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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.

Permanent link to this article: http://livingdonorsarepeopletoo.com/if-every-transplant-center-says-it-it-must-be-true/

1 comment

5 pings

  1. Wayne B.

    See my article “Percentage of Transplant Surgeons and Nurses who are living donors.” One thing I do know is math. And where these doctors knowingly distort (or possibly they really do not know how to calculate basic statistics) is shameful either way.

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