Follow-Up Living Donor Misinformation Living Donor Research OPTN

Organ Donation and Utilization in the US 1998-2008

This report is spit out every year, always behind due to a lag in data collection. What’s interesting, and the title says it all, is that there is no concern about living donors beyond who, how many, where and how they kicked out an organ.

Here are the highlights:

In 2008 unrelated, nonspousal relationships such as friends, in-laws or anonymous donors were most common (26%)…A small part of the increase in unrelated, nonspouse relationships may be attributed to the emergence of kidney chains, though chains are still relatively new and cannot account for the entire increase.

What annoys me about this statement is that it’s so painfully disingenuous. The authors are batting their eyelashes saying, “Gee, we have no idea why unrelated donation has increased” when in truth, transplant centers such as Loyola have begun an actual program to “Pay It Forward” encouraging folks to give a kidney to a stranger and/or as part of a kidney chain. Other transplant centers have begun progams to *cough* educate *cough* the public about unrelated/stranger/anonymous living donation.

Even more than that, surgeons are actively promoting living donation to would-be recipients, telling them to ‘find a donor’. Some (and this includes the so-called educational seminars) are teaching these would-be recipients how and where to solicit for donors. At no time, of course, are they telling recipients the risks inherent to living donation or the dearth of aftercare or long-term data.

So, the authors, the transplant centers and UNOS/OPTN know perfectly well why the rates of unrelated donation have increased. They simply don’t want to admit to not only accepting solicited living donors, but encouraging their solicitation.

Of the 6732 living donors who donated an organ in 2006, more than 30% were lost to follow-up. There is significant variation among centers in terms of the percentage of donors for whom follow-up data is missing with some centers declaring no available follow-up for 100% of their donors.

This is about where my head exploded. “Some” transplant centers are declaring NO follow-up for 100% of their living donors. There cannot be a more blatant expression of how little these people care about the fate of their living donors. Worse, this UNOS/OPTN policy went into effect in 2006 yet not a single transplant center has been punished, penalized, chastized, warned or otherwise for this behavior. I say this not just based on my disdain of OPTN or their history of overlooking such egregious slights, but because they proudly issued a press release a short time ago stating that for the ‘first time’ they’ve notified transplant centers of the ‘importance’ of complying with the follow-up policy. These transplant programs have given the double-middle finger to the Department of Health and Human Services who oversees the US transplant system, and more so, to the taxpaying general public who allows them to exist. A toothless letter from an agency that sucks from their teet is hardly going to make anyone tremble in their expensive, designer shoes.

Tuttle-Newhall, J., Krishnan, S., Levy, M., McBride, V., Orlowski, J., & Sung, R. (2009). Organ Donation and Utilization in the United States: 1998-2007 American Journal of Transplantation, 9 (4p2), 879-893 DOI: 10.1111/j.1600-6143.2009.02565.x

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