Informed Consent Living Donor Misinformation Living Donor Protections Living Donor Research Living Donor Risks Living Kidney Donor Registry

Kidney Donors’ Risk of End-stage Renal Disease – AGAIN

Recently, a media blitz heralded the arrival of an end-stage renal disease prediction calculator for potential living kidney donors, backed up by a prestigious publication in the New England Journal of Medicine. I glanced at the study, noticed that it used the “woefully incomplete” and “useless” OPTN database, and it only pulled living kidney donors from 2005 onward. Which is not good.

You see, OPTN has been collecting (inefficiently) identifying information (aka social security number) on living donors since 1993. The Secretary of Health mandated one year of follow-up on all living donors in 2000. In addition, prior studies indicate that living kidney donors who progress to kidney failure will do so 17-20 years post-donation. These facts led me to believe that the researchers were more interested in minimizing the risk of ESRD for LKDs rather than warning us of our true probability.

And since I have written about this very topic many, MANY times in the past 7 years, I have no inclination to rehash myself. Fortunately, Steiner did much of the work for me in his editorial commentary on the published paper.

However, a recent 7.6-year study in the United States showed that the incidence of ESRD was 8 times as high among donors as among well-selected nondonor controls.2 A similar 15.2-year study in Norway showed that the risk was 11 times as high.3 The magnitude of these relative risks has been debated, but when predonation risks of ESRD are multiplied by the relative risk of donation, significantly greater absolute postdonation risks are predicted. However, the absolute rates of ESRD were low in both studies, which reinforced the prevailing “low risk” characterization of donation..

To translate a smidge: Two prior studies (which I’ve written about here) have found that living kidney donors have an 8-11x increased risk of kidney failure as compared to their healthy, matched, two-kidneyed cohort. But the pro-living donation advocates don’t like using those numbers because they’re – well – scary. Instead, they squawk about “absolute” risk, meaning that even if donating raises the chance of an individual LKD progressing to kidney failure, the incidence of ESRD in living kidney donors is low so – you  know – don’t worry too much about it.
For example (and I’m pulling these numbers out of the air here), say there’s a 4 in 100 chance of developing a type of cancer, but that eating garbanzo beans increases that risk 50%. Yikes, right? In ‘absolute’ terms, that’s still only a 6 in 100 risk, which is like ‘meh’, bring on the garbanzos!

But if we were talking about smoking? If the same numbers applied, would you pick up the habit? Hmmm…

[Note: see this nice explanation of these statistical maneuvers here]
He goes on to say that the low estimates in the prior studies “may well have been underestimated” (In other words, the true risk is higher). Why?

…approximately 90% of cases occur after 44 years of age, and half the cases occur after 64 years of age.5,6 Many diseases that will cause ESRD in later life will not be present in young candidates, and screening will not detect them.

He uses diabetes, which accounts for nearly half the kidney failure currently seen in the US, as an example:

Currently, postdonation diabetes is poorly predicted in donor candidates, even with the use of focused, traditional criteria8 rather than the nonspecific risk factors used in the current study. Furthermore, ESRD would not have developed in any patient with classically progressing diabetic nephropathy during the study interval.

  1. The researchers included generic risk factors which have limited applicability. When I was being evaluated as a living kidney donor, I asked the nephrologist about my recipient’s expected graft survival. He stammered and said “the average graft survival is…”. Well, I didn’t want to know the “average” of every recipient under all circumstances, I wanted to know specifically about my sister. Potential living kidney donors feel the same way about their own kidney health too.
  2. The six-plus years this study captured is simply NOT ENOUGH TIME to know the true incidence, prevalence and risk of end-stage renal disease for kidney donors. Following them for such a short period results in a gross underestimation of disease progression.

It also allows the transplant industry to keep reassuring the public about living donation’s safety, all while emphasizing the need for living donor organs. They appear to actually care about living donor safety and well-being,when recent and distant history shows they clearly do not.

Unfortunately, I think that’s the point.
Grams ME, Sang Y, Levey AS, Matsushita K, Ballew S, Chang AR, Chow EK, Kasiske BL, Kovesdy CP, Nadkarni GN, Shalev V, Segev DL, Coresh J, Lentine KL, Garg AX, & Chronic Kidney Disease Prognosis Consortium (2015). Kidney-Failure Risk Projection for the Living Kidney-Donor Candidate. The New England journal of medicine PMID: 26544982


Steiner, R. (2015). The Risks of Living Kidney Donation New England Journal of Medicine DOI: 10.1056/NEJMe1513891


Informed Consent Living Donor Research Living Donor Risks Living Kidney Donor

Living Kidney Donation’s Medical Risks Are Unknown, says Segev

Dr. Dorry Segev is a transplant surgeon and researcher at Johns Hopkins with many living kidney donation publications on his resume. At the American Society of Transplant Surgeons Winter Symposium 2015, he gave a presentation entitled “Long-Term Living Donor Outcomes; When to Say No“.

If you have an extra 20  minutes, I suggest sitting down and watching the video, which contains Segev’s audio and powerpoint slides. He discusses the study he authored in 2010, which has been dissected ad nauseum, and a more recent study he co-authored with Muzzale, which stated that living kidney donors have an 8-11x increased risk of end-stage renal disease as compared to their well-matched, two-kidneyed counterparts.


If you’re only interested in the good parts (aka the reason behind the blog post headline), confine yourself to the first minute and a half, wherein Segev says:


“We do about 6,000 of these a year, and we still have actually very little understanding of the medical risks.”

“The old school was we just told people, ‘Your risk of ESRD after donation is no higher than that of the general population.’ I mean that’s completely stupid.  That’s like basically saying, ‘Compared to obese, hypertensive, poor health behavior America, you won’t be that bad.  We don’t know how bad you’ll be, but don’t worry, it’s no higher than the general population.’  But we use this as sort of like this reassurance to donors.  I mean it’s completely scientifically stupid.”

“To quote the past ASTS past president Goran Klintmalm …’This is bullshit.'”


Can we please, pause for a minute and soak this in?

For 60 years, the transplant industry has been telling the public that living donation is safe, minimal risk, nothing to be concerned about, no danger here, etc. etc. etc. to infinity and beyond. They’ve separated us from other populations who have kidneys removed, claiming that we’re “different” because we’re “healthier”, and that even though people with isolated renal tumors should only undergo partial nephrectomies to preserve their nephrons, living donors are apparently some unique species with super-special nephrons that don’t need saving…..

It’s just so – ridiculous.

And now we have the first admission that it’s total bullshit.


Unlike the grandstanding that took place when Segev published his “living donors don’t die earlier” study in 2010 (which didn’t really say that, by the way; that’s just what the *media* claimed it said), this profound revelation won’t even be a blip on the media’s radar screen. Because who, outside of the transplant industry, pays attention to what’s said at these stuffy, boring conferences? Hell, half of the transplant industry probably skips it too.  While I wish I could say they’ll stop lying to potential kidney donors (and the media, and the public) and admit that yes, there is risk to donating, and no, we don’t know what that is, I know better. After all, this is the same industry that ignored repeated letters from the FDA about not using the Hemolock clip, which resulted in multiple living kidney donors deaths and injuries. Too many of them, too often, refuse to let facts get in the way of their opinion.

I guess we’ll have to do it for them. Bookmark this post. Anytime you see an article, or a post on a forum/group that perpetuates the myths, just send them this.

And let me know what happens.


Advocacy OPTN

Living Donor Webinar July 17

If you want insight into transplant professionals and OPTN’s attitudes, perspectives, and current goals regarding living donation, register for this free teleconference. Live tweet, take notes, write a blog post, contact OPTN’s President afterward with any concerns…


Region 10 Educational Webinar Series – Living Donation

July 17, 2013

12:00pm ET



Ensuring Informed Transplant Decision-

Making Through Improved Dialysis Patient Education

Amy Waterman, PhD

Barnes Jewish Hospital


Choosing to Help – What compels such compassion for living organ donation?

Sarah Seaton, Chair, Nursing

Breckinridge School of Nursing


Live Donor Champion: Separating the Advocate from the Patient

Dorry Segev, MD

John Hopkins Hospital


Please use the link below to register for the meeting. Once registered, you will receive a confirmation email containing the live meeting and teleconference information for the meeting.

Please note that the link you receive is valid for ONE entry into the live meeting. If multiple individuals at your institution wish to participate, please view the live meeting together or register separately to receive individual log on information.

In order to ensure good sound quality, all participants will be required to dial into the call using the teleconference information provided in the confirmation email. Once logged into the live meeting you will receive a PIN that will need to be entered when calling to participate in the Q and A portion of the call. If you will ONLY be participating by teleconference, you may enter the “#” sign when the PIN number is requested.

Registration Link:

ACOT Living Kidney Donor

Living Donors, Paired Kidney Donation, & Funding, Part III

See Parts I and II to keep up with the conversation….


Segev and the Kidney Paired Donation Workgroup detailed all the aforementioned supposed ‘extra’ expenses to KPD to set the foundation for their big request: money. And not just any money, but a ‘fee’ paid by the federal government, Medicare and Medicaid, and private insurance companies (which really means us, the consumer). They envision another contractor like OPTN or SRTR, only this one will administer a national kidney paired donation program.

The reason Segev and company need to ask for the above is because when NOTA 1984 established OPTN, a taxpayer (and private insurance company) funded organization, it was to manage a national DECEASED DONOR transplant system. Not living donation. And not living paired donation (such a thing didn’t exist then). At the time, the various facets of the federal government believed that if deceased donation was maximized (which hasn’t happened), the need for donor organs would be met. But they also knew it would be squicky for the government to financially support a transplant system that involved taking major organs from healthy, living people. Especially when we had no idea how taking a kidney from someone affects their health in the long-term.

So proposing that the living, breathing people involved in kidney paired donation be treated like cadaver donors is a bit – well – unsettling. To be sure, a couple of voices in the room (on the phone?) were squawking that such a thing was ‘allocation’ and well within the bounds of OPTN’s purpose, but nowhere in NOTA or any other piece of transplant legislation does allocation refer to living donors. Even though OPTN has decided that they can and will allocate non-directed donors, that doesn’t mean such a practice couldn’t be legally challenged. It just never has.

But I was bothered by the kidney paired donation workgroup’s recommendation that the public support a national KPD program for another reason.

Currently, living kidney donors comprise approximately 6000 transplants every year in the US. This means that since 1988, nearly 117,000 people have compromised themselves to help a person with end-stage renal disease*. During all that time, the federal government (aka the public) has funded a 10-year registry for transplant recipients, to track their health and well-being. But it wasn’t until 1994 that anyone collected any identifying information on living donors at all. And i it wasn’t until 2000 that the Secretary of Health mandated that transplant centers report one-year of follow-up on all their living donors.

A transplant center was only required to report a living donor’s status to receive credit from OPTN, but a presentation at the summer 2012 ACOT meeting revealed that 35% of kidney donors were still marked ‘lost’. One year post-donation, U.S. transplant centers had no idea if more than one-third of their kidney donors were alive or dead.

The transplant industry’s collective excuse for this non-compliance and negligence was that it was an ‘unfunded mandate’. They simply had no money, they insisted, to make sure that living donors, the people who provided the treatment for their end-stage renal disease patients and made their surgeons and facilities a tidy profit meanwhile, were cared for properly.

Yet not once in those 12 years did a single transplant center or physician suggest that public money be used to ensure transplant centers’ compliance with the mandate. No one has ever suggested that the same infrastructure used to track and collect data on transplant recipients be applied toward living organ donors. By all appearances, locating funding for a living donor registry has never, ever been a consideration.

But they have no problem soliciting the federal government and the American public for money to run a program that has, so far, resulted in a maximum of 600 transplants per year.


I wish I could say that was the only insult the workgroup’s presenters threw in living donors’ faces.


Stay tuned for Part IV (the last one, I swear!)



*there were living kidney donors from 1954-1987 but those numbers are estimates and I don’t have them memorized or on-hand.



ACOT Living Donor Risks Living Kidney Donor

How Kidney Paired Donation Affects ALL Living Kidney Donors

If you haven’t already, you’ll want to see my prior post wherein I set the stage for why transplants aren’t necessarily cheaper than dialysis. (and PS I failed to mention the growing number of older folks being diagnosed with end-stage renal disease who are choosing not to have any treatment at all.)

Dissecting that explanation matters because as of this past week’s ACOT meeting, a practice that is supposed to be cost-effective (kidney paired donation) suddenly has expenses above and beyond directed living kidney donation.

See slide below:

KPD costs


According to the kidney paired donation workgroup, which includes Dorry Segev, whom I’ve written about before, the above are fees specifically related to kidney paired donation. My observations/explanations:


1. Many would-be kidney transplant recipients have multiple prospective living kidney donors, especially those that publicly solicit (with encouragement from transplant centers). This not something unique to kidney paired donation.

2. NDD = Non-directed donor. The few folks that present themselves as living kidney donors without an intended recipient. The transplant centers tend to use them in chains rather than to facilitate just one transplant – more bang for the buck, I guess? I’ll give them this one.

3. This refers to the fact that while blood type and HLA (antibody) testing only needs to happen once, every possible donor-recipient pair must be checked for sensitivity. In other words, drops of the prospective living kidney donor’s blood must be mixed with the recipient’s blood to see if the recipient’s antibodies will attack it as foreign, signifying the possibility of rejection. This is definitely an added expense

4. Aren’t there already administrative costs to running a hospital? A transplant program? A living donor transplant program? Without some real stats in front of me, I’m not confident running pairs/chains really adds to the burden.

5. This assumes an outside entity will coordinate the entire kidney paired donation program, which would, of course, require employees, infrastructure and the like. Theoretically more than what already exist in the various KPD programs already functioning around the country. Again, debatable.

6. If the kidney donor and recipient are not in the same facility, the kidney must be shipped to the recipient. Except, of course, that deceased donor organs are shipped all the time. And that sometimes one-to-one directed living donor transplants are done at different hospitals too, necessitating a traveling kidney. <- Of course, this is one of the reasons why transplant centers encourage kidney donors to donate at the same center as the recipient. Some of them flat-out lie and tell the LKD it’s not possible to have the surgeries at different hospitals.

7. I’m sorry, what? Surgeons performing the live donor nephrectomy get paid. Are they insinuating that a surgeon should get paid more for participating in a swap/chain? I don’t understand this at all.

8. Yes, because living donors engaged in a traditional directed donation NEVER have expenses related to complications or follow-up.


Tune in to Part III for a prominent appearance by #8…