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