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The Futility of Being a Living Donor Advocate

Before the holidays, I was pointed to a couple of columns by financial writer Marc Cohen. Like many others, his revenue stream is suffering in this recession, so his regular column for AOL regularly discusses how he (and others) are surviving in this economic climate.

One of his columns was a tongue-in-cheek, semi-joking diatribe on the benefits of selling a kidney to pay bills. His sole ‘expert’ on this notion was none other than Sally Satel, a recipient who often appears in the pages of national publications as a proponent of legalized organ sales (To be fair, she’d disagree with my characterization since she’s recently softened her message to include lifetime health insurance benefits and/or contributions to a retirement account, but regardless, she believes living donors should be paid for their kidneys). His paper-thin examination of the issue resulted in a second ‘reader response’ column, which sparked Ms. Satel to perch upon her soapbox for the NY Times, erroneously comparing surrogacy to living donation and basing the credibility of her stance on the pro-kidney-selling response Mr. Cohen had received from his column.

Apparently Ms. Satel has never heard the phrase “What is right is not always popular, and what is popular is not always right”.

I took it upon myself to contact Mr. Cohen, which wasn’t particular easy seeing as there was no contact info at the site of the original column’s posting. However, I’m adept at web search and eventually came up with his website and an email account. I sent him a lengthy missive (with references) on December 23. As of this date, I’ve received no reply, and considering he has written a column since, I don’t expect to (but I’d like to be pleasantly surprised).

I don’t regret taking the time to write Mr. Cohen, but I am disappointed he hasn’t taken the opportunity correct the misconceptions and ommissions he passed on to this readers. I can only hope my words enlightened him in some way, which is often the only solace an advocate like me can take. One person at a time.

Here is my correspondence to Mr. Cohen:

Mr. Cohen,

I happened upon your column as a result of Sally Satel’s recent op-ed piece regarding the legal compensation of living organ donors. While I’ve grown accustomed to Ms. Satel’s self-interested and one-sided opinions, usually demonstrated with inappropriate and inaccurate analogies (surrogate motherhood does not leave one physically and permanently compromised; donating a kidney does), I’m disappointed to see her misrepresentations and half-truths repeated to your readers.

I understand a columnist or blogger does not necessarily ascribe to the same neutrality oath as a traditional investigative journalist, however, it is disappointing that your exploration, no matter how whimsical, of selling a kidney, did not include any interviews or research beyond Mr. Satel’s myopic perspective. I think it’s important to share with you some facts about living donation that Ms. Satel seems to have overlooked.

1. While the medical community has been harvesting organs from living people for over 50 years, they have never deemed living donors important enough to track or study. This means there is NO comprehensive long-term data regarding the health and well-being of living donors. In other words, no one really knows how ‘safe’ it is – or isn’t.

2. Death is not the only possible surgical complication of being a living donor: Hernias requiring multiple surgical repairs; testicular swelling and sensitivity requiring surgical intervention; pancreatitis and other infections; intestinal binding and other gastro-intestinal issues (constipation, etc); lymph leakage; chronic fatigue; adrenal gland dysfunction; permanent nerve damage – all are more common than the transplant community admits (and this list is not inclusive).

Transplant centers discharge living donors into the care of their primary care physician, if they have one (one report estimates almost 40% of living donors are uninsured at the time of the procedure), so many complications or issues go unreported to the transplant center, a perfect situation from their perspective because they don’t have to report it to UNOS. (http://www.organdonor.gov/research/acotnov2008notes.htm)

3. Living Donors are at a higher risk for hypertension, cardiac issues related to hypertension, kidney-related diseases and kidney failure. Since 1993, almost 200 living kidney donors have been registered on the waitlist in need of their own transplant, a mean 18-20 years after donation (1), and UNOS acknowledges this is most likely an underestimate of the real incidence of kidney failure in living donors due to the medical community’s (and their) complete lack of follow-up (2). Despite popular perception, living donors only receive a few ‘points’ of priority in this situation, they do not move to the front of the line and it does not diminish their wait time in any meaningful way.

4. It is acknowledged that some living donors suffer from depression, anxiety, anger, and PTSD after donation, yet not a single transplant center offers any structured aftercare or support services. As previously mentioned, living donors are discharged after two days and referred to their primary care physician.

When living donors have accused transplant centers of ‘abandoning’ them, officials have publically claimed that some living donors feel ‘let down’ after the procedure because they are no longer the ‘center of attention’. The truth is, more than one LD has committed suicide afterward, but neither OPTN nor the transplant centers will acknowledge a connection to the experience of being a living donor (See: Daniel Huffman, for one example).

5. Ms. Satel claims that you, Mr. Cohen, would make a great a “savvy consumer, someone who, with proper informed consent, would know what he was signing up for.” (Emphasis mine). Her carefully chosen words indicate she knows but will not admit that living donors are currently not given true and full informed consent. In fact, OPTN guidelines give transplant centers such wide discretion that prospective living donors aren’t even guaranteed the same informed consent from hospital to hospital. Housawi’s article in 2007 revealed a frightening disparity, including some transplant professionals’ beliefs that certain health-related problems are not increased by living donation, despite data to the contrary.

In addition to the risks I’ve already outlined, living donors are routinely not told about the dangers of contrast dyes used in MRIs or other diagnostics, nor are they cautioned about sodium levels, or warned about the nephro-toxicity of chemotherapy. They are mislead with terms like “minimal”, a research term used to denote risk of harm equal to that of regular, daily activities, e.g. a hangnail (the word has been condemned by the bioethicists at Case Western Reserve University), the ‘heroism’ of living donation, and the idea of ‘saving a life’ when transplants are not cures and most recipients will need multiple transplants to achieve a normal life expectancy

As indicated in your column, and the responses received, the people considering (theoretically) selling a kidney would do so to achieve some sort of debt relief. It’s important to note that 75% of India’s legal kidney sellers (3,4) with the same motive continued to be debt after the procedure, one-third experienced a decline in income, and 90% reported significant deterioration in their health. In fact, 80% would not recommend selling a kidney to someone else, a sentiment echoed by 76% of Iran’s paid living donors, who claimed the practice should be banned (5). In short, while the theory of relinquishing a ‘spare’ kidney to pay off bills sounds wonderful in theory, the reality is much more complicated.

I could spend days outlining the deficiencies of the U.S. transplant system, but that would be outside the scope of this missive, and I’m sure I’ve inundated you enough. My intent is simply to correct some of the dangerous assumptions and omissions perpetuated by your glibness and Mr. Satel’s narrow views. Hopefully, I have succeeded.

Sincerely,
Cristy Wright
Living Kidney Donor
Living Donor Advocate
www.livingdonor101.com

(1) http://www.organdonor.gov/research/acotmay2008notes.htm

(2) Ellison MD, McBride MA, Taranto SE, Delmonico FL, Kauffman HM. Living kidney donors in need of kidney transplants: A report from the organ procurement and transplantation network. Transplantation 2002; 74: 1349–1351

(3) http://jama.ama-assn.org/cgi/content/full/288/13/1589

(4) Jha, V. The Case Against a Regulated System of Living Kidney Sales. www.nature.com/clinicalpractice
doi:10.1038/ncpneph0268

(5) Zargooshi, J. Iranian Kidney Donors: Motivations and Relations with Recipients. Journal of Urology. Vol. 165, 386–392, February 2001.

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