I ripped my blog title from the title of Connie Davis’ latest opus published in Advances in Chronic Kidney Disease, July 2009 issue. In her rather lengthy article, she attempts to consolidate an amalgamation of data and studies regarding living kidney donor deaths, complications and long-term health risks. In my opinion, she only does a so-so job, but considering she’s a high-ranking OPTN/UNOS officer, I shouldn’t be surprised she wouldn’t look too closely at the information she’s presenting.
I integrated a smattering of this information in the relevant areas of LD101.com but I thought I’d post some highlights (with my subsequent comments) here.
Death after living donation is quite rare, with the risk of death reported as 0.02% to 0.04% within 90 days of donation.
If you’ve been following this blog, you already know I’ve been having a discussion with some of my LD Advocate friends about so-called living donor mortality rates. What we’ve determined is that everyone quotes old statistics and no one is being honest with the real number of living donors deaths since OPTN began their database in 1988. Clearly, Dr. Davis is no different. The references she utilizes to support her ‘range’ are neither comprehensive nor reliable. She has access to every living donor death reported to OPTN; she could choose to make the information public, but she does not.
From the initiation of the United Network for Organ Sharing (UNOS) tracking of donor deaths in October 1999 through December 2007, 14 living kidney donor deaths (out of 51,153 donors, 0.03%) that occurred within 30 days of donation were reported to UNOS or identified by examination of the Social Security Death Master File.1,2 In 2008, 1 further death was reported. During the same time period (October 1999 to December 2007), 39 of 51,153 (0.08%) donors had died by 12 months after donation.
Problem one: UNOS does not have a database, OPTN does. Follow me if you can but OPTN is an agency under HRSA (which is part of DHHS), but HRSA has ‘outsourced’ the management of OPTN to UNOS. In other words, UNOS doesn’t have anything; they simply ‘administer’ OPTN.
Problem two: OPTN has been keeping a database since 1988. Why did Dr. Davis only choose to report LD deaths from 1999-2007? In addition, living donors have been used by the medical community for over 50 years – we have absolutely no data on the LD mortality w/i 12 months of those patients.
Problem three: foreign nationals who enter the U.S. for the sole purpose of being living donors (see: NJ Rabbi arrested for organ trafficking) do not have social security numbers so they cannot be tracked in the OPTN database.
Even though donors reportedly undergo a thorough evaluation before donation, some causes of death (eg,myocardial infarction, cancer, suicide, and homicide) within a short time after donation point to a need for programs to review their donor outcomes in the context of their program’s predonation medical and psychosocial evaluations.
Is she kidding? It is impossible to refer to transplant centers’ evaluations as ‘thorough’ when A. there are no quality controls or standards for pre-donation evaluations and B. at least one living donor committed suicide within 12 months of donation! What Dr. Davis should be saying but won’t because OPTN serves the transplant centers’ needs and not the public’s is that some living donor deaths were preventable and future deaths could be prevented if transplant centers actually did their jobs and evaluated prospective living donors in an ethical and real way.
In terms of the International transplant community, Dr. Davis asserts – the sense of long-term commitment to the living donor is growing.
Contrast this with the recent OPTN living donor committee report I read wherein it was discovered that despite a policy requiring transplant centers to submit follow-up forms for living donors at 6 months, one year and two years, the centers were labeling ‘many’ living donors as ‘unable to contact’ when there is no evidence they tried, and that transplant centers were submitting forms with one field filled out and getting credit for the form.
And OPTN is the agency responsible for ‘crediting’ the centers with submitting the form!
So really Dr. Davis, a ‘commitment’ to living donors?
What really troubles me, aside from the obvious omission of any discussion of living donors’ despression, anxiety, anger and PTSD post-donation (and believe me, that causes me great consternation) is the fact that Dr. Davis drops these facts, wipes her hands clean and walks away. She never, as they say, closes the loop.
– Some living donor deaths are preventable.
– Some transplant centers are not evaluating their prospective donors well enough.
– Living donors are at higher risks for end-stage renal disease than the general two-kidneyed population.
Yet she gives no analysis, evaluation or consideration of what these facts mean. She fails to offer suggestions on how to improve upon these deficiences, nor does she acknowledge OPTN’s role in the situation. It is as if she is saying, “Yeah, dead donors are bad ….. Anyone want a burrito?”
If UNOS wants dominion of all things living donation (or even if they want their contract renewed, or better yet, don’t want ’empassioned donors’ on their case), they need to stop hiding important facts from the public, stacking their committees with ‘pro-living-donation’ faces and censoring public-at-large members who dare to contradict their one-sided agenda. Instead of claiming the Washington Post used flawed data in their articles about inflation on the waiting list (ironically data that originated from OPTN’s own website), acknowledge and fix the damn problems.
Close the loop, Dr. Davis, close the loop.
Davis CL (2009). Living kidney donors: current state of affairs. Advances in chronic kidney disease, 16 (4), 242-9 PMID: 19576554