In a group (supposedly) for living organ donors, a person who serves as a kidney broker*, helping would-be recipients locate willing stranger donors, deluges the membership with the ‘happy’ donor stories so prolific in the news. One of the more recent quoted the kidney saying that donating ‘was no big deal’. I remarked with these stories do a huge disservice to all living donors, especially those who experienced problems post-donation.
Naturally, another person took issue with that, stating that the happy donors ‘are entitled to have their stories told’. When I pointed out that these stories are planted by the transplant centers to further their agenda of promoting living donation – well, let’s say she didn’t like that much either.
So I decided to conduct a brief experience: inventorying the US media’s coverage of living donation** as it comes through my google alerts. I’ll note –
A. if the story is a happy one,
B. if the story contains a quote from a transplant professional (especially someone from the hospital, as opposed to a local OPO or kidney disease organization),
C. if the story addresses the possibilities of risk/complications in any way (especially if a statement relies on Segev or Ibrahim to mention LD life expectancy, or rates of kidney disease; spare kidney/live with one kidney; minimal risks/relatively safe; false info),
D. if the story gets any of the facts wrong
E. If the story promotes a specific transplant center
F. and if the story is pimps for money (donations, fundrasier).
July 18, 2013
1. New Jersey man’s high school crush to save his life with a liver donation: Geeky guy has crush on cool girl in high school. They reunite at 25-year high school reunion, get married two months later, and she gives him 2/3 of her liver.
“There is an up to 25% chance that she will get complications from the operation.” No, there is a 40% chance of complications, says pretty much everyone. Oh and deaths are inevitable. The reporter gives no source for the statistic.
At the end of the story is a link for folks to donate to their medical bills.
July 19, 2013
2. Former Superintendent Gets New Kidney: Story centers on Cincinnati kidney transplant recipient’s life, with mention of his anonymous living kidney donor who “for now” wishes to remain anonymous. IOW, completely recipient-centered.
3. Live liver donors could ease U.S. organ shortage crisis, adopted siblings show. Contains quote from an Organ Procurement Organization (OPO – the regional organization which is paid to allocate deceased donor organs) which the writer calls an ‘advocacy agency”. Quotes from a transplant surgeon. Promotes specific transplant center’s live liver donor transplant program.
“Overall, the risk of early death among live liver donors is about 1.7 cases per 1,000 donors, according to a 2012 paper led by Dr. Dorry Segev, a transplant expert at Johns Hopkins Medicine. There have been four deaths of living liver donors among the more than 4,300 transplants performed since 1999, according to OPTN.”
What is the definition of “early death”? Any death of a liver donor prior to what would be expected of a cohort-matched non-donor? Because no such data exists.
Also, there is plenty of evidence to prove that more than four deaths from live liver donation have occurred in the U.S. Why OPTN continues to perpetuate this lower, erroneous statistic is something only they can answer.
I also find it interesting the writer mentioned Mike Hurewitz’ 2002 death, but said nothing about Ryan Arnold and/or Paul Hawkes, both in 2010.
“For comparison, OPTN officials estimate that there were 30 deaths of living kidney donors between 1999 and 2011, out of more than 83,000 live donor transplants.”
Except that a slide from an official OPTN presentation states that 44 living kidney donors died in the U.S. in 2000-2009 within 12 months of surgery.
But both siblings are back to work and have resumed normal lives with their spouses and kids. Kilcup ran a half-marathon within three months of the swap.
Now, she’s become an advocate for live liver donation.
Absolutely no mention of the 40% live liver donor complication rate.
July 21, 2013
4. Wife to give husband a kidney. Despite the headline, the article details the husband-recipient’s travails with health issues and providers which eventually lead to the need for a kidney transplant. The wife, his soon-to-be living kidney donors, is mentioned as the “happy ending”.
Mentions the transplant center where surgery will take place.
Nothing about risks of living kidney donation.
June 22, 2013.
5. NINTH CIRCLE Hosts Benefit Show To Find Kidney Donor. Just what it sounds like, a Los Angeles band is having a show to “get as many people screened to become a donor and ultimately find someone who is a match for…” a fan.
I wonder if any of the band members have stepped up to be tested?
(It probably goes without saying, but since that’s the purpose of this post, I will: not a darn thing about process or risks of living kidney donation)
June 24, 2013.
6. Twist helps kidney donor save dad, husband. See my rundown here (yeah, this one was so bad it warranted an entire post of its own). No talk of the reality of living donation at all. University of Maryland Medical Center’s publicity for their paired donation program.
7. Social media helps link kidney donor and recipient with rare blood type. Fluffy article about public solicitation for a living kidney donor. No mention of anything related to living donor risks, process or otherwise. The procedure hasn’t happened yet.
But it did pimp a fundraiser (and link to it).
July 25, 2013.
8. Social media helps link kidney donor and recipient with rare blood type. What it sounds like. One sentence referring to recipient’s insurance paying ‘most’ of the costs, and LKD taking time off work after donation. Nothing else about risks, complications, or consequences.
Oh and a link to a fundraiser.
9. Spokane pastor’s decision to give kidney leads to second match. Promotion of living donation via “God”.
Quote from transplant center’s Transplant Services Director regarding ‘advantages’ to living donation (for recipients, of course).
Quote from LKD about testing process, and early post-donation fatigue.
Nothing about risks of living donation.
Promotion of Sacred Heart’s program via living donor transplant statistics.
10. Facebook helps man find new kidney, hope for future. Professor’s kidneys fail, he has a transplant. Almost two decades later, he’s diagnosed with cancer [<- what the article doesn’t say is that anti-rejection meds greatly increase a person’s risk of cancer]. After the cancer treatment, he needs another transplant [<- second omission: certain drugs used in chemotherapy are nephrotoxic, meaning they can damage kidneys, causing them to fail.] One of his students solicits for him, and a woman responds and gives him kidney.
– many sentences about student’s new project to help other folks find kidneys – IOW promotion of living donation with no regard to donor protection.
– Quote from transplant surgeon about the ‘need’ for kidneys, cites inflated wait list.
– surgeon also repeats lie from Segev & Ibrahim about living kidney donors’ lifespans.
July 27, 2013.
– pimped specific transplant center.
– Quote from recipient which is erroneous and dangerous: “Becoming a donor is really not that dangerous, and the good it does, really outweighs the little risk,” Willie West said.
– no mention of living donation’s complications or risks
12. Local Teen Needs Kidney Transplant. Solicitation for adolescent boy in need of a kidney.
– no factual information regarding transplant, living donation process, etc
– Links to the solicitation websites.
July 28, 2013.
13. Families find hope on social media for relatives needing organ transplants. Recipient-centered article about soliciting using social media to find a living kidney donor. Nothing about the risks or process of living donation at all.
July 29, 2013
14. Donor found for 14-year-old Ware boy with kidney failure; community rallies support. Article centers around 14-year would-be recipient.
– Brief mention of potential living donor.
– ‘passed array of testing’
– no mention of complications, risks, etc.
– promotes fundraiser for recipient
– mentions specific transplant center
– detailed info about recipient’s kidney disease
– lots of “God-talk”
– small paragraph about evaluation process
– Screwed up the mortality statistic. Says “0.6 percent out of 10,000 donors”. It should say 0.6% OR 6/10,000.
– Also says “all costs [for donor] were covered by [recipient’s] insurance” which is untrue. Travel, lodging, food, childcare, lost wages, mental health treatment, etc. are NOT covered by the recipient’s insurance.
– Refers to the procedure as ‘minimal’ <- WRONG.
– No mention of other living donor risks or complications.
I was out of state for a week so I fell way behind on my google alerts. I had all intention of catching up and including them here, but well – I’ve got a full schedule these days. I suspect, however, I’ll be revisiting this topic at a later date.
15 ‘happy’ stories
10 erroneous statements or facts (including one regarding the wait list)
13 omissions of donor complications, risks or consequences
5 quotes from ‘experts’
6 transplant center promos
PS. Google alerts also delivered the following:
– transplant center video or webpage on living donor transplant – 7
– surgical, medical, technical topics – 8
– and multiple articles from outside the U.S.
*I’m sure she would argue with my characterization as a kidney broker, but that is indeed, the role she plays.
**including live liver donation, although there should be far fewer articles pertaining to that