Why High Incentives Cause Repugnance, by Robert Stüber

 Here's a nice experiment in the EJ:

Robert Stüber,Why High Incentives Cause Repugnance: a Framed Field Experiment, The Economic Journal, 2024;, ueae018, https://doi-org.stanford.idm.oclc.org/10.1093/ej/ueae018 

"Abstract: Why are high monetary payments prohibited for certain goods, thereby causing shortages in their supply? I conduct (i) a framed field experiment with a general population sample and (ii) a survey experiment with this sample and with ethics committees. In the experiment, participants can prohibit others from being offered money to register as stem-cell donors. I document that, whereas the majority of participants do not respond to changes in the incentives (63%) or become more in favour of the offer with higher incentives (20%), a minority of 17% prohibit high incentives. I show that this minority wants to protect individuals who are persuaded by high incentives. I also show that a lottery scheme reduces their objections to high incentives. Finally, I document that the public is much more supportive of high incentives than are ethics committees."

"In the experiment, participants can prohibit a transaction that involves another person signing up as a potential stem-cell or bone-marrow donor for money.1 Participants initially make a decision for two distinct amounts of compensation: one low (€10) and one high (€500). The main outcome is participants’ willingness to pay for prohibiting or permitting the offer. I find that the majority of participants (63%) do not respond to changes in the incentives or become more in favour of the offer with higher payment (20%). A clear minority (17%) reveal a stronger preference for preventing the offer when the payment is €500 rather than €10. This finding is mirrored in a second outcome, in which separate participants make simple binary decisions to prohibit the offer or not.

"Why do some participants want to prevent high monetary incentives for signing up? I answer this question by randomly assigning participants to different treatments. In the main treatment, Reservation Price, participants again decide whether to permit an offer of €500 for becoming a stem-cell donor. However, they know that, even if they permit the offer, the offer will be made only if the individual potentially receiving the offer agrees to sign up as a donor for €10 in an independent decision made beforehand. If the individual is not willing to sign up for €10, no offer is made. Put differently, the treatment ensures that the €500 offer is made only to individuals with reservation prices of €10 or less. The offer therefore cannot attract individuals with high reservation prices. The treatment drastically reduces the resistance of individuals who prefer low incentives: the median person who was previously willing to pay €2.50 to prevent the €500 offer is now willing to pay €1.50 to permit it. "

Compensating kidney donors: a call to action by Brooks and Cavanaugh in the LA Times

 Here's a clarion call for compensation of living kidney donors, from two nondirected kidney donors.  It's not the first, and very likely not the last, given the difficulty of modifying the existing law.  But it makes the case very clearly (and proposes that a tax credit spread over ten years might be the way to move foreward).

Opinion: A single reform that could save 100,000 lives immediately BY NED BROOKS AND ML CAVANAUGH, JULY 9, 2023 

"Never in the field of public legislation has so much been lost by so many to one law, as Churchill might’ve put it. The National Organ Transplant Act of 1984 created the framework for the organ transplant system in the United States, and nearly 40 years later, the law is responsible for millions of needless deaths and trillions of wasted dollars. The Transplant Act requires modification, immediately.

"We’ve got skin in this game. We both donated our kidneys to strangers. Ned donated to someone who turned out to be a young mother of two children in 2015, which started a chain that helped an additional two recipients. And Matt donated at Walter Reed in 2021, after which his kidney went to a Seattleite, kicking off a chain that helped seven more recipients, the last of whom was back at Walter Reed.

"Ned founded, and Matt now leads, an organization that represents nearly 1,000 living donors

...

"eight years ago, when Ned donated, the number of living kidney donors was 6,000. With all the work we’ve done since, the number of living donors is still about 6,000 annually. In the United States, nearly 786,000 people suffer from end-stage kidney disease, more people than can fit in the 10 largest NFL stadiums combined.

...

"More Americans die of kidney disease than of breast or prostate cancer, and one in three of us is at risk. This illness is widespread, but what makes it worse is the staggering financial burden borne by everyone. The head of the National Kidney Foundation testified in March that Medicare spends an estimated $136 billion, nearly 25% of its expenditures, on the care of people with a kidney disease. Of that, $50 billion is spent on people with end-stage kidney disease, on par with the entire U.S. Marine Corps budget.

...

"The National Organ Transplant Act prohibits compensating kidney donors, which is strange in that in American society, it’s common to pay for plasma, bone marrow, hair, sperm, eggs and even surrogate pregnancies. We already pay to create and sustain life

...

"The ethical concerns regarding compensation are straightforward. Nobody wants to coerce or compel those in desperate financial straits to do something they would not have done otherwise. The challenge, then — until artificial or nonhuman animal substitutes are viable options — is to devise a compensation model that doesn’t exploit donors.

"Compensation models have been proposed in the past. A National Institutes of Health study listed some of the possibilities, including direct payment, indirect payment, “in kind” payment (free health insurance, for example) or expanded reimbursements. After much review, we come down strongly in support of indirect payment, specifically, a $100,000 refundable federal tax credit. The tax credit would be uniformly applied over a period of 10 years, in the amount of $10,000 a year for those who qualify and then become donors.

"This kind of compensation is certainly not a quick-cash scheme that would incentivize an act of desperation. Nor does it commoditize human body parts. Going forward, kidney donation might become partly opportunistic rather than mostly altruistic, as it is now. But would it be exploitative? Not at all."

...

Ned Brooks and ML Cavanaugh are living kidney donors, and Brooks is the founder of the Coalition to Modify NOTA.

********

Here are all my posts that mention Ned Brooks, starting with this one:

Friday, February 26, 2016

A Freakonomics listener was inspired to become a non-directed kidney donor by the podcast on kidney exchange

Cryopreservation of organs for transplants, and Sebastian Giwa in Forbes

 Forbes has a long, interesting, somewhat breathless story about the progress and promise of freezing organs for transplants, including not only the usual eight organs, but also bone marrow/blood stem cells. It focuses on one of the entrepreneurs in the field, Dr. Sebastian (Seb) Giwa, and his colleague Jedd Lewis among others

New Breakthroughs In Cryopreservation Poised To Transform Organ Transplantation, by Alex Zhavoronkov, PhD, Jul 5, 2023

"To understand how this came about I delved into the career of the founder and CEO of Sylvatica Biotech, Dr. Sebastian Giwa (called “Seb” by his friends). Seb is credited by many as the chief architect of the surge of scientific interest in cryopreservation over the last several years.

Sebastian Giwa, PhD, MBA 

BRIDGET BENNETT

...

"Trying to donate organs (without cryopreservation) is a lot like trying to donate perishable (non-canned) food: there are certainly a lot of starving people in the world, but good luck finding a recipient for every single ounce before it expires. 

...

"[Organ Preservation Alliance]  partnered ... to publish position papers, including a peer-reviewed article in Nature Biotechnology outlining the need for an organ cryopreservation research effort. The paper was co-authored with all of the major U.S. transplant societies and a star-studded lineup of scientists including Robert Langer, George Church, and Ed Boyden, and even Nobel Prize-winning economist Alvin Roth – whose work has focused on finding new ways to ameliorate the organ shortage. It is currently in the top 1% of the most widely read scientific articles published since its release.

...

"Donor bone marrow is lifesaving for many kinds of  cancers and a variety of other blood diseases. Successful bone marrow transplants have been performed since the 1950s, but the challenge is finding a source of bone marrow to transplant – especially since donors and recipients must be matched for genetic factors even more precisely than some organ transplants.

...

" if bone marrow could be cryogenically banked, why not procure it from deceased organ donors who were already providing hearts, livers, and other organs for transplantation? There are nearly 40,000 such donors worldwide each year, and each could potentially donate enough marrow for multiple patients in need. For many patients, when a transplant was needed the matching bone marrow would already be available in the bone marrow bank.

"From the perspective of the deceased organ donor and the OPOs, this would be like providing an opportunity to donate an additional lifesaving organ. Traditionally, each donor can provide up to eight lifesaving vital organs: a heart, two lungs, two kidneys, a liver, intestines, and a pancreas. In essence, bone marrow would be the ninth. And if a donor could provide bone marrow to multiple recipients, this might even double the number of lives that each donor could save.

...

"Alex: What’s something we haven’t covered that excites you about what cryopreservation can do for the organ shortage?

"Seb: In the long-term, one of the things that I’m most excited about is how these technologies can remove barriers to developing transplant systems in new countries. Most of the world still doesn’t have access to deceased donor transplantation. For instance, Africa has 16% of the world’s population but only 0.5% of transplants are done there. Meanwhile the U.S. has less than 5% of the world’s population but does about 25% of the world’s transplants. Many developed countries, like my father’s home country Ghana, have limited live kidney donation programs. But they don’t have deceased donor programs, which are needed to carry out large numbers of kidney and liver transplants as well as any sort of heart or lung transplantation.

"That’s partly because the logistical demands to source organ donations prospectively require so much infrastructure: a waitlist, rapid matching of donors to recipients, OPOs that need to be overstaffed in order to deal with unpredictable surges in organs available, rushed activities that require tight coordination between donor hospitals, OPOs, transplant centers, and even third party service providers like organ couriers. Many organs have also needed expensive transportation (private jets and helicopters).

"It’s a very different situation when there’s a source of cryopreserved hearts, livers, etc., that can be donated in a much more flexible way and are simply waiting to be matched to patients. Even things like Doctors without Borders and perhaps “OPOs without Borders” become possible for transplantation, helping train and develop new organ recovery, heart, lung, and liver transplant programs. So many more possibilities open up when you don’t need to create every part of a transplant system from scratch and have all of those parts acting in synchrony on Day 1."

**************

Here's the original article referred to:

The promise of organ and tissue preservation to transform medicine 
 Sebastian Giwa, Jedediah K Lewis, Luis Alvarez, Robert Langer, Alvin E Roth, George M Church, James F Markmann, David H Sachs, Anil Chandraker, Jason A Wertheim, Martine Rothblatt, Edward S Boyden, Elling Eidbo, W P Andrew Lee, Bohdan Pomahac, Gerald Brandacher, David M Weinstock, Gloria Elliott, David Nelson, Jason P Acker, Korkut Uygun, Boris Schmalz, Brad P Weegman, Alessandro Tocchio, Greg M Fahy, Kenneth B Storey, Boris Rubinsky, John Bischof, Janet A W Elliott, Teresa K Woodruff, G John Morris, Utkan Demirci, Kelvin G M Brockbank, Erik J Woods, Robert N Ben, John G Baust, Dayong Gao, Barry Fuller, Yoed Rabin, David C Kravitz, Michael J Taylor & Mehmet Toner

Nature Biotechnology 35, 530–542 (2017) doi:10.1038/nbt.3889
Published online 07 June 2017

Abstract: The ability to replace organs and tissues on demand could save or improve millions of lives each year globally and create public health benefits on par with curing cancer. Unmet needs for organ and tissue preservation place enormous logistical limitations on transplantation, regenerative medicine, drug discovery, and a variety of rapidly advancing areas spanning biomedicine. A growing coalition of researchers, clinicians, advocacy organizations, academic institutions, and other stakeholders has assembled to address the unmet need for preservation advances, outlining remaining challenges and identifying areas of underinvestment and untapped opportunities. Meanwhile, recent discoveries provide proofs of principle for breakthroughs in a family of research areas surrounding biopreservation. These developments indicate that a new paradigm, integrating multiple existing preservation approaches and new technologies that have flourished in the past 10 years, could transform preservation research. Capitalizing on these opportunities will require engagement across many research areas and stakeholder groups. A coordinated effort is needed to expedite preservation advances that can transform several areas of medicine and medical science.

************

Here's a recent related post:

Wednesday, June 28, 2023

Freezing, thawing and transplanting a rat kidney: a first step towards organ banking

Donate blood or organs to pay a traffic fine or shorten a prison term?

I spend a lot of my time thinking and writing about repugnant transactions and controversial markets, and some of that intersects with my work on blood and organ donation and transplantation (particularly on the controversial issue of compensation for donors, and how that might intersect with varieties of coercion). But today's post is about two proposals that mix all these things together. (My guess is that many people will find them differently repugnant: think of them as a quick test of your own views.)

In Argentina, a municipal judge proposes blood donation to pay traffic fines, and in Massachusetts several legislators co-sponsor a bill to allow bone marrow (blood stem cell) donation or organ donation to reduce prison sentences.

First, blood donation and traffic fines:

 Mario Macis points me to this story in La Nacion, about a city in the Argentine province of Salta:

En una ciudad de Salta las multas de tránsito se pueden pagar con una donación de sangre  [In a city of Salta, traffic fines can be paid with a blood donation]  (English from Google Translate)

"In the city of Tartagal, Salta, it is possible to pay a traffic ticket with a blood donation . The measure, taken two months ago, generates both support and questioning.

...

"The judge of the Court of Misdemeanors of the Municipality of Tartagal, Farid Obeid , proposed in a ruling last August that those who had traffic fines could pay them with their own blood donation or from third parties on behalf of the offenders.

"It was then determined that donations be made in hospitals, voluntarily and only once; that is to say that repeat offenders cannot opt ​​for blood donation.

...

"The ruling received support and criticism, the latter basically from the health sector. Oscar Torres, president of the Argentine Association of Hemotherapy, Immunohematology and Cellular Therapy , sent a letter to the Deliberative Council of Tartagal indicating that the measure removes the "spirit of solidarity and altruism from blood donation" 

Here's a related story about the ongoing debate (also using Google translate):

Controversy over an unusual municipal project: they claim that fines can be paid with blood. "This controversial project was presented to the Deliberative Council of Tartagal, and criticism has already begun"

***********

And here's the new bill proposed in Massachusetts (don't hold your breath waiting for it to be passed into law). It's in English, so the phrase about the necessary "amount of bone marrow and organ(s) donated to earn one’s sentence to be commuted" isn't a translation error; I think it's just awkward (i.e. not meant to be chilling). (But the discussion of donated "organ(s)" makes me think of Kazuo Ishiguro's novel "Never Let Me Go"). 

Bill HD.3822, 193rd (Current), An Act to establish the Massachusetts incarcerated individual bone marrow and organ donation program

"Section 170. (a) The Commissioner of the Department of Corrections shall establish a Bone Marrow and Organ Donation Program within the Department of Correction and a Bone Marrow and Organ Donation Committee. The Bone Marrow and Organ Donation Program shall allow eligible incarcerated individuals to gain not less than 60 and not more than 365 day reduction in the length of their committed sentence in Department of Corrections facilities, or House of Correction facilities if they are serving a Department of Correction sentence in a House of Corrections facility, on the condition that the incarcerated individual has donated bone marrow or organ(s). 

...

"The Bone Marrow and Organ Donation Committee shall also be responsible for promulgating standards of eligibility for incarcerated individuals to participate and the amount of bone marrow and organ(s) donated to earn one’s sentence to be commuted. Annual reports including actual amounts of bone marrow and organ(s) donated, and the estimated life-savings associated with said donations, are to be filed with the Executive and Legislative branches of the Commonwealth. All costs associated with the Bone Marrow and Organ Donation Program will be done by the benefiting institutions of the program and their affiliates-not by the Department of Correction. There shall be no commissions or monetary payments to be made to the Department of Correction for bone marrow donated by incarcerated individuals."

Simultaneous HT to Ron Shorrer, Kim Krawiec, Akhil Vohra

Repugnance to high incentives, by Robert Stüber

Here's a paper that seeks to understand why some transactions are permitted when only low incentives are offered, but banned when high incentives are offered. (Donation of human eggs is one example; high payments to participate in experiments is another...)

WHY HIGH INCENTIVES CAUSE REPUGNANCE: A FRAMED FIELD EXPERIMENT* by Robert Stüber

WZB Berlin March 2021

Abstract: A key feature of markets for repugnant transactions is that certain transactions seem to raise moral concerns only when they involve high monetary incentives. Using a framed field experiment with a representative sample, I show that these preferences exist, and I investigate why people display it. Participants can permit or prevent a third party from being financially compensated for registering as a stem cell and bone marrow donor. I find that a substantial fraction of individuals permit a low payment but prevent high monetary incentives. With the help of experimental treatment variation, I show that their preference to prevent high incentive offers is caused by the desire to protect individuals with high reservation prices. Evidence from a survey experiment with ethic committees emphasizes the practical importance of this finding. These results imply that shortages in the supply of controversial goods are unlikely to be solvable by providing higher incentives. 

********

Here's a short video presentation of (an early version of) the paper by Dr Stüber.  I understand that he will be moving from the WZP to NYU Abu Dhabi in September.

Cascades of convalescent plasma for Covid-19, and chains of exchanges, by Kominers, Pathak, Sönmez, and Ünver

Covid-19 convalescent plasma is a new thing in the world, that came into existence only when the first human was infected and recovered from the Covid-19 disease that is now pandemic. It isn't clear yet whether it will be clinically valuable, but recovered antibodies have been valuable for some other diseases, so there's excellent reason to hope that will be the case now too.  And as the number of people grows who have recovered from Covid-19, it is likely that the supply of antibodies is growing much faster, since antibody-containing plasma can be donated once a month or so. (There are  ongoing studies of antibody production by recovered patients, examining how long the antibodies remain at high levels, post-recovery). Of course, most of that supply is sequestered in the blood of recovered patients, so there's a non-trivial issue of collection and distribution.

As readers of this blog know, many countries prohibit the sale of plasma. Will Americans continue to support a commercial market for Covid-19 convalescent plasma in the current pandemic?  A distinguished group of market designers has written a paper considering how to apply techniques developed for kidney exchange to the task of collecting convalescent plasma from recovered Covid-19 patients, if it becomes impossible to buy and sell it. In particular, they consider how to create chains of donations, without using money, to overcome the shortages they anticipate.

Here's an easy to read account by Scott Kominers, one of the authors.

How to End the Plasma Shortage for Coranavirus Patients

Scott Duke Kominers, Bloomberg News  May 11, 2020

"convalescent plasma is in short supply: although it’s hard to estimate precisely, some statistics suggest the U.S. may need twice as much as we have on hand.

"In a new paper, Parag A. Pathak, Tayfun Sonmez, M. Utku Unver and I propose a market design strategy that could help close the gap. Our approach makes use of two special features of the way plasma donation works.

"First, convalescent plasma is collected from recently recovered patients, which means that today’s patients become tomorrow’s prospective donors, assuming they manage to beat the virus. ... That suggests the shortage isn’t from lack of potential supply.

"Second, plasma donation is more than one-for-one: the typical donor can give enough plasma at one time for multiple treatments, and they can potentially donate more than once. As a result, assuming plasma therapy does help patients recover, there is a so-called flywheel effect: the more we use the treatment, the more plasma is available -- provided enough recovered patients are willing to donate.

"Many people would like to donate plasma to help a loved one, but can’t for various reasons:  Their blood types might be incompatible or they might live far away and be unable to travel. To address these sorts of obstacles, my collaborators and I suggest that each plasma donor could receive a voucher that can be used to give a family member or friend priority for plasma treatment. Because donation is more than one-for-one, it’s possible to honor vouchers while still increasing the pool of plasma available to treat other patients.

...

"A similar analysis suggests a role for a pay-it-forward system, where we make a point of treating patients who pledge to donate plasma, assuming they recover and are medically able to do so. Because recovered patients can typically donate more plasma than was needed for their own treatment, this again can help increase the plasma supply in the long run. As a result, my collaborators and I show that, somewhat paradoxically, prioritizing patients who pledge to donate can still end up expanding treatment for the patients who are unable to pledge, or just choose not to.

"Both of these policies are similar to systems we’ve used to expand kidney donation in the U.S.: Priority vouchers are sometimes granted when a living donor gives a kidney to a third-party before one of their family members needs a transplant. And pay-it-forward incentives are used in kidney exchange chains, where a patient with a medically incompatible prospective donor receives a kidney from a third-party donor, and then their donor later gives a kidney to some other patient."
******
Here is the paper itself:

Paying It Backward and Forward: Expanding Access to Convalescent Plasma Therapy Through Market Design
Scott Duke Kominers, Parag A. Pathak, Tayfun Sönmez, M. Utku Ünver
NBER Working Paper No. 27143
Issued in May 2020

Abstract: COVID-19 convalescent plasma (CCP) therapy is currently a leading treatment for COVID19. At present, there is a shortage of CCP relative to demand. We develop and analyze a model of centralized CCP allocation that incorporates both donation and distribution. In order to increase CCP supply, we introduce a mechanism that utilizes two incentive schemes, respectively based on principles of “paying it backward” and “paying it forward.” Under the first scheme, CCP donors obtain treatment vouchers that can be transferred to patients of their choosing. Under the latter scheme, patients obtain priority for CCP therapy in exchange for a future pledge to donate CCP if possible. We show that in steady-state, both principles generally increase overall treatment rates for all patients—not just those who are voucher-prioritized or pledged to donate. Our results also hold under certain conditions if a fraction of CCP is reserved for patients who participate in clinical trials. Finally, we examine the implications of pooling blood types on the efficiency and equity of CCP distribution.

Here's some of the motivation for their model:

"There is an active debate in economics and philosophy on the appropriate role of market-based

mechanisms with compensation for human products used in medicine or medical research like kidneys, blood, blood products, sperm, breast milk, bone marrow, and other.11 Since, as far as we know, there is no current market where infected patients can buy CCP or where recovered patients can sell CCP, we do not consider this possibility as part of our model.

...

"Because CCP is a form of plasma, a natural question is whether a compensated market for CCP will develop. In our model, there is no option to pay to receive CCP or be paid for donating CCP, but a donor can designate the voucher in our model to particular patient in need. As a result, our model of CCP falls between the two extremes described above. We expect that in a crisis moment, there is unlikely to be an active compensated market for CCP (even though it may be impossible to fully prohibit resale of vouchers). If a price-based market does develop, society may deem it unacceptable."

***************

I am more optimistic than they are about the likely available supply of convalescent plasma if it proves useful, through existing commercial channels. My optimism is based on the large thriving commercial market for plasma and plasma-derived antibodies in the U.S., and around the world.  I'll try to blog about the general plasma and antibody (immunoglobulin) market tomorrow, and perhaps more on Covid-19 antibodies later this week.

The Iranian kidney market in Mashhad, by Mehdi Feizi and Tannaz Moeindarbari in Clinical Transplantation

Here's a new article in Clinical Transplantation:

Characteristics of kidney donors and recipients in Iranian kidney market: Evidence from Mashhad
Mehdi Feizi  Tannaz Moeindarbari
First published: 06 August 2019 https://doi.org/10.1111/ctr.13650

Abstract: The Iranian model of kidney transplantation is an example of a regulated living unrelated renal donation. In this paper, we collected and analyzed a unique dataset of 436 paired kidney donors and recipients, including their characteristics and the realized price of a kidney in Mashhad. As opposed to the global picture of kidney donation, we find that women are less likely to donate and more likely to receive a kidney. Moreover, the average price of a kidney amounts less than 2 years of work with the minimum level of wage.
***********

The article elicited a commentary by Gabe Danovitch, an eminent nephrologist at UCLA who speaks and writes frequently in opposition to compensation for donors:

COMMENTARY
Financial neutrality should replace the Iranian paid donor market
Gabriel Danovitch
First published: 16 July 2019 https://doi.org/10.1111/ctr.13665

He explains his opposition to markets in general this way: "the term “regulated market” is oxymoronic with respect to markets in general and specifically when it comes to human organs..."

(One wonders how the market for nephrologists works, and for medical specialists and subspecialists generally.  Someone should study that...)
**********

The article on Mashhad includes some very interesting description of the market there:

"Since the first live kidney transplant in Mashhad on 2 April 1985 until December 2017, more than 2500 people have had a kidney transplant in the Montaserie Organ Transplantation Hospital. It is operating as a center for dialysis and the only center in Mashhad and neighboring regions for transplantation of kidney, liver, and bone marrow. According to the latest reports, more than 7000 people from different age groups are now waiting for a kidney in Mashhad.

"In Mashhad, approximately 60 individuals refer to the IKF every week to sell their kidney. Of these donors, about 15 individuals are actively pursuing the process, while the rest are dissuaded due to various reasons. Out of these individuals, about one‐fifth are medically approved for kidney donation, after the 3 or 4 weeks of examinations.

"From the demand perspective, every end stage renal disease (ESRD) patient aged below 70 in Khorasan Razavi Province without having a willing related donor is referred through a nephrologist's letter to the IKF in Mashhad to enter the kidney waiting list according to their blood type. These patients can be entered in the waiting list of hospitals to receive a kidney from a deceased donor as well.

"From the supply perspective, each potential kidney donor, between 22 and 40 years old, should register at the IKF after undergoing the preliminary medical tests and bringing the notarized consent of him/herself and his/her family, including both parents for singles, only the spouse for married men, and the spouse and both parents for married women.
...
There are four different matching lines for each blood type, and the IKF usually pair each donor with a renal patient with the matching blood type in the waiting list based on a first come, first‐served basis. Nevertheless, this is not the only way of matching, and both sides can also publically advertise and find each other outside the IKF matching system. However, they have to register there and do the required paperwork and medical tests, as the transplantation centers only accept donors referred by the IKF, as a market maker.

"A renal patient should pledge in cash half the official price of a kidney to the IKF following the initial registration of the waiting list. Once a patient is matched to a donor and they both agree upon a price, the patient pays the remaining price of a kidney to the IKF via a cheque. After carrying out the transplantation, the IKF transfers all the amount of money received from the patient to the donor. However, the IKF neither receives any financial interest nor benefits from any monetary transactions, as it is a charity after all. Although there is no official ceil price, the IKF in Mashhad informally tries its best to convince and incentivize the donor not to ask a high price.
...
"Almost all kidney donors mostly face severe and urgent financial needs, for example, paying off debts (especially home rentals and blood money) and even living expenses, especially for single‐mother households. Thus, financial issues constitute the most frequent and primary motive for living unrelated donors in Iran.
...
"According to this law, compensated kidney donation in Iran is only possible between two individuals from the same nationality with the legal residence permits, especially refugees in Iran from Afghanistan.

"Since there is a large number of Afghan refugees in Mashhad, the IKF has formed a limited market for them. At the main kidney market for Iranians, donors do not have to wait to find a match, as there are always patients looking for a compatible kidney, especially those with a rare blood type such as AB. However, at the kidney market for Afghans, there is no patient in a queue to get a kidney and donors have to stay on the waiting list to find a suitable recipient.

"Moreover, for Afghan citizens, the amount of money a patient should pay to compensate a donor is determined not based on the official price of a kidney in Iran, but rather in a wholly agreed manner. In 2014, the total cost of kidney transplantation was about 6329 USD. While the government pays all kidney transplantation costs for Iranian patients and donors, Afghan renal patients should pay the hospital fees and other costs related to transplantation, which is estimated about 350 million IRR, almost 8650 USD, and reaches about 800 million IRR, almost 19 775 USD, with the cost of kidney purchase.
...
[Among Iranians] "Not only donors tend to be financially motivated for donation, but also recipients are not wealthy, as 47% of them are unemployed."

Compensation for bone marrow/blood stem cells: where are we now?

Here's a paper in the Johns Hopkins series of mostly student papers, Studies in Applied Economics, that brings us up to date on the state of bone marrow compensation in the U.S.

An Examination of the Issue of Bone Marrow Compensation
By Valerie Vilariño

"Although  compensation  for  bone  marrow  is  no  longer  regulated  by  the federal  government, there are many obstacles it must overcome before it becomes commonplace. Citizens who live in states that ban it may not be able to participate in either end of compensation. This is due to grey areas between the laws of the state governments and the Commerce Clause of the U.S. Constitution. For example, a patient living in a state that bans compensation may not be able to receive bone marrow from a donor who was compensated, even if the donor lives in a state where compensation is allowed, because it breaches the law of the state in which the patient lives. However, this exchange constitutes interstate commerce since the donor and the patient are not in the same state. These types of legal uncertainties often result in cases being heard before the Supreme Court to determine precedents for similar scenarios in the future.36

"Then  there  are  the  practical  difficulties.  At  the  moment,  no  compensatory  bone  marrow registries exist. According to Doug Grant of Hemeos, the main reason for that is that the NMDP opposes  the  compensation  of  bone  marrow.  Both  MoreMarrowDonors.Org  and  Hemeos, despite  having  had  different  business  plans  in  the  way  they  were  planning  on  going  about compensating donors, were forced to close because of procedures indirectly imposed on them by  Be  the  Match.  Grant  told  me  in  an  interview  that  he  closed  Hemeos  in February  2017 because as a startup, the fight against regulation was too much for Hemeos to overcome. By the time that compensation became unquestionably legal, the startup had run out of capital. For compensation to become a reality, there must be registries that are willing to compensate. Because the NMDP so strongly opposes compensation, the experts I talked to agreed that the only option for a compensatory bone marrow registry to exist is for it to be a competitive, parallel registry to that of BE the Match.

"This  presents  other  logistical  difficulties  because  currently  Be  the  Match  is  the  registry  that most,if not all,physicians use when looking for a match for their patient. For a new registry to compete with Be the Match, not only would it, like Hemeos, have to develop its own software to provide transplant centers with, but it would also need to make connections with individual hospitals so that they begin to search the registry. Growing a registry to fully compete with Be the Match’s could take years  given  that  there  is nocentralized  process  by  which  hospitals partner  with  bone  marrow  registries.  Each  hospital  would  have  to  make  an  individual partnership with the compensatory registry. Furthermore, there is currently little incentive for entrepreneurs  to  tackle  this  seemingly  daunting  startup  possibility  since  the  entire  bone marrow market accounts for only $3 million to $4 million a year.
...
"Lastly,  as  previously  mentioned,  47  percent  of  the  matches  made  by  Be  the  Match include either  a  foreign  donor  or  recipient.  Compensation  poses  a  problem  in  those  cases  because many  of  the  cooperative  registries  that  partner  with  Be  the  Match  are  national  registries  of countries where compensation is not legal. By making compensation legal in the United States, some  of  these  partnerships  could  be  strained, potentially leading  to  a  significant  loss  of international matches. All of these are barriers that would need to be somehow overcome in order for compensation not only to be realistic but also for it to accomplish its goal of helping to relieve the scarcity of bone marrow matches."
********

HT: Frank McCormick

Alabama adopts a paid leave program for organ donations

Here's the story:
Alabama adopts a paid leave program for organ donations

"Under a new state provision, a permanent employee with at least one year of state service may be granted living donor leave, with pay, for donating an organ or bone marrow.
...
"Based on physician orders, the employer may receive up to 30 days to donate an organ and up to seven days to donate bone marrow. The employee does not have to exhaust his or her leave accruals for the procedures."

Bone marrow and blood stem cell update

Here's an article that recounts the recent events regarding payment to donors of blood stem cells.

Hope for to-marrow: the status of paid peripheral blood stem cell donation under the National Organ Transplant Act 
Kelly Todd
Journal of Law and the Biosciences, Volume 4, Issue 2, 1 August 2017, Pages 412–423

Abstract

The National Organ Transplant Act (NOTA), enacted in 1984, bans the exchange of bone marrow and a number of other human organs for valuable consideration. At the time NOTA was enacted, bone marrow could only be harvested by aspirating bone marrow tissue from a donor's bone cavities. However, recent medical and technological advances now allow doctors to use a much less invasive apheresis method, which collects the transplantable stem cells from a donor's peripheral blood stream. In 2009, the Court of Appeals for the Ninth Circuit held that such donations do not fall into the category of “bone marrow” under NOTA, and can therefore be compensated. Not long after the court's final ruling, the Department of Health and Human Services (HHS) proposed a rule to explicitly bring hematopoietic stem cells back under the purview of NOTA. The transplant community, seeing compensated donation as a solution to the shortage of altruistic bone marrow donors, fiercely opposed the rule. After years of limbo, HHS officially withdrew the proposed rule in August, 2017, which will allow groups to financially incentivize potential peripheral blood stem cell (PBSC) donors. This commentary addresses the moral and ethical issues implicated by paid PBSC donation, the role that regulation could play, and the potential impacts of paid PBSC donation on the transplant community, Ultimately, this article concludes that providing financial incentives to PBSC donors will likely have an overall positive impact on the transplant community by encouraging more donors to join the registry, and motivating donors to follow through with their donations once matched.

Trump Administration Withdraws Proposed Ban on Compensation for Bone Marrow

After the Ninth Circuit ruled that compensation for blood stem cells (sometimes simply referred to as bone marrow) could be compensated in some cases, the department of Health and Human Services moved to reinstate the ban.  (I coauthored one of many of the public comments they received "in opposition to the proposed rule changes by the Health Resources and Services Administration (HRSA) that would ban compensation for bone marrow donations.")

On August 1 the new administration (which hasn't done much else that I approve of)  withdrew the proposed rule change (which I gather should leave the Ninth Circuit decision as the law of the land).

Here's a news story and an editorial (the only reports I've seen so far).

First the story (which seems to incorrectly attribute the administrative agency behind the move to the Office of Management and the Budget instead of to the Department of Health and Human Services (HHS):

Trump Administration Withdraws Proposed Obama Ban on Compensation for Bone Marrow

"The Office of Management and Budget has withdrawn a proposed rule banning compensation for hematopoietic stem cells. In other words, you can get paid when someone harvests stem cells from your bone marrow.

Bone marrow transplantation is used to treat a variety of ailments, including aplastic anemia, sickle cell anemia, bone marrow damage during chemotherapy, and blood cancers such as leukemia, lymphoma, and multiple myeloma. In 1984, Congress passed the National Organ and Transplant Act, which outlawed compensation to the donors of solid organs like kidneys and livers. Oddly, the act also defined renewable bone marrow as a solid organ.

Originally, hematopoietic stem cells were obtained from bone marrow obtained by inserting a needle into donors' hip bones. Researchers later developed a technique in which donors are treated with substance that overstimulates the production of hematopoietic stem cells, which then circulate in their bloodstreams. In a process similar to blood donation, the hematopoietic stem cells are then filtered from the donors' blood. The red blood cells and plasma are returned to the donors.

More Marrow Donors, a California-based nonprofit, wanted to set up a system to encourage hematopoietic stem cell donations with $3,000 awards, in the form of scholarships, housing allowances, or gifts to charity. The Institute for Justice, a libertarian law firm, brought suit on their behalf, and in 2012 a federal appeals court sensibly ruled that the law's ban on compensation for solid organ donations did not apply to stem cells obtained from donors' bloodstreams. The Obama administration reacted by proposing a regulation defining stem cells obtained from blood as the equivalent of a solid organ.

Now the new administration has withdrawn the proposal."

************
Here's the editorial, from yesterday's WSJ:
Money for Marrow, Finally

"last week the Department of Health and Human Services withdrew a proposed Obama -era regulation that would have prohibited compensation for bone-marrow donation. About 11,000 ailing Americans are currently searching the national marrow registry, hoping to find a compatible donor. This year at least 3,000 people will die waiting for a transplant."

***************
Here are my previous posts on bone marrow donation and the compensation controversy.


HT: Philip Held and Frank McCormick

Insurance for organ donors in Ireland: is it compensation?

Frank McCormick points out this interesting story from Ireland:

If you're donating an organ, you can now get insurance cover
The new Royal London Ireland offering has come in for criticism...

"Royal London Ireland has announced that it will now offer a "financial cushion" for policyholders who donate a kidney, bone marrow or portion of a lung or liver to another family member.

The first-of-its-kind "organ donor cover" has been introduced as part of the insurance provider's Specified Serious Illness (SSI) cover.

Under the newly-revamped policy offering, Royal London will pay a €2,500 one-off lump sum to living donors.

In the wake of the news, concerns have been raised that it amounts to "cash for organs" and is unsavoury and unethical.

Mark Murphy, chief executive of the Irish Kidney Association, has said:

"We don't need insurance companies offering these things, we have a compensation scheme... It's not necessary, it's not needed. They shouldn't be doing it, on the basis that it's not needed."

 Colette Houton, Royal London's underwriting and claims lead, commented:

"The supply of organ donations is an ongoing issue in this country, with an ever-increasing demand from those who are unfortunate enough to need organ transplantation.

"This shortage has led to more people receiving organs from living donors...

"It would be nice to think our pay-out could potentially help to offset the cost incurred as part of the admirable, altruistic acts that living donors are carrying out...

"Potential donors can face loss of earnings coupled with high medical bills and expenses and our goal is to alleviate these worries and concerns somewhat, by providing some financial aid to support them through surgery and recovery time.

"Living organ donation is an admirable, altruistic act and a lump sum can, at least, help to offset any costs the donor incurs following the operation and recovery involved."
*********

Here's a related press release from the Irish Brokers Association:
Royal London Launch Best-in-Class Serious Illness Cover

Organ transplantation in Iran

Robert Gutman draws my attention to this article from the English language Iranian Financial Tribune:  Sunday, April 23, 2017 Strides in Organ Transplant

I'm not sure where the claim in the first sentence of 50,000 organ transplant "surgeries" comes from, but the rest of the article (which seems to talk about a total closer to 5,000 transplants) is an interesting view of the situation in Iran.


"Over 50,000 organ transplant surgeries were conducted during the last fiscal year that ended on March 20.

Around 2,500 kidney, 802 liver, 119 heart, 30 pancreas and several intestine and lung as well as 1,040 bone marrow transplants were performed in Iran during the period, said Seyyed Mohammad Kazemeini, head of the Organ Transplant Management Office at the Health Ministry.

“This impressive number of transplant surgeries has helped save many lives as well as more than $1.8 billion in foreign exchange, as patients would otherwise have paid huge amounts for the medical help abroad. Some were even treated free,” the official was quoted as saying by ISNA.

However, he regretted that insurance companies still refuse to cover expenses of organ transplants despite a government directive last year.

“Insurance companies are not complying and the Health Ministry has to draw on its own resources to provide free services for some patients,” he said and hoped the ministry’s support would continue.

“During this year’s New Year holidays (March 21- April 2), 93 transplants were performed,” which shows the preparedness of the medical fraternity.

Iranian organ transplant teams are capable of providing assistance and training to neighboring countries, he said.

Last year a team of experts from Mashhad, capital of the northeastern Khorasan Razavi Province, carried out 47 renal transplants in Afghanistan, and medical teams from Shiraz, capital of the southwest Fars Province, conducted 20 operations in Pakistan and Tajikistan.

Shiraz University of Medical Sciences is known for its accomplishments in liver transplants and the hospitals under its coverage are among the top medical centers in the world with regard to the number of surgeries performed. On average, 500 liver transplants and 300 kidney surgeries are annually undertaken in Shiraz, which also has the distinction of performing the first kidney transplant in Iran in 1968 at the prestigious Namazi Hospital.

A specialized hospital is now planned to be established in Shiraz for organ transplants.

Iran ranks third worldwide in organ donation and is the only country in the world that has addressed the shortage of transplant organs through a legal payment system since 1988 when living non-related donation (LNRD) was legalized,  making it the only country where organ sale is legal.

There are currently 46 organ transplant centers in the country and 25 facilities for organ donation.

  Increase in Brain-Dead Organ Donation

According to Kazemeini, people’s tendency to donate organs of brain-dead patients in their families has increased significantly.

“Last year, 57% of transplant kidneys were donated by brain-dead patients,” he said.

In the past organ donation or sale by living people was predominant. The acceptance of organs of brain-dead patients has improved remarkably due to legal and religious decrees and widespread awareness campaigns on the issue.

Organ transplant is a medical procedure in which an organ is removed from one body and placed in the body of a recipient, to replace a damaged or missing organ.

Today, over 1.4 million people have voluntary organ donation cards in the country. On average, 700 organ donations (nine per million people) are made annually according to official statistics.

Organs that have been successfully transplanted include heart, kidney, liver, lung, pancreas, intestine, and thymus. Worldwide, kidneys are the most commonly transplanted organs, followed by liver and heart. Organ donors may be living, brain dead, or dead via circulatory death.

In the fiscal year that ended in March 2016, from among the 8,000 people confirmed as brain dead at Iranian hospitals, 1,400 kidneys (and 2,300 organs) were donated.

Kidney transplants account for nearly 75% of all organ replacement surgeries while liver and heart transplants comprise 22% and 3% of the total number. More than half of all transplanted kidneys (56%) were from brain-dead donors and 44% were from living people.

Kazemeini had earlier pointed to Iran’s top position in the field of kidney transplant in the Middle East. On average, 3,000 kidney transplants are conducted every year and Iranian surgeons have transplanted over 35,000 kidneys so far."

Ethicists on compensation for blood stem cells (aka bone marrow aka hematopoietic cells) donors

The site http://donationethics.com/ hosts a letter signed by many ethicists opposing an amendment to the National Organ Transplant Act to reverse the court decision outlawing payment to blood stem cell donors. (Got that? the letter is pro compensation.)

The site is full of interesting related links.

Here's the site's front page:

This site houses an open letter to Shelley Grant of the Department of Health and Human Services regarding a proposed amendment to the National Organ Transplant Act that would effectively outlaw offering compensation for hematopoietic cells donation. The signatories are professional ethicists who believe that the proposed amendment is unethical and should be rejected.

The details of the proposed amendment can be found here.

The case that prompted the amendment, Flynn v. Holder, is explained here.

---

Peter M. Jaworski conceived of the letter and is its primary author.

David Faraci was a major contributor to the letter and maintains the website.
**************

Here's a link to Hemeos, a startup service for matching stem cell donors to patients, which plans to compensate donors.

Matchmaker Exchange: Matching genes and symptoms for patients with very rare diseases ("lonesome exomes")

There's a lot of genetic matchmaking going on in the world. In kidney transplantation we worry about HLA matching, which is even more important in bone marrow matching. Both of those matching processes mostly involve common gene sequences--if you have very rare HLA's, you will have less luck at finding a bone marrow match.

But as more patients with very rare disease have their exome sequenced, there are patients with particular phenotypes and symptoms and "lonesome exomes," which have a suspect gene that may be responsible for their disease, which will remain only a suspect until more patients with that disease and that gene variant can be identified. These data are mostly in separate databases at different clinical research institutions.

That's where Matchmaker exchange comes in--it's a protocol for looking for patients with the same gene variants and the same diseases, so that matches can be made and the genes responsible for rare diseases can be identified.

Here's the paper:
Philippakis AA, Azzariti DR, Beltran S, Brookes AJ, Brownstein CA, Brudno M, Brunner HG, Buske OJ, Carey K, Doll C, Dumitriu S, Dyke SOM, den Dunnen JT, Firth HV, Gibbs RA, Girdea M, Gonzalez M, Haendel MA, Hamosh A, Holm IA, Huang L, Hurles ME, Hutton B, Krier JB, Misyura A, Mungall CJ, Paschall J, Paten B, Robinson PN, Schiettecatte F, Sobreira NL, Swaminathan GJ, Taschner PE, Terry SF, Washington NL, Züchner S, Boycott KM, Rehm HL. 2015. The Matchmaker Exchange: A Platform for Rare Disease Gene Discovery. Human Mutation, 36: 915–921. doi:10.1002/humu.22858 

ABSTRACT: There are few better examples of the need for data sharing than in the rare disease community, where patients, physicians, and researchers must search for “the needle in a haystack” to uncover rare, novel causes of disease within the genome. Impeding the pace of discovery has been the existence of many small siloed datasets within individual research or clinical laboratory databases and/or disease-specific organizations, hoping for serendipitous occasions when two distant investigators happen to learn they have a rare phenotype in common and can “match” these cases to build evidence for causality. However, serendipity has never proven to be a reliable or scalable approach in science. As such, the Matchmaker Exchange (MME) was launched to provide a robust and systematic approach to rare disease gene discovery through the creation of a federated network connecting databases of genotypes and rare phenotypes using a common application programming interface (API). The core building blocks of the MME have been defined and assembled. Three MME services have now been connected through the API and are available for community use. Additional databases that support internal matching are anticipated to join the MME network as it continues to grow.

Here's a video presentation by Dr Kym Boycott, one of the authors.

Should Compensation for Bone Marrow Donors be Legal? a panel discussion in Washington

If you're at loose ends in DC today: 

Should Compensation for Bone Marrow Donors be Legal?

It’s a felony to compensate organ donors, but what counts as an organ is not always so clear. The stem cells contained in bone marrow are also present in the bloodstream, and are routinely extracted to be used in transplants to treat cancers and many blood and immune disorders. Should these cells be treated as an organ like bone marrow, or should the law permit compensation for blood stem cells just as it does for other non-invasive procedures like plasma or whole blood donation?

This a question the Health Resources and Services Administration is currently considering. With a substantial gap in the supply and demand for bone marrow transplants, particularly among racial minorities, how they choose to regulate will affect the lives of thousands of patients each year.

Join the Niskanen Center and the Georgetown Institute for the Study of Markets and Ethics for an expert panel on the legal, ethical and economic issues surrounding compensation for bone marrow, including:

Robert McNamara
Senior Attorney, Institute for Justice

Mario Macis
Associate Professor of Economics, Johns Hopkins Carey Business School

Peter Jaworski
Assistant Teaching Professor, Georgetown University

Doug Grant
CEO, Hemeos

Samuel Hammond
Poverty and Welfare Policy Analyst, Niskanen Center

---

Where:428a Russell Senate Office Building
Senate Committee on Small Business and Entrepreneurship Hearing Room

When:
November 15 from 3:00-4:30pm

Two papers on repugnance and payments for body parts

Here's an NBER paper by Nicola Lacetera, which includes this in the acknowledgments: "I dedicate this paper to the memory of my friend Julia Fletcher, whose life could have been longer if a bone marrow match were found for her."

Incentives and Ethics in the Economics of Body Parts

Nicola Lacetera

NBER Working Paper No. 22673
Issued in September 2016
NBER Program(s):   HE      PE 

Research shows that properly devised economic incentives increase the supply of blood without hampering its safety; similar effects may be expected also for other body parts such as bone marrow and organs. These positive effects alone, however, do not necessarily justify the introduction of payments for supplying body parts; these activities concern contested commodities or repugnant transactions, i.e. societies may want to prevent certain ways to regulate a transaction even if they increased supply, because of ethical concerns. When transactions concern contested commodities, therefore, societies often face trade-offs between the efficiency-enhancing effects of trades mediated by a monetary price, and the moral opposition to the provision of these payments. In this essay, I first describe and discuss the current debate on the role of moral repugnance in controversial markets, with a focus on markets for organs, tissues, blood and plasma. I then report on recent studies focused on understanding the trade-offs that individuals face when forming their opinions about how a society should organize certain transactions.

******

And here's another, by Julio J. Elias, Nicola Lacetera, and Mario Macis

Efficiency-Morality Trade-Offs in Repugnant Transactions: A Choice Experiment

Julio J. Elias, Nicola Lacetera, Mario Macis

NBER Working Paper No. 22632
Issued in September 2016
NBER Program(s):   HE   LE   PE 

Societies prohibit many transactions considered morally repugnant, although potentially efficiency-enhancing. We conducted an online choice experiment to characterize preferences for the morality and efficiency of payments to kidney donors. Preferences were heterogeneous, ranging from deontological to strongly consequentialist; the median respondent would support payments by a public agency if they increased the annual kidney supply by six percentage points, and private transactions for a thirty percentage-point increase. Fairness concerns drive this difference. Our findings suggest that cost-benefit considerations affect the acceptance of morally controversial transactions, and imply that trial studies of the effects of payments would inform the public debate.

It looks like paying donors of bone marrow/ blood stem cells will remain illegal...

The long story of whether some forms of blood stem cell (marrow) donation may be compensated seems to be coming to an end, back where it began.  Here's the new HHS/HRSA regulation, saying that whether as marrow or in the blood stream, these are considered organs under the National Organ Transplant Act, so no valuable consideration can be given...

View EO 12866 Meetings

Printer-Friendly Version     Download RIN Data in XML

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HHS/HRSA

RIN: 0906-AB02

Publication ID: Spring 2016

Title: Definition of Human Organ Under Section 301 of the National Organ Transplant Act of 1984
Abstract:This final rule clarifies that peripheral blood stem cells are included in the definition of bone marrow under section 301 of the National Organ Transplantation Act of 1984, as amended and codified in 42 U.S.C. 274e.
Agency: Department of Health and Human Services(HHS)	Priority: Info./Admin./Other
RIN Status: Previously published in the Unified Agenda	Agenda Stage of Rulemaking: Final Rule Stage
Major: No	Unfunded Mandates: No
CFR Citation: Not Yet Determined     (To search for a specific CFR, visit the Code of Federal Regulations.)
Legal Authority: Pub. L. 109-129    Stem Cell Therapeutic and Research Act of 2005, as amended in 2010 by Pub. L. 111-264

Legal Deadline:  None

Timetable: Action Date FR Cite NPRM  10/02/2013  78 FR 60810    NPRM Comment Period End  12/02/2013  Final Rule  11/00/2016

Regulatory Flexibility Analysis Required: No	Government Levels Affected: Undetermined
Small Entities Affected: No	Federalism: No
Included in the Regulatory Plan: No
RIN Data Printed in the FR: No
Agency Contact: Dr. James Bowman Medical Director, Division of Transplantation Department of Health and Human Services Health Resources and Services Administration 5600 Fishers Lane, Room 12C-06, Rockville, MD 20857 Phone:301 443-4861

HT: Kim Krawiec