Advocacy OPTN

Living Donor Webinar July 17

If you want insight into transplant professionals and OPTN’s attitudes, perspectives, and current goals regarding living donation, register for this free teleconference. Live tweet, take notes, write a blog post, contact OPTN’s President afterward with any concerns…


Region 10 Educational Webinar Series – Living Donation

July 17, 2013

12:00pm ET



Ensuring Informed Transplant Decision-

Making Through Improved Dialysis Patient Education

Amy Waterman, PhD

Barnes Jewish Hospital


Choosing to Help – What compels such compassion for living organ donation?

Sarah Seaton, Chair, Nursing

Breckinridge School of Nursing


Live Donor Champion: Separating the Advocate from the Patient

Dorry Segev, MD

John Hopkins Hospital


Please use the link below to register for the meeting. Once registered, you will receive a confirmation email containing the live meeting and teleconference information for the meeting.

Please note that the link you receive is valid for ONE entry into the live meeting. If multiple individuals at your institution wish to participate, please view the live meeting together or register separately to receive individual log on information.

In order to ensure good sound quality, all participants will be required to dial into the call using the teleconference information provided in the confirmation email. Once logged into the live meeting you will receive a PIN that will need to be entered when calling to participate in the Q and A portion of the call. If you will ONLY be participating by teleconference, you may enter the “#” sign when the PIN number is requested.

Registration Link:

Living Donor Protections Living Donor Research OPTN

Reality of Independent Living Donor Advocates

First some history: In 2007, CMS (Medicare) passed a Final Rule, which included the creation of an Independent Donor Advocate. The responsibilities of the IDA are as follows:

(1) Representing and advising the donor;

(2) protecting and promoting the interests of the donor; and

(3) respecting the donor’s decision and ensuring that the donor’s decision is informed and free from coercion.


in 2011/2012, a group of researchers attempted to identify every U.S. transplant center’s IDA and sent each of them a survey. 69% of IDAs answered and returned the survey, the results of which were published in 2012.

When asked to identify their job responsibilities:

  • 49% – Advocating, protecting and promoting the best interest of the donor.
  • 40% – Educating the donor.
  • 36% – Evaluating the willingness and emotional stability of the donor.
  • 31% – Assuring the donor is not being pressure or coerced.
  • 29% – Ensuring the donor understands the informed consent process.


Moral of the story: Despite the very clear language of CMS Final Rule 2007, and four years after implementation, transplant centers’ Living Donor Advocates clearly have no idea what their job is.

And if they don’t know their jobs, they’re leaving prospective living donor vulnerable and unprotected.


Steel’s study reveals a lot about how IDAs are chosen and trained (or not). These revelations are important on their own, but even more so considering that OPTN has a proposed policy  (#4) on the Independent Donor Advocate currently up for public comment. I encourage everyone to read Steel, read the proposed policy and let OPTN (and the transplant industry) know what you think.



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 (8), 2141-2149 DOI: 10.1111/j.1600-6143.2012.04062.x