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Advocacy Living Kidney Donor

So-called “Kidney Experts” Ignore Living Donors Completely

Kevin Sack of the NYTimes wrote a brief piece on the recent conference debating the need for a single registry to deal with LIVING kidney pairs, swaps and chains. The piece can be read in its entirety here.

Notice how not a single word was uttered in regards to the person whose kidney is being harvested, aka the living kidney donors? Notice how the ONLY thing the folks at this meeting were concerned about was A. protecting their own financial and otherwise interests and B. increased living donor kidney transplants?

Yeah. Same ole, same ole.

 

So I sent Mr. Sack an email. Granted, this was through the NY Times site, so who knows if it will actually reach him, or if some unpaid intern will scan and discard. But here it is, for your perusal:

 

Mr. Sack,

As I’m sure you’re aware, those involved with paired donation, swaps or chains are not cadavers, but living people who must deal with the lifelong consequences of relinquishing a necessary organ. NOTA 1984, which established the US deceased donor organ system, assumed that maximizing deceased donation would meet the need for transplants, rendering living donors an rarity and aberration. At no time did the writers of NOTA expect living kidney donors to compose nearly 50% of all donated kidneys. (Of course, deceased donation hasn’t been maximized either)

Consequently, nearly sixty years after the first living kidney donation, we still have no national standards of living donor care, leaving each of the 200+ transplant centers in the US to make up their own rules. In addition, we have no comprehensive short or long-term data on living donors’ health and well-being. In 2000, the Secretary of Health mandated one year of follow-up on all LDs (extended to two yrs in 2006) yet over a decade later, 30% of LDs are still reported ‘lost’. OPTN’s own data task force has ruled the database to be ‘woefully inadequate’ and ‘useless’ for research and analysis, and not single transplant center has been penalized for noncompliance.

Transplant recipients have a govt sponsored registry which follows them for ten years. Bone marrow donation, which carries as much risk as blood donation, also has a registry for its donors. Yet living kidney and liver donors have nothing.

‘Experts’ like those detailed in your article get together to brainstorm on how to increase living donor transplants – as if the kidneys they’re coveting aren’t attached to living human beings. A kidney isn’t a pint of blood, and more than 4 living kidney donors die each yr in the US within 12 months of surgery. 20% experience complications, and 20-30% suffer from depression, anxiety and PTSD. I understand the power the transplant industry wields, but I urge you to look beyond their recipient-centered message and consider what happens to the living donors not trotted out in press releases. We’re people too and we deserve the same consideration as the recipients we’re trying to help.

Cristy Wright, M.Ed.
founder, Living Donor 101

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