And here is my response, posted in the comments:
As indicated, one year of living donor follow-up has been required of transplant centers since 2000 via OPTN policy. In 2007, CMS (aka Medicare) lengthened this reporting requirement to two years. However, enforcement has been non-existent, with Tuttle-Newhall in 2008 revealing that some transplant centers are getting OPTN credit for submitting forms although ALL their living donors are ‘lost to follow-up’. Clearly, they didn’t even bother.
As indicated in a 2009 survey by Mandelbrot, 78% of transplant centers prefer living donor follow-up care to be done by the living donor’s primary care physician. The Cleveland Clinic is no exception. I donated a kidney in August 2008 and live a mere 15 minutes from the nearest CCF satellite office yet was referred to my primary care physician for any and all follow-up care. (And no, I was not contacted about this program even though it was implemented months before my required two-year follow-up)
Required follow-up for living donors includes a blood draw, urine sample, and information regarding rehospitalizations. It does not concern itself with financial hardship nor issues like depression, anxiety or PTSD which some living donors experience. Be aware that CCF’s program only addresses the minimum required by federal law, and they do not have any support services in place for these living donors.
OPTN has recently posted a proposed policy* to make the transplant center who conducts the living donor surgery responsible for any and all follow-up. This is not coincidence. The Cleveland Clinic’s announcement is an attempt to get ahead of the proverbial curve. If they actually cared about their living donors, they would have an actual Living Donor Advocate as defined by CMS Final Rule 2007 and they would’ve done something like this a long time ago.
*Can be read here (#3): http://optn.transplant.hrsa.gov/policiesAndBylaws/publicComment/proposals.asp