See Parts I and II to keep up with the conversation….
Segev and the Kidney Paired Donation Workgroup detailed all the aforementioned supposed ‘extra’ expenses to KPD to set the foundation for their big request: money. And not just any money, but a ‘fee’ paid by the federal government, Medicare and Medicaid, and private insurance companies (which really means us, the consumer). They envision another contractor like OPTN or SRTR, only this one will administer a national kidney paired donation program.
The reason Segev and company need to ask for the above is because when NOTA 1984 established OPTN, a taxpayer (and private insurance company) funded organization, it was to manage a national DECEASED DONOR transplant system. Not living donation. And not living paired donation (such a thing didn’t exist then). At the time, the various facets of the federal government believed that if deceased donation was maximized (which hasn’t happened), the need for donor organs would be met. But they also knew it would be squicky for the government to financially support a transplant system that involved taking major organs from healthy, living people. Especially when we had no idea how taking a kidney from someone affects their health in the long-term.
So proposing that the living, breathing people involved in kidney paired donation be treated like cadaver donors is a bit – well – unsettling. To be sure, a couple of voices in the room (on the phone?) were squawking that such a thing was ‘allocation’ and well within the bounds of OPTN’s purpose, but nowhere in NOTA or any other piece of transplant legislation does allocation refer to living donors. Even though OPTN has decided that they can and will allocate non-directed donors, that doesn’t mean such a practice couldn’t be legally challenged. It just never has.
But I was bothered by the kidney paired donation workgroup’s recommendation that the public support a national KPD program for another reason.
Currently, living kidney donors comprise approximately 6000 transplants every year in the US. This means that since 1988, nearly 117,000 people have compromised themselves to help a person with end-stage renal disease*. During all that time, the federal government (aka the public) has funded a 10-year registry for transplant recipients, to track their health and well-being. But it wasn’t until 1994 that anyone collected any identifying information on living donors at all. And i it wasn’t until 2000 that the Secretary of Health mandated that transplant centers report one-year of follow-up on all their living donors.
A transplant center was only required to report a living donor’s status to receive credit from OPTN, but a presentation at the summer 2012 ACOT meeting revealed that 35% of kidney donors were still marked ‘lost’. One year post-donation, U.S. transplant centers had no idea if more than one-third of their kidney donors were alive or dead.
The transplant industry’s collective excuse for this non-compliance and negligence was that it was an ‘unfunded mandate’. They simply had no money, they insisted, to make sure that living donors, the people who provided the treatment for their end-stage renal disease patients and made their surgeons and facilities a tidy profit meanwhile, were cared for properly.
Yet not once in those 12 years did a single transplant center or physician suggest that public money be used to ensure transplant centers’ compliance with the mandate. No one has ever suggested that the same infrastructure used to track and collect data on transplant recipients be applied toward living organ donors. By all appearances, locating funding for a living donor registry has never, ever been a consideration.
But they have no problem soliciting the federal government and the American public for money to run a program that has, so far, resulted in a maximum of 600 transplants per year.
I wish I could say that was the only insult the workgroup’s presenters threw in living donors’ faces.
Stay tuned for Part IV (the last one, I swear!)
*there were living kidney donors from 1954-1987 but those numbers are estimates and I don’t have them memorized or on-hand.