Categories
Ethical Considerations Informed Consent Living Donor Research Living Kidney Donor

Pushing the Living Kidney Donor Agenda

It’s no secret that the overwhelming majority of medical practitioners specializing in chronic kidney disease prefer living kidney donor transplants as a treatment for their patients. But this is the second time in recent history I’ve run across a study that actively propagandizes to would-recipients *and their social network* about the practice.

It’s not particularly new that physicians consciously or unconsciously encourage their patients in the treatment direction they (the doctors) prefer, but living donation is unique in that another person is permanently harmed in the process.

 

The patients in question (aka, those with end-stage renal disease) were assigned to the study based on their inability to find a living donor, cementing the study’s pro-living donation purpose immediately.

Their stated goal, “to support well-informed decision making among patients and their social network” translates into “How many people can we persuade to donate a kidney to our patients, the would-be recipients?”. 

Their outcome measures are further confirm this one-sided attitude:

 

The invitees [ie. the would-be recipients’ social network] showed pre–post increases in knowledge (p<0.001), attitude toward discussing renal replacement therapies (p=0.020), attitude toward donating a kidney (p=0.023) and willingness to donate a kidney (p=0.039) and a decrease in risk perception (p=0.003). Finally, there were significantly more inquiries (29/39 vs. 13/41, p<0.001), evaluations (25/39 vs. 7/41, p<0.001) and actual LDKTs (17/39 vs. 4/41, p=0.003) in the experimental group compared with the control group. 

 

Unfortunately I’m unable to procure the entire study ($$) but I’d certainly like to see what “information” the authors dispensed to the invitees. Because I’m sure it was much closer to Ibrahim and Segev‘s dreck than it was Mjoen‘s analysis of cardiovascular and renal disease in LKDs.

 

I’m aware the subject line invokes the image of gay marriage foes shrieking about the “gay agenda”. And while the two situations seem very different, the logic is the same: both gay marriage foes and the transplant industry want to continue to deny that certain groups of people (gays and living donors) the right to the same protections and liberties afforded everyone else (straights and recipients). Cloaking this prejudice under the heading of “education” doesn’t make it any less wrong and damaging than gay-conversion therapy.

 

 

 

Ismail SY, Luchtenburg AE, Timman R, Zuidema WC, Boonstra C, Weimar W, Busschbach JJ, & Massey EK (2014). Home-Based Family Intervention Increases Knowledge, Communication and Living Donation Rates: A Randomized Controlled Trial. American journal of transplantation : official journal of the American Society of Transplantation and the American Society of Transplant Surgeons PMID: 24935081

Categories
Advocacy Living Donor Misinformation Living Donor Risks Living Kidney Donor

No folks, it’s not as easy as “save a life, get a new belly button”

So a transplant surgeon is using the pages of The Atlantic to promote living donation.

You know, five years of this BS has been exhausting. No matter what seems to happen, the transplant industry keeps perpetuating the same recipient-centered propaganda and the media complies without question. I’ve lost count of how many reporters I’ve contacted about stories like this, how many publications I’ve tried to interest in what’s happening to living donors out there. None of them seem to care.

It’s acceptable to write about the government’s failure to care for returning veterans and how many are committing suicide, but it’s somehow blasphemy to utter any sentiment that might make living donors less than angelic heroes who skip merrily off into the sunset. We can’t say anything that might jeopardize the ever-continuing flow of kidneys for the would-be recipients.

 

As a matter of fact, I am angry,  how can you tell?

 

Anyway, here’s the comment I posted on the article:

 

Mezrich is incorrect that donors are evaluated “very carefully”. Until 2013, there were NO national standards of care for living donors. OPTN tried to implement such standards in 2007, but the transplant industry violently rejected them. It was only after years of pressure from the federal government (Dept of Health and Human Services) that they relented and passed the minimal and vague standards we currently have.

His assertion that the risk of renal failure for LKDs is also incorrect. Kidney donors who’ve been wait listed are 17-20 years post-donation. On this study, maximum follow-up was 15 years, and median follow-up was only 7.6. It simply doesn’t capture the true occurrence.

LKDs are supposedly “healthier” than the general population, so if their risk factor is equal to that of gen-pop post-donation, then kidney donation *does* in fact increase the risk of renal failure. But renal failure is not an LKDs only health risk.

A 10% reduction of kidney function is known to significantly increase one’s risk of cardiovascular disease and death. LKDs experience a 20-40% loss. At 10 yrs post-donation, half of Sweden’s LKDs are hypertensive or have cardiovascular disease. And that’s in a country with a longer life expectancy, healthier lifestyle and universal health care.

What Mezrich doesn’t say is that between 2000 and 2009, 4.4 living kidney donors died in the US every year within one year of donating. 20% of living donors experience physical complications, some of which are painful and chronic. 20-30% suffer from depression, anxiety, anger, grief and/or PTSD. Yet the transplant industry has no psychosocial aftercare available.

He also neglects to mention that we have NO COMPREHENSIVE SHORT OR LONG TERM DATA ON THE HEALTH AND WELL BEING OF lIVING DONORS. OPTN’s database was deemed “useless” for analysis or research in 2009, and even now, 35% are “lost to follow-up” by one year post-donation. (btw, this is the database used in the referenced study)

Mezrich purposely uses inflated wait list statistics. 1/3 of the wait list is “inactive”, meaning they couldn’t undergo a transplant even if an organ became available. 15% of the wait list at any given time has had at least one prior transplant.

According to USRDS, the average age of end-stage renal disease in the US is 64.4 years of age. 44% of ESRD is caused by diabetes, and another 26% by hypertension. Mezrich is WRONG that the “only” solution is to increase living donation. In fact, the only real method of reducing the need for donor kidneys is to invest in robust prevention and treatment programs.
Finally, I’d like to know if Dr. Mezrich has a donated a kidney. It seems reasonable that if he’s going to ask others to relinquish an important organ, he should be willing to do the same.