Here’s a new draft brought to you by the blizzard currently striking NYC. Same caveats as the previous one. Thanks to everyone who’s provided comments so far.
Please let me know any ideas for how to make it better. In particular, it got even lengthier, so if you have ideas for how to shorten it, I’m in great need.
Four years ago, when I became a kidney donor, I passionately believed that the government should pay people for their kidneys, save a great deal of money, and rescue tens of thousands from a grueling death. So in 2013, I left my job at a corporate law firm (and my home in Boston), moved to Toledo, and joined the transplant field in order to enact this change.
A year after that, I co-authored a letter in favor of incentives signed by hundreds. By that June, I’d received a grant from a major foundation to plan a nonprofit to bring incentives to the transplant field. But then I changed my mind.
I didn’t change it all at once or entirely. I still think donors should be treated better than they are. A lot better. But what’s different is where I used to think kidneys could be an item to be purchased by a government monopoly, now I think it’s a bad idea to treat organs as just another commodity up for exchange. Instead, for kidney donation to be respected, our society needs to treat it like an act of public service and to honor donors accordingly.
Here’s how I got there.
Why I Liked Incentives
The kidney transplant shortage might be the most underrated public health problem in America. The current waiting list is a hundred thousand names long. Each year, twenty thousand more people go on the list than receive a transplant. That number represents 50% more than all the homicides committed in the nation last year. Year after year, this shortage crisis represents a truly massive number of lives lost.
<infographic comparing mortality of car accidents, gun related homicides and suicides, kidney failure, war deaths>
Kidney donation is a safe, laparoscopic procedure. Most donors are out of the hospital after a couple nights and off prescription painkillers after a week. Donors lead normal, healthy lives.
As with any surgery, there are risks: about 1% of donors will develop kidney failure over their lifetime, compared to 0.1% if they hadn’t donated. By contrast, the lifetime risk in the general population is 3.2% (kidney donors are healthier to start with). Like any surgery, donation can have complications, but the chance of dying is just 3 in 10,000.
And there is uncertainty; the real risks may be higher than our estimate. People have been donating kidneys for sixty years, but ascertaining exact health effects decades down the line for an unrepresentative population is an epidemiological struggle– one that with necessarily imperfect results.
But what is clear is that kidney donors remain as healthy or healthier than the general population after they donate.
Moreover, kidney donation saves the government a great deal of money: Medicare guarantees coverage for patients with kidney failure regardless of age, and over their first five years, transplants cost $60K less per year than dialysis. Since a living donor kidney lasts for fourteen years on average, saving $300K per transplant is conservative.
That means the government could easily afford to pay $50K or $100K for donors to undergo a surgery that is safe and saves another person’s life. If you persuaded one in two thousand Americans to take that deal, you’d end the shortage tomorrow. No more waitlist: a hundred thousand lives saved; a hundred thousand families rescued from tragedy.
Back when I donated, it seemed like a no-brainer.
And while it’s reasonable to worry that most kidney sellers would be poor, the shortage is itself extremely discriminatory. Minorities make up 38% of the American population but 63% of its waiting list. African Americans get kidney failure more often, are less likely to be listed for transplant when eligible, wait longer for an organ once listed, and are less likely to find a living donor. An incentive system could correct vast inequities in access to life-saving care.
The Problem with Incentives
When I moved to Toledo, Ohio to join the Alliance for Paired Donation, I didn’t know anyone that lived in the Midwest. I had a lot of free time.
Much of that was spent gorging on Netflix and text messaging with my ex-girlfriend, but some was spent on kidneys and some smaller portion of that was spent trying to understand why people disagreed with me about incentives. Since I’m a philosophy geek, that meant reading authors like Elizabeth Anderson, Margaret Radin, Lewis Hyde, and Michael Sandel to better understand commodification and the philosophy of market exchange. That led me to reconsider my views.
To vastly simplify, commodification is when you take something that’s sacred and sell it like it’s scrap. But sacred how? A bible is sacred, but selling bibles does nothing to tarnish them.
Things are commodified when selling them reduces them from a rich, multi-dimensional source of value down to just their worth as a dollar figure. Picture prostitution. Whether or not it should be legal, whether or not it can be empowering for workers who perform it, there is some change in meaning of a sex act when it includes a transaction for money. If this were the only the type of sex we had access to, we would justifiably feel diminished.
The commodifying effect of organ selling isn’t purely hypothetical. While organ trafficking is a scourge throughout the developing world, Iran is the only country where it’s legal to buy and sell an organ. Not coincidentally, it’s reported to be the only nation without a shortage.
But in many parts of the country, kidney donation is a source of shame and signal of desperation. Rather than feeling honored to have saved a life, donors may hide their good deed for fear of being treated as a lesser person who sold off a part of themselves.
That does not mean the decision can’t be a rational one—the going rate is more than the average annual income. But a decision can leave us worse off in some dimensions that cannot simply be converted to money or aggregate welfare
Somewhat embarrassingly, the example that best illuminated this for me was my time as a corporate lawyer. Like many such, I was all at once unreasonably well-paid, extraordinarily lucky to have the job, and absolutely miserable. Though it may have been completely rational to sell years of my life for money, in some real way it left me diminished.
So how to weigh this risk of commodification against the benefits? I’m honestly not sure, but I do know the lives saved by incentives don’t just erase the problem. A society that looks down on kidney donors as desperate and unclean – as mere human vending machines – would be unspeakable no matter how much healthier it was than our own.
Moreover, diminishing the value of donation could also have bad consequences. Living donors currently give 5,500 kidneys a year; deceased donors 11,500 more: will people still be so generous if the status of organ donation were to decline?
And then there’s the risk. What would the price of organs even be? How much would it cost to buy up enough organs, even the ones that were now given for free? Would donors lie about their health history to be able to donate? How would we avoid trying to save on cost by neglecting safety standards? Market incentives would represent a drastic change with consequences that aren’t totally knowable.
The national regime of organ donation took hard effort to build and relies on only the public’s good will to survive. Jeopardizing that system through drastic change could sacrifice people who definitely receive transplants today for the mere potential of lives saved tomorrow. We should avoid that risk if at all possible.
When my co-founder Thomas Kelly and I started the planning of Waitlist Zero in 2014, we conducted a listening tour of the transplant field. We saw great respect for this 2006 paper arguing for lifetime health insurance for kidney donors. The leading professional societies published a paper in favor of incentives, but were fearful of brooking controversy: to many in the field, cash incentives would never be acceptable.
On the other hand, free health insurance for donors just make sense. Donors risk their lives in ways that are limited but real and not perfectly known. They do it to help others, and their gift helps not just the recipient but the broader community as a whole. Public servants like teachers, firefighters, police officers, and soldiers all receive special benefits that are not reducible to cash (e.g. health insurance, early retirement, free education). Why can’t we think of donors the same way?
A GI Bill for kidney donation wouldn’t be stingy, but it would avoid the worst problems of incentives. Transplant support would treat kidney donors like public servants. Far from commodifying donors, transplant support would honor them. Instead of crowding out generosity, support would nourish it. It builds from the current system and sets an example that we would want the rest of the world to follow.
In practice, respecting donors as public servants could mean things like:
- Free lifetime health insurance to alleviate and offset the risks of donation;
- annual research stipends to donors to encourage participation in follow-up study and care;
- reimbursement of donation expenses like lost wages, travel, and childcare expenses;
- public recognition with a National Organ Donors Day.
I admit that the idea isn’t perfect and the details need to be worked out. But the kidney shortage is a crisis, and these measures have broad support today. We need to move beyond the old debate about incentives and forge a new path.
If you told me there was a button I could push tomorrow that would install incentives and end the shortage, I’d still have a hard time saying no. The lives saved would weigh too heavily for me to honestly prefer the status quo. But that’s not the best system we can create. It would leave donors worse off and risk failing entirely.
Transplant support would end the shortage by treating donors with respect. It is the best way I could come up with to simultaneously save tens of thousands of lives and improve our society’s sense of dignity and self-respect. It is what I am working to achieve today.