The View from My Roof
Winter in Boston was rough this year. By mid-February, the snow had drifted above my rooftop. When the last snow melted late in April, it was clear that I had some damage to my roof. I started to pull my ladder from the garage, but my wife stopped me, knowing that my sense of balance was not one of my stronger attributes. She insisted that I call a repairman, saying, “Let someone else go up there...you’ll kill yourself!” What she was really saying was that I should hire someone who either values his safety less or needs money more than I do. I acquiesced and found a roofer who did an excellent job repairing my roof. Then something really silly happened.
He went to his truck to write me a bill.
I told to him that there was no need to do that, since I never pay contractors who work on my house. I explained that I knew working on my roof would be risky, and that paying him could be perceived as being coercive. Plus, I didn’t want to do anything that would commoditize or degrade his craftsmanship. He was initially mad, but then I explained to him that instead, I would invite him to the annual barbeque that I host on my front lawn for all the unpaid contractors who have helped me throughout the years.
I got the idea for the barbeque when a serviceman came to my house on Labor Day in 2002 to power-flush my clogged main drain. He had been at a picnic with his family, which he had to leave (with his whole family in the truck) to deal with my sewer. When he emerged from a manhole covered in what had to be at least three weeks' worth of waste, I knew I couldn’t pay him -- particularly with his whole family watching from the truck. What would his children think if they saw me paying their dad like some sort of cheap streetwalker? It was then that the "Annual Contractor Appreciation Barbeque" became the obvious answer. It’s really a nice event. We have hotdogs, hamburgers, balloons, and a big sheet cake decorated with hand tools made out of icing. We're expecting almost 100 people this year!
But that’s what I don't get...we have all of these contractors every year at our barbeque, but it keeps getting harder and harder for me to get one to come to my house when I need some work done.
I am posting this apocryphal story to stimulate discussion around a number of issues related to the removal of disincentives and to donor incentivization.
Over many years, a number of thoughtful professionals have proposed economic manipulations as a way to promote organ donation. These proposals have ranged from reimbursing potential donors for travel expenses (as is currently done by NLDAC and most private insurers) to a regulated system of cash incentives for donation, in which the reimbursement is fixed and the payment is derived from the money saved by taking patients off of dialysis (a procedure which is far more costly than transplantation in the long run).
Under such a regulated system, the organs would still be allocated under our current allocation rubric. Thus, there would be no bidding war for organs or someone "jumping the line." A system such as this could only function in a society that has the rule of law and a fundamental belief in social justice.
Many are opposed to incentivization for fear that this will extinguish altruism or for the simple reason that they do not feel that the human body should be commoditized. Others are concerned that implementing such a system in the United States might result in the propagation of unregulated "black" markets in countries where the rule of law and the concept of social justice are less strong.
While I am not suggesting that Iran is the ideal role model, I do think it is worthwhile to investigate alternate organ donation systems around the world in an effort to develop the best possible solution here in the United States.
I ask any AST member to respond to the following questions in the comments:
• Have we guaranteed a perpetual shortage of organs by legislating that organs have no economic value to the donor?
• Is there a distinction between removing economic disincentives and providing incentives, or are they just gradations of the same underlying principle?
• Do people really have a right to "do what they want with their bodies," and does this include selling an organ? (We pay people for plasma, we pay people now for sperm and eggs, we pay people now to surrogate a pregnancy...)
• Are we protecting the poor from potential exploitation by forbidding them from being paid for an organ, or are we being excessively paternalistic and denying them an opportunity to live a better life and help someone in the process?
• What would be the worldwide consequences of the United States adopting regulated incentives for organ donors, and should concerns outside the United States be sufficient reason to limit options within our country?
This summer, AST Past-President Kenneth Newell, President-Elect Anil Chandraker, and I met with the leadership of a number of patient advocacy organizations. These leaders told us that many of their members (including a large number of altruistic donors) probably would not support cash incentivization, largely due to the belief that the human body should not be "put up for sale." However, there was universal support for removing many broadly-defined barriers (financial and logistical) that make it difficult for many to fulfill their wishes to become living organ donors.
A recent survey of AST members shows that the majority of our members are undecided on incentivization, but overwhelmingly supportive of the removal of broadly-defined disincentives.
I’d love to hear from everyone, regardless of your position on this issue. To start, I have invited veteran AST member Gabriel Danovitch to write the first response to this blog. Gabe has been instrumental in working to oppose black markets in organ trade, and he is the co-chair of the Declaration of Istanbul Custodian Group (DICG).
Your announcement that the AST, together with other relevant stakeholders, had issued a joint statement strongly supporting the removal of financial disincentives to living organ donation came as breath of fresh air. Even better, it now appears from your blog that this policy is supported (not surprisingly) by most AST members and by the patient groups you engaged. There is also broad agreement on what "removal of disincentives" would entail: travel and lodging expenses, lost work coverage, and life, health, and disability insurance to cover potential complications, together with long-term follow-up of organ function, all non-means-tested. In other words, organ donation should be made "financially neutral" in the broadest sense, without undermining the well-deserved halo of pride that is such a frequent feature of non-paid "altruistic donation."
But let's be clear (and don’t let your roofing contractor kick up too much dust here!) -- achieving this goal will not be easy. After all, we are still struggling to achieve the far simpler goal of coverage for long-term immunosuppression.
To achieve financial neutrality for organ donation, we will need to be single-minded and crystal clear: not just among ourselves, but when communicating with government officials, insurers, and the community we serve.
With all due respect to your rooftop and sewer adventures, there is a world of a difference between a job your contractor does for you and living donor transplantation. The former is a commercial transaction and the latter a medical procedure. As physicians and surgeons, we are responsible for the health, measured in the broadest sense, of both the transplant recipient and the living organ donor. Your contactor will look after himself, I’ve no doubt!
And when I sit in at our weekly living donor committee meetings and struggle with my colleagues over accepting the young African American donor to a parent, or borderline obese Hispanic donor to a diabetic sibling, the last thing I need is the nagging worry that the donor needs that financial incentive to pay for college, or a mortgage, or the like. Do we really want to live in a society where the less fortunate among us need to donate an organ to meet basic needs? Do we want to turn a system based on trust and mutual caring into one based on suspicion?
And one more thing, Jim -- I am an avid reader of the New York Times, but your promotion of the Tina Rosenberg pieces serves to promulgate the gross and irresponsible inaccuracies that formed the basis of her enthusiasm for the Iranian model (give me a Spanish model any time!). It is an urban myth that death on the wait list in Iran has been eliminated by "regulated" organ selling. As reported in a 2014 Iranian journal article, Iran's wait list was proportionally worse than the wait list in the United States (compared to number of transplants).
I contacted Ministry of Health colleagues in Iran, who confirmed that Iran’s wait list continues to increase and that there are major problems with access to transplantation (original data and correspondence available on request). The Iranian "regulated market" (an oxymoron if ever there was one, since in our globally connected world, paid donation cannot be regulated and an international "donor market" would inevitably ensue) has become a weight around the neck of Iranian authorities and their "donors," who do poorly both medically and psychosocially.
Finally, recall how parental donation fell in the United States when children were given priority for young deceased donor organs. This is another useful reminder that "incentivized" donation will not solve the organ donor shortage and could very well make it worse.
On the other hand, in Israel, a national campaign in the last few years to promote donation and to systematically remove financial disincentives, coupled with efforts to prevent transplant tourism to the Philippines and elsewhere, have led to a gratifying flowering of altruistic donation.
I welcome the opportunity to put aside this time-worn debate -- with its false analogies between roofers and plumbers carrying out their business and those less fortunate than the AST readers of this blog making a one-time kidney sale for a desperately needed financial incentive (i.e. cash). Now is the time to exploit the overwhelming unity behind removal of financial disincentives.
We must do this not just because it will likely increase living donation, but because it is the right thing to do. Our wonderful donors, constant reminders of human decency in an often cruel world, deserve no less.
Jim, many thanks to you for the opportunity to respond to your blog.
The gap between the demand for and the availability of organs has never been greater. Tackling this mismatch requires a multifaced approach to address issues at all levels. If you are interested in the future of organ donation, don't miss the CEOT 2016 meeting.