Showing posts with label nondirected donor. Show all posts
Showing posts with label nondirected donor. Show all posts

Wednesday, November 6, 2024

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."

Tuesday, November 5, 2024

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

Friday, October 4, 2024

Nondirected liver donation in Canada--from the beginning

The Ottawa Citizen has the story:

The Gosling Effect: How one man (and his liver) forever changed Canadian health care. In 2005, Kevin Gosling became the first living Canadian to anonymously donate an organ to a stranger. It set a cascade of kindness into motion.  by Elizabeth Payne 

"It had been a long road for the then-46-year-old from Cornwall, Ont. For months, health officials wouldn’t take him seriously when he offered to donate the organ anonymously. We don’t do that here, he was told. Not only that, it had never been done before anywhere in Canada.

"Some top officials in Canada’s leading liver transplant program were adamantly opposed to Gosling’s proposal. They said it was unethical and immoral. They questioned his motives, even his sanity. But Gosling persisted, so far as to undergo months of physical and psychological testing and preparation.

"After more than a year and a half, everything was set to go.

...

"Gosling didn’t know much about the recipient. He only knew that it was a child.

...

"Gosling’s stubborn altruism and unwavering belief that he could make a life-changing difference to someone in desperate need almost single-handedly changed Canada’s health-care system.

"In the 19 years since that fateful day when transplant surgeons removed part of Gosling’s liver and transplanted it into the body of the very ill child, the Toronto General Hospital has completed more than 137 such operations involving people donating anonymously to strangers – more than any other hospital in the world.

...

"He was a pioneer in an area in which Canada is now a world leader – the act of anonymously donating part of a liver – a phenomenon that continues to be met with disbelief in some parts of the world.

...

"Gosling’s offer was turned down multiple times until he was eventually put in touch with the head of the multi-organ transplant program at University Health Network, one of only two hospitals in the country where living liver transplants are now routinely done. Along the way he met health officials who were adamantly opposed to the idea, even citing the Hippocratic oath. (Later, he was told by one staunch opponent that following Gosling’s case had made him change his mind.)"

HT: Colin Rowat

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See also:

Cattral, Mark S., Anand Ghanekar, and Nazia Selzner. "Anonymous living donor liver transplantation: The altruistic strangers." Gastroenterology 165, no. 6 (2023): 1315-1317.


and here are all my posts on nondirected donors: https://marketdesigner.blogspot.com/search/label/nondirected%20donor


Tuesday, September 24, 2024

Abundant: a moving documentary about living organ donors

This past weekend I streamed a preview of a new movie about  living organ donors, kidneys (mostly) and some livers. It's called Abundant, and early in the project it described itself as "a documentary about the human experience of giving."

The movie consists mostly of the stories of donors, the experiences they had, and how they felt and feel about the lives they saved, and their connection to other donors, who are able to share the profound satisfaction that donation has given them. The stories are interspersed with commentary from various kinds of experts. (I was on the preview list since I get a good 60 seconds of commentary:)

The movie is also about chains, starting with kidney exchange chains, since many of the donors are nondirected donors who started chains.

At a more metaphorical level, the movie talks about chains of connections. One of the people they interview is Stephen Dubner, the host of the podcast Freakonomics.  He interviewed me on Freakonomics about kidney exchange, that podcast was heard by Ned Brooks, who was moved to donate a kidney (which started a chain) and then to start the National Kidney Donor Organization (NKDO).  Dubner interviewed him on Freakonomics too, and those Freakonomics interviews contributed more links to the chain.

This movie is destined to be a link in that chain too.

With more than half a million people on dialysis in the U.S., almost everyone knows or knows of someone who needs a kidney transplant.  This is the movie for all of them, with stories that may help them find a donor.  And who knows how many people will create new links in that chain.

It's a movie about how generosity creates abundance.

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earlier:

Wednesday, February 21, 2024

Friday, February 26, 2016


Wednesday, August 7, 2024

How Do Financial Obstacles Affect Decision-Making Among Potential Living Organ Donors?

 Here's a report on the effects of helping living organ donors with their expenses.

Mandell, Rebecca J., Abigail R. Smith, Kimberly A. Gifford, Barry A. Hong, Nathan P. Goodrich, Amit K. Mathur, Melissa A. Fava, Akinlolu O. Ojo, and Robert M. Merion. "How Do Financial Obstacles Affect Decision-Making Among Potential Living Organ Donors?" Progress in Transplantation (2024): 15269248241268679.

Abstract: Introduction: Living donation increases the organ supply, but associated non-medical expenses can disincentivize donation. Programs aimed at increasing living donation need to better understand how financial obstacles, including lost wages, impact the decision to pursue donation. Methods/Approach: Forty-eight interviews were conducted and analyzed using a grounded theory approach. Findings: Three key themes were identified that influenced decision-making: emotional attachment, temporal flexibility, and job security. These themes emerged when dividing interview participants into 3 groups: close relationship donors, broader network donors, and non-directed donors, representing donation to a family member or friend, a specific person they do not know well or at all, or a non-specified individual, respectively. Most close relationship donors wanted to donate regardless of personal financial cost, based on emotional attachment to the recipient. Wage reimbursement did not typically affect their decision-making but could reduce stress. Since non-directed donors did not donate to a specific individual, they could wait to achieve financial stability before donating, if needed. While wage reimbursement might create more proximate stability, non-directed donors had the flexibility to postpone donations until they could independently achieve financial stability. Lacking emotional attachment and temporal flexibility, broader network donors were particularly active decision-makers and most influenced by wage reimbursement. Across all groups, donors with job security were more resolute about donating. Conclusion: The findings underscore the importance of lost wage reimbursement to facilitate donation and reduce stress, and policies to protect donor job security."

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Related posts:

Thursday, March 31, 2022

Saturday, September 17, 2022

Tuesday, June 18, 2024

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

CLEVELANDJune 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


Friday, May 10, 2024

Kidney exchange in Germany?

 A draft law to make kidney exchange legal in Germany, and to allow nondirected donation, is making some progress: here (with the help of Google Translate) is a news story on the proposed new law.

Living kidney donation should be made easier

"In order to reduce the organ shortage in Germany, Federal Health Minister Karl Lauterbach (SPD) wants to make living kidney donations easier. This emerges from a draft amendment to the Transplantation Act. The Star first reported.

"According to the draft, the previously prescribed “proximity ratio” for so-called cross donations will no longer apply in the future. To date, couples in which one person wants to donate a kidney to the other but this is not possible due to incompatibility are only allowed to “cross-donate” with another couple in a comparable situation if there is a close relationship between the couples. This is intended to prevent organ trafficking and commercialization.

"In the future, this cross donation could be made without proximity, thereby significantly expanding the circle of recipients. According to the draft bill, the donation should be anonymous and organized by transplant centers. The aim of anonymity is to prevent money from being paid for an organ.

"Anonymous kidney donations should also be possible in principle. In the future, people in Germany could donate a kidney for selfless reasons without knowing who it is going to. In countries like the USA, this option has existed for a long time."


HT: Dorothea Kubler


Tuesday, April 9, 2024

Kidneys: compensation and altruism

 Apropos of my debate with Debra Satz this afternoon, here are two articles about kidney donation, from pure altruism or with compensation, in the New York Times and in The Journal of Medicine and Philosophy.

In the NYT:

Let People Sell Their Kidneys. It Will Save Lives., By Dylan Walsh, April 2, 2024

"There are 100,000 people in the United States waiting for a kidney. More than half a million are on dialysis, which from my experience I know to be more of a means of survival than a form of living. ... The National Kidney Foundation estimates that without more investment in preventing diabetes and other ailments, more than one million people will be suffering from kidney failure by 2030, up from over 800,000 now.

...

"Creating a market for kidneys is not a new concept, but it’s historically been met with disgust: Sell what? To be fair, some of the ways to structure such a market would be irresponsible, coercive and deserving of that disgust.

"But others are more thoughtful and prudent. One approach is to make the federal government the sole purchaser of kidneys. Donor and recipient would never meet. Compensation would be fixed, haggling impossible. After the kidney is acquired, the transplant process would unfold in the typical manner."

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In The Journal of Medicine and Philosophy:

Semrau, Luke. "The Altruism Requirement as Moral Fiction." In The Journal of Medicine and Philosophy: A Forum for Bioethics and Philosophy of Medicine, p. jhae011. US: Oxford University Press, 2024.

"Abstract: It is widely agreed that living kidney donation is permitted but living kidney sales are not. Call this the Received View. One way to support the Received View is to appeal to a particular understanding of the conditions under which living kidney transplantation is permissible. It is often claimed that donors must act altruistically, without the expectation of payment and for the sake of another. Call this the Altruism Requirement. On the conventional interpretation, the Altruism Requirement is a moral fact. It states a legitimate constraint on permissible transplantation and is accepted on the basis of cogent argument. The present paper offers an alternative interpretation. I suggest the Altruism Requirement is a moral fiction—a kind of motivated falsehood. It is false that transplantation requires altruism. But the Requirement serves a purpose. Accepting it allows kidney donation but not kidney sale. It, in short, rationalizes the Received View."

Here's the concluding paragraph:

"I have argued that the Altruism Requirement is a moral fiction. No sound arguments demonstrate its truth. It continues to enjoy widespread endorsement on account of its perceived link to the Received View. It is taken as a means of allowing kidney donation but not kidney sale. Thus, it is unsurprising that, on examination, in ethical argument and in the practice of transplantation, it is, de facto, a No Payment Requirement."

Friday, February 23, 2024

Directed and semi-directed living donation of kidneys: a current debate in Israel and elsewhere

 Israel leads the world in per capita living kidney donation. A good part of that comes from the work of Matnat Chaim (gift of life), an organization of religious Jews, who donate kidneys to people they don't know.  They are "semi-directed" rather than non-directed donors, in that the organization allows them to indicate some criteria they would like their recipients to have.  Sometimes they want their recipients to be fellow Jews, and this has generated some controversy in Israel.

Below is a study of this phenomenon, and in an accompanying editorial, a criticism of it.

Nesher, Eviatar, Rachel Michowiz, and Hagai Boas. "Semidirected Living Donors in Israel: Sociodemographic Profile, Religiosity, and Social Tolerance." American Journal of Transplantation (in press).

Abstract: Living kidney donations in Israel come from 2 sources: family members and individuals who volunteer to donate their kidney to patients with whom they do not have personal acquaintance. We refer to the first group as directed living donors (DLDs) and the second as semidirected living donors (SDLDs). The incidence of SDLD in Israel is ∼60%, the highest in the world. We introduce results of a survey among 749 living donors (349 SDLDs and 400 DLDs). Our data illustrate the sociodemographic profile of the 2 groups and their answers to a series of questions regarding spirituality and social tolerance. We find SDLDs to be sectorial: they are mainly married middle-class religious men who reside in small communities. However, we found no significant difference between SDLDs and DLDs in their social tolerance. Both groups ranked high and expressed tolerance toward different social groups. Semidirected living donation enables donors to express general preferences as to the sociodemographic features of their respected recipients. This stirs a heated debate on the ethics of semidirected living donation. Our study discloses a comprehensive picture of the profile and attitudes of SDLDs in Israel, which adds valuable data to the ongoing debate on the legitimacy of semidirected living donation.


Danovitch, Gabriel. "Living organ donation in polarized societies." American Journal of Transplantation, (Editorial, in press).

"Nesher et al are to be congratulated for reporting on a unique, effective, yet ethically problematic manifestation of living kidney donation in Israel. To summarize, living kidney donation has become “de riguer,” a “mitzvah” (a religiously motivated good deed) among a population of mainly orthodox Jewish men living in religiously homogenous settlements. According to the authors, the donors view themselves as donating altruistically within a larger family. The donations, over 1300 of them, 60% of all living donations in the country, have changed the face of Israeli transplantation, reduced the waiting time for all transplant candidates on the deceased donor waiting list,2 and minimized the temptation of Israeli transplant candidates to engage in “transplant tourism,” a phenomenon that was an unfortunate feature of Israeli transplantation before the passage of the Israeli Transplant Act of 2008 that criminalized organ trading.3

So, what’s the problem? Matnat Chaim (“life-giving”), the organization that facilitates the donations, permits the donors to pick and choose among a list of potential recipients using criteria that according to its own website,4 and as Nesher et al note,1 are not transparent. ... frequently the donors elect to donate to other Jews.  ... " Israel is a country with an 80% Jewish majority; a decision to only donate to other Jews, thereby excluding non-Jews, is a practice that, were it reversed in a Jewish minority country, would likely be labeled antisemitic. Concern that the process encourages racist and nationalistic ideation has been raised in the past6 and only emphasized by the public pronouncement of some media-savvy kidney donors.7

"What lessons does the Israeli experience hold for the US and other countries, faced as all are, with a shortage of organs for transplant? Conditional living donation exists to a limited extent in the US: DOVE is an organization that works to direct living kidney donation to US army veterans9; Renewal is an organization that encourages and facilitates living donation from Jews to other Jews but also to non-Jews10; in the 1990s an organization called “Jesus Christians” made organ donation one of its precepts.11 But in each of these cases, it is a minority group whose interests are being promoted.

...

"What now for Matnat Chaim? Given its prominent impact on Israeli transplantation, its allocation policies must be transparent and subject to public comment. Criteria must be medical in nature and religious or political considerations excluded. Fears that as a result living kidney donation rates will plummet are likely exaggerated. "

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I can't help reading this discussion while being very aware that Dr. Danovitch is an ardent opponent of compensating kidney donors, for fear that inappropriate transplants would take place if that were allowed.  In much of that discussion, inappropriateness of transplants focuses on possible harm to the (paid) donors, but the donors in the Israeli case are unpaid. Here his concern is that donor autonomy about to whom to give a kidney comes at the expense of physician autonomy in choosing who should receive a transplant, by "medical" criteria. But frequently those criteria have a big component based on waiting time, rather than any special medical considerations. So maybe in general he thinks that privileging the physician's role in this way is worth having fewer organs and consequently more deaths.

Still, I think he has a point about how we perceive what is repugnant. Having minority donors donate to fellow minority recipients seems much less repugnant than having majority donors specify that they aren't interested in donating to minority recipients.

But, speaking of donor autonomy, I'm not sure that there are practical ways around it, since semi-directed donors could always present as fully directed donors to a particular person that some organization had helped them find. So, we may just have to live with the increase in donations and lives saved that donor autonomy can support.

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Earlier posts:

Thursday, July 27, 2023

Kidney brouhaha in Israel: is a good deed still good when performed by a shmuck?


I ended that post with this:

"I'll give the last word to a Haaretz op-ed, also in English:


Monday, July 31, 2023

Altruistic kidney donors in Israel


...
and, here in the U.S.:

Friday, March 12, 2021

Kidneys for Communities

" A new organization, Kidneys for Communities, plans to advocate for living kidney donation by seeking donors who identify with a particular community.  Their come-on is "Put your kidney where your heart is.  Share your spare with someone in your community"

Wednesday, February 21, 2024

Nondirected living kidney donors--Abundant (the movie, in progress)

 Abundant is a movie in the making,  a documentary about altruism, focused on non-directed living kidney donors, who start kidney exchange chains. It isn't done yet, but now they are in the editing process...

"Abundant is a feature-length documentary film about the complex, human experience of giving.  To fully understand giving, Abundant enters the world of extreme altruism.  And there are no more extreme altruists than non-directed living kidney donors.  These rare individuals give a kidney away to a complete stranger.  It’s all risk, no reward.  Or is it? 

"Abundant features true stories of non-directed kidney donors recorded live on stage at the performance art show CrowdSource for Life.  Their stories illustrate the unimaginable impact of extreme giving.  It’s obvious their kidney donations saved another person’s life, but there is so much more involved.

"Insights from experts from the worlds of economics, spirituality, business, the arts, psychology and neuroscience, frame and explain the altruistic psyche. In his interview for Abundant, Buddhist monk Bhante Sujatha described giving with a literal translation from his Sri Lankan language, Sinhala.  In Sinhala, giving means, “It leaves my hand.”  That’s a clear, simple and elegant concept.  Yet so many of us struggle with the genuine act of giving and the abundance required to give openheartedly.

"Through stories, commentary and experiences, Abundant explores how our culture struggles with abundance and what we can do to become more altruistic as a community."

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Update: here's a link to join the email list for updates on the movie:  https://abundantmovie.com/

Monday, July 31, 2023

Altruistic kidney donors in Israel

 The Forward has the story

Why Israel has more altruistic kidney donors than any other country in the world By Michele Chabin

"Israel is in the bottom half of countries when it comes to organs harvested after death, the type used in most transplants globally. ...

"But ...for more than a decade the number of Israelis who have donated kidneys while they are still alive and well has increased to the point that Israel is the worldwide leader in live donations per capita.

"That’s in large part thanks to the Jerusalem-based nonprofit ... Matnat Chaim, Hebrew for “gift of life,” which recruits and encourages individuals in good health to donate a kidney for purely altruistic reasons. 

"Of the more than 1,450 live kidney donations Matnat Chaim has facilitated, more than 80% percent were altruistic – donated by individuals who had no connection to the recipient. According to the group’s records, it made at least half of the matches between recipients and live donors in Israel from 2015 to 2022.

"Rabbi Yeshayahu Heber, whose life was saved by kidney from a live donor, founded Matnat Chaim in 2009 with his wife Rachel. Rabbi Heber, who died from COVID-19 in April 2020, had said he was moved to recruit volunteer donors after watching other kidney patients die for lack of transplants. 

"On Israel Independence Day this spring, Rachel Heber was awarded the prestigious Israel Prize in honor of the couple’s lifesaving work. 

...

Broadly speaking, the medical definition says that death occurs when the brain is no longer functioning, even if the heart is still beating. There are exceptions, but most ultra-Orthodox rabbis say death occurs when the heart stops beating and the person stops breathing.

“The problem is, if you wait until the heart stops, you can’t harvest the organs,” said Judy Singer, Matnat Chaim’s assistant director.

"For these reasons, Heber made it his mission to recruit live kidney donors.

"With other groups, including the Halachic Organ Donor Society and the Israel Transplant Authority, Matnat Chaim has convinced many religious Jewish communities to encourage members to donate altruistically. “Today, religious Jews, and haredim especially, are at the forefront of live kidney donations,” Singer said. “They say, I can’t donate an organ after death, but take my kidney and help someone now.”About 90% percent of Matnat Chaim’s kidney donors belong to the Modern Orthodox or ultra-Orthodox streams of Judaism.

“That number used to be 97%, but we’re always looking to increase the number of secular donors and Arab donors,” Singer said.

"The group has arranged for “many” Arab Israelis to receive transplants, she said, but did not share numbers for those recipients. Matnat Chaim is looking to work with an Arab group or individual to increase the number of Arab donors and recipients in the future, she added.

...

"According to the Ministry of Health, 656 transplants were carried out in Israel in 2022. Of those about half — 326 — came from living donors. By comparison in the U.S. that same year, about 15% of all organ donations came from living donors.

"Though transplant rates have been rising in both countries, many are still dying for lack of a donor. In Israel, 77 people died waiting for one in 2022."

 

Tuesday, July 11, 2023

NYC police officer receives a kidney through Kidneys for Communities (KFC:)

 Police magazine has the story of an anonymous living kidney donor who wanted his/her kidney to go to a first responder, facilitated by  Kidneys for Communities.

NYPD Officer Received Kidney Transplant with Aid of Nonprofit Group and PBA. Kidneys for Communities' Kidneys for First Responders initiative is designed to improve access to and facilitate living kidney donations by connecting those who want to help first responders with those who are in need of a lifesaving kidney donation.  July 7, 2023

"Kidneys for Communities, a national community-directed living kidney donation program, launched its Kidneys for First Responders initiative with its first kidney transplant recipient, New York City Police Officer Melissa Quinones, with assistance from the Police Benevolent Association of the City of New York.

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And here's the KFC press release (doesn't that acronym already sound familiar?):

Kidneys for Communities Announces their ‘Kidneys for First Responders’ Initiative

"Kidneys for Communities’ Kidneys for First Responders initiative is designed to improve access to and facilitate living kidney donations by connecting those who want to help first responders with those who are in need of a lifesaving kidney donation"

"As Dr. Lloyd E. Ratner, who performed Quinones’ transplant, affirms, “The community-directed model, now available to interested communities and pioneered by Kidneys for Communities, is a common-sense approach to growing the pool of living kidney transplant donors. As more communities come on board, we expect it will shorten the critical waiting time for transplant recipients and save lives.”."

Monday, July 10, 2023

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.

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

Friday, February 26, 2016

Saturday, January 14, 2023

The power of kidneys, altruism, and books. (And recommendation of a doctor in the UK)

 Here's a story, about kidneys and about books, in inews.co.uk:

‘It’s a gift with no conditions attached’: Why I donated my kidney to a person I’ll never meet. 250 people die each year in the UK because there are not enough kidneys available. So when GP Richard Armitage discovered altruistic donation was possible, he gave away an organ. By Tom Ough

"Despite being a GP, Richard Armitage had spent most of his career unaware that altruistic donations were possible. In this respect, Armitage, 34, was like many of his colleagues in the medical profession. That changed in 2017. Armitage, visiting the Nobel Laureate Museum Stockholm, bought a book by Alvin Roth, an economist who won a Nobel Prize in 2012. The book was Who Gets What — and Why: The New Economics of Matchmaking and Market Design, and in it Roth wrote how we allocate things within markets that aren’t dictated by money.

"Examples include the allocation of children to schools, doctors to hospitals, and kidneys to people with end-stage renal disease. Roth discussed what is known as non-directed altruistic kidney donations – in short, kidneys donated to strangers. Sitting on the plane home, Armitage read the book with fascination. When he returned to Nottingham he checked the NHS website to see whether non-directed altruistic kidney donation was possible in the UK. It was.

...
"In 2018 altruistic donors began being routinely added to the UK Living Kidney Sharing Scheme (UKLKSS), which oversees this sharing of organs by living donors. Apparently as a result of the move, in 2019 there was a 60 per cent rise in altruistic donations – from 124 to 183. Twenty-eight per cent of kidney transplants are now from living donors.
...
"It seemed a good application of the kind of moral philosophy that Armitage had discovered the same year, 2017, when he read Famine, Affluence and Morality. It is an influential essay in which Peter Singer, an Australian philosopher, argued that the West should be donating far more resources to humanitarian causes.
...
"All of Armitage’s intellectual discovery, including his reading of Roth’s writing on kidney donation, happened in one year, 2017 – also the year that Armitage finished his GP training. It marked the end of “a 10-year head-down slog” that began with the first day of medical school. “After I passed my last exam, it felt like I finally lifted my head up and asked: ‘But why am I doing this?’”

"And so Armitage’s first conversation with his regional kidney transplant centre was followed by an appointment with a Living Donor Nurse, who explained what donation would entail: the testing, the preparation, the surgery. Armitage was invited to speak to his loved ones and consider whether he was ready; it turned out he wasn’t.

"There were several hold-ups. At first, Armitage felt the beginning of his GP career was the wrong time to take weeks off work. Then Covid stalled the NHS’s kidney-sharing scheme. Armitage still wanted to donate his kidney, and successfully underwent a battery of investigations: a renal tract ultrasound scan, an electrocardiogram, chest X-ray, various fasted blood tests, and an X-ray of his kidney. As per the requirements of the donation scheme, Armitage met a clinical psychologist to discuss his state of mind, put the psychologist in touch with a loved one in order to independently assess his state of mind, and met a representative of the Human Tissue Authority to ensure that he was not donating his kidney under duress or for financial gain.
...
"Armitage spent several weeks in Ukraine as part of his work for the charity UK-Med, which sent British medics to deliver emergency healthcare. “That obviously meant I couldn’t continue with the donation process,” he says with some understatement. But when he got home, he told the donor team he was ready. “Can we crack on?”, he asked.

"The operation was on 23 November. Everything was in place; Armitage was part of a chain on which three people with end-stage renal disease were due a kidney.
...
"And just before he was discharged – three days after surgery, having convinced the hospital staff he was ready to take care of himself – he was informed that all the recipients in the chain now had working kidneys. “That was a very meaningful moment that made it all worthwhile,” says Armitage."

Sunday, December 4, 2022

It's not so easy to become a living kidney donor: report from the Cleveland Clinic

 It's not so easy to become a living kidney donor.  Here's a report on the pipeline at the Cleveland Clinic:

Cholin, Liza K., Jesse D. Schold, Med MStat, Susana Arrigain, Emilio D. Poggio, John R. Sedor, John F. O’Toole, Joshua J. Augustine, and Alvin C. Wee. " Characteristics of Potential and Actual Living Kidney Donors: A Single Center Experience, Transplantation (2022).


It's concerning to see that 164 donor candidates were rejected at this center for being "ABO or crossmatch incompatible."  Were they told about the possibility of kidney exchange?


 

"There was a mean of 2.8 and median of 1 (1, 3) potential donors for every 1 transplant candidate that did not receive a kidney. There was a mean of 5.9 and median of 2 (1, 5) potential donors for every 1 transplant candidate that received a kidney."


HT: Frank McCormick

Saturday, October 15, 2022

Kidney exchange in The Times of India

 The Times of India covers my talk at the Indian Society of Transplantation meeting:

Alvin Roth for legal boost to kidney exchange pool in India by Chaitanya Deshpande, Oct 15, 2022c

 The site makes it hard to extract text, but here's a photo of some comments, which make me hope that some action may be taken:


Update: 





Saturday, September 17, 2022

Non-directed organ donors and NLDAC financial support

For some years I've been a member of the advisory group of the National Living Donor Assistance Center (NLDAC) which is authorized to offer federally funded financial support (for travel, and now also for lost wages and childcare expenses) to needy donors whose recipients also cannot afford to offer such support. As kidney exchange has grown, so have the number of non-directed donors, who don't have a particular recipient in mind. In a recent email, NLDAC has defined how these donors can qualify for financial assistance.

"Defining Non-Directed Donors

"Eligibility for NLDAC depends primarily on the recipient's household income. This is because the Organ Donation and Recovery Improvement Act requires NLDAC to assess the recipient's ability to reimburse their donor before providing reimbursement with federal funding. Most donors have a particular recipient in mind, and that person is allowed to reimburse their expenses, if they are willing and able to do so. NLDAC provides reimbursement when the recipient cannot afford to provide it. Some donors do not have a recipient to ask for help, though. A non-directed donor is a living donor with no intended recipient. These donors can apply to NLDAC without recipient information because there is no identified recipient. Non-directed donors are eligible for NLDAC regardless of their eventual recipient's information, as long as the donor meets the residency requirements and applies on time. 

"Let's consider some examples:

"Tina heard on the news that there are 5,000 people waiting for a kidney transplant in her state. She called a transplant center and asked that they give her kidney to anyone who needs it, if she is approved to donate. Tina is a non-directed donor because she has no intended recipient. 

"Anthony read about a stranger's search for a living kidney donor on Facebook. Though he doesn't know the person, he would like to be evaluated as a potential donor for them. He is a directed donor because he has an intended recipient, even though he doesn't know them personally. 

"Jacqueline wants to donate to a member of her church without revealing her identity to the recipient. She is a directed donor because she has an intended recipient, though she wants to remain anonymous. 

"Esther wanted to donate to her husband, but they are not a good match. Through kidney paired donation, she donates to a stranger, and the stranger's loved one donates to her husband. Because Esther has an intended recipient who received a transplant through her donation, she is a directed donor. 

"Devin was being evaluated as a potential living donor to his uncle when his uncle received a deceased donor transplant. Devin decided he was still willing to donate even though his uncle no longer needed his organ, and asked the transplant center to give his kidney to anyone on the waitlist. Devin is now a non-directed donor because he does not have an intended recipient anymore. 

"Which of these donors can apply to NLDAC without their recipient's information? Tina and Devin, because they are donating without an intended recipient. Anthony, Jacqueline, and Esther can apply with their intended recipient, and NLDAC will keep the donor and recipient's information private. Esther would apply with her originally intended but incompatible recipient, her husband."

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

All my posts on NLDAC:  https://marketdesigner.blogspot.com/search?q=nldac&max-results=20&by-date=true


Thursday, September 8, 2022

Three living kidney donors talk about their experience

 Tonight at 6pm Eastern, three donor stories from the National Kidney Donation Organization (NKDO)



Click Here to Register

Monday, August 8, 2022

Renewal: "My donor wanted to give me her kidney — and get home in time for Shabbat"

 When reporter Stewart Ain needed a kidney transplant, he contacted Renewal. He explains the process that led to him being matched to an altruistic donor and transplanted.

My donor wanted to give me her kidney — and get home in time for Shabbat  By Stewart Ain

"Two months later, my wife Meryl and I were sitting in Renewal’s office speaking with Rabbi Josh Sturm, Renewal’s director of outreach, and Miriam Lefkowitz, Renewal’s kidney coordinator. We were told to reach out to friends, relatives, neighbors — everyone we knew — and ask them to listen to an online presentation the rabbi would make about what kidney donation entails and how it literally gives the recipient a new life. 

"As we walked out the door, the rabbi said they had found that if at least 200 people listened to the presentation, the odds were very good a donor would be found. And the donor would not necessarily be someone actually listening online but often from the advance publicity the presentation would generate.

"Renewal created a flier for us with information about the upcoming presentation. At my request, several synagogues posted it on their websites, a couple of Jewish weekly newspapers ran it each week, and Hadassah Magazine featured my story in an article about kidney transplants. One of the three synagogues we belong to contacted the NBC station in West Palm Beach, Florida. The station’s reporter interviewed both me and one the synagogue’s rabbis. A story about my need for a kidney was on the evening newscasts.

"The presentation took place during the 10 days between Rosh Hashanah and Yom Kippur last fall. More than 250 computers tuned in. In the following days I learned that several people had asked Renewal for the nasal-swab kit needed to see if they were a match for me. Later, I heard from several friends and relatives that they had been disqualified as donors for various reasons. "

His donor may not have been one of those who had heard the presentation about his case.

"The idea of donating one of her kidneys surfaced again last Hanukkah when someone mentioned that their daughter had just donated a kidney through Renewal. She contacted the organization in November, and three days later received a swab kit. On Jan. 17, a rabbi from Renewal called and asked if she was still interested in donating. When she said yes, she was told she was a match for two people.

“I remember saying, `I’m not going to play God, let whoever is a better match have it,” she said."

Both patient and donor are doing well.