Back in 2010, California’s legislature bought into Steve Jobs’ charisma and passed the nation’s first living kidney donor registry. Not the type of registry we donor activists are fighting for, the type that would collect data about living donors’ health and well-being after donation, but a government approved list of folks who would be willing to donate a kidney to a stranger.
The law gave no thought to the lack of protections, standards or data on living donors, and made no provisions for ensuring the prospective living donors were free from coercion, not being paid, or otherwise preyed upon. Nope, they ignored the fact that Steve Jobs used his money and influence to cut in line to get a liver(1), and decided that California’s healthy citizenry should be lined up like some science-fiction story to be used as medical supply for those diagnosed with end-stage renal disease*.
So the following was inevitable. A group has formed, comprised of “representatives of 12 California kidney transplant programs” and “the state’s four organ procurement organizations”(2) to persuade California residents (at least I think it’s only for CA’s population; could non-CA people sign this registry?) to give a up a kidney**.
The website has a page dedicated to ‘educational videos’ so I watched the “Riskes [sic] to Living Donors” video and found it filled with half-truths and hand-picked happy living donors to further the propaganda – er – advocacy*.
Here are my thoughts, in order of how it appears in the video:
1. “10,000 laparoscopic procedures done yearly.”
This is a completely misleading statement. Approximately 6000 living kidney donations are done in the U.S. every year. What constitutes the other 4000 – kidney removals of the non-donor type? A living donor nephrectomy requires much more surgical skill than a non-donor nephrectomy, because a live donor nephrectomy necessitates the kidney to be removed unharmed, plus the addition of renal vessel for re-implantation into the recipient. A non-donor nephrectomy isn’t concerned about the state of the removed kidney because it will be thrown away.
A steep learning curve for the laparoscopic procedure is well documented, meaning that the more experienced the surgeon, the less complications for the patient. Just because thousands are performed every year does not mean a particular surgeon is experienced in the approach.
2. “3 to 6 months after the donation…”
Kidney donors have to live with that one kidney FOR THE REST OF THEIR LIFE, not just “three to six months”. We know that kidney function declines as one ages. Telling a prospective kidney donor that they’ll be in the “low of normal range” of kidney function in 3-6 months means very little for the kidney donor in 20, 30 or more years. (Not to mention that some LKDs do not end up in this so-called “low range of normal”)
Didn’t I just post about this yesterday?
3. “Diseases attack both kidneys” so donating one “didn’t make me think I would be at higher risk for needing a transplant”. <- from a LKD
Folks get cysts or tumors on one kidney and not the other, so I’m not sure what this “both kidneys” business is about. For the sake of argument, I’ll assume she’s referring to chronic kidney disease in the broadest sense.
Anyway, we have NO evidence one way or another that donating does or does not increase one’s risk of kidney disease or kidney failure(3). As has been stated, because end-stage renal disease appears in one’s 50-60s, it is impossible to calculate a 25 year old prospective living donor’s lifetime risk.
Nearly 400 living kidney donors have been wait listed for a kidney transplant since 1994, a number that grew 13% in one year. From that, we can safely infer that additional living kidney donors with end-stage renal disease are choosing dialysis over transplant, or have chronic kidney disease but haven’t reached kidney failure. What any of this has to do with the video’s statement is beyond me.
4. “Insurance covers donor work-up and surgery”
It should also cover post-donation complications or mental health treatment, but we know the problems living donors have had with billing for those things… Of course, the video never uttered the words ‘complications’ or ‘depression’, so…
5. The transplant center knew “Which was the best one [kidney] to take” <- said by a LKD
Wait- what??? The left kidney is taken by default, unless there is a reason not to, because the left kidney is more easily retrieved. Yes, sometimes one kidney is significantly larger than the other, and in which case, they would take the smaller of the two, but there is no way to map the nephrons or function capacities of each kidney individually, and determine which is ‘better’ for the recipient (or donor).
What was this living kidney donor told that made him think the physicians had this kind of power?
6. “Women can have children [post-donation]”
But it IS higher risk. A living donor’s remaining kidney hyperfiltrates/hypertrophies. A two-kidneyed pregnant woman’s kidneys hyperfiltrate/hypertrophy. A living donor’s one kidney, because is already at full capacity, cannot adapt to accommodate the increased strain of pregnancy. What this means is largely unknown because no one has bothered to study it in detail. The few articles published on pregnancy post-donation, and on pregnant women with kidney disease, show higher maternal and fetal risks. So yes, it is possible, but it is not as low risk as it would’ve been prior to donation.
For a video supposedly about living donor risks, absolutely nothing concrete was actually said about them. No mention of the 4.4 living kidney donors that die every year in the U.S within 12 months of donating. Not a word about the 20% who experience complications, or the 20-30% who suffer from depression, grief, anxiety, anger or PTSD. Less than nothing about the lack of data, standards or protections. If the video is to be believed, kidney donation is about as dangerous as a hangnail removal. Which makes the video, and this group who espouses it, dangerous.
Worse is that one of the people identified in this video is the co-chair of OPTN’s living donor committee. Not only is she NOT a living donor, she’s a well-established recipient advocate. In other words, her goal is to get kidneys for folks with renal disease, not ensure living donors’ health and well-being. Because of that, she never should have been appointed to the LD committee in the first place(4). Her involvement in this project is just proof that living donor safety is low on her priority list*.
PS. I scrolled some of the other pages on the website and not surprisingly, the text is overwhelmingly pulled from UNOS website. A whole 274 words is devoted to “medical and psychological risks”.
(1) Then died a year later, provoking debate on whether or not he should’ve gotten a liver transplant in the first place.
(2) The folks that financially benefit from transplants. Last time I knew, OPOs were prohibited from participating in anything living-donation related. So much for governmental oversight.
(3) Saying that a living kidney donor’s risk of kidney failure isn’t higher than the general population is NOT the same as saying that living kidney donation doesn’t increase one’s risk.
(4) Which should tell you something about how OPTN works
*Some days I lose my patience and refuse to pussyfoot around.
**I thought long and hard about including a link to the site and video, because I’m big fan of source material, but they really don’t deserve any more page views.