Ethical Considerations Living Donor Research Living Donor Risks Living Kidney Donor

“Autonomy” doesn’t mean what you think it does, transplant industry

I stopped reading articles claiming to be about the ‘ethics’ of living organ donation long ago, because they all justify the systemic neglect and harm of living donors by citing “patient autonomy”. They conveniently forget that our greater responsibility is not to hurt someone: not if they put themselves in a position to be hurt, and not even if they “consent” to being hurt. It is simply something that an ethical person does not do if it is avoidable. And if it is unavoidable, the obligation is to keep the harm to a bare minimum.

Today I ran across this study by members of the transplant industry, who would, if asked, state that they care very much about donor safety, that they do not, in any way, prioritize the recipient over the living donor.  Yet, their actions in this study, and its conclusion, advocate sending “educators” to would-be recipients’ HOMES and soliciting – oh, er, I mean educating –  their friends and families about why they should donate a kidney to their sick loved one.




Yes folks, this is brokerage pure and simple. Transplant surgeons and transplant centers don’t get paid unless there’s an organ to transplant. Since deceased donors don’t appear on-demand, what’s a starving hospital to do?

Find more living donors!

And what better way than by exploiting people’s personal relationship under the guise of “education”, spinning a yarn regarding the horror of kidney disease and dialysis while hyping the miracle of transplant. If necessary, sprinkle in some living donor risk minimization, but only if someone asks. Otherwise, avoid that topic completely. All we need to do right now is to convince – er, persuade – er, no I mean EDUCATE – someone into that first blood draw.

After all, once we tell ’em they’re a match, we’ve got ’em hooked.


Worst part is, they don’t even have the decency to be ashamed of themselves. They’ve convinced themselves they’re doing the best thing for their patients. Problem is, living donors are patients too.


Rodrigue JR, Paek MJ, Egbuna O, Waterman AD, Schold JD, Pavlakis M, & Mandelbrot DA (2014). Making House Calls Increases Living Donor Inquiries and Evaluations for Blacks on the Kidney Transplant Waiting List. Transplantation PMID: 24825528

Advocacy Living Donor Misinformation

Media Coverage of Living Donation

In a group (supposedly) for living organ donors, a person who serves as a kidney broker*, helping would-be recipients locate willing stranger donors, deluges the membership with the ‘happy’ donor stories so prolific in the news. One of the more recent quoted the kidney saying that donating ‘was no big deal’. I remarked with these stories do a huge disservice to all living donors, especially those who experienced problems post-donation.

Naturally, another person took issue with that, stating that the happy donors ‘are entitled to have their stories told’. When I pointed out that these stories are planted by the transplant centers to further their agenda of promoting living donation – well, let’s say she didn’t like that much either.


So I decided to conduct a brief experience: inventorying the US media’s coverage of living donation** as it comes through my google alerts. I’ll note –

A.  if the story is a happy one,

B. if the story contains a quote from a transplant professional (especially someone from the hospital, as opposed to a local OPO or kidney disease organization),

C. if the story addresses the possibilities of risk/complications in any way (especially if a statement relies on Segev or Ibrahim to mention LD life expectancy, or rates of kidney disease; spare kidney/live with one kidney; minimal risks/relatively safe; false info),

D. if the story gets any of the facts wrong

E. If the story promotes a specific transplant center

F. and if the story is pimps for money (donations, fundrasier).


July 18, 2013

1. New Jersey man’s high school crush to save his life with a liver donation: Geeky guy has crush on cool girl in high school. They reunite at 25-year high school reunion, get married two months later, and she gives him 2/3 of her liver.

“There is an up to 25% chance that she will get complications from the operation.”   No, there is a 40% chance of complications, says pretty much everyone. Oh and deaths are inevitable. The reporter gives no source for the statistic.

At the end of the story is a link for folks to donate to their medical bills.


July 19, 2013

2. Former Superintendent Gets New Kidney: Story centers on Cincinnati kidney transplant recipient’s life, with mention of his anonymous living kidney donor who “for now” wishes to remain anonymous. IOW, completely recipient-centered.


3Live liver donors could ease U.S. organ shortage crisis, adopted siblings show. Contains quote from an Organ Procurement Organization (OPO – the regional organization which is paid to allocate deceased donor organs) which the writer calls an ‘advocacy agency”. Quotes from a transplant surgeon. Promotes specific transplant center’s live liver donor transplant program.

“Overall, the risk of early death among live liver donors is about 1.7 cases per 1,000 donors, according to a 2012 paper led by Dr. Dorry Segev, a transplant expert at Johns Hopkins Medicine. There have been four deaths of living liver donors among the more than 4,300 transplants performed since 1999, according to OPTN.”

What is the definition of “early death”? Any death of a liver donor prior to what would be expected of a cohort-matched non-donor? Because no such data exists.

Also, there is plenty of evidence to prove that more than four deaths from live liver donation have occurred in the U.S. Why OPTN continues to perpetuate this lower, erroneous statistic is something only they can answer.

I also find it interesting the writer mentioned Mike Hurewitz’ 2002 death, but said nothing about Ryan Arnold and/or Paul Hawkes, both in 2010.


“For comparison, OPTN officials estimate that there were 30 deaths of living kidney donors between 1999 and 2011, out of more than 83,000 live donor transplants.”

Except that a slide from an official OPTN presentation states that 44 living kidney donors died in the U.S. in 2000-2009 within 12 months of surgery.


But both siblings are back to work and have resumed normal lives with their spouses and kids. Kilcup ran a half-marathon within three months of the swap.


Now, she’s become an advocate for live liver donation.

Absolutely no mention of the 40% live liver donor complication rate.


July 21, 2013

4. Wife to give husband a kidney. Despite the headline, the article details the husband-recipient’s travails with health issues and providers which eventually lead to the need for a kidney transplant. The wife, his soon-to-be living kidney donors, is mentioned as the “happy ending”.

Mentions the transplant center where surgery will take place.

Nothing about risks of living kidney donation.


June 22, 2013.

5. NINTH CIRCLE Hosts Benefit Show To Find Kidney Donor. Just what it sounds like, a Los Angeles band is having a show to “get as many people screened to become a donor and ultimately find someone who is a match for…” a fan.

I wonder if any of the band members have stepped up to be tested?

(It probably goes without saying, but since that’s the purpose of this post, I will: not a darn thing about process or risks of living kidney donation)


June 24, 2013.

6. Twist helps kidney donor save dad, husband. See my rundown here (yeah, this one was so bad it warranted an entire post of its own). No talk of the reality of living donation at all. University of Maryland Medical Center’s publicity for their paired donation program.


7. Social media helps link kidney donor and recipient with rare blood type. Fluffy article about public solicitation for a living kidney donor. No mention of anything related to living donor risks, process or otherwise. The procedure hasn’t happened yet.

But it did pimp a fundraiser (and link to it).


July 25, 2013.

8. Social media helps link kidney donor and recipient with rare blood type. What it sounds like. One sentence referring to recipient’s insurance paying ‘most’ of the costs, and LKD taking time off work after donation. Nothing else about risks, complications, or consequences.

Oh and a link to a fundraiser.


9Spokane pastor’s decision to give kidney leads to second match. Promotion of living donation via “God”.

Quote from transplant center’s Transplant Services Director regarding ‘advantages’ to living donation (for recipients, of course).

Quote from LKD about testing process, and early post-donation fatigue.

Nothing about risks of living donation.

Promotion of Sacred Heart’s program via living donor transplant statistics.


10. Facebook helps man find new kidney, hope for future. Professor’s kidneys fail, he has a transplant. Almost two decades later, he’s diagnosed with cancer [<- what the article doesn’t say is that anti-rejection meds greatly increase a person’s risk of cancer]. After the cancer treatment, he needs another transplant [<- second omission: certain drugs used in chemotherapy are nephrotoxic, meaning they can damage kidneys, causing them to fail.] One of his students solicits for him, and a woman responds and gives him kidney.

– many sentences about student’s new project to help other folks find kidneys – IOW promotion of living donation with no regard to donor protection. 

– Quote from transplant surgeon about the ‘need’ for kidneys, cites inflated wait list.

– surgeon also repeats lie from Segev & Ibrahim about living kidney donors’ lifespans.


July 27, 2013.

11. Man gets kidney from daughter, then granddaughter.

– Misconception spread by LKD grandaughter: “you can live with one kidney, so why not?” [How about this and this and this and this and this for reasons ‘why not’?]

– pimped specific transplant center.

– Quote from recipient which is erroneous and dangerous: “Becoming a donor is really not that dangerous, and the good it does, really outweighs the little risk,” Willie West said.

– no mention of living donation’s complications or risks


12. Local Teen Needs Kidney Transplant. Solicitation for adolescent boy in need of a kidney.

– no factual information regarding transplant, living donation process, etc

– Links to the solicitation websites.


July 28, 2013.

13. Families find hope on social media for relatives needing organ transplants. Recipient-centered article about soliciting using social media to find a living kidney donor. Nothing about the risks or process of living donation at all.


July 29, 2013

14. Donor found for 14-year-old Ware boy with kidney failure; community rallies support. Article centers around 14-year would-be recipient.

– Brief mention of potential living donor.

– ‘passed array of testing’

– no mention of complications, risks, etc.

– promotes fundraiser for recipient


15. Kindness of a stranger: Woman donates kidney to her customer.

– mentions specific transplant center

– detailed info about recipient’s kidney disease

– lots of “God-talk”

– small paragraph about evaluation process

– Screwed up the mortality statistic. Says “0.6 percent out of 10,000 donors”. It should say 0.6% OR 6/10,000.

– Also says “all costs [for donor] were covered by [recipient’s] insurance” which is untrue. Travel, lodging, food, childcare, lost wages, mental health treatment, etc. are NOT covered by the recipient’s insurance.

– Refers to the procedure as ‘minimal’  <- WRONG.

– No mention of other living donor risks or complications.


I was out of state for a week so I fell way behind on my google alerts. I had all intention of catching up and including them here, but well – I’ve got a full schedule these days. I suspect, however, I’ll be revisiting this topic at a later date.


In conclusion:

15 articles

15 ‘happy’ stories

10 erroneous statements or facts (including one regarding the wait list)

13 omissions of donor complications, risks or consequences

5 quotes from ‘experts’

6 transplant center promos

5 fundraisers



PS. Google alerts also delivered the following:

– transplant center video or webpage on living donor transplant – 7

– surgical, medical, technical topics – 8

– and multiple articles from outside the U.S.



*I’m sure she would argue with my characterization as a kidney broker, but that is indeed, the role she plays.

**including live liver donation, although there should be far fewer articles pertaining to that

Advocacy Living Donor Misinformation Living Kidney Donor

“Give Us Your Kidneys!” Says the Sunshine State

LKD wordle-1Back in 2010, California’s legislature bought into Steve Jobs’ charisma and passed the nation’s first living kidney donor registry. Not the type of registry we donor activists are fighting for, the type that would collect data about living donors’ health and well-being after donation, but a government approved list of folks who would be willing to donate a kidney to a stranger.

The law gave no thought to the lack of protections, standards or data on living donors, and made no provisions for ensuring the prospective living donors were free from coercion, not being paid, or otherwise preyed upon. Nope, they ignored the fact that Steve Jobs used his money and influence to cut in line to get a liver(1), and decided that California’s healthy citizenry should be lined up like some science-fiction story to be used as medical supply for those diagnosed with end-stage renal disease*.

So the following was inevitable. A group has formed, comprised of “representatives of 12 California kidney transplant programs” and “the state’s four organ procurement organizations”(2) to persuade California residents (at least I think it’s only for CA’s population; could non-CA people sign this registry?) to give a up a kidney**.


The website has a page dedicated to ‘educational videos’ so I watched the “Riskes [sic] to Living Donors” video and found it filled with half-truths and hand-picked happy living donors to further the propaganda – er – advocacy*.

Here are my thoughts, in order of how it appears in the video:


1. “10,000 laparoscopic procedures done yearly.”

This is a completely misleading statement. Approximately 6000 living kidney donations are done in the U.S. every year. What constitutes the other 4000 – kidney removals of the non-donor type? A living donor nephrectomy requires much more surgical skill than a non-donor nephrectomy, because a live donor nephrectomy necessitates the kidney to be removed unharmed, plus the addition of renal vessel for re-implantation into the recipient. A non-donor nephrectomy isn’t concerned about the state of the removed kidney because it will be thrown away.

A steep learning curve for the laparoscopic procedure is well documented, meaning that the more experienced the surgeon, the less complications for the patient. Just because thousands are performed every year does not mean a particular surgeon is experienced in the approach.


2. “3 to 6 months after the donation…”

Kidney donors have to live with that one kidney FOR THE REST OF THEIR LIFE, not just “three to six months”. We know that kidney function declines as one ages. Telling a prospective kidney donor that they’ll be in the “low of normal range” of kidney function in 3-6 months means very little for the kidney donor in 20, 30 or more years. (Not to mention that some LKDs do not end up in this so-called “low range of normal”)

Didn’t I just post about this yesterday?


3. “Diseases attack both kidneys” so donating one “didn’t make me think I would be at higher risk for needing a transplant”. <- from a LKD

Folks get cysts or tumors on one kidney and not the other, so I’m not sure what this “both kidneys” business is about. For the sake of argument, I’ll assume she’s referring to chronic kidney disease in the broadest sense.

Anyway, we have NO evidence one way or another that donating does or does not increase one’s risk of kidney disease or kidney failure(3). As has been stated, because end-stage renal disease appears in one’s 50-60s, it is impossible to calculate a 25 year old prospective living donor’s lifetime risk.

Nearly 400 living kidney donors have been wait listed for a kidney transplant since 1994, a number that grew 13% in one year. From that, we can safely infer that additional living kidney donors with end-stage renal disease are choosing dialysis over transplant, or have chronic kidney disease but haven’t reached kidney failure. What any of this has to do with the video’s statement is beyond me.


4. “Insurance covers donor work-up and surgery”

It should also cover post-donation complications or mental health treatment, but we know the problems living donors have had with billing for those things… Of course, the video never uttered the words ‘complications’ or ‘depression’, so…


5. The transplant center knew “Which was the best one [kidney] to take” <- said by a LKD

Wait- what??? The left kidney is taken by default, unless there is a reason not to, because the left kidney is more easily retrieved. Yes, sometimes one kidney is significantly larger than the other, and in which case, they would take the smaller of the two, but there is no way to map the nephrons or function capacities of each kidney individually, and determine which is ‘better’ for the recipient (or donor).

What was this living kidney donor told that made him think the physicians had this kind of power?


6. “Women can have children [post-donation]”

But it IS higher risk. A living donor’s remaining kidney hyperfiltrates/hypertrophies. A two-kidneyed pregnant woman’s kidneys hyperfiltrate/hypertrophy. A living donor’s one kidney, because is already at full capacity, cannot adapt to accommodate the increased strain of pregnancy. What this means is largely unknown because no one has bothered to study it in detail. The few articles published on pregnancy post-donation, and on pregnant women with kidney disease, show higher maternal and fetal risks. So yes, it is possible, but it is not as low risk as it would’ve been prior to donation.


For a video supposedly about living donor risks, absolutely nothing concrete was actually said about them. No mention of the 4.4 living kidney donors that die every year in the U.S within 12 months of donating. Not a word about the 20% who experience complications, or the 20-30% who suffer from depression, grief, anxiety, anger or PTSD. Less than nothing about the lack of data, standards or protections. If the video is to be believed, kidney donation is about as dangerous as a hangnail removal. Which makes the video, and this group who espouses it, dangerous.


Worse is that one of the people identified in this video is the co-chair of OPTN’s living donor committee. Not only is she NOT a living donor, she’s a well-established recipient advocate. In other words, her goal is to get kidneys for folks with renal disease, not ensure living donors’ health and well-being. Because of that, she never should have been appointed to the LD committee in the first place(4). Her involvement in this project is just proof that living donor safety is low on her priority list*.


PS. I scrolled some of the other pages on the website and not surprisingly, the text is overwhelmingly pulled from UNOS website. A whole 274 words is devoted to “medical and psychological risks”.


(1) Then died a year later, provoking debate on whether or not he should’ve gotten a liver transplant in the first place.

(2) The folks that financially benefit from transplants. Last time I knew, OPOs were prohibited from participating in anything living-donation related. So much for governmental oversight.

(3) Saying that a living kidney donor’s risk of kidney failure isn’t higher than the general population is NOT the same as saying that living kidney donation doesn’t increase one’s risk.

(4) Which should tell you something about how OPTN works


*Some days I lose my patience and refuse to pussyfoot around.

**I thought long and hard about including a link to the site and video, because I’m big fan of source material, but they really don’t deserve any more page views.

Ethical Considerations Living Donor Misinformation Living Donor Research Living Donor Risks Living Kidney Donor

If Every Transplant Center Says It, It Must Be True

Subtitle: Or it isn’t, but they say it anyway…


Recently, Google Alerts dropped the University of Wisconsin Medical Center’s “10 Reasons Why You Should Be a Living Kidney Donor” in my lap (or inbox). The exaggerations and misleading statements on the page are worthy of multiple blog posts, but right now I want to focus on the most egregious:

You can be assured, living donor outcomes are strong. Living donors go through the donation experience without experiencing any decrease in lifespan and they do not have a higher rate of kidney failure.


Here’s the problem: the U.S. has no valid comprehensive data on living donors. Since 2000, OPTN, the membership organization that manages the U.S. transplant system, has required transplant centers to report one year of follow-up on all their living donors. But nine years later, their Consensus Report of the Living Donor Data Task Force  called the resultant database ‘woefully incomplete’ and ‘useless for research or making conclusions about living donor safety’. In late 2011, they again admitted, the LDF [living donor followup] forms were too incomplete for analysis

So if we don’t have one year of decent data, how can transplant centers make assurances about a living donor’s lifetime? Well, we have the press barrages for two different studies to blame for that.


The first is John Hopkins’ promotion of Segev’s “landmark study”. The press release claimed that living kidney donors “are likely to live just as long as” non-donors. The study, however, only looked at kidney donors up to 15 years post-donation (median 6.3 years). If the average living kidney donor was 65 years old at the time of donation, the press release might have some credence. But they’re much younger: from 35 years of age in 1988 to 41 in 2008. From that perspective, discovering the “risk of death [at 56 years old] was no higher for live donors” isn’t terribly comforting. Taking that same measure when the kidney donors are 78 years old, the average U.S. life expectancy, would be much more significant.

Our second author, Ibrahim, from the University of Minnesota Medical Center, seemingly forgot “how healthy” living kidney donors were and compared their expected death rate to that of the general population. His conclusion, that kidney donors have a death rate “similar” to a group “with coexisting medical conditions (e.g., heart and kidney disease) that would make them ineligible for kidney donation”, is far different than saying living kidney donation doesn’t decrease a person’s lifespan.

Ibrahim’s “ground breaking report” is also responsible for the statements regarding living donors’ future kidney health. The kidney donors at the single transplant center he examined underwent dialysis at a lower rate than the general population. The media attention failed to mention that during the evaluation process, prospective living kidney donors are screened for diabetes and hypertension, the two biggest causes of end-stage renal disease (44% and 30%, respectively). A lower rate of kidney failure than the general population is expected.



Unfortunately the University of Wisconsin Medical Center isn’t alone in spreading these “Living kidney donation doesn’t affect your life expectancy and/or kidney disease risk” mischaracterizations (the following are only a sample):


The transplant industry has gone out of its way to tout living donors as healthier than the general population. If removing a kidney from a healthy person produces an individual with risk comparable to the general population (as Ibrahim and Segev imply) then living kidney donation does the opposite of what the above transplant centers claim. It actually increases a donor’s risks of kidney disease and shortens their life spans.

Because living kidney donors are NOT the general population, at least not before they take our kidney.



ETA July 2014: Two recent studies have indicated that living kidney donors experience 8-11x increased risk for end-stage renal disease as compared to a well-matched cohort.

Ethical Considerations Living Kidney Donor

Public Kidney Donor Solicitation Redeux

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


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.