Why the Campaign for Living Kidney Donation is “Bullshit” Part Four
This story has described the questionable premise that living kidney donation is nearly risk-free and beneficial to donors, as well as the remarkable evolution of ethics that turned the once unthinkable act into one which is now publicly encouraged and glorified. Free marketers are pushing for the next step: the campaign for a system to compensate living donors …
The Slippery Slope
A harbinger of the fall of the next big taboo came in the form of a note of caution from Monaco, who wrote that “the establishment of using strangers as donors would set transplant medicine on a slippery slope toward commercialism of vital organs.”
And, sure enough…
“Altruism, as a strategy, is simply not producing enough organs. It needs to be supplemented with compensated donation,” says Sally Satel, MD, a kidney recipient and rabid free marketeer. “Many young people with decent earning potential would likely be attracted to the idea of saving someone’s life in exchange for a nest egg or help paying off a loan.” Satel is leading society’s slide down the slippery slope toward commercialism. She found herself scrambling for a donor after her kidneys faltered in 2004, and it appears from her fierce advocacy for an unregulated renal marketplace that she’d much rather be able to just write a check for the next one she’s going to need.
Since her brush with the waiting list, Satel has been churning out one article after another from her perch in the Free Enterprise Institute calling for abolition of outdated laws depriving young people of their chance to start a nest egg or pay off that Dodge Ram in the driveway. Employing the same dubious data as Robert Montgomery and his cohorts at the American Society of Transplant Surgeons, she writes emotional pieces about the backward thinking of this country, which keeps “hapless donors and wretched patients locked in a morbid embrace.” (Whatever that means.)
“Someone on the organ list dies every 90 minutes. Tick. Tick. Tick,” she writes in a stock piece lamenting the sad state of America’s organ policy, which she says, “is governed by a tenet that closes off a large supply of potential organs — the notion that organs from any donor, deceased or living, must be given freely.”
Like all promoters of live donation, Satel is fond of opening with the guilt pitch. “Tomorrow at this time, 12 people will be dead because they could not survive the wait on the national transplant list in the United States — a queue that can take between five and 10 years to climb in major cities.”
What these people fail to mention is that transplantation is generally not a life or death situation; it is more often a question of quality of life. It is a treatment option for kidney failure, not a cure. In fact, for recipients, quality of life improvements “may be the most important benefit of kidney transplantation,” according to Canadian researchers.
Life on dialysis — as currently administered — is certainly no pleasure cruise. “But it is not a living death,” says kidney specialist Dr. Miriam Weiss. “Similarly, life with a transplant is not resurrection, but a series of highly morbid medical struggles.” In one study, more than a third of kidney transplant recipients were back in the ICU within 30 days, mostly for kidney and other urological problems. Immunosuppressants leave recipients vulnerable to everything from colds to cancer; the overall rate of death from cancer in transplant recipients is ten times the rate for non-transplant cancer patients. A transplanted kidney requires that attention must be paid. There are restrictions on diet and activity, increased susceptibility to infection and diabetes as well as the likely need for one or more additional transplants.
As a treatment option for kidney failure, in cold statistical terms, transplantation is not all that superior to dialysis when it comes to extending one’s life. According to 2012 government budget figures, a transplant (from a deceased donor) adds an average 117 days to a patient’s life compared to dialysis. A group of Australian researchers posits that even if there were an unlimited supply of deceased donors and no waiting list, middle to older-age recipients would gain an extra 3.5 years of life with a transplant as opposed to staying on dialysis. And there are less onerous and more effective dialysis methods available right now that would eclipse that gain.
If “Donor Benefit is the Key to Justified Living Organ Donation,” as the transplant journals claim, then living kidney donation, to strangers at least, cannot be justified — unless a psychological benefit counts more than life itself. If transplants from deceased donors extend the lives of recipients by an average of 117 days compared with dialysis, and you want to be generous, you could say that a kidney from a live donor doubles that — and you’d get an extra 234 days. The problem is that the person who gave that kidney has forfeited about 303 days.
The average donor is giving up 10 months of living so that the average recipient can gain about 8 months.
The transplant industry live-donation juggernaut may not be healthy for the country as a whole either.
“From a population health perspective, living kidney donors are at high risk of progressing to end-stage chronic kidney disease and ultimately requiring either dialysis or a kidney transplant over their lifetime,” writes ethicist Michael Potts. “Effectively, living kidney donation practice can no longer be considered as solving but exacerbating a future epidemic of end-stage kidney disease in a population, and for society to deal with in 20–30 years later. This population health problem will amplify the future crisis of kidney shortage for transplantation, and burden an already strained health care system.”
At least one UNOS committee member agrees, asserting that the drive to increasing living donation by sensationalizing deaths on the waiting list amounts to creative bookkeeping. “It strongly overstates our success and ignores the failures,” he said at a meeting in 2011. “We need to remember that the bill will come due.” He also said that the transplant community is being disingenuous in “providing only short-term predictions, and particularly in labeling any results as ‘lives saved’ rather than the more truthful “deaths deferred until next year.”
And if they are going to tell you that 12 people die everyday for want of a donor, they should also mention that — according to the same data — 12 kidney transplant recipients die everyday.
In 2007, Satel wrote a piece for the Huffington post about a Dutch reality television program called “The Big Donor Show.” A 37-year-old woman with a brain tumor was going to choose one of three people with renal failure to get one of her kidneys. Viewers were encouraged to weigh in via text message. There was worldwide condemnation. Everyone was outraged — except Sally Satel. “I’m for it,” she declared. She even suggested a follow-up show called the Big Donor Surgery and Recuperation, and she used the rest of her column as a pitch for legalized compensation.
Turns out the show was a hoax.
Satel says the worldwide organ shortage has resulted in flourishing black markets, “in which corrupt brokers deceive indigent donors about the nature of surgery, cheat them out of payment and ignore their post-surgical needs.” The interesting thing about that statement is that if you replace brokers with transplant surgeonsand consider the failure of Medicare to pay donation-related medical expenses as promised, you could say it applies in this country.
Satel and other free market boosters want us to modernize our thinking to liberate America’s kidney supply, so we can become more like Iran.
Amsterdam 2004: Care of the Live Kidney Donor: Consensus on the Ultimate Gift
“Kidney transplant physicians and surgeons met in Amsterdam, The Netherlands, from April 1– 4, 2004 for the International Forum on the Care of the Live Kidney Donor. Forum participants included over 100 experts and leaders in transplantation representing more than 40 countries from around the world.”
The gathering kicked off with an overview of the current state of affairs regarding live donors around the world.
Despite the characterization of parting with one’s kidney as giving the Ultimate Gift, the first presentation on live donors came from Ahad Ghods and Nasser Simforoosh, a couple of transplant surgeons from Iran. This is a country where you’d be crazy to actually donate, considering that kidneys sell like Persian hotcakes on the legal, open market. The government pays about $1,200 and the buyer and seller are free to make their own deal on the side. Vendor is the preferred nomenclature and more appropriate medical term for a person who sells his or her kidney. Ghods and Simforoosh paint a pretty rosy picture of the transplant scene in Iran.
First off, as Iranian transplant docs are always pointing out to jealous international counterparts, Iran has supposedly eliminated the waiting list; they’ve got more kidneys over there than they know what to do with. And the outcomes could hardly be better, say Ghods and Simforoosh. In 2003, nearly 16,000 transplants were performed. About 12,500 came from strangers — cash on the barrel head; 3,000 came from relatives who may or may not have granted favorable terms, and the rest came from people who, being deceased, no longer had any use for money.
Out of all those transactions, only three of the vendors died. Thus, the official rate death from donor nephrectomy in Iran was 1 in 5,000 (.02%), which is a much better batting average than The Great Satan can claim. In America, 1 donor out of 1,700 gets the chance to donate his other kidney too, as well as all of his other organs — on the spot — if they’ve got the audacity to ask surviving relatives.
Tehran’s contribution to The Transplantation Society’s 2004 position statement regarding “the responsibility of the community for the live kidney donor” was the message that kidney mercantilism works. Sally Satel and her ilk took that and ran with it. There was one little caveat, which Ghods noted in a later publication. “Unfortunately, there is no national transplant registry in Iran to report the short-and long-term results of transplantation in all transplant recipients and kidney donors.”
An editorial in the American Journal of Transplantation notes that when it comes to gathering information on the fate of live donors, American surgeons who live in glass houses are in no position to throw kidney stones. “Although it is tempting to criticize the lack of organized donor follow-up in the Iranian model, to do so would be hypocritical.” That’s because of the stubborn resistance of U.S. transplant surgeons to collect follow-up data on the fate of live donors. For example, a key indicator of kidney damage is proteinuria, which means that your overworked remaining kidney is springing leaks, spilling protein into the urine. “Sadly, the risk factors for and clinical significance of proteinuria in living kidney donors remain unclear. The existing literature on this subject is hampered by use of nonstandardized definitions, a paucity of controlled studies, and virtually no information regarding progression over time.“
Criticizing the Iranians for lack of follow up certainly would be hypocritical. Since the dawn of transplantation, nearly every journal article by American transplant surgeons laments the lack of safety data while emphasizing the need for a national registry in order to obtain such information. In 2005, the U.S. Department of Health and Human Services Advisory Committee on Organ Transplantation officially repeated the obvious: “Provisions in living donor informed consent cannot be fulfilled without the existence of a living donor registry.
Yet it never happens.
Perhaps the reason is because when they saw the results of the one serious attempt made early on, they decided that they’d rather not know. The South-Eastern Organ Procurement Foundation (SEOPF), the forerunner of UNOS, appears to have been a victim of its own success. They kept a registry for ten years, noting that “Rates of donor complications reported by the transplant programs may greatly underestimate the actual complication rates,” and that “UNOS admits that their report of 56 previous donors now listed to receive kidney transplants is an underestimate of donors who develop renal failure.”
Ninety four people responded to SEOPF follow-up surveys. Thirty eight of those people had complications — but “only” eight of those had to be re-hospitalized or have surgery. Ten people had to go on anti-depressants and five reported high blood pressure. One person reported Epididymitis, which according to the Mayo Clinic, “is an inflammation of the coiled tube (epididymis) at the back of the testicle that stores and carries sperm.” Eight donors reported they were treated for “genitourinary problems.” One patient developed kidney stones. One patient was noted to have proteinuria after donation. One patient complained of urinary urgency. There were five hernias reported that required surgical repairs. Six patients reported complications related to the GI tract. There were two episodes of pancreatitis and one case of lymphatic ascites (oops, nicked a lymph vessel), which required hospitalization.
The registry was closed due to lack of funds.
There was, apparently, one good follow-up attempt by the Iranians as well. Dr. Javaad Zargooshi, who somehow didn’t make it to the big international gathering on donor safety in Amsterdam, had published a paper three years earlier calledQuality of Life of Iranian kidney “Donors” (quotes in the original). It ain’t pretty. The results of a survey of 300 “vendors,” which included interviews and video of living conditions, is a litany of despair. Eighty percent of the people were too poor to get any follow up care. There were broken marriages and lost jobs. There was severe depression and anxiety. Most regretted the decision and would strongly advise others against it.
Zargooshi also says the claim that Iran has eliminated the waiting list is a flat out lie.
Even Dr. Ghods, whose study is the free market model cited in American media, has backpedaled considerably. In 2006, he reported that the reason “no waiting” signs flash outside Iranian transplant clinics is not because of enlightened free market innovation, but because most would-be recipients never live long enough or make it into town for the procedure. “A major cause of this is the many patients who are from villages and small towns and do not receive a diagnosis and are not referred for dialysis… The low prevalence of patients with end stage renal disease results in fewer numbers of transplant candidates. This is the main reason that the renal transplant waiting list was eliminated quickly and successfully in Iran.” In 2009 Ghods wrote about the rickety healthcare infrastructure, lack of expertise and ethical shortcomings in the Iranian program.
When it comes to selling organs, the poor get poorer while the rich get kidneys. Contrary to Satel’s scenario of an unfettered marketplace enabling to you pay off your home improvement loan, a 2007 article in BMJ quotes a U.S. surgeon as saying that “The experience in Iran and elsewhere is that the poor remain poor following a vendor sale and then with one less kidney.”
None of this stopped NPR’s Scott Hensley from filing a piece in 2010 headlined Iran Sets Innovative Example For Organ Donation.
For now, in America, to give a kidney is to give a gift. It may be of more use to a person in kidney failure than a bottle of scotch or a tennis bracelet, but if you give a person one of your kidneys it is still a gift. Even if the person asked you for it, even if it was a stranger.
The language in which a deed is cloaked defines it. Giving someone the gift of life has a lofty, noble ring to it. But risking your life and health for another is not so simple.
Carl Elliott, M.D. Ph.D., is Professor in the Center for Bioethics at the University of Minnesota and a leading medical ethicist. “If a father wishes to donate an organ to a child, or a sister to a brother, we can immediately understand the wish,” he writes. “It arises out of love.” But sometimes the expectation to donate is presumptuous, and a sibling may feel pressure to donate. “Potential donors sometimes feel trapped in a process that they do not know how to stop without jeopardizing their relationships with members of their family or other people,” according to a report by the Institute of Medicine. “When someone in a family has kidney failure,” one advocate said, “at family meetings the expectation is clear that everyone there is a potential donor. Imagine that in a room with 16 and 17-year-olds present.” One recipient was told that she would not even be put on the wait list until all of her family was tested — a highly unethical statement to say the least.
If you strike out with family members, don’t worry. When it comes to asking others to risk their health and safety so that you can improve your quality of life, the transplant industry is not shy about urging patients to be aggressive.
“Recipients were generally unaware that donors could personally benefit from donating and would rather wait for donor volunteers than ask anyone directly,” according to the journal Progress in Transplantation. “Training on how to make the donation request and education about living donors’ motivations for donation and transplant experience could help more renal patients pursue living donation.”
The Center for Bioethics is located in the Boynton Building on the University of Minnesota’s Twin Cities Campus. You can’t see it from the Phillips-Wangensteen Building, where they arrange transplants. Judging by the way university hospital transplant surgeons encourage solicitation of living kidney donors on their website, it appears to be a case of “out of sight, out of mind.”
First off, they advise, you shouldn’t feel guilty. The Tips for helping find a living organ donorpage starts out with a reassurance that you might actually be doing potential donors a favor: “Our studies have shown that kidney donors do well after donation and continue to have an excellent quality of life, similar to or even better than people who have not donated.” (See bullshit studies below.)
Kidney failure patients are told about the many benefits — for them — in getting a live donor. You just need to find yourself one. You can ask just about anyone for a kidney. “Basically any healthy individual with a compatible blood and tissue match may be considered as a potential donor for you. She or he does not need to be related to you in any way. They may be spouses, friends, co-workers, acquaintances, or someone who does not even know the recipient. Complete strangers sometimes volunteer to help someone they hear about in need of an organ. Other people come forward to anonymously donate a kidney to anyone on the waiting list, because they know there is a severe organ shortage.”
Recipients are assured that most people really want to donate a kidney, but they just don’t know it until you educate them. There’s a section on how to approach those of us who are burdened with too many kidneys. “Bringing up the topic of donation: Maybe people know that you are being evaluated for a transplant, but they haven’t offered to donate. They may not even be aware they can donate. Or maybe they just need information on how to proceed if they want to donate.”
If your pals and the people at work start avoiding you, you can always let Twitter followers or Facebook friends know you’re in trouble. The University of Minnesota, which has a blog dedicated to educating donors, did the first transplant from a Twitter follower to a Tweeter in 2009.
You can do billboards, yard signs, or even stand on the corner of a busy intersection with a cardboard sign.
And once you find someone who’s amenable, “An excellent place to start is by providing them with initial information, like the phone number for the Transplant Center.”
We’ll take it from there.
Carl Elliot, over at the Bioethics Center, wonders about the toll on our moral fiber. Are recipients being enabled, emboldened to put other people on the spot? Is it right to do that?
“While it might be admirable to risk harm to oneself, it is not admirable to encourage another person to risk harm to himself for one’s own benefit.” he writes. “Accepting a sacrifice of great magnitude is not mere passive acquiescence, devoid of any moral import. If I allow someone else to risk his life or health for my sake, I am endorsing his self-sacrifice and agreeing to profit by it. If an ailing patient were to take advantage of a healthy donor’s voluntary self-sacrifice, it might well be understandable, but it would not be morally admirable. It would not be the sort of behavior that we would aspire to and want to encourage.” Not in Minnesota, anyway.
The other thing about tapping a stranger for a kidney through public appeals is that it is fundamentally unfair. “The transplant candidate may make a compelling case for the need for a kidney that not only fails to consider donor medical risks, but is worded in desperate and emotion-laden terms that evoke powerful psychological responses among the readers of these messages,” writes a psychiatrist. “In the absence of any preexisting relationship to the candidate, a potential donor has little context in which to evaluate the request and thus may be more heavily influenced by the emotional appeal than he or she otherwise would have been.”
And what of the doctors? When evaluating a person who volunteers to donate an organ, “a doctor is in the position of deciding not simply whether a subject’s choice is reasonable,” Elliot says, “but also whether he is morally justified in helping the subject accomplish it.”
A transplant surgeon is usually a person’s only source of information about donation, but the surgeon is naturally biased toward making the donation happen. It’s what they do for a living. But as soon as a person decides to donate, he becomes a patient, and a doctor is morally obligated to look after the best interests of those in her care. How many doctors who evaluate potential donors ask themselves if the pending surgical procedure is really in the best interest of their patient? How much risk is acceptable for a procedure that has no tangible benefit for a patient?
Cui bono? Transplant centers generate income, prestige, research opportunities and media attention for hospitals.
The solid organ market in America is estimated to be worth well over $10 billion annually.
Part Five: Survivor statistics are “Bullshit”