America Has an Organ Shortage. Could Paying Donors Close the Gap? Podcast from BYU radio.

 Here's a podcast on the shortage of organs for transplant, and on the controversies about compensating organ donors, and plasma donors.

America Has an Organ Shortage. Could Paying Donors Close the Gap?   Top of Mind with Julie Rose | BYU radio
 

"There are more than 100,000 people on the waitlist for an organ transplant. Every day 17 of them die. Most organs for transplant come from deceased donors. But the organs in highest demand for transplantation are kidneys and livers – both of which can be donated while a person is still alive. So, we could save thousands of lives each year if more people were willing make a living organ donation. Some advocates say giving donors money would increase organ donations enough to eliminate the entire waitlist. But federal law makes it illegal to buy or sell organs. Ethicists have real concerns about coercion and exploitation, too. In this podcast episode, we're exploring America's organ shortage and asking whether paying donors could close the gap.  
Guests:
David Galbenski, liver transplant recipient and co-founder of the Living Liver Foundation (https://livingliver.org/)

Elaine Perlman, kidney donor, Executive Director of Waitlist Zero and leading advocate for the End Kidney Deaths Act (http://waitlistzero.org/)

Kathleen McLaughlin, journalist and author of Blood Money; The Story of Life, Death, and Profit Inside America's Blood Industry

Al Roth, Nobel-prize winning economist, Stanford University, expert in market design and game theory (https://marketdesigner.blogspot.com/)"

I'm interviewed at the end of the podcast, starting at minute 39:

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Income inequality, risk, and repugnance by Hauge, Kverndokk, and Lange

Two recent papers by  Karen Hauge, Snorre Kverndokk, and Andreas Lange report on the roles played by inequality and risk in causing repugnance to markets.

First, an experiment, motivated by a hypothetical market in kidneys (expressed in abstract terms), that finds that income inequality boosts repugnance to trade.

Hauge, Karen E., Snorre Kverndokk, and Andreas Lange. "Opposition to markets: Experimental evidence." Journal of Economic Behavior & Organization 227 (2024): 106743.

Abstract: We experimentally investigate reasons for opposing market institutions. The experiment shows that opposition to implementing market institutions varies by background characteristics and shows that distributional concerns are a reason for opposing trade institutions. We find no evidence that the opposition to trade is due to risk preferences or paternalistic motives. A main driver of the opposition to trade is the information about background conditions: veils of uncertainty increase the support for the trade institution.

"This paper reports experimental evidence to better understand potential opposition to market institutions, i.e. for allowing people to trade. For this, we abstract from repugnancy concerns that relate to the specific characteristics of the good or service in question, and rather reduces the setting to the payoff dimension and thus the involved risks and distributional concerns. While we use a neutral framing, organ trade, in particular, trade in kidneys, inspires the set-up of the experiment. Trading kidneys for payment is illegal worldwide, apart from in Iran.1 While it is obvious that persons with kidney issues would substantially benefit from a transplant, healthy donors expose themselves to risk (e.g., Lentine and Patel 2012). Currently, there is not a large income gap between donors and recipients in the US (Gill et al., 2012). Nevertheless, studies suggest that - at a given price - the poor would have larger incentives to donate and therefore, are more exposed to potential risks (Moniruzzaman, 2012; Parada-Contzen and Vásquez-Lavín, 2019) and thus potentially more vulnerable in terms of Satz (2010).2 To illustrate this in the experiment, we vary both the initial income of players (rich/poor) as well as their condition (healthy/sick) which combined affect their potential prospects with and without trade. 

...

"In our experiment, a share of 20 % of respondents across all treatments oppose the trade institution although it is constructed such that personal expected payoff is unaffected or improved. We find that the major reasons individuals vote against trade are the unfair distributions of gains from trade. Importantly, the opposition towards trade is partly self-serving: opposition is lower among those that benefit the most from implementing a market institution. Specifically, we find a significantly smaller opposition to trade institutions when participants are behind the veil of ignorance and do not know their income level, their (abstractly defined) health condition, and thus, how trade affects their payoff. Similarly, we find that distributing gains from trade more evenly, thus benefiting the poor to a larger extent, reduces opposition to trade among the poor."

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And here's a related survey study:

Hauge, Karen Evelyn, Snorre Kverndokk, and Andreas Lange. "On the opposition to market institutions on moral grounds." Humanities and Social Sciences Communications 11, no. 1 (2024): 1-8.

Abstract

"From a liberal viewpoint, voluntary trade appears to be something that should meet universal approval. If no one is obliged to trade, establishing a market institution could only make all better off. Nonetheless, specific market institutions meet substantial skepticism and criticism. This paper extends the extant literature by surveying the moral opposition towards trade in multiple dimensions and linking this to policy support measures. We provide survey results on moral opposition to trade in organs, sex services, surrogate mothers, trade in carbon permits, goods produced in poor countries, and food from countries where people suffer from hunger. These cover the potential reasons for opposing trade institutions: moral concerns, paternalism regarding risk-taking, and distributional concerns. Beyond this, we measure support for policies on unemployment benefits, risk prevention, equality goals within society, and redistribution. The survey of Amazon Mechanical Turk workers from the U.S. reveals significant moral opposition to trade in diverse dimensions. About a third of the participants strongly oppose trade in body items, sex services, and food imports from countries where a large proportion of the population suffers from hunger and malnutrition. Fewer participants strongly oppose trading CO2 permits, importing from developing countries, or allowing surrogate mothership. Besides other correlates (e.g., gender, education, being conservative), individuals’ attitudes towards imposing risks on others are identified as an important correlate of the opposition to trade for all the contexts of trade: those who are averse to exposing others to risk for their own advantage are more likely to oppose trading institutions. This measure of social preferences also relates to support for policies on risk prevention, equality goals within society, and redistribution. We discuss potential mechanisms behind this explanatory power of the newly identified measure."

Arguments against paying for plasma and other Substances of Human Origin (SoHO)

 Substances of Human Origin (SoHO) have a growing, often lifesaving role in modern medicine, from breast milk for premature babies, to kidneys for transplant, to blood and blood plasma, which the World Health Organization categorizes as an essential medicine for a wide variety of ailments and injuries.  However concern for protecting the donors of SoHO from exploitation has led to a considerable debate about whether donation must always be uncompensated, and motivated purely by altruism.
 

Two important cases are donation of kidneys and of blood plasma. Payment to donors of kidneys for transplant is banned almost everywhere, but a few countries (among which the U.S. is prominent) allow payment to plasma donors. Kidneys are in short supply, so patients with kidney failure very often die prematurely without receiving a transplant, but among high and middle income countries almost no one is today dying from a shortage of plasma and plasma products.  That isn’t because countries that don’t pay plasma donors generate sufficient supply for their domestic needs, it is because they can import plasma pharmaceuticals from countries that do pay donors, chiefly the U.S. which exports tens of billions of dollars of plasma products annually.
 

Here's an article arguing that payment for plasma and other SoHOs is always and everywhere wrong and should be stopped. (The  authors seem to agree with the WHO that countries should raise enough plasma domestically from unpaid donors, although no country has yet managed to do this.)  Furthermore, they suggest that companies that collect and process plasma must be nonprofits.

Prevention of Trafficking in Organs, Tissues, and Cells by Martin, Dominique E. PhD1; Capron, Alexander M. LLB2; Fadhil, Riadh A. S. MD3; Forsythe, John L. R. MD4; Padilla, Benita MD5; Pérez-Blanco, Alicia PhD6; Van Assche, Kristof PhD7; Bengochea, Milka MD8; Cervantes, Lilia MD9; Forsberg, Anna PhD10; Gracious, Noble MD11,12; Herson, Marisa R. PhD1; Kazancioğlu, Rümeyza MD13; Müller, Thomas PhD14; Noël, Luc MD15; Trias, Esteve MD16; López-Fraga, Marta PhD17 Transplantation, October 22, 2024. | DOI: 10.1097/TP.0000000000005212
 

“It is essential that all national laws “concerning the donation and human application” of human organs, tissues, and cells, as well as all derived therapies, conform to the principle of financial neutrality, prohibiting financial gain in the human body or its parts.9,70 Healthcare professionals, service providers, and organ, cell, and tissue procurement organizations, as well as other industry stakeholders involved in processing, manufacture, storage, and distribution of SoHOs and SoHO-based therapies, are all entitled to “reasonable remuneration” for their work and coverage of the costs associated with various sector activities.66,71 However, what may be considered a reasonable and proportionate remuneration in this context is ill defined. There have been reports of service providers and professionals generating disproportionate profits from such activities, creating potential financial conflicts of interest in service provision and potentially violating ethical norms and legal standards prohibiting trade in SoHOs.30
 

“Development of innovative therapies using human cells and tissues has increased, with the potential therapeutic value of these resources spurring commercial interests that, in some cases, has led to practices in which donated SoHOs are treated as commodities.30,72–75 Furthermore, some SoHOs may undergo substantial processing, resulting in these therapies being regulated outside the regulatory framework governing the transplantation of organs, tissues, and cells as such, and rather being considered as medicines, where commercial profits are expected and guide the production and distribution activities.74,75
 

“Mechanisms should be developed to ensure that strategies used in donor recruitment, which may involve actual or perceived financial incentives, are routinely disclosed and open to scrutiny.70 Transparency of practice is also required to enable scrutiny of the fees charged to cover costs of procuring, processing, storing, manufacturing, and distributing cells, tissues, and SoHO-based therapies and to assess the potential influence of financial interests on decision-making about the use of SoHOs in particular SoHO-based therapies, or distribution of SoHO-based therapies.74 These measures would furthermore help to facilitate equitable access to treatments for all patients.21
…
Box 1, first recommendation
“Recommendations for action to prevent trafficking in SoHOs
•    1. All countries should establish laws that prohibit payment for donation of SoHOs, trafficking in SoHOs, and trafficking in human beings to obtain SoHOs.
o    a. Legislation should prohibit activities that make the human body or its parts a source of financial gain exceeding the recovery of the costs of obtaining, processing, storing, and distributing those parts or the products made from them and of ensuring the sustainability, safety, and quality of donation and transplantation systems.”

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They also suggest that there is widespread human trafficking in SoHO, although they acknowledge that there isn’t a lot of data to support this:

“since 2010, there have been few empirical studies of organ trafficking, with more recent studies often consisting of qualitative interviews or surveys with individuals who participated in organ trafficking or were victims of human trafficking for organ removal several years earlier.7,32,52 Legal case analyses have focused primarily on seminal cases that detail activities that occurred in the early 2000s.33,38 Much of what is known about current trafficking activities is gleaned from sporadic media reports, which make clear the global prevalence of organ trafficking.”

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Earlier:

Wednesday, August 28, 2024  WHO Says Countries Should Be Self-Sufficient In (Unremunerated) Organs And Blood, by Krawiec and Roth

Monday, April 22, 2024 Plasma donation in the EU: compensated and uncompensated

Saturday, November 4, 2023  The EU proposes strengthening bans on compensating donors of Substances of Human Origin (SoHOs)--op-ed in VoxEU by Ockenfels and Roth

A(nother) movie about kidney donation

 When it rains it pours: after yesterday's post about Abundant, here's  a trailer for another movie about kidney donation, from the point of view of one donor, who directed the film:

Confessions of a Good Samaritan, Penny Lane

"What do we owe our neighbor?

Director Penny Lane’s decision to become a “good Samaritan” by giving one of her kidneys to a stranger turns into a funny and moving personal quest to understand the nature of altruism. Confessions of a Good Samaritan is a provocative inquiry into the science, history, and ethics of organ transplantation, asking an ancient question in a whole new way: Who is your neighbor, and what do you owe them?

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And here is a podcast (and transcript) in which Russ Roberts interviews the director:

Give Away a Kidney? Are You Crazy? (with filmmaker Penny Lane)

"After filmmaker Penny Lane decided to donate a kidney to a stranger, it took three years and a complex, often infuriating, sometimes terrifying process to make it happen. Along the way, being a filmmaker, she eventually decided to chronicle her experience and explore the question: How can a choice that seems so obvious to the donor seem so strange to everyone else? Listen as she tells EconTalk's Russ Roberts what she learned, what's still a mystery, and what she hopes we'll all take away from her story."

Kidney and liver donation: the movie trailer for Abundant

 You can see the 1.5-minute trailer for the movie here, or here.

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Earlier: 

Tuesday, September 24, 2024

Abundant: a moving documentary about living organ donors

Getting more transplants,, two recent articles

 Frank McCormick, and Martha Gershon point me to two articles about increasing kidney transplants.

The first one is by Dylan Matthews in Vox Future Perfect. Here are its first paragraphs and last sentence (the middle is well worth reading too if you're new to this debate..)

The moral case for paying kidney donors.
Kidney donors save lives. Why aren’t we compensated for it?

"A few months ago, I wrote about a proposal called the End Kidney Deaths Act, which seeks to make sure that every one of the more than 135,000 Americans who get diagnosed with kidney failure every year has access to a kidney transplant.

"Its method is simple: a federal tax credit worth $10,000 a year for five years, paid to anyone who donates a kidney to a stranger. It’s the kind of thing that would’ve helped a lot when I donated a kidney back in 2016. Elaine Perlman, a fellow kidney donor who leads the Coalition to Modify NOTA, which is advocating for the act, estimates the measure will save 100,000 lives over the first decade it’s enacted, based on conversations with transplant centers on how many surgeries they can perform with their current resources. Polling has shown this kind of measure has overwhelming public support, with at least 64 percent of Americans supporting a system where a government agency compensates donors.

...

"Not enough nurses? Pay nurses more. Not enough waiters? Pay your waiters more. Not enough kidney donors? Here’s a crazy idea: Pay us."

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And here's an article in Healthcare Brew, by Caroline Catherman:

From pigs to payouts, weighing solutions for the US kidney shortage.  About one out of every 20 people waiting for a kidney transplant die each year, according to the United Network for Organ Sharing. Scientists, policymakers, and other experts are scrambling to find a solution.

It also talks about the End Kidney Deaths Act, and pig kidneys and more effective deceased donation as well.

End Kidney Deaths Act intoduced in Congress

 Here's the press release from the Congressional sponsors:

Malliotakis Introduces Bipartisan End Kidney Deaths Act, August 12, 2024

"(WASHINGTON, DC) - Today Congresswoman Nicole Malliotakis (NY-11) joined Reps. Don Bacon (NE-02), Josh Harder (CA-09) and Joe Neguse (CO-02) in introducing the End Kidney Deaths Act, bipartisan legislation that would provide a refundable tax credit to living kidney donors who donate kidneys to strangers, specifically those waiting the longest on the kidney waitlist.

"Specifically, the End Kidney Deaths Act will provide a $10,000 refundable tax credit per year for five years ($50,000 total) to living kidney donors who donate kidneys. If enacted, this legislation is expected to save up to 100,000 Americans currently on the waitlist and save taxpayers an estimated $10 to $37 billion."

...

VIEW THE BILL TEXT HERE

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And here's the Coalition to Modify NOTA 's press release(which includes quotes from some of their long list of supporters...)

LIFE-SAVING END KIDNEY DEATHS ACT INTRODUCED TO CONGRESS; PROJECTED TO SAVE 100K LIVES AND $37 BILLION OVER 10 YEARS

Washington DC – The End Kidney Deaths Act (H.R. 9275) has just been introduced by Congressional Representative Malliotakis (R-NY) and Representative Harder (D-CA). This bill will save up to 100,000 American lives and $37 billion tax dollars over the next decade by offering refundable tax credits to encourage living kidney donation in this ten-year pilot program. The End Kidney Deaths Act will provide all Americans who donate kidneys to strangers at the top of the kidney waitlist with a refundable tax credit of $10,000 each year for five years, totaling $50,000."

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Earlier:

Saturday, July 22, 2023

Modify NOTA: a new effort

The End Kidneys Death Act has growing support

I've earlier blogged about the Coalition to Modify NOTA (the National Organ Transplant Act of 1984).

Here is a summary of their proposed legislation

The End Kidney Deaths Act Summary

It begins this way:

"The End Kidney Deaths Act is a ten year pilot program to provide a refundable tax credit of $10,000 each year for five years ($50,000 total) to living kidney donors who donate a kidney to a stranger, which will go to those who have been waiting longest on the kidney waitlist. By the 10th year after the passage of the End Kidney Deaths Act, up to 100,000 Americans who were dying on the waitlist will instead have healthy kidneys, and taxpayers will have saved $10-$37 billion. Deceased donor kidneys last half as long as living donor kidneys, the gold standard of kidney care.

"One author of the National Organ Transplant Act, Representative Al Gore, said 40 years ago in 1984 that if transplant centers conclude efforts to improve voluntary donation are unsuccessful, incentives including tax credits, should be provided to donors."  

Their list of supporters is growing, and includes many transplant professionals as well as many people who have already donated or received kidneys.

A proposal to assess public opinion in Europe on compensation for organ donors

 Here's a paper that proposes doing an experiment. Concerning compensation for organ donors. In Europe.  With the hope of influencing policy and reducing the shortage of transplants.  (A very worthy cause, that brings to mind Titian's painting of Sisyphus...)

Ambagtsheer, Frederike, Eline Bunnik, Liset HM Pengel, Marlies EJ Reinders, Julio J. Elias, Nicola Lacetera, and Mario Macis. "Public Opinions on Removing Disincentives and Introducing Incentives for Organ Donation: Proposing a European Research Agenda." Transplant International 37 (2024): 12483.

Abstract: The shortage of organs for transplantations is increasing in Europe as well as globally. Many initiatives to the organ shortage, such as opt-out systems for deceased donation and expanding living donation, have been insufficient to meet the rising demand for organs. In recurrent discussions on how to reduce organ shortage, financial incentives and removal of disincentives, have been proposed to stimulate living organ donation and increase the pool of available donor organs. It is important to understand not only the ethical acceptability of (dis)incentives for organ donation, but also its societal acceptance. In this review, we propose a research agenda to help guide future empirical studies on public preferences in Europe towards the removal of disincentives and introduction of incentives for organ donation. We first present a systematic literature review on public opinions concerning (financial) (dis)incentives for organ donation in European countries. Next, we describe the results of a randomized survey experiment conducted in the United States. This experiment is crucial because it suggests that societal support for incentivizing organ donation depends on the specific features and institutional design of the proposed incentive scheme. We conclude by proposing this experiment’s framework as a blueprint for European research on this topic.

Kidney transplants for cats

 Kidney transplants for cats are a thing, and they all take the form of kidney exchange with a very short chain, in which the lives of two cats are saved. The donor cat is either an unadopted cat from a 'kill shelter,' or a veteran of a medical research trial, who (as the story below says) would otherwise face a "bleak future." But when such a cat becomes a living kidney donor, it is adopted into the family of the cat who receives the transplant (and I guess it goes without saying that they love cats..)

The Washington Post has the story

.Cat kidney transplants: For some, the pricey procedure is well worth it. The surgery can cost up to $25,000. “I just spent $17,000 on my roof, and I love my cat a lot more than my roof,” one person said.  By Marlene Cimons

"Segal, then living in the Boston area, drove his cat to the University of Pennsylvania School of Veterinary Medicine in Philadelphia where Despy underwent a kidney transplant in 2018. Today, Despy is thriving. So is Stevie, the kidney donor cat from a local shelter that Segal agreed to adopt as part of the renal transplant.

...

"Chronic kidney disease is one of the most common conditions in aging cats and a leading cause of death. The disease can be heritable, afflicting young cats such as Despy, and can result from toxin exposure, such as eating lilies.

...

"Like humans, cats have two kidneys, which filter waste from the body, and can live with just one if that kidney is healthy.

"Kidney transplants in cats began more than 25 years ago, although they still are rare, and only three facilities perform them: Penn Vet, the University of Wisconsin School of Veterinary Medicine and the University of Georgia College of Veterinary Medicine.

"Penn Vet has performed 185 transplants since 1998, the Georgia school more than 40 since 2009, and Wisconsin 87 since 1996.

...

"Many pet health insurance companies will cover some of the costs for the recipient, but usually not for the donor because “the donor is not the insured pet,” according to the North American Pet Health Insurance Association. The cost for the donor surgery to harvest the kidney is about 25 percent of the $25,000 total, Aronson says.

...

"Matching is easier for cats than it is for humans needing a transplant because there are only two blood types among all cats.

"Donors come from cat research breeding facilities or shelters, where they might otherwise have a bleak future, and families whose cats undergo transplants must adopt the donors. “For the cost of a kidney, [the donor cats] get to move in with a cat-loving household and are universally loved by their new adoptive families,” Schmiedt says.

...

"Transplants other than kidneys in pets aren’t viable because most require the death of the donor. Kidney transplants in dogs can be challenging because, unlike cats, they often suffer problems with immunosuppression, says Aronson, who has performed three. (The dogs survived but did not do as well long-term as cats, she says.)

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Earlier

Monday, November 23, 2020

Colin Sullivan on organ transplant policy (and on the job market this year)

His job market paper is an experiment with an exceptionally creative design. (Spoiler: it involves a cat actually getting a kidney transplant.) 

Eliciting Preferences Over Life And Death: Experimental Evidence From Organ Transplantation by Colin by D. Sullivan

Kidneys for Communities and first responders

The Police Benevolent Association of the City of New York receives national award for helping its members and first responders nationwide battling kidney disease

CLEVELAND, June 14, 2024 /PRNewswire/ -- The Police Benevolent Association of the City of New York (PBA) has been honored with the Kidneys for Communities National Community Impact Award in recognition of its dedication and commitment to promoting living kidney donation and supporting the organization's members who are living with kidney disease.

Kidneys for Communities, a national community-directed donation program, launched its Kidneys for First Responders program with the PBA in June 2023 after New York City police officer Melissa Quinones' successful living kidney transplant. Since then, Kidneys for Communities has worked with first responder organizations to help members and their families who are in need of a lifesaving kidney transplant.

Kidneys for First Responders provides access to and facilitates living kidney donations by connecting people from around the country who want to help first responders with those who need lifesaving kidneys. The program is based on the Community-Directed Donation model that leverages individuals' affinity with membership-based communities.

Ira Brody, Co-Founder of Kidneys for Communities, presented PBA President Patrick Hendry with the National Community Impact Award at the NYCPBA delegate meeting on June 14, 2024. The NYCPBA is the first organization to receive the award.

"This award is a testament to the unwavering dedication that New York City police officers show every day, whether we're protecting our communities or stepping up to help each other," said Patrick Hendry, PBA president. "The success of Officer Quinones' transplant inspired our entire blue family, showing the profound impact we have when we come together. We are committed to continuing this program and serving our active and retired NYPD police officers, our fellow first responders and their families living with kidney disease."

Killing more people than breast cancer or prostate cancer, kidney disease has in recent years been named by the Centers for Disease Control and Prevention as a leading cause of death in the U.S. Meanwhile, the Organ Procurement and Transplantation Network reports that approximately 13 people die each day waiting for a kidney transplant.

"The perseverance of the NYCPBA and the passion of the NYPD in rallying around officer Melissa Quinones were a catalyst for the Kidneys for First Responders program," said Atul Agnihotri, Kidneys for Communities chief executive officer and board president. "The PBA's commitment to the program has resulted in the support of many successful kidney transplants for first responders across the country."

The Police Benevolent Association of the City of New York (PBA) is the largest municipal police union in the nation and represents nearly 50,000 active and retired New York City police officers.

About Kidneys for Communities
Kidneys for Communities is a nonprofit that partners with organizations to impact the lives of their members by offering resources about living kidney donations to members of their communities, increasing the chances of a donor directing a gift-of-life kidney to a fellow member in need of a kidney. Addressing the shortage of living kidney donors through proactive community outreach programs, Kidneys for Communities developed the first-ever national Community-Directed Donation^™ program.

The program unlocks connections created through membership-based communities, with the goal of increasing the number of living kidney donors in the U.S. through paired kidney exchange.   

The Kidneys for Communities leadership team includes innovative leaders, kidney donors, social workers and medical experts in the fields of nephrology and renal transplantation — all of whom have seen this disease up close and are committed to making an impact.

To find out more about how to help first responders who need a kidney transplant, visit kidneysforcommunities.org/first-responders/

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Earlier:

Friday, March 12, 2021   Kidneys for Communities

Tuesday, July 11, 2023   NYC police officer receives a kidney through Kidneys for Communities (KFC:)