Follow-Up Living Kidney Donor OPTN

Living Donor Follow-up: Associated Press article, and guest commentary

Available for public comment are three OPTN proposed policies that directly affect living donor care and follow-up. Read and respond here:

AP reporter Neergard threw the problem out for public consumption here.

Fellow living kidney donor and living donor advocate Jane Zill, LICSW had to this to say (which I concur):

I think this is a wonderful article. Ms. McLear should be commended for her advocacy and Ms. Neergaard for her reporting.

However, in my opinion, news of inadequate data collection, variability in center practice, and lack of medical follow-up of living donors is old news. The most important story now is about the continued failure of UNOS/OPTN to protect living organ donors. UNOS/OPTN has had many, many opportunities to create policies that enhance living donor safety since it’s inception in 1986, and yet, it is still debating policies regarding minimal two year data collection that has been mandated by HRSA, has not acted to create a national system to prioritize former donors who progress to organ failure, and resists attempts to create standardized evaluation and informed consent protocols for living donors (which jeopardizes donor and recipient safety.)

Deficiencies in donor data collection have been noted for years, culminating with a 2008 Living Donor Data Task Force Consensus Report of UNOS/OPTN, which found that the data collected by UNOS/OPTN is “woefully incomplete for the purposes of research or informed consent.” The ramifications of this to the 109,000 who have become living organ donors in the U.S., and countless others abroad, are staggering.

I was a member of the Living Donor Committee of the OPTN (2007-2009), like Ms. McLear is now, but, came to realize that the conflict of interest within UNOS/OPTN regarding living donors is insurmountable because its membership is comprised of those with professional and financial interest in living donor transplantation.

It is not possible to promote living donation surgery as safe and the long-term consequences of nephrectomy as minimal, while meaningfully addressing the known or suspected attending problems, and informing the public of these problems. I believe that this is one reason that detailed, long-term data collection of living donors has been actively avoided by UNOS/OPTN and its member centers. An absence of data means an absence of information – as the saying goes, “See no evil, hear no evil, and speak no evil.”

Two years worth of data will not address the long-term health of living organ donors. I am tired of the rhetoric about new UNOS/OPTN proposed policies, and tired of the public funding the processes of UNOS/OPTN policy making that have been shamefully unproductive.

My concern about this article is the impression it creates that UNOS/OPTN only now realizes the serious lapses in safe guards for living organ donors and in data collection, and that it is quickly moving to create policies to remedy these lapses. These lapses have been discussed for years along with hype and debate about meaningless policy proposals.

Ms. McLear said it all when she stated, “Who’s taking care of the donor after surgery? Really no one is.” Allowing UNOS/OPTN continued authority over the care and follow-up of living donors is akin to allowing the National Rifle Association to create policies regarding gun sales. The conflict of interest is obvious and creates an unsafe climate for the public. UNOS/OPTN will never serve the best of interest of living donors, but will always serve the interest of its member centers and of its industry. Our most pressing need is not another round of useless UNOS/OPTN policy proposals, but to remove authority for the care of living organ donors completely from UNOS/OPTN and place it with an entity that is free of conflict of interest regarding living organ donation. If we can accomplish this, we will finally be able to collect the data on living donors needed for informed consent and after care, as well as establish crucial protections for those who become a living organ donor.

Jane Zill, L.I.C.S.W.

Living Kidney Donor, 1991

OPTN Living Donor Committee, 2007-2009

OPTN Living Donor Data Task Force, 2008

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