As mentioned in my prior post, HRSA gave OPTN authority to develop living donor policy in 2006. For some unstipulated reason (as far as I can tell), HRSA and UNOS established a joint societies working group in 2010 to help develop these policies. This is confusing, mostly because OPTN has a plethora of committees to do this very thing, but also because the organizations chosen are all recipient-focused; they profit and benefit from living donor transplants:
American Society of Transplantation (AST)
American Society of Transplant Surgeons (ASTS)
Organization for Transplant Professionals (NATCO)
The fruits of their labor, a consensus document on the “Evaluation of the Living Kidney Donor”, can be found here. Clocking in at 30 pages, you’ll want to settle in.
Their charge was: “…provide recommendations to OPTN/UNOS regarding appropriate requirements for the medical evaluation (including psycho-social evaluation) and informed consent of potential living kidney donors as well as post-donation follow-up and data submission.”
Yet not a single member of the group is a mental health professional. In order to alleviate this oversight, they appointed a psychologist, psychiatrist and social worker (no counselor, hmm), but gave them NO VOTING RIGHTS in the final document. Good to know we mental health folk are still viewed with such disdain by the medical community 🙂
A highlight from page four: The formal acquisition of detailed long-term follow-up information on donor outcomes may require extramural organization and financial support, and should not be considered an essential component of transplant center compliance.
Good to know the health and well-being of living donors is less important than obtaining transplants for recipients.
Page Seven: The stipulation that transplant centers will provide potential donors with both national and center-specific outcomes from the most recent SRTR center-specific report. This information should include, but not be limited to the center’s 1-year patient and graft survival, national 1-year patient and graft survival, and notification about all CMS outcome requirements not being met by the transplant center.
This is recipient data. Why aren’t living donors given national and center-specific data on living donor deaths, complications and the like?
Baseline risk of ESRD is the same as those in the general population with the same risk profile.
Should they develop CKD, their progression to ESRD may be more rapid than people with two kidneys.
It’s good to see this admission considering the official stance of the transplant industry has always been that living donors are ‘healthier’ than the general population, so their reduced GFR doesn’t have the same meaning.
Page 10 is a doozy:
Potential Longer-Term Financial Risks:
• Loss of employment or income;
• Impact on the ability to obtain future employment including, but not limited to military service, law enforcement, aviation, and fire department employment;
• Impact on the ability to obtain or afford health, disability, and life insurance; and,
• Future health problems experienced by living donors following donation may not be covered by the recipient’s insurance.
Just yesterday I read a blog post on a major mom-centric site written by the wife of a would-be recipient who said “all expenses are paid by the recipient’s insurance”, and she referred her readers to a site run by UNOS. The site doesn’t use her exact wording (although I’ve read it in hundreds of feel-good articles about living donation) but it does hedge on the issue with the phrase “required postoperative care”. Required by whom? To what end?
Disclosure initially, and as a part of the final step in donor acceptance or refusal, that selection policies and protocols may vary significantly among reputable centers, specifically in accepting, or declining donors who may be at increased medical risk.
Yoo-hoo, read between the lines! This means there are NO standards for living donor ‘acceptability’!
Page 11: However a normal medical evaluation cannot accurately predict future risk of ESRD, especially in a very young donor.
In my post about waitlisted living kidney donors, I noted what while 34% of all living kidney donors were between the ages of 18-34 when they donated, 63% of LKDs waitlisted also fell into that age range. While future risk of ESRD can’t be predicted, informing a prospective living donor of the above fact would be the ethical thing to do.
This is one of my favorites (so much so that I will bold):
To date, there have been no randomized controlled trials to determine the testing required for the evaluation of living kidney donors.
That’s right, folks. For all the transplant industry’s talk of ‘minimal risk’ and ‘safe’, they don’t even know the best tests to run to properly evaluate a prospective living donor. After 50 years and over 100,000 living donor transplants and they haven’t figured that much out? Hm.
CHECK IT: ASTS is seeking comments on their consensus document, so read and decide for yourself.