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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.

 

In case you didn’t connect the dots yourself, here it is: IT IS IMPOSSIBLE TO CLAIM PATIENT AUTONOMY WHEN MEMBERS OF THE TRANSPLANT INDUSTRY ARE ACTING AS KIDNEY BROKERS. 

 

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

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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.

Categories
Advocacy Living Donor Misinformation Living Donor Risks Living Kidney Donor

Bring On the Living Kidney Donation Propaganda Machine

Anyone who’s paid even a little attention to the transplant industry understands there’s a lot of questionable vocabulary around the whole thing (Donate Life, Be the Match, Give the Gift of Life, Be a Hero, etc), and those of us who live in a post-Mad Men era know that marketing is often less than truthful.

But then there’s this, which descends right into lying territory.

 

 1. Will donating a kidney affect my life span?

No. After one kidney is removed, the remaining kidney will adjust to filter as much as two kidneys would normally. The one functioning kidney is enough to remove all the metabolic wastes from body completely.

And

5. Does donating a kidney have risks for kidney donor?

Generally speaking, donating a kidney will not affect the life span or lifestyle. However, the surgery itself may have risks just like other surgeries.

6. Can donating a kidney affect having children?

Women after kidney donation still can get pregnant successfully because the surgery does not affect their reproductive organs.

7. What are the long-term effects for kidney donors?

The current research has shown that there are few long-term effects on the kidney donors. Mortality rates is the same or better than the general population.

 

Below was a “Have questions?” form, so I submitted the following:

 

This article is full of falsehoods. We have no comprehensive short or long-term data on LDs health and well-being so we have no idea if donating a kidney affects one’s lifespan. The Ibrahim and/or Segev studies do not proclaim any such thing, despite what their press releases declare. Segev was based on a ‘woefully inadequate’ database while Ibrahim was single-center and overwhelmingly white. Neither study actually followed LDs long-term.

As for pregnancy post-donation, both Reister and Ibrahim in 2009 found that LKD women were at higher risk of gestational diabetes, gestational hypertension, proteinuria and preclampsia. They also found that post-donation pregnancies had a higher likelihood of fetal loss and lower chance of full-term delivery.

There’s marketing and then there’s propaganda. This article is most-assuredly the latter. You should be ashamed of your deception.

 

 

A relevant side note: I perused the About Us page which says very little about exactly who the organization or people are who run the page. In other words, the whole thing looks more than a little sketchy. Unfortunately, most people looking for information will probably be drawn in by the official, medical appearance and tone, not realizing they have no idea if the source is credible. When it comes to one’s health, suspicion and curiosity are far better than blind trust.

Categories
Advocacy Potpourri

2011 Statistics Crunching, part deux

I’m not a marketing person.

I’m trying to be a marketing person, but the going is slow and treacherous – sort of like trying to dodge dog poo piles in the back yard at night.

BUT if one wishes to monetize, or prove how important/popular one is in one’s chosen field, then one must learn to market and assess one’s marketing attempts.

So….

My twitter followers increased 34% in December 2011.

And the facebook fan page rose 6% in ‘likes’ in the past 6 weeks.

(Now if I could just finish the LD101 renovation, and move this blog to its own url, I might be on to something…..)

Follow me on Twitter here

Like the Facebook page here

Categories
Advocacy

Living Donor 101 Stats for 2011

It’s difficult to know sometimes, in this vast universe that is the internet, if I’m doing nothing but blathering to myself (On certain occasions, it’s probably better if I am). So, every month I consult my website statistics and add them to an ever-growing spread sheet for analysis. Before I focus on a new year of living donor advocacy, I thought I’d share some of 2011’s highlights.

Unique visitors increased 103% from 2010.

Number of visits increased 97% from the year before.

Page views rose 86% from 2010.

Hits increased 83.6%.

To put this into perspective, www.livingdonor101.com launched in fall of 2008. Instead of adhering to a screwy fiscal year, I chose to go by the calendar, meaning that I couldn’t really examine year over year numbers until 2010.

Unique visitors and number of visits rose 110% and 116% respectively over 2009, while page views and hits increased 84.7% and 86%.

In short, the traffic on LD101 for 2011 is almost 200% what it was just two years ago. While I have no illusions this will continue indefinitely, I’m quite proud of what we’ve* accomplished so far. Educating the public and providing support for living donors and their loved ones is important (and under-appreciated) work.

My immediate goals for 2012 are to complete the website renovation, and move the blog to its own website. I have a bunch of other thoughts and half-realized projects on the to-do list, but I’m not ready to put them out there for public consumption. Let’s just say it could be interesting.

Happy New Year Everybody.

*Yes, each and every one of you that has contributed to this blog, or sent me an email, or mentioned LD101 in some way is partially responsible for this success.