Back in 2010, I talked about the ethical problems with public solicitations for kidney donors using a real world example*. I discussed the would-be recipient’s (or in this case, recipient’s family) selfishness and sense of entitlement, the complicity on the part of the transplant industry in offering workshops to teach folks how to engage in this sort of emotional manipulation, the lack of informed consent regarding living donation’s risks to the kidney donor, the dangers of traveling to donate a kidney, the family’s lack of candor regarding their loved one’s situation, and the financial implications of the whole situation.
Today, over two years later, the kidney recipient’s older sister left a comment on the original post. Because it appeared on the blog’s old location (which I still maintain for the time being), I thought I’d copy/paste her comment and my reply here.
PS. The timing is somewhat ironic considering I just had to ban a user from the Facebook page for kidney soliciting. Hey, I warned her first.
Hi! I’m Nathaniel’s older sister. You make many good points about how organ donors should be protected against abuse. My primary disagreement is that my mother and aunt would not believe themselves to be maimed. In actuality, while it is true that there may be many long term side effects that are not yet known, there are many medical guidelines to protect patients and the data so far indicates that there are no long term health effects concerning living with only one kidney. In fact, many people are born with only one kidney and are not negatively affected. Nevertheless, there are donors who experience negative side effects after the transplant that could be avoided or alleviated. My family greatly appreciates everyone who has helped during this difficult time, and we’re hoping to find a way to help donors both during the surgery and afterwards.
I realize that it has been a while since you wrote this article, but I wanted to express the other side of the issue. As the ad you linked expressed: it is a very difficult request. We never tried to convince anyone to donate. We cannot help but want to save my brother’s life, but we did not intend to sacrifice anyone else for that purpose. Although I understand how important it is to discuss these issues, next time I hope you will talk to the actual people before exploiting their fears and anxiety for the sake of making a point. Perhaps we could have worded the ad in another way, but we have done the best we could considering the complications intrinsic to the situation. If you are still interested in discussing the finer points of organ transplant, I would be more than happy to continue the conversation. You can contact me at firstname.lastname@example.org.
And here’s my reply:
Actually Katherine, there are no ‘medical guidelines to protect patients’. The US has NO national standards of living donor evaluation, selection, treatment or follow-up, which means that every transplant center can make up their own rules and determine what is or isn’t a suitable living kidney donor. There are no absolute contraindications in the US as it applies to living donation.
To same point, there is no data proving there are no long-term effects to donating a kidney. The Segev and Ibrahim studies that have been touted by the transplant industry and media as proof that living kidney donation is safe are deeply flawed and inaccurate. I have discussed both studies at length elsewhere on this blog; a simple search for either name should produce the posts in question.
Even though the first living kidney donation occurred nearly 60 years ago, THERE IS NO COMPREHENSIVE LONG-TERM DATA on the health and well-being of living donors. This is NOT “exploiting fears and anxieties”; these are the facts. Since 2000, transplant ctrs have been required to post one-year of follow-up on all LDs, and a decade later, they still report 35% per year as ‘lost’ – We don’t know if those folks are alive or dead one-year post-donation.
Meanwhile, Mjoen found that once LKDs hit 60yoa, they begin to die at a faster rate than their gen pop cohort; more so at 70 and above. The Swiss, who have the only living donor registry in the world, revealed that 10 years out, 49% of their kidney donors have cardiovascular disease, 47% are hypertensive, and 45% have Stage 3 or 4 Chronic Kidney Disease. These are countries with universal health care, healthier lifestyles, and far longer life expectancies than the US.
To say that a paid-for public advertisement is not an attempt to ‘convince’ someone to donate is disingenuous. What purpose would it serve otherwise? While the primary intent may not have been to ‘sacrifice’ someone, you were prioritizing your brother’s well-being over that of another human being by asking them for a vital organ. It doesn’t matter if your mother or aunt feel maimed; the absence of valid and reliable data, and lack of informed consent by the transplant industry, coupled with the industry’s promotion of public solicitation, is a violation of multiple medical and ethical standards. Since the industry profits (financially and otherwise) from living donation, the burden is on them to ‘do no harm’ and behave in a medically and ethically responsible fashion. For nearly 60 years, they have failed to do so.
PS. If a person is born with one kidney but has no renal problems, there’s no reason they would ever know they were born with one kidney. It only makes sense that those who experience renal (or other related) difficulties would be aware of their one-kidney status. If studies to the contrary exist, feel free to send to them to me. Otherwise, I will consider that oft-repeated declaration nothing more than an urban legend.
*I linked to the blog’s old location because that’s where the comment appeared.