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Follow-Up Living Donor Misinformation

Transplant Program Propaganda

I found this is my Google alert, who knows why. It’s a link to Johns Hopkins website, regarding their so-called “living donor follow-up clinic

To whit:

Beginning in 2007, the Johns Hopkins transplant team has developed a new live donor clinical follow-up and research program. We created this program to ensure that we provide superior care to a population of individuals who have made a sacrifice to help save the life of another individual.

Total crap. OPTN made one-year of living donor follow-up mandatory in 2000, and extended it to two years in 2006. They warned the transplant programs that noncompliance could mean very nasty things. If Hopkins cared about their living donors, they would’ve established this clinic years before the feds told them they had to.

Furthermore, the follow-up info required by OPTN – Well, let’s just say that a college freshman taking an Intro to Research Design course could do better. See here. The lack of concrete specifics has lead transplant professionals to write non-helpful things like “living donor complications” as a reason for re-hospitalization.

AND – notice the absence of any inquiry into the living donor’s quality of life. Nothing about depression, therapy, anti-depressants or anti-anxiety meds. Nothing about insurance difficulties, nothing about financial problems as a result of the donation.

The moral of the story is this – don’t be fooled by the hype. If you’re a potential living donor, demand the center provide you with their living donor statistics. Not just how many living donors they have, but how compliant they’ve been with OPTN’s data policy. Don’t ask, but insist they provide you with a copy of all the LD data submitted to OPTN. If ‘safety’ really is their primary concern, they should no problem providing this info. If they refuse, I suggest looking to another facility.

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