Advocacy Living Kidney Donor

Not Easy to Sue For Malpractice

Propublica’s long-term investigation into patient harm has produced an article about the difficulties in obtaining a malpractice attorney. The story revolves around living kidney donor Ernie Ciccotelli.


“Ciccotelli, 58, donated his kidney in 2006 at Beth Israel Deaconess Medical Center in Boston…within days he suffered nausea and intense pain in his gut, then chills and a steady greenish drainage that soaked his bandages and shirts.

He had an infection plus an additional complication: His intestines had knuckled under beneath his skin. Ten days after the transplant, doctors operated again, removing 15 inches of dying intestine from Ciccotelli’s gut and scraping out the infection…’

Over the course of his complications and recovery, Ernie “estimates he lost $45,000 in earnings.

Ciccotelli said he paid a few thousand dollars out-of-pocket traveling back and forth to the hospital for treatments. For about a year he was unable to carry any weight, and he said he still can’t exercise the way he did before the surgery, which has caused his weight to balloon.

Ciccotelli figured another lawyer would jump to take his case. He’d been fine before the surgery and clearly had suffered harm. But one by one, lawyers turned him away.

After about a half-dozen rejections, he asked one why no one would take his case. You can win, the attorney told him, but it won’t be enough money to be worth it.”


It’s not about justice; it’s not about holding the doctors and hospitals responsible; it’s about MONEY. The article, which you should read in full, discusses the too-common practice of malpractice attorneys rejecting clients because there simply isn’t enough profit in it.

This is why we need to push for public policies and laws that protect living donors, and go public about the harm we’ve experienced. We simply can’t rely on the civil courts to make us whole.


Advocacy Living Donor Protections Living Donor Research Living Donor Risks Living Kidney Donor OPTN

OPTN Standards For Transplant Surgeons Are Too Low

This excerpt pretty much says it all:

The learning curve [of a surgeon specializing in laparoscopic donor nephrectomy], defined by decreased operating time, averaged 35 cases.

Improved intra-operative, patient, and recipient outcomes were observed for centers performing ?50 LDNs annually.

The United Network of Organ Sharing [UNOS; in this case used as a synonym for OPTN] requires 15 cases as surgeon or assistant to be certified as the primary LDN surgeon. This falls below the described learning curve for LDN.



Raque, J., Billeter, A., Lucich, E., Marvin, M., & Sutton, E. (2015). Training techniques in laparoscopic donor nephrectomy: a systematic review Clinical Transplantation, 29 (10), 893-903 DOI: 10.1111/ctr.12592

Advocacy Informed Consent Living Donor Research Living Donor Risks Living Kidney Donor OPTN Psychosocial Risks

Living As My Sister’s Keeper

The Establishment published this essay a couple of weeks ago, entitled Of Kin and Kidney Transplants: Living As My Sister’s Keeper. It juxtaposes the Herrick transplant with a personal narrative, interspersed with research about risks. (It’s much more impactful and entertaining than it sounds, I promise). Please read and share with everyone who needs to see it. If we want the conversation about living donor well-being to gain momentum, we make sure these stories are distributed as widely as possible.

Advocacy Informed Consent Living Donor Research Living Donor Risks Living Kidney Donor OPTN

63.6% of Living Kidney Donors Are Overweight

An analysis of the OPTN/UNOS database from 1999-2011 reveals that 63.6% of all living kidney donors were either overweight* or obese.

(emphasis mine):

“Overweight and mildly obese kidney donors have increased through time by 12% and 20% every 5 years, respectively “


Obesity is associated with numerous health risks, including Type 2 Diabetes and hypertension. According to USRDS, 44% of kidney failure is due to diabetes and another 26% is because of high blood pressure.


“Having a BMI greater than 35 kg/m2 has been associated with slightly longer operative times and overall more peri-opera­tive complications, such as wound complications”


If obesity is such a problem, especially in regards to kidney function and health, wouldn’t OPTN have some sort of policy on the matter? (emphasis mine again)


According to OPTN guidelines, having a BMI greater than 35 kg/m2 is considered a relative contraindication to be a living kidney donor. Despite this, transplant centers across the United States use different criteria in determining donor exclusion based on BMI. Based on a 2007 United States Transplant Center Survey, twenty percent of the transplant centers that were surveyed excluded those with BMI greater than 40 kg/m2, fifty two percent of United States kidney transplant centers excluded donors with BMI greater than 35 kg/m2, ten percent of programs excluded those with BMI over 30 kg/m2, twelve percent had no policy for exclusion, and six percent excluded based on BMI if they had other cardiovascular risks. ”


In short, only 60% of U.S. transplant centers follow or exceed OPTN policy.

40% of U.S. transplant centers accept higher at-risk living kidney donors than OPTN policy dictates.


There’s no point in having a policy if 40% of members won’t follow it. Especially if the governing organization will do nothing to enforce it. The whole thing is nothing more than theater, engineered to make the public *believe* transplant centers care about the health and well-being of kidney donors.

Unfortunately, it’s theater that’s already put over 30,000 people at risk.



*Overweight was defined as a BMI of 25 or higher.

Sachdeva, M. (2015). Weight trends in United States living kidney donors: Analysis of the UNOS database World Journal of Transplantation, 5 (3) DOI: 10.5500/wjt.v5.i3.137

Advocacy Living Donor Protections Living Donor Research Living Kidney Donor

How to Eliminate Some Living Donation Related Costs

Note: Typical with most recently published studies, I’m only able to see the abstract for this one.


Authors collected info from 194 living kidney donors enrolled in the KDOC study.

“Most LKDs (n=187, 96%) reported one or more direct costs, including ground transportation (80%), healthcare (24%), lodging (17%) and air transportation (14%)…..Higher total costs were significantly associated with longer distance traveled to the transplant center”


As I’ve discussed at length, not only is it not medically necessary for a potential living kidney donor to have their procedure at the same transplant center as their recipient, it can also be detrimental for the kidney donor’s care, recovery and treatment. Transplant centers prefer both parties to be at the same hospital because –

A. It’s convenient for them.

B. Variations in how transplant centers evaluate potential living donors results in a quality control issue. Transplant center 1 might miss something that transplant center 2 deems exclusionary, etc

C. Transplant centers are paid by the procedure, so having folks at different hospitals splits the revenue pie.

D. If the kidney donor and transplant recipient live in different states, there can be insurance and billing conflicts and issues.


How to fix the problem (for the living donor, at least):

1. Put *all* treatment for ESRD and kidney failure under Medicare (this would delight private insurance companies btw), or at minimum, have Medicare assume all healthcare expenses if the prospective living donor and would-be recipient reside in different states to circumvent the state insurance regulation obstacles.

2. Completely standardize the living donor evaluation and selection process.

3. Require insurance companies or transplant centers to pay for the living donor’s travel and lodging expenses. (This, however, would still leave the LKD at risk. S/he must return home at some point and could need further treatment)


“Few LKDs reported receiving financial support from the transplant candidate (6%), transplant candidate’s family (3%), a nonprofit organization (3%), the National Living Donor Assistance Center (7%), or transplant center (3%).”

Donation is an act of generosity, which causes the prospective LKD to bear the burden (in this case financial) by themselves. Transplant candidates (aka would-be recipients) are taught, in a million subtle ways, to passively accept the sacrifice a donor is making on their behalf. Maybe we need to change the dialogue from one of recipient entitlement to one of recipient responsibility? Rather than expecting the government (NLDAC) or a nonprofit to help with living donation related expenses, transplant candidates should be prepared to assume these costs. If a would-be recipient is unable or unwilling to do, s/he could continue on dialysis and wait until a deceased donor organ becomes available.

If this idea offends your sense of fairness (Poor people won’t get living donor kidneys!), I hear you, but it’s also the reality of how our healthcare system works in general. If someone can’t afford a treatment or medication, that person can’t have that treatment or medication. Is that unfair? Certainly. But then again, one could argue, so is asking another person to act as your medical supply.

Rodrigue, J., Schold, J., Morrissey, P., Whiting, J., Vella, J., Kayler, L., Katz, D., Jones, J., Kaplan, B., Fleishman, A., Pavlakis, M., Mandelbrot, D., & , . (2015). Predonation Direct and Indirect Costs Incurred by Adults Who Donated a Kidney: Findings From the KDOC Study American Journal of Transplantation DOI: 10.1111/ajt.13286