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Advocacy Ethical Considerations Living Donor Misinformation Living Donor Protections Living Kidney Donor

You Want Cheerleaders, Go to a Football Game

One of the interesting aspects of the internet and social networks is that it enables folks to reconnect with other folks they last recall tumbling off the merry-go-round on the school playground. Sometimes, it unwittingly puts us in a collision course with our (or others’) misconceptions.

For example:

Hi Cristy!!! I have a co-worker whose husband is in need of a kidney donor. Do you have any suggestions or advice.

I considered my reply for about 24-hours. In virtual land, that’s not an unreasonable time lag, but it wasn’t as if I just ‘didn’t get around to it’, I was actually thinking about what to say.

I’m certainly not the person to ask about soliciting strangers (and otherwise) to pony up a kidney. My advice to any prospective recipient is to educate themslelves about what they’re asking someone to do. There’s an erroneous perception, encouraged by the transplant centers, that it’s ‘safe’ to be a living donor, with no short-term or long-term risks, which is really, really not the case. Aside from the obvious (and maybe not-so-obvious; refer to www.livingdonor101.com/risks.shtml), some living donors suffer from depression, anxiety, anger and PTSD (and there are no resources for them), some experience financial hardship, and some are unable to find health insurance post-donation. And even if a living donor has insurance, some insurance companies are refusing coverage for things like hypertension – even it shows up ten or more years later – as ‘related’ to the donation. I think it’s crucially important that a would-be recipient ask themselves if they’d be willing to take on those risks (not to mention the permanent compromising of their bodies) for someone, especially a non-relative. If not, it’s unethical for them to ask it of someone else.

Because the living donors that talk to the media are 95% what I refer to as ‘happy’ donors (or in my more cynical moments, ‘martyr’ donors), there is the idea that all living donors are recruiters for the ‘club’. Some people find it shocking to realize that some living donors believe the decision to be a personal one, complicated by the tundra of misinformation and pressure to ‘save a life’ or be a ‘hero’. Many of us understand how deficient the system is, how one-sided the policies are, and we are reluctant to be complicit in bringing someone else into the fold.

Transplant centers have begun encouraging would-be recipients to solicit potential living donors. Not only is this a disingenous way for transplant centers to keep their hands clean of ‘brokering’ but still rake in the revenue of the procedures and evaluations, it’s unfair to the recipients and their loved ones. They are not told the reality of living donation as I’ve detailed above; only the sanitized version that ONE study at ONE center (with a 40% non-respondent rate) says living donors don’t croak any sooner than non-donors (really? that’s what passes for good research data these days?). They mislead these people into believing that what they’re asking someone to do is not only ethical, it is medically and psychosocially safe.

Not surprisingly, I haven’t heard from this person again. I have an inkling she didn’t pass on my comments to her co-worker either. So, in some small way, she has just potentially played a part in permanently maiming* a healthy person to – not cure someone, because transplants are not cures – but just maybe, perhaps, improve someone’s quality of life. But think of it this way, if the kidney fails, the recipient can find another. A living donor however, remains wounded for life.

*according to dr. art caplan, 2009 UN report on organ trafficking.

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