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Living Donor Misinformation

Journalistic Integrity – Fail

A recent google alert dropped off an article in Bethesda Magazine entitled “Desperately Seeking Survival“. Aside from the piece being “all over the place” as a living donor advocate cohort of mine described it, the article is also chock full of those annoying statistical and otherwise errors I adore so much.

Like most websites, I could’ve left a comment online, but I decided to send a letter to the editor instead. To whit:


As a living donor, I must comment on Matthew Boswell’s “Desperately Seeking Survival” due to its misrepresentations and omissions.

Boswell states: “UNOS is considering giving preference to younger people on the list—those likely to get more years out of a donated kidney. Someone like Greer, who is approaching 60, would likely be out of luck.”

The proposed UNOS kidney allocation policy says nothing of the kind. Currently, recipients skew much older (34.7% are 50-64; 26% are 18-34) than deceased organ donors (22.2% and 17.6% respectively). The proposed policy suggests age-matching organs and recipients so that a kidney expected to survive 20 years isn’t transplanted into a recipient only expected to live five. The document also revealed that thousands of viable organs from donors over the age of 50 are being discarded, and would now be utilized, resulting in a greater total number of transplants done each year.

“As it is, 18 people on the national transplant list die each day”

In 2002, UNOS allowed “inactives” to remain on the kidney waitlist indefinitely. As of 2007, 1/3 of the kidney list was considered inactive, meaning they were unable to have a transplant even if an organ became available. According to Delmonico and McBride’s analysis in 2008, 52% of the deaths on the waitlist are inactives, effectively cutting the ‘official’ mortality in half. Also, if a candidate dies within one week of being removed from the list, it is counted as a ‘wait list mortality’.

Boswell’s discussion of wait list growth is also incorrect. While active registrations did grow approximately 5% per year from 1999 through 2003, there was a slight decrease in 2004, and UNOS has reported a ‘flattening’ since 2007.

4.4 living kidney donors die each year in the US within 12 months of surgery. Approximately 20% experience short-term post-op complications such has hernia, pancreatitis, chylous ascities, adrenal dysfunction, nerve damage, intestinal blockage, testicular swelling and sensitivity, etc. 20-30% suffer from depression, anxiety, anger, PTSD, financial or other psychosocial difficulties. Meanwhile, not a single transplant center offers aftercare or support services.

There is no long-term data on living donors’ health and well-being. Even though centers have been required to report one-year follow-up since 2000, 30% of living donors are ‘lost’ by the one-year mark, and OPTN’s own data task force reported the data as ‘woefully inadequate’ and useless for analysis or research in 2009.

Reduced renal function means a lifetime higher risk of hypertension, cardiac disease and death, and kidney disease and death. Since 1994, nearly 300 living kidney donors have registered on the wait list in need of their own transplant.

The question of compensating living donors is abhorrent. Published studies from every country with legal or illegal organ sales has reported negative outcomes from the kidney donor. It’s a great system for the surgeons and hospitals, and mostly positive for the would-be recipients, but means death, maiming and reduced quality of life for the kidney donors/vendors. Not surprisingly, everyone quoted in Boswell’s article in support of compensation is not a living donor.

A simple web search would’ve revealed a committed group of living donors who have worked tirelessly for years to increase protections and standards for living donors while supporting and helping those the transplant industry has abandoned. How is it that Mr. Boswell could pen such a lengthy article without including a single one of their names?

Yeah, I had a lot to say. Here’s the response I received:

Hi, Cristy.
Thanks for writing with your thoughts on Matt Boswell’s organ transplant story.
I’m sure you can appreciate that any story in a print publication is limited in terms of how much it can include in a given amount of space. We strive to be as fair and accurate as possible within those limits, and both I and the copyeditor who fact-checked the story were satisfied with his representation.
I can’t publish all of what you wrote–we edit letters to the editor both for clarity and for space–but I would be happy to publish your thoughts on living donors, since you are one. I would, however, need to be able to say what city you live in. Just let me know if you’d like me to do so.
Again, thanks for taking the time to write.
Best,
Lisa Shroder
Managing Editor
Bethesda Magazine

Just for the record, fact-checking means cooroborating information from a third source…UNOS and OPTN’s own websites list active versus total candidates, so where the HELL did these editors look??

Secondly, really – these editors will allow a writer to propose an idea as controversial as ORGAN SALES but not require even a single sentence on why that might be a catastrophic fucking idea?? On what planet is that defined as ‘fair and accurate’?

And finally, “But I would be happy to publish your thoughts on living donors, since you are one.”

Ahem. I’m not just a living donor. I’m one of the people who clean up the mess the transplant industry and irresponsible and uncaring media folk like yourself create when they perpetrate the lie that living donation is ‘safe’ and living donors are nothing but organ offers for poor, sick recipients.

I didn’t say that of course. Instead, I said this:

Lisa,

Unfortunately, I can’t allow any editor who claims to be satisfied with a story this overrun with errors and misconceptions to accurately represent my views. Entertaining the ideas of an entitled recipient like Sally Satel and a deluded renegade like Dave Undis, but not speaking to a single living donor or IDA is far from an adequate journalistic standard.

The Narrative Inquiry in Bioethics, an academic journal, is assembling an entire issue to the ethical considerations of living donation. I encourage you and Mr. Boswell to read it.

In retrospect, I should’ve pointed her to Deborah Shelton’s work too.

Look, I know what it is to be an editor, and I know what it is to have unhappy readers. But there’s a vast difference between some thin-skinned musician whining about a reviewer who didn’t like their record, versus someone who actually knows something pointing out that your writer got his facts wrong, especially about important things that affect people’s – you know – lives. Yes, you support your writer and you even explain how sometimes “these things happen, stuff falls through the cracks”, but you most certainly do not refuse to correct the errors then blame it on ‘clarity’ and/or ‘space’. Not if you want to keep your journalistic ethics intact.

**Wait List Watch**: 72,345 active candidates.

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