Kelli,
You claim there's an extensive training process, but you've provided no concrete examples or evidence. I visited livingdonors.org and frankly, if it's an example of NKF's attitudes toward LKDs, it does little to assuage the concerns I have about this program. The information provided to prospective living donors is incomplete and lacking references. More so, half the site is dedicated to teaching would-be recipients how to ask for a kidney.
I realize the mention of your social work license is meant to reassure me and others, but transplant center professionals are licensed in their various disciplines too. As 60 years of history can attest, this has done very little to create a protective and caring environment for potential or current living donors. The Independent Donor Advocate was created by CMS Final Rule 2007 as an attempt to counter the acknowledged pro-recipient bias of the transplant system. In the ensuring 8 years, we've seen plenty of problems with the implementation, education, and performance of those individuals, and very little sign of resolution.
One example:
Steel, J., Dunlavy, A., Friday, M., Kingsley, K., Brower, D., Unruh, M., Tan, H., Shapiro, R., Peltz, M., Hardoby, M., McCloskey, C., Sturdevant, M., & Humar, A. (2012). A National Survey of Independent Living Donor Advocates: The Need for Practice Guidelines American Journal of Transplantation, 12 (
, 2141-2149 DOI: 10.1111/j.1600-6143.2012.04062.x
How are these "mentors" evaluated? Will all phone calls be monitors and taped, the conversations reviewed and feedback given to the "mentor"? What quality control measures has NKF implemented to ensure the people seeking "support" are not harmed?
What is NKF and/or the peer mentor's liability in this situation? Are the people seeking "support" required to sign a waiver?
NKF's stated mission is the "awareness, prevention and treatment of kidney disease". As we all know, living donor kidneys are viewed as the "preferred" treatment for kidney failure. So how will you, as the peer mentor program manager, or NKF, or the peer mentors, ensure that prospective living donors' concerns, health or well-being will be prioritized ahead of would-be recipient's "need" for a transplant?
Not so long ago, NKF claimed that living donors were part of their constituency, and vowed to advocate for them (See: End the Wait). They formed a living donor council. They set up a survey and encouraged living donors to fill it out.
In a very short time, the NKF email list-serv, which many people found invaluable, was shut down without warning or explanation. The LD Council went dark. And the survey data disappeared in the ether. What assurances do we have that this will be any different, or that we can trust NKF to look out for *our* interests as opposed to the encouragement or promotion of living donation?