller
96479 2018-09-19 00:00:00Z History

Fémmina: The story of NZ's unsung suffrage provoca…

by Cathie Bell

Mary Ann Müller was fighting for women’s rights before Kate Sheppard even arrived here, but her pioneering contribution to the cause is little known.

Read more
Ian McKellen charms his way through a documentary about his life
96472 2018-09-19 00:00:00Z Movies

Ian McKellen charms his way through a documentary …

by James Robins

Joe Stephenson’s tender documentary Playing the Part looks at McKellen's life as an actor, activist and perpetual wizard.

Read more
The case for closing prisons
96403 2018-09-18 00:00:00Z Social issues

The case for closing prisons

by Paul Little

If we want a prison system that does a better job than the current one, alternatives aren’t hard to find.

Read more
Jennifer Curtin: The feminist political scientist mixing rugby with politics
96422 2018-09-18 00:00:00Z Profiles

Jennifer Curtin: The feminist political scientist …

by Clare de Lore

Australian-New Zealander Jennifer Curtin says the lopsided nature of the Bledisloe Cup pales in comparison to the slump in transtasman relations.

Read more
Don McGlashan is out of the attic and taking flight
96439 2018-09-18 00:00:00Z Music

Don McGlashan is out of the attic and taking fligh…

by James Belfield

Don McGlashan is taking some old unloved songs on his New Zealand tour.

Read more
Are We There Yet? is the exhibition marking 125 years of women's suffrage in NZ
95961 2018-09-18 00:00:00Z Arts

Are We There Yet? is the exhibition marking 125 ye…

by Linda Herrick

The exhibition at Auckland Museum shows there is still ground to make up.

Read more
Mr Wiki: Mike Dickison is NZ's first Wikipedian at large
96030 2018-09-18 00:00:00Z Tech

Mr Wiki: Mike Dickison is NZ's first Wikipedian at…

by Elisabeth Easther

The entomologist will work on outreach programmes and recruiting editors to improve the sparse coverage of New Zealand topics.

Read more