Chain of hope

A really touching true story of hope and altruistic giving.

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The Straits Times
22 Aug 2008

Chain of hope

An altruistic act sparks world's first string of kidney donations

By Bhagyashree Garekar

WASHINGTON: When Mr Matt Jones donated a kidney to a perfect stranger last year, he had no idea he was sparking off a series of events that would lead to 10 transplants within a year. 'I thought I was helping one person in need. It turned out to be more than that,' said Mr Jones, a 29-year-old father of five from the small town of Petoskey in Michigan.

His act of kindness was multiplied manifold by a two-year-old organisation devoted to finding matches for live kidney transplants. A game-theory scientist came up with an algorithm last year to efficiently perform the seemingly simple but staggeringly tricky task of matching patients with donors.

The result is called the Never-Ending Altruistic Donor chain (Nead). It is a pioneering effort that aims to cut short the waiting time for thousands of American kidney patients on the transplant list.

'Right now, we have an 11th donor willing to donate her kidney but she is a rarer blood type so we are still working out a match for her,' said Ms Laurie Reece, the executive director of the Ohio-based Alliance for Paired Donation (APD).

'We also started a second chain of transplants last December when another altruistic donor stepped forward. Next month, a third chain will begin. Altogether, we have seven altruistic donors willing to start chains as soon as a match is found.'

It all began when Mr Jones, a manager at a car rental firm, saw a television news item on kidney donation three years ago. 'I used to think you could only donate after death,' he said. 'When I learnt that I needed only one kidney to function, I decided straightaway that I would donate.'

Kindness is second nature to Mr Jones. Ever since he turned 17, he has followed his mother's example in donating blood several times a year.

His fiancee Meghan was aghast when she learnt of his decision. After all, kidney removal is major surgery that leaves three in every 10,000 donors dead.

And what if his second kidney were to fail later in life? Or if one of his children were to need a kidney transplant some day?

'She went nuts and tried to talk me out of it, but I had already pledged to do it and I am a man of my word,' he said.

Two attempts last year to hook him up with a recipient failed. Then, the APD found him online while looking for a kidney for Ms Barbara Bunnell, a 53-year-old grandmother with incurable polycystic kidney disorder.

On July 18, Mr Jones went to Phoenix, Arizona and his kidney was transplanted into Ms Bunnell.

Nead then kicked in to trigger a chain of transplants where, in the past, things would have ended with one grateful recipient matched with an altruistic donor.

Eight days after his wife received the kidney, Mr Ron Bunnell travelled to Toledo, Ohio to donate his kidney to 32-year-old Angie Heckman, who had been on dialysis since she was 21. Mr Bunnell had wanted to donate to his wife but was an incompatible match.

In the weeks that followed, subsequent pairs of recipients and their willing-but-incompatible donors underwent operations that resulted in the 10th transplant in March.

The idea of a donors' chain is gaining ground and, last month, the New York Presbyterian Hospital peformed a four-way kidney swop that began with an altruistic donor stepping forward to donate his kidney.

More than 75,000 Americans are on a transplant list and 12 of them die each day waiting for a kidney. Last year, there were 17,000 transplants, 7,000 of which were from living donors.

In Singapore, 563 people are on the waiting list for a kidney. There were 88 live transplants last year and 46 until May.

Living donor kidneys are the best because they have a 95- to 97-per-cent success rate and last an average of 16 years. By comparison, a dead donor's kidneys are good for only eight years.

Not satisfied with just giving a kidney, Mr Jones now encourages others to do the same. When he rents out a car, he looks for a tiny heart icon on the driving licence that says that the driver has agreed to donate his organs upon death.

'I tell my customer, you don't have to wait to do your act of kindness,' he said. 'You can donate now. I did.'

Organ trading model in next 1 to 3 years

The New Paper
14 Aug 2008

Organ trading model in next 1 to 3 years

But Health Minister Khaw Boon Wan proposes that the model, only for kidneys, be managed by independent body using strict screening.

By Ng Wan Ching

SINGAPORE may have an acceptable model of organ trading in the next one to three years. While it may not be an ideal solution to the shortage of donor organs here, it cannot be ignored either.

That was how Health Minister Khaw Boon Wan characterised his dilemma in a closed-door dialogue held last month with 30 professionals. The dialogue, organised by the People's Action Party's (PAP) Women's Wing, was reported in the July/August issue of Petir, the PAP magazine.

Mr Khaw said that while the debate rages on, patients are dying and the poor are being exploited to part with their kidneys at a low price. Hence, he cannot ignore it.

'If we don't do anything about it, we will be guilty ourselves,' he said.

STOPPING EXPLOITATION

In the clearest picture yet of how an organ trading system might work here, Mr Khaw said this was how he would do it:

1. Restrict trading to kidneys only, as trading in other organs creates other problems or involves a higher transplant risk to donors.

2. Eliminate a direct transaction between the donor and the patient by letting an independent, professionally-run third party, the kidney bank, manage the donor pool and match the transplants.

3. Require stringent screening, full risk disclosure and communication with donors and their families, to ensure that only healthy donors are selected and their decisions fully informed.

The third party (the kidney bank) will also safeguard the welfare, health and interests of donors by providing pre- and post-surgery care.

Petir reported Mr Khaw as saying that this would be the greatest value of legalising kidney trading - to stop the exploitation of the poor and ignorant, who do not know the full value of their kidneys. For the best possible outcome, he added that matching should be based only on clinical criteria, not dollars and cents.

He suggested that a way to subsidise poor patients' access to kidneys is by requiring those who can afford it to pay the international price to the kidney bank - 'the Robin Hood principle where one rich patient can possibly support transplants for five poor patients'.

'This will address the current problem of black market trading where the poor can only be donors but not possible recipients,' he said.

The audience asked if more could be done to promote altruistic donations.

Mr Khaw said that compared to Sweden, where family members will readily offer their kidneys for transplants to their loved ones, Singapore's altruistic transplant rate is 'shameful'. There are hundreds of patients on the waiting list, but altruistic donations from family members number only in the dozens.

Mr Khaw said that currently, each year, about 200 Singaporeans join the pool of patients who can potentially benefit from a kidney transplant.

Of these, 50 will get one from deceased donors under the Human Organ Transplant Act (Hota); another 30 will receive a donation from a relative and 20 will go abroad for a transplant. To help the remaining 100, the Ministry of Health will propose that Parliament remove the Hota age limit for deceased donors, now set at 60 years.

The MOH will also explore matching a donor whose tissue is incompatible with the intended recipient's with another donor-patient pair in a similar situation.

These initiatives will raise the kidney transplant rate by another 30 to 40 patients a year. But that still leaves about 60 patients without a transplant option.

While altruistic donation is the way to go, he said that the door should also be kept ajar for some limited transactions to take place. His estimated time frame is to have an acceptable model of organ trading in the next one to three years.

What price Altruism?

The New Paper
23 July 2008

What price Altruism?

Should there be financial compensation for organ trading?

By Low Ching Ling

IT is an issue that has divided patients, their families, doctors, lawmakers, ethicists and just about anyone who feels strongly about it.

Supporters of legalising organ trading say it is a no-brainer: Why not do it if it can save more lives?

Please, get real, no one is going to give a stranger his or her kidney for free, they argue.

Critics decry organ trading as unethical. They insist donors should do it out of the goodness of their heart.

Which way should Singapore go?

But does it always have to be narrowed to a zero-sum game - either pure altruism or financial reward?

Perhaps not, Health Minister Khaw Boon Wan revealed in Parliament yesterday. He said he would sometimes get requests from charities and religious bodies who want to offer 'some compensation, in kind and in cash' to organ donors and their families to 'acknowledge their altruistic act'.

But the organisations would worry that their gestures might be seen as organ trading.

Mr Khaw said: 'My view is that we should encourage third parties, especially those from the charity and religious sector, to help promote altruistic organ donations, and that we should consider how they can be allowed to provide some financial compensation to the donors and their families after the transplants have taken place.'

Yes, push altruistic organ donations to their 'maximum potential', and let living-related kidney donations and those done under the Human Organ Transplant Act to still be the 'predominant sources' of kidney transplants.

But don't rule out organ trading, Mr Khaw added.

'If altruistic organ donations cannot fully meet the demand, we should continue to search for good complementary solutions,' he said.

'We should not reject any idea just because it is radical or controversial.'

Can legalising organ trading be the answer to our kidney donation woes?

Mr Khaw said: 'By forcing ourselves to think about unconventional approaches, we may be able to find an acceptable way to allow a meaningful compensation for some living-unrelated kidney donors, without breaching ethical principles and hurting the sensitivities of others.'

And perhaps it is time we get real, he said. After all, there are desperate patients out there who want to live, and also desperately poor people willing to exchange a kidney for a better life. 'This is the reality and the human dilemma confronted by many in such desperate situations,' Mr Khaw said.

'Criminalising organ trading does not eliminate it. But it merely breeds a black market with the middle man creaming off the bulk of the compensation which the grateful patient is willing to offer the donor.'

WHAT PRICE ALTRUISM?

So, will putting a price on altruism work in Singapore?

It may still take some time before the Government reaches a decision. For now, the Health Ministry will push to amend some other existing laws on organ transplants.

First, by removing the age limit of 60 years old on cadaveric donors.

Mr Khaw said: 'Many countries, including Spain, do not set such an age limit. The suitability of the organ depends on its condition, rather than the age of the donor.'

Second, by allowing pair-matched donations here.

This means that if patient A's donor does not match A and patient B's donor does not match B, they can switch donors if there is a match that way. A live donor registry will be set up to facilitate this.

With the two initiatives, Singapore can aim to raise its kidney sufficiency level from 50 to 70 per cent in the medium term.

What about those who have broken the law?

Mr Khaw said: 'Even as we take action against those involved in illicit organ trading and unscrupulously exploiting the desperate and the vulnerable, we will take a sympathetic approach to the plight of the exploited donors and the basic instinct of kidney failure patients to try to live.'

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The New Paper
23 July 2008

Want fairness? Let kidney bank handle it

By Ng Wan Ching

THROWING money at donors is not the solution to the kidney shortage facing kidney failure patients here. If it is, then those who need money the most will be the first to give. And those who have the most money will be the first to get.

That situation, as so many have pointed out, will exploit the poorest among us and it will favour the richest. The amount of money given, directly or indirectly, to the donor, will influence who might donate a kidney.

At $20,000 to $50,000 a kidney, perhaps the lowest earning segment of society will feel compelled to give.

For up to $300,000, perhaps the next higher segment of society will feel the push.

For up to $500,000, perhaps even well-heeled professionals might be induced to donate.

The amount has to be carefully calibrated so as to be meaningful and yet not glaringly so that it becomes a rare consumer item.

Idealistic as this sounds, there should still be room for altruism, albeit not so pure. (None of this prevents those who want to give for nothing in return.)

So how can the sums paid to donors be regulated?

The money could come from a common pool managed by a governing body rather than individuals paying for their donor organ in a free market. On top of managing the money, the governing body overseeing the kidney bank will have to come up with policies that address various issues.

Such as, what will happen to their family members if they happen to need a kidney in the future? Once someone has given up one of their kidneys, they won't be able to help their loved ones in their time of need.

One solution is to put kidney donors' family members at the top of the transplant list if they do need a transplant. And while money might encourage more people to give, there will still be those who baulk because of health considerations.

Many US hospitals say donation does not increase a donor's risk for kidney failure or put him at more risk for future health complications.

But the 'what if's' linger.

Studies have been done to show that donors are at no more increased risk of heart attacks. Further study is needed to determine whether the apparent increase in the risk of high blood pressure is truly an effect of living kidney donation.

The long-term monitoring of donors' health calls for more research.

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The New Paper
23 July 2008

Allow organ trading, says Noble Prize laureate

Attitudes towards compensating kidney donors are changing. Health Minister Khaw Boon Wan spoke about a recent article by Dr Gary Becker, of the Hoover Institution, who won the 1992 Nobel Prize in Economics.

In an article titled 'Should the purchase and sale of organs for transplant surgery be permitted?', Dr Becker used economic principles to argue for organ trading. Here are some excerpts.

AN ECONOMIST'S PERSPECTIVE

'To an economist, the major reason for the imbalance between demand and supply of organs is that the US and practically all other countries forbid the purchase and sale of organs.'

WON'T REDUCE NUMBER OF DONORS

'Some critics simply dismiss organ markets as immoral 'commodification' of body parts. More thoughtful critics suggest that allowing organs to be bought and sold might actually reduce the total number of organs available for transplants because they claim it would sufficiently lower the number of organs donated from altruistic motives to dominate the increase due to those sold commercially.

'That scenario, however, is extremely unlikely since presently only a small fraction of potentially useable organs are available for transplants.'

LIMITS TO OPT-OUT SYSTEM

'A PhD thesis in progress by Sebastien Gay at Chicago shows that opt-out systems may yield somewhat more organs for transplants than the opt-in systems used by the US and many other nations, but they do not eliminate the long queues for transplants.'

CHARITY NOT ENOUGH

'If altruism were sufficiently powerful, the supply of organs would be large enough to satisfy demand, and there would be no need to change the present system.'

EQUILIBRIUM PRICE

'In a paper on the potential of markets for live organ donations, Julio Elias of the University of Buffalo and I estimate that the going price for live transplants would be about US$15,000 ($20,280) for kidneys and about US$35,000 for livers.'

Current costs for transplants in the US are in the range of US$100,000 for kidney and US$175,000 for liver.

POOR NOT EXPLOITED

'... why would poor donors be better off if this option (of selling their organs) was taken away from them?

'... Many of the organs used for liver or kidney transplants are still likely to be supplied by relatives. In addition, many middle class persons would be willing to have their organs sold after they died if the proceeds went to children, parents, and other relatives.'

DETERRING IMPULSIVE SELLERS LOOKING FOR SHORT-TERM GAIN

'(We can have) a month or longer cooling-off waiting period between the time someone agrees to supply an organ and the time it can be used.

'They would be allowed to change their mind during the interim.'

I would do anything to get a donor

Frankly, I have to applaud Jamie for the guts for speaking out what many people dare not.

When you need a kidney, you really need a kidney. The other options/alternatives are either dialysis or DEATH. Unless you have a death wish.

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The New Paper
17 July 2008

Jamie Yeo was born with only one kidney.

If it fails, she says...
I would do anything to get a donor

By Jeanmarie Tan

TELEVISION host Jamie Yeo has been following the ongoing debate about the legal and ethical implications of organ donation with much interest. It's a topic close to her heart because she was born with only one kidney.

Her condition, called renal agenesis, is considered fairly common, occurring in roughly one in 5,000 people. It is not usually life-threatening or of any major concern as long as the other kidney is healthy. Jamie's 58-year-old father also has renal agenesis.

The Stomp Star Blogger revealed her condition publicly for the first time on her blog on Monday. She had spoken up about it because it was relevant to this week's topic on organ trading.

She wrote that she 'empathises greatly' with those in need of transplants and that she's 'in a rather precarious situation because unlike 'normal' people, I don't have another kidney to fall back on in case one fails'.

She also wrote that if she were to be caught in such a situation, she would do 'anything and everything I can to get hold of a willing donor, stranger or family, man or woman... As long as there's consent, money and everything isn't going to be a problem. I'm sorry. I don't want to die'.

On her decision to go public with such a private matter, Jamie, 31, told The New Paper that she didn't think it was a 'big deal in this day and age'. 'I wanted to explain why my opinion was such. I feel for everyone involved... and I can't fault someone for wanting to save his own life.' Her condition doesn't mean she actually has a higher risk of getting kidney failure. She said: 'Even though I only have one kidney, it's larger than a normal kidney and it's functioning just as well as two healthy kidneys.'

The ESPN/Star Sports presenter said her parents told her she had renal agenesis when she was 11, but she wasn't fearful because they did it in a 'reassuring' manner.

REASSURING PARENTS

She recalled: 'They were like, 'Don't worry, Daddy has it too.' I thought, no wonder my parents always nagged me to drink more water when I was growing up (to flush out the toxins).' Her younger sister and brother don't have renal agenesis.

Her parents first discovered Jamie's condition when she had a urinary tract infection as a baby, which was eventually cured. But as a precaution, she had to go for annual check-ups until she was 12.

She didn't have to take any medication or seek treatment for her condition. A non-drinker and non-smoker, she just has to take care of her health, diet and exercise, and avoid contact sports.

Jamie told her husband of four years, Class 95 DJ Glenn Ong, about her condition 'very early' in their relationship. Since then, the couple - who have been dating since 2001 - have kept it so quiet that even his parents don't know.

Jamie said with a laugh that Glenn, 37, didn't shower her with special attention after finding out, because 'he always treats me with care'. Glenn told The New Paper: 'I had never heard about (renal agenesis) before. I didn't know what to say when she first told me, but it did scare me because I was thinking of the long-term risks.'

He said he hasn't tested himself to see if he's a potential donor match because he wants to 'think positive'. He added: 'If a spouse finds out he's a match, on the outside he'll say yes, but is the answer really yes? Does he do it willingly or only because he has to? 'I suppose I would, but honestly, I'm scared to death. I dare say I dread that day if it ever comes. That's why I think Pierre is the man! And they weren't even married yet!' Glenn was referring to actor Pierre Png, who donated a part of his liver to then-girlfriend, now-wife, Andrea De Cruz in 2002.

But Jamie's condition didn't stop Glenn from wanting to marry her. He said: 'I did think about the consequences, but you accept someone with their condition or you don't. I love her, and at the end of the day, I took a risk.' Glenn said his fear for Jamie's health is ' always at the back of my mind', and added: 'Even when she goes to the toilet more frequently than usual, the fear comes back. And I always feel she doesn't drink enough water. But we can only hope for the best and pray.'

HIGH-RISK PREGNANCY

Even though having one kidney has never given her serious health problems, Jamie admitted it has affected her reproductive system and that she's more susceptible to a high-risk pregnancy. Although children aren't on the couple's list of priorities now, Jamie insists her condition is not the reason they are holding out.

But she remains optimistic and upbeat, saying: 'If I do intend to get pregnant, I have to get myself checked more frequently. 'But again, it's not a big deal because my gynaecologist has treated patients with similar problems (who have given birth successfully). And even if the baby has only one kidney, I know it'll be fine because my dad and I are fine.'

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Below is the complete blog post that led to the news story above.

I was born with only one kidney so...

Jamie Yeo -

I've been following the ongoing controversy involving the legality of organ donation with much interest due partly to the fact that I have renal agenesis. It's nothing serious. It just means I was born with a single kidney. The condition is actually quite common as it occurs in one out of 750 people. And even though there are no serious or fatal long-term problems for people with one kidney, I can't help but empathize greatly with those who are in a situation where they need a kidney or an organ transplant because theirs isn't working anymore. Obviously, my empathy arises from the fact that I'm in a rather precarious situation because unlike "normal" people, I don't have another kidney to fall back on in case one fails.

Look, I understand all the fuss surrounding the trading of organs and how you need to have strict ethical guidelines such as, donations can only be made by family or spouses, and you can't just simply buy one from someone off the streets who's willing to make some cash. The strict laws are in place to discourage the illegal trading of organs. If organs can be so easily bought and sold, who's to know that the organ sold belongs to a donor/seller who actually gave their consent? We've all heard horror stories of people who have gotten kidnapped, then murdered for their organs. Well folks, these stories are true unfortunately.

But see, human beings are depraved. Give them a set of rules and they'll soon find a way to break them. As the saying goes, there will always be a few bad eggs. Illegal trading is going to happen anyway with or without strict guidelines. But of course, I do recognise that if there ARE stringent laws in place, it might happen less frequently.

Then again, as with every other situation in life, it is much easier passing judgment from afar when it doesn't concern you in any way.

The stats are grim. Kidney-failure patients here in Singapore wait an average of nine long years for a kidney if they don't have matching family donors. Healthy people will never ever understand the amount of fear, uncertainty and desperation people in dire life-or-death circumstances face. We think we do but we don't.

I'm not here with answers today because I'm aware that it is somewhat of a pandora's box we're dealing with. I think the safest bet is to view this with as much compassion as we can muster and to realize that not everything in this world is black and white. Sometimes we have to take on each situation individually and not apply the same set of ethics and rules all the time. It's like a teacher dealing with her students. You can't apply the same tuition, encouragement and attention to all of them because they all come from different backgrounds, environments, etc.

What I can say for sure though, is if I were to be in a situation where I needed an organ transplant to live, you can be sure I'd be doing anything and everything I can to get hold of a willing donor, stranger or family, man or woman, whatever. As long as there's consent, money and everything isn't going to be a problem. I'm sorry. I don't want to die.

http://starblog.stomp.com.sg/post.php?blogid=858

Kidneys done the spanish way

If such methods of kidney/organs donation worked in Spain and Norway, why not here? I really hope the government can consider taking such measures. Doing so would shorten the waiting list for organs donation and enable more lives to be saved.

So how long would it take for it to be effective? 2 years? 5 years? 10 years?

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The Straits Times
17 July 2008

Short queues for kidneys in Spain and Norway:

Here's why Kidneys from the elderly are accepted and more people are willing to be donors

By Salma Khalik

BEFORE considering organ trading, Singapore can increase its supply of kidneys by learning from Spain and Norway, says a top kidney specialist here. The two European countries have short waiting lists for kidney transplants - unlike Singapore, where the average wait is nine years for the 560 people on the list.

Both countries accept kidneys from the elderly, whereas in Singapore, kidneys are taken only from people 60 years old and younger. This immediately cuts off the supply of many kidneys every year.

In Spain, a third of the cadaveric kidneys are from people over 60 years old. Spain and Norway stand out in the world for their short list of patients waiting for kidney transplants. Their success has been cited in the current debate raging over whether Singapore should consider legalising the organ trade to meet the high demand here.

Organ trading is a criminal offence here and, in the last month, five men were charged in connection with the offence, the first such cases here. The cases have resulted in some people calling on the Health Ministry to reconsider the ban on organ trading.

But before going down that route, Professor A. Vathsala, director of the kidney transplant programme at the National University Hospital, said Singapore should expand its organ donation programme first.

She has visited Norway and Spain and believes that some of their practices, such as removing the age restriction on cadaveric donation, could be adopted here. Spain transplants both kidneys from an older donor - even someone in his or her 80s - into an elderly recipient. 'No organ goes 'wasted' to be buried needlessly when it can save the lives of so many others with organ failure,' she said.

Another big difference is that people in Norway accept that patients have better outcomes with a kidney from a living donor. Almost everyone there is a willing donor. 'In Norway, the whole family turns up for the evaluation,' she said.

'In Singapore, we often have parents reluctant to donate a kidney to their child.' Madam Halimah Yacob, head of the Government Parliamentary Committee for Health, suggested incentives such as free medical treatment. This way, she argued, 'they will be less worried about hefty medical bills if complications develop after they donate their kidneys'.

Another lesson from Norway - stay healthy. Prof Vathsala said this not only cuts the number of people whose kidneys fail, but also increases the pool of potential donors. She revealed that here, one in three family members who volunteer to donate a kidney is turned down because of medical problems.

As most patients here have only one or two willing donors, unlike in Norway where the whole family turns up, getting a suitable donor is not easy. It is a matter of lifestyle and attitude towards health and health care, she said. In Norway, patients 'are more disciplined and kidney failure due to diabetes is low'.

There, only 13 per cent of kidney failure is due to diabetes. In Singapore, the rate is 53 per cent. She said: 'Diabetes is an easy disease to treat. The problem with our patients is they don't want to take charge of their illnesses. 'They think that their diabetes is a mild condition. They think they can eat a little bit of sweet today and pop in an extra tablet later. 'They won't take insulin when their doctor advises them to. They live a life of excess. They are frequently obese. They lack exercise ...the list goes on.'