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.

Recently, the New York Times featured a pair of provocative articles extolling the merits of incentivization in Iran:
Need a Kidney? Not Iranian? You’ll Wait
It’s Time to Compensate Kidney Donors

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).

-Jim


Jim,
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.

Respectfully, Gabe


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.

Comments

As does everyone, I agree with removing disincentives, broadly defined. I struggle with the concept of paying donors. Morally, I don't quite see the objection. We often hear "the human body is not for sale," nonsense! We routinely pay people more money to undertake dangerous jobs with a higher risk of injury or death than living donation. At the height of the Iraq war, the military was offering $50,000 bonuses to new recruits and lesser bonuses to those who chose to reenlist. And of course the troops on the ground were largely from poorer communities and families, as they have been in all our wars throughout recent history. We excuse this as being necessary to defend our country, as well as patriotic, "good and proper." Could we not make the same argument for organ donation? Isn't it in our national interest? Dr. Danovitch states that he would not want to worry if the medically complex donor was donating to pay the mortgage or afford college. But how is it better for the prospective donor to become homeless, or not have the opportunity to go to college? Given what we know about health disparities between the highly-educated and the less-educated, one could easily make the argument that the donor's health, even with the additional risks, would be in the long run worse by not donating and not going to college. I agree that it's sad that people would have to sell an organ to afford higher education or housing, and I work in my own way to change that, but disallowing the sale of organs will not fix that problem. However, I see that, practically speaking, the sale of organs is not a good idea. It will disincentivise truly altruistic donors and may not, as has been pointed out, increase the organ supply. And, notwithstanding the above argument, we as a society have a visceral objection to selling parts of the body. We ignore this custom at our peril. Rational or not, the public will not stand for a system that goes beyond ensuring that donors are financially whole.

Gabe's comments are right on target, in my view. Since there seems to be a broad consensus that living donation should be cost neutral for the donor, focusing our energies in helping to make that a reality should be a priority. There would be widespread consensus among the transplant societies in the United States and around the world, and probably even in the Declaration of Istanbul Custodian Group, and this unified support would likely be influential.

Hi all, The Iranian system is far more complicated than any of the comments mentioned above imply. Note that Iran has a 30 year history of compensating living organ donors. The system originally was a non-regulated market but now, the system varies greatly from province to province. Places like Tehran have a heavily regulated market, places like Isfahan and Mashhad arguably have no market at all. Yet, all three places have eliminated their kidney shortage -- they tend to have more donors registered than recipients. Please consider reading The Kidney Sellers: A Journey of Discovery in Iran. It describes both the history and the current variations in the Iranian system. The author, who originally was a free market advocate, journeys herself to a realization that a free market approach or even a market approach at all -- is not the right solution. Now she runs the American Living Organ Donor Fund and Stop Organ Trafficking Now!

Nicely done, Jim and Gabe. In a very complicated arena, the good will of those of us engaged in transplantation has enabled a consensus to build around the urgency of moving forward to ensure donors, regardless of socioeconomic status, do not suffer financial harm as a consequence of donating. One nice part of the Rosenberg articles was the recognition that, as John Gill published, donors and recipients most often originate in the same socioeconomic stratum, with the negative impact of donor costs most heavily visited on candidates most in need. As Gabe said, we must immediately focus our efforts on eliminating financial risk to all donors, even as we continue the broader dialogue that has brought us to the current consensus. Thanks, guys.

It is wonderful that more and more people are coming to a realization that compensating living organ donors for donation related expenses and preventing financial losses is not the same as paying donors. To learn a little about what donors want see TEDMED talk https://www.youtube.com/watch?v=VS9wkGjEdhQ and the donor wish list on the Stop Organ Trafficking Now! website. The American Living Organ Donor Fund is also preparing an article on its findings regarding donor financial needs based on the applications for assistance it has received. As far as we know SOTN! and the ALODF are the only U.S. charities that exclusively serve living organ donors and their needs. What we do for donors indirectly helps recipients, but helping recipients is not our mission.

Praise to both Jim and Gabe for eloquently articulating a difficult and complex issue that is a critical challenge to our Field. This is exactly the kind of principled and rational discussion that is so gratifying to hear from the American Society of Transplantation. It is our Society's obligation to provide leadership for the United States on this challenge. Yes, the challenge of disincentives vs. incentives can be polarizing. And the public expression and discussion of strong opinions from strong personalities involving complex moral, social and medical ethical issues can be quite uncomfortable sometimes. But discomfort with serious controversy cannot dissuade us from doing what the AST must do to work through the arguments on both sides, respect passion but avoid personal attacks, and stay focused on developing a plan that our membership can endorse. Leadership has a "cost" that must be paid. It will be an uncomfortable process at times and the end result will never be unanimous. I am even cautious to use the term "consensus". With that said, I am concerned about the tendency to be so dichotomous about such a complex problem. When we wrote the "Arc of Change: Disincentives to Incentives" article for AJT a major point was the concept of an arc of change, not a stark two state problem of "remove disincentives" vs. "pay for organs as an incentive". Yet we continue to hear this critical discussion manipulated into those terms. That is polarizing and that has been the ongoing battle for almost a decade that has served no one well, particularly our patients and their families. Yes, obviously there are strong proponents for paying organ donors. We respect and welcome their input. But there are many gradations along the arc of change for AST to consider and the extremes are not the only options. First, we totally need to remove all financial disincentives first and I agree with Gabe that coming together on that is critical. But one thing clear when we met first was that positioning the line on what is a "disincentive" and what is an "incentive" was not black and white but many shades of grey. Consideratiion of iIncentives never meant "pay donors a lump sum for donation" and that point was purposefully made in the article including the abstract. But that did not stop some from lashing out based on the premise that our use of the term "incentives" would only lead to the final extreme of just paying for donation. Dramatic but not justified. Much more limited kinds of incentives can possibly bridge a gap for some donors. Paying Jim's contractors for a service these workers trained to provide is the basis of our economy. Incentivizing soldiers to participate in a dangerous environment does not seem to generate any such drama. Measured plans to do pilot studies of much more limited incentives that respect the autonomy of the donors, pragmatically address the economic realities of American society for many, that are strictly designed and monitored externally by UNOS and the HRSA, do not have to damage altruistic donation, another dramatic threat that falls far short of evidence-based medicine. Can we come to some list of such limited incentives? That is the question we need to address together. If not, then that is a key decision. I hope that everyone will come to the AST Cutting Edge in Organ Transplantation (CEOT) meeting where Bob Gaston and I will create another opportunity for the AST to work towards a "consensus" that the AST leadership can use to build a plan around. Changing policy is going to be a major project as noted correctly by Gabe. But it is the AST's obligation to step up and advocate for that change as soon as we figure out where we all stand.

Compensate organ donors: Pay once – looks like payment for organ not for donor. Is it fair? Two articles in New York Times with more than 80 and 140 comments at July 31 and August 7 were accompanied joint AST and ASTS meeting in Minnesota with 5 major insurance companies. Debates were hot, unfortunately results are questionable. Ethical and financial issues were far not last points for it. There are only two ways to shorten wait list: increase donor pool and decrease amount of people required transplantation. Iran is one of countries with highly prominent live donation system. But author of articles in NYT pointed out that Iranian system has several failings: lack of follow-up, not all regions have patients associations with sufficient charity to allow poor people get kidney, system leaks, etc. Wait list in Iran is also relatively short (but also increasing now) in part due to health protection system deficiencies in rural areas where kidney diseases in many people are actually not diagnosed and so not registered. Thus, wait list included all patients need kidney transplant in Iran supposed to be longer. Plus, in ethical view Iranians have to pay like they do. It would be better for people because of poorly developed health system. But is it good for Americans? Developed health protection system and medicine in USA allows effectively diagnose and treat many human disorders. The main problem is financial. It’s very expensive. And organ-donors have to be protected for their life-span with very comprehensive medical insurance. Because they are definitely at greater risk for many diseases than regular population. Starting with point that average 70 year old person has only about 60% of kidney tissue functional, and loosing 5 and more percent every next 10 years. That’s OK for 2 kidneys, but what if there is only one in stressful conditions? And proceeding to postoperative consequences (I mean not just complications) early and late, etc. Is it fair to give American donors some money just once in described circumstances? It looks more like buying the organ. Of course, donors have to be COMPLETELY compensated for ALL their expenses due to donation process. And thereafter they have to be closely monitored and precisely treated free of charge for their life span. People sacrifice their organ in good will donating it to save somebody’s life. It’s a gift. (So ethical issue is eliminated.) But they receive life-span comprehensive health coverage (excluding cosmetic procedures or so) and other privileges (for example, in education, transportation, employment). These would be fair compensation to donor. Not just payment for organ. I am just afraid, that such compensation is pretty expensive and would involve too many institutions to be approved. It’s like well-known story with three-year payment for immunosuppressive therapy after kidney transplantation. Even after nationally recognized professionals presented this problem in Congress last year nothing changed. When immunosuppressive therapy stops, it leads to organ failure and dialysis 4 times more expensive but paid again plus wasting of scarce donor organs. Moreover, it adds names to wait list making organ deficiency more and more prominent. Konstantin Tchilikidi, M.D., Assistant Professor, Department of Surgery, Altai State Medical University

Dear Jim, I'm sorry, but I think payment for goods and services and payment for selling body parts are pretty distinct and I'm not sure what gross oversimplifications add to the discussion. The AST membership is pretty sophisticated regarding this topic and many members are directly involved in live donor selection have a nuanced perspective. I find endorsements by reporters (complete with inaccuracies and oversimplificaitons), and other views promulgated by certain recipients who are on personal crusades, also unhelpful. As detailed by others, the international experience with donor compensation has not been very pretty. The key point echoed by a number of others, is that there are many there are many non–controversial ways to "compensate" donors – by removing disincentives. Even these will require significant effort (think of the efforts to lengthen immunosuppression coverage) , but at least they are not controversial (think of the debate over planned parenthood). So why not move quickly on these first? More directly, at AST, this keeps going around and around … . While the viewpoint of the ASN leadership has become quite clear, what is less clear is whether our elected leadership is representing the views of the membership! What are the results of the detailed survey that was sent out to the AST membership? Why haven't these results been made public? These results are key. If most of us agree, then we should move forward. Best, David

Dear David, I want you to know that the AST leadership does go to great lengths to try to represent the diverse opinions of the membership on this and other issues. The principal reason that I invited Gabe to craft a response to my blog was because I knew that he and I see the issue of incentives differently. (Incidentally, Gabe and I are on exactly the same page when it comes to removing disincentives.) Too often, society leaders attempt to quash debate on subjects that are contentious. I feel that these debates are essential in having an informed and active membership. To this end, I thank you and the other respondents for stepping up and speaking your minds. The AST is full of highly talented members and our collective wisdom has to be better than any one person’s opinion. I’ll also point out that those of us who view the deficit in donor organs from an economic perspective (including the Nobel Laureate in Economics who will be speaking at CEOT) would not consider my apocryphal story to be an over simplification of a complex problem. Rather, we would consider the current system to be unnecessarily complex and economically irrational. I am guilty, however, of intentionally trying to be provocative to promote more engagement and interaction from our members. You asked about the survey that we conducted on this issue, and unfortunately the overwhelming response from the membership was ‘no response.’ It’s difficult to know what to make of this, as it is common for people not to read emails or answer surveys. Often apathy means that people either don’t feel informed enough on an issue to comment, or that they really don’t care much, one way or another. As the survey was done during Ken Newell’s time as president, I’m leaving it up to Ken to formally present this data, which I believe he is intending to do at CEOT. But, as a general answer to your question, among those who responded, there was overwhelming support for the removal of disincentives and a mixed opinion on providing regulated incentives to donors. We did not ask about a pure free market system, as we all felt that this would not meet the requirements of a system that could achieve social justice. There was some disagreement among the respondents about where to draw the line between incentives and disincentives. Personally, I don’t feel that there is a line, as all of these things are economic inducements that will promote donation. You even state this yourself in your reply when you mention that “there are many non–controversial ways to "compensate" donors – by removing disincentives.” You are quite correct here. Everything ranging from reimbursing a prospective donor’s hotel bill to sending them a $50,000 check is indeed ‘compensation’…and compensation influences human behavior. It’s just a matter of degree and deciding on which inducements are comfortable to us from a moral perspective. I also want you to know that the AST is actively working to remove disincentives. At the end of Dan's term and again at the end of Ken's terms, we conducted two meetings which centered on defining and removing disincentives, and the legal and economic issues around such a task. Over the past year, we have formed a coalition of private payors to develop a standard reimbursement package for donors, which includes lost wages. This is a difficult thing to achieve for a number of reasons, including the fear that such a benefit, if not done universally, would create what insurers call "adverse selection." where costly ESRD patients would flock to that one insurance company which provides this benefit. Our last meeting with this coalition was in mid-August, and it is clear that we have a number of engaged partners in the insurance industry that are very committed to this effort. It is really premature for me to say much more about this, as these negotiations are delicate, and I don’t want speak for others until we all reach a meaningful consensus. I have met with representatives from HRSA twice this year on a variety of patient-centered issues, including discussing ways in which a private insurance effort could be turned into a public-private partnership, so that such a benefit package would be available to everyone. I am also the first president to ever host leaders from transplant patient advocacy organizations for the specific purpose of making certain that the “view from my roof” is congruent with the view from our patients’ roofs. The removal of disincentives was a central focus of this meeting, and we issued a joint statement to this effect a couple of months ago. (http://www.myast.org/node/4080) This meeting was also a prelude to creating an AST patient advisory group. At CEOT, we will be hosting a number of these groups and some individual patients. Building and vetting these relationships will take time, but ultimately, it is patient organizations, in conjunction with us, that will be needed to drive this effort. Finally, we are also continuing our advocacy efforts in Washington on the issue of lost wages and guarantees of future insurability for donors, and our new relationships with patient groups should help to provide the grassroots support needed for this effort. Thanks again for your comments and interest. If nothing else, I hope that you can tell by the length of this response that the AST leadership is very interested in the opinions of the membership and our patients, and consider this type of dialog to be an important metric of the health of the society. Jim

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