For the nearly 80,000 Americans who are on waiting lists for organ transplants, this is probably not news: Though all 50 states have been trying to encourage people to sign on as donors for years, all those efforts have barely made a dent in the organ shortage.
That’s the central finding of a new paper just out in the journal JAMA Internal Medicine, and it prompts a provocative commentary in the same issue — Time To Test Incentives to Increase Organ Donation – co-written by Yale’s Dr. Sally Satel. An excerpt:
“We believe it is time for disruptive innovation. By this concept, we mean compensating donors, not simply seeking to soften the financial ramification of donation. It is time to test incentives, to reward people who are willing to save the life of a stranger through donation. … Our current transplant system is inadequate for the task of boosting the volume of organs needed for life-saving transplantation. Altruism is not enough. Pilot trials of incentives are needed.”
Food for thought: The commentary suggests not a free market and lump sums of cash for organs, but a government- or charity-run system of “in-kind reward,” like, say, a tuition voucher for about $50,000, or payments covering funeral expenses. Readers, what do you think?
I spoke with the lead author of the article that documented the failure of current policies to make a dent in the organ shortage: Dr. Paula Chatterjee, a clinical fellow in Internal Medicine at Brigham and Women’s Hospital. Our conversation, lightly edited:
How would you sum up what you found?
We know that thousands of patients die every year because of shortages in organ supply, and finding ways to address this public health issue is critical. States have passed a variety of strategies over the past few years, but we didn’t know if any of these strategies have been successful. What we found is that for the most part, these strategies have had almost no effect on increasing organ transplants and donations over the last few decades.
Basically, what we can say is that in states that adopted these strategies vs. those that did not, the rates of donation and transplantation were essentially the same. The only strategy we found that may have had a very modest effect is the creation of revenue pools — which is basically a way for a state to put aside a pool of money, whether it’s from voluntary contributions or state-dedicated funds, to promote organ donations in whatever way the state feels would be helpful. And even that policy alone had a pretty modest effect.
Is it just that it’s too big of an ‘ask’ for policies that nibble around the edges?
I think it could be a couple of different things. Possibly, it’s that states are adopting these policies but not reaching the public in an effective way, and therefore these strategies may just not be meeting their full potential if people don’t know about them.
It’s also possible that the policies themselves aren’t sufficient to motivate donations, exactly as you’re saying. We know, for example, that living kidney donors take on a cost of about $3600 in loss of income and other costs, but the tax breaks for donors tend to be much less, often in the hundreds of dollars, so it may just not be enough.
So overall, this study is the first to look at the effects — or, it turns out, the lack thereof — of these policies to encourage donations nationwide?
Exactly — to our knowledge, this is the first national study to look at a variety of policies. We were able to look at six different policies and previous studies have just looked at isolated policies in smaller settings.
We were also able to look at living vs deceased donors, to better understand where our efforts might need to be better targeted.
It struck me as such a drop in the ocean — you found a state would get at best something like 15 additional transplants a year when 7,000 people are dying.
Very much so. We were surprised to see such a modest effect but it’s all the more important to know that we just need to be more creative in how we’re approaching this problem. I think it’s great that states are serving as these small experimental grounds and trying out these different things, but what we know now is we may need to just take different directions.
When you look around the world, has anybody cracked this problem and if so, how?
There’s been a lot of work done on ‘opt in’ vs. ‘opt out’ policies, which has been covered widely — not so much in the US but a lot in Spain and Israel. And early research on those efforts shows they may be promising, but it’s still early to tell because they’re still so new.
So the countries trying ‘opt out’ — that means your organs WILL be donated unless you sign something, right? You can’t help but wonder whether we might just need more Draconian measures like that…
Those policies are being used abroad and I think that understanding whether they are successful will be incredibly helpful. I think we’ll need time and to better understand what it is that limits people from becoming a donor in the US. Perhaps it’s very different from what limits people from becoming an organ donor in Israel or in Spain. But if we do have encouraging data from these other settings, it’s certainly something we can learn from.
What else is being tried here?
In the US, there’s further work that ‘s being done looking at organ chains, specifically for kidney transplants, and how that could be a really effective strategy for living donor shortages specifically related to kidney donation. And there’s also been some work looking at changing the consent process.
One strategy you mention in the paper is “first person consent laws,” which was a term I hadn’t heard before — that’s saying: If the person has consented to donate then the family can’t stop them?
Theoretically yes, that is what those laws state. However, in real life, what we often see in the hospital is that even if a patient has expressed the desire to donate, if the family or loved ones do not agree with that decision, often it’s overridden. So there’s been some discussion about changing how we get consent primarily for that reason, because even if I express my desire to be a donor, it may not be realized.
What policies do we have in place here in Massachusetts?
Massachusetts has passed the donor registry as established by driver’s licenses where you can express your desire to be a donor. They also have passed education policies where, whether in driver’s ed or public schooling, you learn about becoming a donor. Massachusetts has also passed a revenue policy made up of voluntary contributions that go into a fund, and the state decides how to use that money and promote organ donation.
So all the people who have done this donor checkoff when they got their driver’s licenses — are you saying to them, it might be having a little effect but not much?
Not much of an effect. At the individual level, if you are someone who wants to become an organ donor, tell your loved ones that this is a desire you have. Oftentimes there is this unfortunate disconnect between what somebody registers as their consent to donate and whether those donations are actually realized. That’s one place to start on an individual level.
On a broader scale, I think it means we may just need to be a little more creative in terms of how we approach organ donation. And I think to answer that question we really need more local, more granular data. We know these revenue pools may have a small effect, but what are they actually doing with that revenue? We don’t have that data and I think that would be a good place to start.