In the second of two parts, Dr. John Gill (JG) continues to discuss his paper about using financial incentives to increase organ donation in Canada with Dr. Vinay Nair (eAJKD), eAJKD Advisory Board member. For the first part of the interview, please refer to the previous post.
eAJKD: You mention the possibility of crowding out altruistic donation by getting rid of the disincentives. To clarify, this would be for non-directed living and deceased donors, right?
JG: That’s correct. I think that’s a requirement.
eAJKD: It’s hard, because it could even be seen as discriminatory in certain ways.
JG: It is difficult to do otherwise. I think that we’re really talking about non-directed donations. We don’t really have a good sense of how the Canadian public feels about non-directed versus directed payments. I think in general, right now there is no appetite for payment for directed donations in Canada. I don’t think anybody’s talking about. And if you harken back to the paper in AJT by Arthur Matas, he makes a point of the principles of that system being non-directed.
eAJKD: It would seem difficult for a disadvantaged individual who wants to donate to a distant cousin that they heard has ESRD to understand why they aren’t getting any incentives to donate.
JG: Exactly. And I think that that’s one of the issues. We talk about the different theories on changing people’s behavior. The amount of money you’re going to have to pay somebody, or the amount of financial incentive for a non-directed living donation, is probably going to have to be substantial in Canada. It’s not going to enable somebody to start up a small business. We don’t have any sense that would be acceptable to the majority of Canadians. What we think might be acceptable is small rewards and removing disincentive. In that situation, you can imagine that most of the reward is going to be people who are already inclined to donate.
We’ve got a pretty successful living donor paired exchange program that’s truly national in Canada. Amongst the Canadian programs, there’s very few of us that will actually speak to directed donors about participating in the paired exchange. In our program, the pair exchange is part of our standard booklet to living donors. When I interview living donors, what I tell them is, “Look, you’ve come here to donate a kidney to your brother or somebody you know. But if you’re going to donate an organ, I think it’s appropriate that you be informed of all the benefits that you can do with this organ. Whether you choose to participate in paired exchange or not is up to you.” For people like that, if you are able to separate out the decision to donate so it’s not coercive, you’re coming back to them and saying, “Okay, you can multiply your gift by being in a paired exchange.” Would it be appropriate to then compensate somebody in that situation? Now, I don’t know what the response of people would be. In fact, Lloyd Ratner had done a survey which looked at this in a very crude way. We’re actually updating that survey right now, to see what directed donors would think. “What would it take of you to participate in a paired exchange? Would it be a better kidney for your loved one? Maybe a younger donor? Would it be a better match? Or would money actually change your mind to do it?’
eAJKD: Financial incentives – is it a quick fix or a fallacy?
JG: Just go back a little bit to the Declaration of Istanbul. The wording in that document around commercialization was that commercialization was bad and should be prohibited — and that wording was chosen strategically because it leads to the exploitation of vulnerable populations. That, of course, leaves the door open to the possibility that commercialization could be acceptable if it didn’t lead to exploitation of vulnerable people.
But the reality is, since Istanbul, the expectation was that dialogue on that very point should have continued. The reality is sadly that it did not. In fact, I think what’s happening now is there is going to have to be some increased dialogue on what is acceptable means of commercialization.
eAJKD: Is there anything that you mention in your paper that you believe could be used in the United States? Do the same ideas apply?
JG: Most people in the United States tend to believe that they just don’t have enough organ donors. And generally speaking, that’s much more of a solid statement in the United States than it is in Canada. In Canada, there are tons of potential donors that are simply not being recognized, and it really is a shameful commentary on our system. We are letting organ donors go by the wayside. Still I would challenge the notion in the United States that with 30% discard rate, and more regulatory concern, in the future organs are going to be perhaps even discarded at a higher rate. The U.S. has always been the country that’s pushed the envelope and innovated on organ donation, and tried to get the best out of this therapy. If now, individual transplant centers are becoming more conservative, then you’re always going to have an unmet need. The ESRD rate is Canada is vastly different than it is in the United States, and that’s all not just ethnic diversity. There’s more to it than that.
The whole issue needs to be looked at from a step back, which is preventing the need for transplantation in the first place. People on dialysis will benefit from not discarding organs, but focusing on keeping native organs going.
If there is one message that I think could translate to the US is to say, look, Canada does have a much lower deceased organ donation rate than the United States, but if you look at the prevalent treated ESRD population, what proportion of them have a functioning transplant versus on dialysis? It’s higher in the U.K and Australia than it is in the United States. So it is not all about organ donation.