Couldn't Have Said It Better

Loyola's Living Donor Ethics - Beyond Epic Fail

Loyola, home of the "let's convince seven of our employees to kick out kidneys so we can generate lots of press and even more money", has issued the following press release, entitled:

Loyola Kidney Donor Saves Her Own Life by Giving an Organ.

The title alone makes me gag because it's such obvious propaganda, but most of all because it's a Big. Fat. Lie.

It wasn't donating that caused Dorothy Jambrosek to discover her pre-cancerous lesions - it was the EVALUATION. And it's not because the living donor evaluation is such a rigorous thing: regular self-exams, a mammogram, and an OBGYN exam would've turned up the same thing. To give credit to Loyola or to the transplant industry for discovering these lesions is simply bunk.


The treatment for Ms. Jambrosek's lesion was a double-masectomy.

Read that again. A double-masectomy. Not radiation, not chemotherapy, not a lumpectomy - a DOUBLE MASECTOMY. One does not have to be well-versed in breast cancer knowledge to know that one does not undergo a double masectomy unless the situation is of the upmost severity, one's prognosis is critical, and one's cancer is aggressive and expected to spread. This was not a "Let's remove that suspicious mole just be safe" scenario.


One of the transplant industry's major justifications for harvesting the public's kidneys and livers is that living donors are healthy, much healthier the average person. Ms. Jabrosek was clearly not. Yet Loyola put her through a major and unnecessary surgery, and took her kidney anyway. They exposed her to a host of short and (unknown) long-term consequences because her recipient "had been difficult to match" and because "six other people were able to receive kidneys". So who were they prioritizing really - Ms. Jabrosek, seven recipients, or fees for fourteen surgeries?


According to the article the following people participated in this ethical quagmire:

- Constantine Godellas, MD, FACS, director of the Breast Clinical Program and co-director of the multidisciplinary Breast Oncology Center

- LUHS plastic surgeon Victor Cimino, MD, FACS

- LUHS kidney transplant surgeon John Milner, MD


Some types of chemotherapy are nephrotoxic - poisonous to kidneys. What if her cancer returns? Is it inadequately treated, or does she risk kidney failure because she has 50% less renal reserve to withstand noxious substances? Will Godellas, Cimono, and Milner give her one of theirs? Or will they deny culpability?


The situation itself is distasteful, but the fact that Loyola has used it as a PR opportunity is reprehensible. There is nothing to celebrate in exploiting the generosity and good will of Ms. Jabrosek or others like her. That Loyola thinks there their behavior should be flaunted is indicative of exactly how skewed their ethics really are. Shame on them.

Happenings in a Writers and Readers World

When I'm not doing all this living donor advocacy stuff (and all related thereto), I'm reading and/or writing. So here are a couple of notable articles about such that I ran across today:

Seattle Mystery Bookstore Owner Refuses to Stock Amazon's Mystery Imprint Authors.

For the unitiated, the crux of the conflict is this: Amazon has decided that being a bookseller wasnt enough and has now decided to become a publisher too. Makes sense from their angle - cut out the middleman. Right now, it makes sense for the author too - larger royalty rate, more publicity/marketing than the NY publishers offer. But is it advantageous to the indie bookstore?

Read the article and the comments to get all perspectives.


AOL Hell: An AOL Content Slave Speaks Out.

While this narrative is specific to AOL, understand that this is the nature of many 'content farms' on the internet. Too many folks think that since we all learned how to string words together into something resembling a sentence, anyone can be a writer. Simply not true. I can open my mouth and sing; does that mean I'm Beyonce (or Freddie Mercury)? Writing is a craft; effective communication is a craft. Paying employees a decent wage and treating them with respect should be non-negotiable regardless of the industry.

Why Shands Jacksonville Kidney Transplant Program Closed

I applaud this reporter for actually doing his job: conducting research, asking hard questions, and telling the truth. The transplant industry is a complicated creature with many heads, and they are all masters at obfuscation and diversion. As an advocate, I appreciate that someone cared enough to bring this story to the public.

http://bit.ly/lGME3Ehttp://www.blogger.com/img/blank.gif

Notable facts:

- the program failed to meet six out of twelve federal standards.

- transplant recipients' three-year survival rates were too low.

- no follow-up on 'adverse events' [note: I adore this phrase btw, it's such an absurd euphemism for "we killed or maimed someone"]

- shoddy record-keeping: eg. half their waitlisted patients were actually ineligible. [note: this is why we should view the alarmist numbers on the waitlist with suspicion]

- and not surprisingly, they lied, lied, lied to the public about their reasons for closing.

How NOT to Market (aka marketing fail)

Earlier in the week, I received this comment (which also supports why I moderate comments on this blog):


Dear Cristy,

We are huge fans of Living Donor 101 over at [shamless plug]! We’re one of the top 10 online media companies in the US and would love for you to help pilot our new Health & Wellness Community at [another shameless plug], slated to launch in the coming weeks.

If you’re interested, please contact me about joining our community for the launch!

Cheers,

Sxxxx Hxxxxxx
Community Partners Editor
[company with no shame]
sxxxxx@shamelessplugging.com


And just yesterday this email arrived:


Hello,

The name is [probably fake name redacted], I’m a professional writer and webmaster; a pleasure to e-meet you! I’ve been reading your blog lately at the office and I’m loving it so far, plus I was quite impressed with the design of your site; it’s so nicely customized that it just stands out.

I’m contacting you because I have a few ideas for an article that, in my opinion, would be very fitting for your readers.

The format of the article would be as follows:

Length: >= 400-600 words.

Delivery: Formatted HTML file with pictures and relevant supplementary resources, ready for publishing.

Copyrights: 100% original and not published anywhere else; the article will be for the exclusive use of your blog.

Would it be fine if the article body contained one, entirely relevant link to my website, which would add even more value to the article?

I really love to write, so I’m absolutely ready to prepare the article for you and send it for your approval within the next few days; I’m sure you will like it and we’ll get it to work, but should you decide not to publish I will just stash it in my private collection for later use – no harm done!

Let me know if this is something you would be interested in.

Kind regards,
[fake name redacted]


The first example is blatant, the second less so. The first I siphoned into my 'spam' folder; the second I replied with this:


[fake name redacted],

Unfortunately your email pitch comes across as entirely canned and
formulated. There is nothing in your message to indicate you've read a
single word on the website, or have any understanding of the purpose of
our organization. In fact, you don't even identify the topic of your
'guest post' or its intent.

In the future, I suggest at least attempting to personalize your blatant
attempts at marketing.


Not included in my response but still true -> A real professional would use something a bit more substantial than a gmail account (Full disclosure: I have a couple; but my 'business' emails don't originate from there)

A little living donor cross-promotion

Living Donors Matter, inc has a Facebook page. A "like" will keep you updated on LDM's progree, and help spread the modest advertisement throughout the Facebook community. The more living donors (and living donor allies) we can organize, the more people we can educate, help and protect.

Article on Paying for Kidneys - Right on Time

I can't be blamed. My prior post is dated June 3 and this article appeared two days later.

From the Denver Post: Long Waits for Organ Transplants Have More Pondering Payments to Donors.

Clearly I don't have to explain my opinion on this topic, but I thought I'd share a couple precious nuggets from this little piece.


"It's time to loosen these restrictions in order to save lives," said Dr. Arthur Matas, a leading transplant surgeon in Minnesota and advocate of an organ compensation system. Such arrangements are illegal under federal law.

University of Minnesota, where Matas is a surgeon, is also the origin of the oft-misquoted and highly flawed study "Long Term Consequences of Kidney Donors". The authors (Matas included) sent self-reports to U of Minn's LKDs, 40% of which declined to participate, then conducted physical exams on 255 of their LKDs (out of 3700, a mere 6.9%), yet sent press releases far and wide proclaiming that living kidney donors suffer no ill long-term effects nor a shortened lifespan. Unfortunately, media types have so far failed to look beyond the marketing spin.

U of Minnesota is also the new contractor for SRTR, the Scientific Registry of Transplant Recipients, who keeps and analyzes national transplant-related data. What will their surgeons' attitude mean for neutrality and federal policy recommendations?



Frustration with the lists, and growing reports of wealthy Americans buying kidneys from poor overseas donors, has risen to an ethical turning point for doctors like Igal Kam, chief of University of Colorado Hospital's transplant surgery.

Kam supports compensation and hopes enough medical professionals will sign on to give the idea momentum for the necessary act of Congress.

"It's our job to maximize donors," Kam said. "So we as a society need to look at how to create compensation for the donor families."

It's good to know U of Colorado surgeons believe their job is to obtain organs for recipients, the health and protection of living donors be damned. Of course, this is same facility where liver donor Ryan Arnold died last August so I suppose I shouldn't be too surprised.



There was one small bright spot in an otherwise very skewed article. Danovitch, whom I quoted in my last post, had this to say:

People willing to buy and sell organs are much more likely to lie about their health and have infections or other problems, Danovitch said. As for the proposed list of "incentives," he said, "Do you want to live in a country where a poor person who wants health insurance has to give up a kidney?"

Kidney Markets - Epic Fail

An article popped up on my google alerts recently regarding an Indian (dot, not feathers as Robin Williams' character would say in "Good Will Hunting") who answered a solicitation for a kidney, sold said kidney and has now been screwed and abandoned by his recipient/buyer.

A couple of days later, another article appeared, this one about a seventeen year old Chinese boy sold his kidney to a black market broker so he could afford to buy an ipad 2. As per the first story, once the kidney was safely in the hands (er, body) of the recipient, the broker has disappeared - with the payment.


Other than one being governmentally sanctioned and the other not, these are incredibly similar tales. Both illustrate the dangers of commodifying a living person's body, as well as the dehumanization of living organ donors*. They also reveal how organ sales take advantage of the disadvantaged, vulnerable and desperate, regardless of legal status.

Some folks would dismiss these two experiences as anecdotal, extreme examples, or emotionally inflammatory. Except that they confirm what all published studies on organ sales have concluded:

Selling living donor organs benefits everyone (surgeon, transplant program, recipient, broker, govt) except for the living donor her/himself.





Naqui compared kidney vendors and kidney donors in Pakistan:

Of the vendors 67% were bonded laborers earning less than %50 month as compared to controls where 68% were skilled laborers and self-employed earning greater than $100 month. History of vendors revealed jaundice in 8%, stone disease in 2% and urinary tract symptoms in 4.8%.

Postnephrectomy findings between vendors versus donors showed higher BMI and almost twice the level of hypertension in vendors, serum creatinine (mg/dL) of 1.17±0.21 versus 1.02 ± 0.27, an almost 20 point lower GFR (kidney function) in vendors, urine protein/creatinine of 0.150 ± 0.109 versus 0.10 ± 0.10, hepatitis C positivity in 27% versus 1.0% and hepatitis B positive 5.7% versus 0.5% (p = 0.04), respectively.

In conclusion, vendors had compromised renal function suggesting inferior selection and high risk for developing chronic kidney disease in long term.



Danovitch had this to say about Naqvi's study:

The study adds an important element to the growing body of empirical evidence not only from Pakistan but also from Egypt, India, Iran and the Philippines (2–4) suggesting that the outcome for kidney donors who sold their organ is worse that that of those who donated it without financial gain. Worse, not only from a strictly medical point of view, as Rizvi et al. have shown, but also from a psychosocial one.

The donation transaction is primarily a commercial one and the donor likely does not have the benefit of a trustworthy advocate to care about his or her interests. Neither is there good reason for the donor and the recipient to care much about each others welfare since there is no mutual interest in a good outcome.

And even if we were to accept the dubious ethical and practical arguments in favor of commercialization we would be left with the complexities and uncertainties of ‘regulating’ a system which would undoubtedly engender a destructive schism in the professional transplant community; a drop in noncommercial living donation; and possibly also of deceased donation. Commercial and noncommercial organ donation do not cohabit well together.



Goyal, after interviewing kidney vendors in India (refer to first news article at the top of this post):

Sixty percent of female participants and 95% of male participants worked as laborers or street vendors.

Ninety-six percent of participants sold their kidneys to pay off debts. The average amount received was $1070. Both middlemen and clinics promised on average about one third more than they actually paid. Most of the money received was spent on debts (60%), food and clothing (22%), or marriage (5%).

Average family income declined by one third after nephrectomy. The percentage of participants below the poverty line increased from 54% to 71%. Of the 292 participants who sold a kidney to pay off debts, 216 (74%) still had debts at the time of the survey.

About 86% of participants reported a deterioration in their health status after nephrectomy.

Seventy-nine percent would not recommend that others sell a kidney.



Broumand said, of the Iran experience of creating a legal kidney market, which has eliminated Iran's waiting list:

...we have paid an expensive price for first reversing the percentage of LRD [living related donation] in favour of LNRD [living non-related donation]. Because of the rush for donation of kidneys there are occasions in which HIV, HBsAg [Hepatitis B], HCV [Hepatitis C], CMV [cytomegalovirus, one of the herpes family], and tuberculosis are donated with the kidneys...I personally have observed two patients expiring within the first 3 months of kidney transplantations with miliary tuberculosis (TB).

I personally interviewed 32 donors in our Department. Of these 32, just one person claimed that he wanted to donate a kidney with true altruism. It was shocking when a husband, just discharged from the hospital after donating his kidney, brought his wife to donate her kidney as well because the payment for his kidney was not enough for them to repay their debts. Another person wanted to sell his kidney to be able to buy drugs, and asked if he could sell both of his kidneys and start on maintenance dialysis, as dialysis anyhow was free...sadly, because donors are in a hurry to finish the business, there is no time to check if they are really mentally competent or not. I had a case in which the donor killed the recipient’s son during the course of work-up when he understood he could not donate the kidney.

Finally, as these paid donors are too involved to think about the future, almost 95% of them receive no follow-up visits after donation.



And finally, Zargooshi who spoke with hundreds of Iranian kidney vendors:

Poverty prevented 79% of vendors from attending followup visits, and vending caused negative effects on employment in 65%. Of the families 68% strongly disagreed with vending, which caused rejection of 43% and increased marital conflicts in 73% of vendors, including 21% who divorced.

There were 70% of vendors isolated from society, and 71% had severe de novo postoperative depression and 60% anxiety. Vending caused somewhat (20%) to very (66%) negative financial effects.

It also had negative effects on the physical abilities in 60% of vendors who were mainly unskilled laborers, and 80% were dissatisfied with postoperative physical stamina, which was decreased mostly by depression.

Of the vendors 37% concealed the truth of kidney sale from anyone, 14% disclosed it only to spouses, 43% to first generation relatives and 94% were unwilling to be known as donors.

The mental preoccupation with kidney loss was usually (30%) to always (57%) present and interfered negatively with vendor life, and 62% reported negative effects on sense of being useful. Effects on general health were somewhat (22%) to very (58%) negative. When thinking about vending, the majority cited negative feelings.

They responded that if they had another chance 85% would definitely not vend again, and 76% strongly discouraged potential vendors from “repeating their error.” Half the vendors were ready to lose greater than 10 years of life and 76% to 100% of properties to regain kidneys.



Consider all of this when some individual or organization proposes a government sanctioned living organ (usually kidney) market. It might be beneficial (financially and otherwise) for some, but it's always a losing proposition for the person relinquishing the kidney.






*A lengthy discussion could be had regarding which aspect arrives first, but we'll leave that for later.

Broumand, B. (1997). Living donors: the Iran experience Nephrology Dialysis Transplantation DOI: 10.1093/ndt/12.9.1830

Naqvi, S. A. A. (2008). Health Status and Renal Function Evaluation of Kidney Vendors: A Report from Pakistan. American Journal of Transplantation DOI: 10.1111/j.1600-6143.2008.02265.x

Danovitch, G. M. (2008). Who Cares A Lesson from Pakistan on the Health of Living Donors American Journal of Transplantation DOI: 10.1111/j.1600-6143.2008.02290.x

Goyal, M. (2003). Consequences of Selling a Kidney in India. JAMA: The Journal of the American Medical Association DOI: 10.1001/jama.289.6.699-a

Zargooshi J (2001). Quality of life of Iranian kidney "donors". The Journal of urology, 166 (5), 1790-9 PMID: 11586226