Loni Wells is desperately ill. The 20-year-old Canadian is among the nearly 3,000 Canadians who require a kidney transplant each year. Suffering from a rare kidney disease called Focal Membrano Proliferative Glomerionephritis (MPGN), Loni required 8 ½ hours of dialysis every day after her kidney’s failed completely in February 2000, and later haemodialysis treatments directly to her heart.
Because of her kidney disease, Loni suffers from low blood pressure and risks heart failure. She has been diagnosed with osteodystrophy, which is similar to osteoporosis and her body is no longer able to metabolize calcium. Loni requires constant medication, suffers from terrible headaches, has difficulty sleeping because of these and other aches and pains, and her body has difficulty manufacturing red blood cells.
Loni Wells suffers like this because of government policy. A misguided and shortsighted policy shared by both Canada and the United States. While nearly 3,000 Canadians languish on government waiting lists for a kidney transplant, where the wait typically stretches for 2 to 5 years, only about 1,100 receive transplants each year. The only option for Loni, her family concluded, was to find a living donor outside her family.
Loni’s father came up with the idea of creating a website to tell Loni’s story and appeal to donors. Over the course of a few days, more than 60,000 people visited the site. And surprisingly 36 complete strangers, motivated by Loni’s plight, some from as far away as Florida, offered to fly to Edmonton and give her one of their kidneys.
But once these potential matches contacted the local branch office of the Stalinist medical system in Canada, their benevolence was brushed away.
Canadian law, like U.S. law, bans the buying or selling of human organs, but doesn’t specifically address donations by complete strangers. The transplant monopoly, however, insists living donors be either family or close friends.
“There has to be an emotional bond, a close relationship to proceed to any further steps,” explained Ed Greenberg of Capital Health in Edmonton.
And Loni continues to suffer.
“Oh, it crushes my spirit, it makes me mad,” said Wells. “Every day I have to get up and I don’t feel good, and I’m not eating. Dialysis takes this big chunk out of my life.”
The problem is that in Canada only the spouse or another family member could successfully donate organs. The government defends this rationing policy by arguing that donors face health and psychological problems and the uncertainty regarding the motivations of organ donors/sellers would place an ethical burden on the standards of health professionals.
However, in the past ten years, due to the continuing shortage of organs caused by the state’s rationing policy, it became possible for close friends to donate organs. But even then, local government boards of health evaluate the friend to determine if he or she meets the definition of a close friend out of a misplaced fear that this situation could generate discrimination or abuses. It’s believed that certain people could be motivated to give because they’re touched by the age of the patient, his or her place in society or even physical attractiveness or other “unearned” benefits.
A common concern among defenders of the rationing plan is that allowing living donations would open the door to queue-jumping and short-circuiting the waiting list, thereby allowing Loni or anyone else to obtain a kidney or other organ ahead of more needy recipients. But is it ethical to deny a young woman a kidney when she and potentially others through her family’s efforts could readily attain one? How is it ethical to continue to endanger her health and life and prolong her misery?
The fear is that laissez-faire with organs would allow the strong to prey on the weak, a myth a professor interviewed by the CBC raised again: “The concern has always been a subtle form of coercion might exist,” said Prof. Tim Caulfield, research director of the Health Law Institute at the University of Alberta.
But what of the subtle coercion that exists on family members who feel obligated to donate an organ out of familial duty rather than genuine charity? Why is that coercion not as insidious as what is presumed to exist, but of course does not, in market transactions?
However, it appears that Loni’s unique appeal for help may be a crack in the foundation of the cartelization and monopolization of organ donation. A transplant surgeon, Dr. Philip Belitski, openly questioned the lack of living donor opportunities.
“As the need increases, it’s apparent the need will not be filled by donation from non-living people.”
“We need to look more seriously and widely at the potential for living donation,” added the chair of the Canadian Council on Donation and Transplantation, in Halifax.
And as the CBC reports, as kidney transplants have become safer for both donor and recipient, studies suggests more people are willing to give a kidney to a complete stranger.
Surely then, the next step is to coordinate supply and demand, to connect buyers with sellers, through the superior medium of market prices, rather than the current method of Soviet-style bureaucracy.
Luckily for Loni, she has found a relative who has so far cleared the early testing for compatibility. And the Wells family is forming the Wellspring Foundation, an organization that will take the lead in forming and will push for the creation of a federal living donor registry of individuals willing to give organs to complete strangers.
In time, perhaps the market will take over to the benefit of both donors and recipients.
