The gap between supply and demand

 

 

 

As demand for life-saving transplant surgery grows, the idea of paying donors is gaining support

Oct 9th 2008 | from PRINT EDITION

 

“PLEASE don’t take your organs to heaven,” reads the American bumper sticker. “Heaven knows that we need them here on earth.” Last year more than 7,000 Americans died while awaiting an organ transplant—almost double the number of American soldiers killed in Iraq since 2003. In Europe, too, thousands of people whose lives could be extended or transformed (by having sight restored, for example) through transplants forfeit the opportunity for want of available organs.

 

Research by the World Health Organisation (WHO) has found that only one in ten people in need of a new kidney, the body part most in demand, manages to get one. In the poorest places, of course, a complex transplant—which in the American health system costs $500,000—is unthinkable for most people anyway. But the gap between supply and demand for organs affects the poor too, by creating a market in body parts where abuses are rife.

 

In prosperous and middle-income countries, the waiting lists for organ transplants grow ever longer as ageing populations, hypertension and obesity (a big cause of diabetes-driven kidney failure) take their toll. The problem has been exacerbated by a fall in road deaths in rich countries, which—along with strokes and heart attacks—are the main source of organs for transplant. Small wonder that people scour the globe to procure the organs they or their loved ones need; or that unscrupulous intermediaries offer help.

 

The latest of many organ-harvesting scandals is now raging in India, one of several poor countries where the sale of organs used to be legal but has now been banned, with the apparent effect of driving the trade underground. A doctor, Amit Kumar, is awaiting trial after reportedly confessing to having performed hundreds of illegal transplants for rich clients from America, Britain, Canada, Saudi Arabia and Greece. He has been accused of luring labourers into his clinics with job offers; victims were then offered up to $2,000, a princely sum, to part with a kidney. Some who refused are said to have had kidneys removed anyway after being drugged.

 

Another kidney racket flourished in South Africa between 2001 and 2003. Donors were recruited in Brazil, Israel and Romania with offers of $5,000-20,000 to visit Durban and forfeit a kidney. The 109 recipients, mainly Israelis, each paid up to $120,000 for a “transplant holiday”; they pretended they were relatives of the donors and that no cash changed hands.

 

At least until very recently, a key destination for such “transplant tourists” was China, where—according to human-rights groups—there used to be a ready supply of organs plucked from the bodies of the thousands of people who are executed every year. China insisted that the prisoners’ organs were only used with their “consent”. But under global pressure, it agreed a year ago to stop the practice; in theory, only blood relatives of the executed can now get their organs. The sale of any human body part was banned in 2006. Before the change, about five Australians a year bought organs from the bodies of Chinese who had been executed, according to Jeremy Chapman, the Australian head of the International Transplantation Society.

 

Knowingly or unknowingly, Europeans may have benefited from another racket, operating on their doorstep, in a region where the West claims to be upholding human rights. Carla del Ponte, until recently the chief prosecutor at the war-crimes court for ex-Yugoslavia, claims in a new book* that in 1999, guerrillas from Kosovo harvested the organs of 300 captive Serbs at a secret site in Albania. The authorities in Kosovo and Albania have hotly denied the story.

Fear of professional failure

 

Just why is there such a lack of donors in rich countries, given that, according to opinion polls, most people like the idea of donation and are ready in principle to participate? one big factor has been a stream of media reports that give people the impression of widespread malpractice by the medical profession and the funeral and biomedical industries.

 

These reports of shady activities do not always involve life-saving organs such as kidneys, hearts and livers. Michael Mastromarino, the leader of a New York body-snatching ring, was recently jailed for at least 18 years after stealing bones, skin, arterial valves, ligaments and other tissues from corpses nabbed from funeral homes. Most of these parts were used for dental implants, or hip or knee replacements. To avoid detection, the bodies would be “boned” below the waist; PVC piping was then sewed back on in time for open-casket wakes. The parts were afterwards sold on, without proper screening for disease, and used in more than 20,000 transplants. Mr Mastromarino, an ex-dental surgeon, made millions of dollars from the scam. Among his victims was Alistair Cooke, a British broadcaster who died in New York in 2004 at the age of 95.

 

Court hearings arising from the Mastromarino case, replete with gore, will run and run. Next month four employees of his biomedical firm, and the directors of three funeral homes that colluded with him, go on trial. In September a Philadelphia court was packed with relatives who were aghast as two brothers who ran funeral homes admitted selling their loved ones’ parts to the Mastromarino ring. Separately, recipients of body parts from the racket have begun lawsuits on grounds that their lives have been endangered by “diseased” organs.

 

The risk of decrepit or diseased body parts being given to unsuspecting patients was highlighted by the revelation earlier this year that two American patients had died, and another two were undergoing chemotherapy, after getting organs in 2007 from a teenager who was thought to have died from meningitis but was later found to have had a rare form of cancer. The two recipients of his pancreas and his liver died from the same cancer. The publicity such cases attract—rare as they may be—risks discrediting the very idea of transplants.

 

And yet transplants were long viewed as one of the most glamorous and obviously benign areas of medical science. The first successful transplant of a body part—a cornea—was done in Austria just over 100 years ago. It took another half-century before the first live kidney transplant, between identical twins in America. More “firsts” followed: the pancreas (in America, 1966), liver (in America, 1967), heart (South Africa, 1967), lung (Canada, 1983), hand (France, 1998), face (France, 2005) and penis (China, 2006). The range of organs and tissues that can be transferred (there are now 37 possibilities), plus the emergence of better anti-rejection drugs, has led to a surge in demand.

 

In America, nearly 30,000 organ transplants are now carried out per year: an average of 82 a day. The number of available organs is not keeping up. A record 100,000 Americans are on waiting lists, with 4,400 names being added each month. True, some sign up with two or more transplant units. But more than a quarter have been on waiting lists for at least three years; one in seven for five years or more. And the toll of avoidable deaths goes up and up.

Please, don’t give it to a gangster

 

Among American campaigners for organ donation, there were groans of dismay after an investigation by the Los Angeles Times found that four notorious Japanese criminals got transplants at the Medical Centre of the University of California Los Angeles, apparently jumping a queue of needy Americans. Without commenting on the report’s details, the centre defended itself, saying it abided by the rules of the United Network for Organ Sharing (UNOS), a federally-mandated arrangement. This allows for some non-American recipients (up to 5%), since there are some non-American donors. The centre also pointed out that it has no mandate to make moral judgments about the people who get organs. But for Americans who might hope to bequeath their parts to a deserving compatriot, it is horrible to imagine a foreign gangster benefiting.

 

Most of the time, at least, America’s 254 transplant centres stick to UNOS’s strict rules on the use of organs. As in most countries, priority generally goes to children. Then several other factors come into play: compatibility between donor and recipient; geography (some organs last only a few hours after extraction); the urgency of need; the likely improvement in quality and length of a recipient’s life. (A new kidney can extend the life of a robust patient by as much as 20 years.)

 

On this set of criteria, the over-70s are relegated to the back of the queue. But they are now the fastest-growing group on American waiting lists. In desperation, some turn to children or grandchildren for the kidney or liver part they need, according to Nancy Scheper-Hughes, an American medical anthropologist and campaigner against abuses in the organ trade. Normal selection criteria do not apply to voluntary donations between relatives. For sufferers from kidney failure, dialysis is possible—but at a cost of huge personal disruption and a gigantic bill.

 

In Britain more than 7,600 people are now waiting for various organs—nearly 50% up on just a decade ago. Despite a record 3,235 transplants in the 12 months up to March, nearly 500 patients died before a suitable donor was found. Three in four Britons tell pollsters they are ready to donate their organs when they die, yet only around a quarter are registered donors—and far fewer end up actually donating their parts. With barely 13 deceased donors per 1m, Britain’s rate of “cadaveric” donation (ie, after death) is less than half Spain’s or America’s, and well below that of many other rich countries.

 

This partly reflects the high objection rate among British donors’ relatives. When their loved ones die, 40% of Britons refuse to let their organs be removed, even if that is the express wish of the deceased. In Portugal, the refusal rate is only 6%.

 

In Britain, just as in America, news reports have sapped confidence in the transplant business. In recent weeks, eyebrows were raised after it emerged that part of a liver obtained through the National Health Service was used for a private patient, a Kuwaiti boy, at King’s College Hospital in London. The surgeon involved was cleared of any wrongdoing after explaining that he had given most of the liver to an NHS patient, while reserving the left lobe for the boy, who was critically ill.

 

A general British wariness about the abuse of body parts dates from a scandal at the Alder Hey children’s hospital in Liverpool where Dick van Velzen, a Dutch pathologist, cut thousands of parts from children who died between 1988 and 1994, without their parents’ knowledge. Although the parts were taken for research, not transplants, the outrage was huge.

 

A government-mandated inquiry into British transplants noted that despite a rise in living donors (mainly of kidneys) there has been a fall since 2002 in one critical indicator: the number of donations from bodies that are pronounced brain-dead but whose other organs (including heart and lungs) are still functioning.

 

A big reason for this is the objections raised by many families who could not bear the idea of loved ones’ parts being removed from bodies that seemed to be working. The precise definition of death also concerns people who are less intimately involved. Although the world’s main religions (including Islam and Roman Catholicism) endorse the idea of organ donation in order to save lives, some Christian theologians say doctors are too quick to call people “irreversibly brain-dead” when bits of the brain might still be operating.

 

Such sensitivities help explain why so many countries (including Britain) continue to have an “opt-in” system of donation, under which those willing to give their organs on death must sign up as donors, as opposed to the “presumed consent” or “opt-out” systems, under which everyone is assumed to be a donor unless they register an objection. In most opt-out systems, the next of kin’s approval is also required. Spain, France, Italy and Austria, which have presumed consent, all have high deceased-donor rates, of over 20 per 1m; that’s why Britain, too, is debating such a system. But presumed consent is no panacea. Greece, with an opt-out system, has low cadaveric-donor rates; America, with an opt-in system, ranks pretty high.

 

Spain, champion of the dead-donor league and pioneer of the opt-out approach, has more than doubled its rate (from 14 to 34) in the past 20 years. But that is not merely the result of an opt-out system; at least as much of Spain’s success reflects an excellent network of organ-transplant teams in every hospital, which routinely screen patients’ records to find potential donors. The recent British inquiry found that mainly by copying Spain’s efficiency, donation could be boosted by 50%, enough to cover Britain’s needs. Another factor is that Spain’s media have helped allay public fears. Even so, Spain still has waiting lists; so it, like others, is increasingly looking to living donors as an alternative source of kidneys, liver parts and pancreas parts, which can be removed without any long-term harm to the donor’s health. (The removal of a kidney is now pretty safe, that of liver parts less so.) Such transplants mostly take place between relatives or loved ones. Altruistic strangers also offer parts, but this is rare.

 

Living-donor rates vary as widely as cadaveric ones, from near zero in some countries to more than 20 per 1m in others. And there is little correlation. Some places do seem to compensate for a low deceased-donor rate with a high rate of living-donors, or vice versa; but others, like America, do well on both scores.

Doing it the Iranian way

 

But it is Iran (with a low deceased-donor rate) that has the highest living-donor rate in the world—23 per 1m. It is also the only country where monetary compensation for organs is officially sanctioned. Iran began paying unrelated living donors for their kidneys in 1988. Just 11 years later it had eliminated its kidney-transplant waiting lists—a feat no other country has achieved. Under the Iranian system, a patient wanting a kidney must first seek a suitable, willing donor in his family. If that fails, he must wait up to six months for a suitable deceased donor.

 

Failing that, he can apply to the national transplant association for a kidney from a list of living donor volunteers. They are offered two forms of compensation: a fixed $1,200 fee plus free health insurance for one year from the government; and a lump sum from the recipient or, if he is too poor, from a designated charity, of between $2,300 and $4,500. In theory at least, foreigners can’t be buyers or sellers.

 

In practice, Iran also has a market in kidneys (allowing buyers and sellers to agree a price that tops up the sums officially available). In addition, there are altruistic donors, who offer up kidneys anonymously as an Islamic duty, or in gratitude for a prayer that has been answered. In fact, Iran’s reality runs the gamut of approaches from commerce to state support to kindness. It somehow works; Iranians no longer go abroad for kidneys.

 

In every other country, the trade in human organs is illegal, at least on paper. Even Pakistan, which along with China used to take the bulk of transplant tourists, decided last year to ban organ sales. Filipinos tried to fill the gap, openly advertising kidney “surgery” on the internet for $65,000-95,000—a fraction of the cost in America. In 2007 foreigners accounted for nearly half the kidney transplants in the Philippines. For a while, the government turned a blind eye. But in April it banned transplants for non-Filipinos.

 

The WHO has included the idea of a worldwide ban on the trade in organs in its latest draft of “Guiding Principles” for transplants, which have not been updated since 1991. Approved in May by the agency’s executive board, the draft will go to its full assembly for final approval in June next year. Its position is stern and clear: the legal sale of organs is likely to exploit the poorest and weakest groups in society, to undermine altruistic giving and may also lead to human trafficking. But the rapidly worsening shortage of organs, particularly kidneys, has led some patients’ groups, doctors and politicians to look again at some form of reward for living donors.

 

For example, Israel has passed a law to allow donors to be paid fixed compensation of around $5,100 for loss of earnings during transplant surgery and recuperation. (The Orthodox Jewish stress on the integrity of the human body has been one factor in the lowish rate of donations in Israel.) Benjamin Hippen, a transplant neurologist with the Carolinas Medical Centre in Charlotte, North Carolina, suggests that American donors be offered some reward, such as lifelong health insurance. The Netherlands has considered that too.

 

In 2005, Dr Hippen notes, 341,000 Americans were on dialysis, triple the number in 1988. This cost the state $21 billion a year, more than 6% of Medicare’s total budget. By 2010, their number is expected to swell to around half a million, rising to perhaps 700,000 by 2020. Though Iran’s system is “far from perfect”, America could learn “a good deal” from it, he says.

 

Gavin Carney, a professor at Australia’s National University Medical Hospital, suggests paying each donor around $47,000. This, he says, would save thousands of Australian lives and billions of dollars in the cost of care for patients, some of whom wait seven years for a kidney. The government “shouldn’t just let people rot on dialysis”, he says. Nadey Hakim, a London transplant surgeon and ex-president of the International College of Surgeons, also favours some form of compensation. “There really is no other option,” he says.

*“La Caccia: Io e i criminali di guerra” (The Hunt: the War Criminals and I), published by Feltrinelli

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