Coalition to Modify NOTA (the National Organ Transplant Act of 1984)

 Elaine Perlman forwards the following discussion points:

Coalition to Modify NOTA Talking Points

modifyNOTA.org

What is the Coalition to Modify NOTA proposing? The Coalition to Modify NOTA proposes providing a $50,000 refundable tax credit to remove all disincentives for American non-directed kidney donors who donate their kidney to a stranger at the top of the kidney waitlist in order to greatly increase the supply of living kidney transplants, the gold standard for patients with kidney failure.

What is the value of a new kidney? The value of a new kidney, in terms of quality of life and future earnings potential, is between $1.1 million and $1.5 million.

What is the American kidney crisis? Fourteen Americans on the waiting list for a kidney transplant die each day. That number does not include the many kidney failure patients who are not placed on the waiting list but would have benefited from a kidney transplant if we had no shortage. The total number of Americans with kidney failure will likely exceed one million by 2030. 

Why not rely on deceased donor kidneys to end the shortage? A living kidney transplant lasts on average twice as long as a deceased donor kidney. Fewer than 1 in 100 Americans die in a way that their kidneys can be procured. Currently, the 60% of Americans who are registered as deceased donors provide kidneys for 18,000 Americans annually. Even if 100% of Americans agreed to become organ donors, this would raise donations by only about 12,000 per year. In the USA, 93,000 Americans are on the kidney waitlist. A total of 25,000 people are transplanted annually, two-thirds from deceased donors and one-third from living donors. The size of the waitlist has nearly doubled in the past 20 years, while the number of living donors has not increased.

What is the extra value that non-directed kidney donors provide? Non-directed kidney donors often launch kidney chains that can result in a multitude of Americans receiving kidneys. Fewer than 5% of all living kidney donations are from non-directed kidney donors who are an excellent source of organs for transplantation because they are healthier than the general population. 

 

How much does the taxpayer currently spend on dialysis? Kidney transplantation not only saves lives; it also saves money for the taxpayer. The United States government spends nearly $50 billion dollars per year (1% of all $5 trillion collected in annual taxes) to pay for 550,000 Americans to have dialysis, a cost of approximately $100,000 per year per patient, a treatment that is far more expensive than transplantation.

 

How many more lives will be saved with the refundable tax credit for non-directed donors? The number of non-directed donors increased from 18 in 2000 to around 300 each year. After our Act becomes law, we estimate that we will add approximately 7,000 non-directed donor kidneys annually. That is around 70,000 new transplanted Americans by year ten. 

 

How much tax money will be saved once the Act is passed? The refundable tax credit will greatly increase the number of living donors who generously donate their kidneys to strangers. We estimate that in year ten after the Act is passed, the taxpayers will have saved $12 billion. 

 

What is a refundable tax credit? A refundable tax credit can be accessed by both those who do and those who do not pay federal taxes. 

 

What do Americans think about compensating living kidney donors? Most Americans favor compensation for living kidney donors  to increase donation rates. 

 

Who is able to donate their kidneys?  Donation requires potential organ donors to undergo a comprehensive physical and psychological evaluation, and each transplant center has its own rigorous criteria. Only around 5% of those who pursue evaluation actually end up donating, and only about one-third of Americans are healthy enough to be donors. Providing financial incentives will encourage more Americans to donate their kidneys to help those with kidney failure.

 Do kidney donors currently have expenses that result from their donation? The medical costs of donation are covered by the recipients' insurance, but donors are responsible for providing for the costs of their own travel, out-of-pocket expenses, and lost wages. Programs like the federal NLDAC and NKR's Donor Shield can help offset these costs, making donation less expensive.

Is it moral to compensate kidney donors? Compensation for kidney donors can be viewed as a way to address the current kidney shortage and save lives. Americans are compensated for various forms of donation such as sperm, eggs, plasma, and surrogacy, all of which involve giving life. 

How long do we need to compensate living kidney donors? Compensation should continue until a xenotransplant or advanced kidney replacement technology becomes available. In the meantime, it's crucial to prevent further loss of lives due to the shortage.

 Will incentivizing donors undermine altruism?  Financial compensation for donors can coexist with altruism. Donors can opt out of the funds from the tax credit or choose to donate those funds to charity. The majority of donors support financial compensation, and relying solely on altruism has led to preventable deaths.

 In addition to ending the kidney shortage, what are other benefits of the Act? The Act can help combat the black market for kidneys and reduce human trafficking because we will have an increased number of transplantable kidneys. It can also motivate individuals to become healthier to pass donor screening, potentially further reducing overall healthcare costs.

 Why provide non-directed donors with a refundable tax credit of $50,000? The compensation is designed to attract those who are both healthy and willing to donate. Given the commitment, time, and effort involved in the donation process, this compensation recognizes the value of those who save lives and taxpayer funds.

 When more donors step forward, can transplant centers increase the number of surgeries?  There is considerable unused capacity at most U.S. transplant centers, and increasing the number of donors is likely to lead to more surgeries. The goal is to perform more kidney transplants and reduce the waitlist, benefiting patients in need.

 In what way does the Act uphold The Declaration of Istanbul?  While the Act deviates from one principle of the Declaration of Istanbul by offering compensation, it aligns with the other principles and is expected to standardize compensation and reduce worldwide organ trafficking.

 What about dialysis as an alternative to transplant?  Dialysis, while a treatment option, can be a challenging and uncomfortable process for patients. For those who could have been transplanted if there were no kidney shortage, dialysis can result in needless suffering and an untimely death.

 Why not compensate living liver donors? Liver donation is riskier and not as cost-effective as kidney donation. While the Act currently focuses on kidney donors, it's possible that compensation for liver donors could be considered in the future.

 What about the argument that providing an incentive to donate will exploit the donors, especially low income donors? 

Primarily middle and low income kidney failure patients are dying due to the kidney shortage. People with lower incomes tend to have social networks with fewer healthy people because health is related to income level. In addition, being placed on a waitlist often costs money. Kidney donation also costs money, an estimated 10% of annual income. The refundable tax credit will help low income donors and recipients the most by making donation affordable and increasing the number of kidneys for those waiting the longest on the waitlist, frequently middle and low income Americans. The tax credit aims to help those most affected by the kidney shortage, as poorer and middle-income individuals often bear the brunt of the kidney crisis’s consequences. The Act will level the playing field, making it easier for those at all income levels to receive a life-saving kidney. 

Please examine this chart:

 

A naturally occurring deceased-donor-initiated kidney exchange chain, by Maghen and Veale

 Here's an interesting case report, from the innovative UCLA transplant center, about a kidney exchange chain actually, if not officially, initiated by a deceased donor.

With “reverse engineering” were some living donor kidney chains in actuality triggered by deceased donors?  by Ariella Maghen and Jeffrey Veale, Clinical Transplantation, First published: 21 September 2021 https://doi.org/10.1111/ctr.14491

"Mr. M is a 58-year-old polycystic kidney disease patient waiting for a kidney transplant in the United States (US). Although his wife Mrs. M offered to donate her kidney to him, they were not a compatible match. While waiting to be “exchanged or swapped” with another donor/recipient pair facilitated by the National Kidney Registry (NKR), Mr. M received a rare offer for a “perfectly-matched” (zero-mismatch) deceased donor (DD) kidney. Only 5% of candidates receive a perfectly matched kidney from a DD; Mr. M accepted the offer and underwent transplantation in February 2020. Currently, his allograft is functioning beautifully, and he states never feeling better. 

"One may think Mrs. M feels relief now and that she is “off-the-hook” to donate. But au contraire as she has completed the extensive donor evaluation and remains in the mindset to donate. Mrs. M's gratitude towards the DD family's gift to her husband motivated her to “pay-their-generosity-forward” and now donate her kidney.

"Mrs. M's donation performed on October 21, 2020, brings greater awareness to the concept of a DD triggered kidney chain, a relatively novel phenomenon in the United States.

...

"This case elucidates how transplant chains, believed to be initiated by non-directed living donors, when reverse-engineered may in actuality have been triggered by DDs who were at the pole position. Although this may be one of the first reported cases, it is possible that other transplant centers have been encouraging the allocation of donors in this fashion. There are likely more living donors who may still want to donate their kidney even after their intended recipient received a DD transplant via “zero-mismatch” or “high-PRA” offers."

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Italy seems to be among the first places to formally follow up on the idea of deceased donor chains. See:

Transplant InternationalVolume 33, Issue 10 p. 1177-1184, Kidney exchange strategies: new aspects and applications with a focus on deceased donor-initiated chains, by Lucrezia Furian,Antonio Nicolò,Caterina Di Bella,Massimo Cardillo,Emanuele Cozzi,Paolo Rigotti  First published: 09 August 2020  https://doi.org/10.1111/tri.13712

Summary: Kidney paired donation (KPD) is a valuable way to overcome immunological incompatibility in the context of living donation, and several strategies have been implemented to boost its development. In this article, we reviewed the current state of the art in this field, with a particular focus on advanced KPD strategies, including the most recent idea of initiating living donor (LD) transplantation chains with a deceased donor (DD) kidney, first applied successfully in 2018. Since then, Italy has been running a national programme in which a chain-initiating kidney is selected from a DD pool and allocated to a recipient with an incompatible LD, and the LD’s kidney is transplanted into a patient on the waiting list (WL). At this stage, since the ethical and logistic issues have been managed appropriately, KPD starting with a DD has proved to be a feasible strategy. It enables transplants in recipients of incompatible pairs without the need for desensitizing and also benefits patients on the WL who are allocated chain-ending kidneys from LDs (prioritizing sensitized patients and those on the WL for longer).

...

"Melcher et al. [10] suggested merging DD programmes with KPD programmes in 2016, an idea explored more recently in a concept paper issued by the Organ Procurement and Transplantation Network (OPTN) [11]. 

...

10 M. L. Melcher, J. P. Roberts, A. B. Leichtman, A. E. Roth, M. A. Rees Utilization of deceased donor kidneys to initiate living donor chains. Am J Transplant 2016; 16: 1367.

11Rock Haynes C, Leishman R. Allowing deceased donor-initiated kidney paired donation (KPD) chains. OPTN/UNOS Kidney Transplantation Committee. Concept Paper; July 31–October 2, 2017.

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Earlier:

Tuesday, August 7, 2018

Deceased donor chains: Market design language is entering transplantation

Monday, April 11, 2016

Using deceased donor kidneys to start living donor kidney exchange chains

Lawsuits involving NKR's kidney exchange contracts

 Kim Krawiec, the Sullivan & Cromwell Professor of Law at the University of Virginia, sheds some light on recent legal exchanges between the kidney exchange nonprofit National Kidney Registry and some of the Transplant Centers that are (or were) members of its network. Both suits (which seem to have been settled out of court) involved the TC's desire to withdraw (or partially withdraw) from NKR's system, and NKR's attempt to charge them $1000/kidney/month in perpetuity (or until they supply the kidneys) for kidneys they received in excess of kidneys they supplied. (In particular, NKR wanted $8000 per month from Colorado forever, or until they supplied 8 kidneys.)  Her post is long and learned, and well worth reading in its entirety, but here are some snippets.

She leads off with this graphic of a judge's gavel hammering a stethoscope

Recent Contract Disputes In The Transplant World November 3, 2021 / By Kimberly Krawiec 

"Readers may be interested in two relatively recent lawsuits involving the National Kidney Registry (NKR) and the University of Colorado Hospital Authority (“UCH,” filed 3/26/21) and the University of Maryland Medical Center (“UMMC”, filed 4/2/2018), respectively. (Citations and links to both lawsuits are at the end of this post)

...

This option to specifically perform is interesting in its own right, and I may say more about it later, but what if a Member Center couldn’t deliver kidneys to the network, say because the UCH kidney transplant program had been closed? Or because they determined that kidney exchange was bad for their patients? In the event that delivering kidneys to NKR is impossible, is a court likely to award NKR these fees into perpetuity – a present value of nearly $5 million? (using an interest rate of 2%, which may understate the amount, given the current low interest rate environment)

"Under the penalty doctrine, NKR would have to describe its loss, and why $1000/kidney/month is a reasonable estimate of it, even if it can’t provide a precise amount. Here, the “in perpetuity” aspect may be troubling to courts, even if the present value is not high relative to whatever the alleged loss is, as it seems unlikely that NKR is harmed in perpetuity if a member center backs out.

...

"when federal law prohibits the exchange of valuable consideration for a kidney, by definition there is no market price for either the court or the contracting parties to reference. Here, the parties attempted to overcome that problem by specifying a recurring charge, but it’s continuation into perpetuity may raise eyebrows, even if the present value of the charges is otherwise reasonable.

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The various legal documents can be found at these links

https://kimberlydkrawiec.org/wp-content/uploads/2021/11/Member-Terms-and-Conditions.pdf

 https://kimberlydkrawiec.org/wp-content/uploads/2021/11/Complaint.pdf

 https://kimberlydkrawiec.org/wp-content/uploads/2021/11/May-7-motion-to-dismiss.pdf

 https://kimberlydkrawiec.org/wp-content/uploads/2021/11/1Summons-Complaint.pdf

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Given NKR's non-profit status, paragraph 30 of the Colorado complaint caught my eye:

Vouchers in kidney exchange chains: a report of initial experience at NKR

 Here's a report of the experience with kidney vouchers, pioneered at UCLA and the National Kidney Registry. That's a policy that has now spread more widely, in the U.S.  This paper reports data from the NKR for 2014 through January 2021, during which time 250 donors were given vouchers, 6 of which have so far been redeemed. Voucher donors start kidney exchange chains (like non-directed donors) that can later be redeemed by (e.g.) their family members.

Voucher-Based Kidney Donation and Redemption for Future Transplant, by Jeffrey L. Veale, MD1; Nima Nassiri, MD2; Alexander M. Capron, JD2,3; Gabriel M. Danovitch, MD1; H. Albin Gritsch, MD1; Matthew Cooper, MD4,5; Robert R. Redfield, MD6; Peter T. Kennealey, MD7; Sandip Kapur, MD8

JAMA Surg. Published online June 23, 2021. doi:10.1001/jamasurg.2021.2375

"Abstract:

Importance  Policy makers, transplant professionals, and patient organizations agree that there is a need to increase the number of kidney transplants by facilitating living donation. Vouchers for future transplant provide a means of overcoming the chronological incompatibility that occurs when the ideal time for living donation differs from the time at which the intended recipient actually needs a transplant. However, uncertainty remains regarding the actual change in the number of living kidney donors associated with voucher programs and the capability of voucher redemptions to produce timely transplants.

...

Design, Setting, and Participants  This multicenter cohort study of 79 transplant centers across the US used data from the National Kidney Registry from January 1, 2014, to January 31, 2021, to identify all family vouchers and patterns in downstream kidney-paired donations. The analysis included living kidney donors and recipients participating in the National Kidney Registry family voucher program.

Exposures  A voucher was provided to the intended recipient at the time of donation. Vouchers had no cash value and could not be sold, bartered, or transferred to another person. When a voucher was redeemed, a living donation chain was used to return a kidney to the voucher holder.

Main Outcomes and Measures  Deidentified demographic and clinical data from each kidney donation were evaluated, including the downstream patterns in kidney-paired donation. Voucher redemptions were separately evaluated and analyzed.

Results  Between 2014 and 2021, 250 family voucher–based donations were facilitated. Each donation precipitated a transplant chain with a mean (SD) length of 2.3 (1.6) downstream kidney transplants, facilitating 573 total transplants. Of those, 111 transplants (19.4%) were performed in highly sensitized recipients. Among 250 voucher donors, the median age was 46 years (range, 19-78 years), and 157 donors (62.8%) were female, 241 (96.4%) were White, and 104 (41.6%) had blood type O. Over a 7-year period, the waiting time for those in the National Kidney Registry exchange pool decreased by more than 3 months. Six vouchers were redeemed, and 3 of those redemptions were among individuals with blood type O. The time from voucher redemption to kidney transplant ranged from 36 to 155 days.

Conclusions and Relevance  In this study, the family voucher program appeared to mitigate a major disincentive to living kidney donation, namely the reluctance to donate a kidney in the present that could be redeemed in the future if needed. The program facilitated kidney donations that may not otherwise have occurred. All 6 of the redeemed vouchers produced timely kidney transplants, indicating the capability of the voucher program."

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I haven't managed to sign a data use agreement with NKR, because Stanford's policies don't allow researchers to cede editorial control of the final paper to the data owners, which NKR's agreement requires.  See earlier post:

Thursday, March 18, 2021

Data use agreements, and university research policies regarding restrictions on publication

Patricia Kravey on non-directed organ donation

From my recent email, a nuanced yet inspiring story from non-directed donor Patricia Kravey.

"I’ve been meaning to write you for five years so it’s time I finally got around to it, but I’ll try to keep it short.

I’d been thinking about being an altruistic for many years without people being able to understand why. When my husband heard your interview on Freakonomics he finally got it and shared the podcast with me.

Your chapter on Kidney Chains has changed my life and the five people who received kidneys in the chain I was a part of. Without the power of knowledge from your book I would not have understood why my hospital was resistant to creating a national chain that went outside their hospital system. From your chapter I called the National Kidney Registry and UNOS to ask how they formed chains, how many people could receive kidneys in their chains and the barriers hospitals encounter in joining their programs. On the phone I was thrilled to speak to Ruthanne Leishman, she was in your book, she was famous!

After learning the cost for hospital to join NKR even though they have lengthy donor chains; I told my hospital, where I was also an employee, that I would only be donating through them if they participated in a chain through UNOS. Despite my request to wait the hospital ran their program and matched me internally. So I had this heavy weight of decision to give to the highly sensitized person my hospital matched me with or to pursue a donor chain. After sleepless nights I came up with what I thought was the perfect solution. I would agree to give to the recipient within the hospital and their mismatched donor would be the person officially enrolled in the UNOS program.

The surgery to my anonymous recipient went smoothly. I cried when the doctors told me he was doing well.

Months later I bumped into my transplant coordinator in the hallway at the hospital and she excitedly told me a news story was being released tonight. The mismatched donor of the person I had given to had completed her surgery and the kidney chain and continued on in the mad rush of 24 hours across the country. The news story was going to be about the hospital’s first national donor chain and the person who started it.

Since my donation wasn’t within the exciting 24 hours my hospital had decided I wasn’t part of the chain. I wasn’t included in the news story or even formally told about it. The story showed my recipient who I hadn’t decided if I was going to meet yet. My colleagues saw the story that night and could tell it was my story that didn’t include me.

Your book helped me understand why the hospital and the media would do that as well.

I did meet my recipient in person later. He was a lovely man. Charming, appreciative and so full of energy. He visited me at my office at the hospital several times and he sent a gift for my baby shower. I felt very lucky and grateful to have met him.

Four years after the transplant he died. Skin cancer got him. His wife told me the doctors had led him to believe that the kidney he’d received from me could be passed on. Of course it couldn’t be since it could contain cancer cells.

I have mixed feelings about being an altruist donor. It wasn’t perfect. It wasn’t the story or the fulfilling experience I had hoped it would be. But it was better and it benefited more people because of you. I hope people tell you everyday that your work has changed lives.

Thank you.

Best regards,

Patricia Kravey (Harvey)

https://komonews.com/news/healthworks/seattle-kidney-chain-changes-8-lives-its-the-gift-of-life

https://blog.swedish.org/swedish-blog/how-donating-a-kidney-gave-me-joy-and-someone-else-his-life-back

(in rereading my interview in Swedish Medical Center's blog, I’m embarrassed that I didn’t cite you!)"

Kidney exchange is fragmented in the U.S.

Market Failure in Kidney Exchange

Nikhil Agarwal, Itai Ashlagi, Eduardo Azevedo, Clayton R. Featherstone, Ömer Karaduman

NBER Working Paper No. 24775
Issued in June 2018

Abstract: "We show that kidney exchange markets suffer from traditional market failures that can be fixed to increase transplants by 25%-55%. First, we document that the market is fragmented and inefficient: most transplants are arranged by hospitals instead of national platforms. Second, we propose a model to show two sources of inefficiency: hospitals do not internalize their patients’ benefits from exchange, and current mechanisms sub-optimally reward hospitals for submitting patients and donors. Third, we estimate a production function and show that individual hospitals operate below efficient scale. Eliminating this inefficiency requires a combined approach using new mechanisms and solving agency problems."

Here's a key sentence:

"The three largest multi-hospital platforms together only account for a minority share of the kidney exchange market. 62% of kidney exchange transplants are within hospital transplants that are not facilitated by the NKR, APD or UNOS. Moreover, over 100 hospitals performed kidney exchanges outside these three platforms during this period."

An 8-person chain in Chicago, with news coverage

A non-directed donor chain at Northwestern, with pictures:
U.S. News Sits In as Surgeons Carry Out an 8-Person Kidney Exchange
"Four people received new leases on life via the transplant 'chain' at Chicago's Northwestern Memorial Hospital."

"Such "paired exchanges," first performed in the U.S. at Rhode Island Hospital in 2000, have taken off in the last seven years or so as a way to shorten what can otherwise be a long wait for a healthy kidney. Some 97,000 people are now on the waiting list maintained by the United Network for Organ Sharing, a nonprofit that manages the federal organ transplant system; the average wait time is generally about three to five years. That's too long for many people: About 12 die each day as they hope for a kidney to turn up. A swap like this one effectively fast-tracks the process. At Northwestern, the period between joining the exchange program and surgery typically varies from about two to six months depending on the difficulty of matching.

"Today, 20 to 30 percent of living donor kidney transplants here are done through the paired exchange program, mostly in four- to eight-person swaps. Each week, clinicians run a computer program to explore potential matches from among the incompatible pairs in the system. "There are actually multiple potential solutions that we can look through," says John Friedewald, a transplant nephrologist and medical director of the kidney transplant program. Northwestern also participates in the UNOS kidney paired donation program, which includes roughly 250 paired donors and candidates across the country. The National Kidney Registry, another nonprofit organization, facilitates hundreds of exchanges a year nationwide. In 2015, the NKR organized the longest swap to date, a 70-person chain involving teams at 26 hospitals.
...
"Condreva "was very hard to find a match for, so this was sort of a needle in the haystack," Friedewald says. But early this summer, when the altruistic donor approached Northwestern and was determined to be an answer for Condreva, that kidney was the first domino that allowed the other matches to be made. U.S. News visited Northwestern Memorial in late June to attend the surgeries – and the celebration days later when the donors and recipients met."

Kidney donation today on behalf of a future recipient

Here's a forthcoming article in Transplantation, interesting for both what it says and who says it.

The authors include prominent transplant professionals at UCLA (which is an important, innovative and productive kidney transplant center), and also the rising-star economist and matching theorist Marek Pycia.  I recall a time when collaborations between economists and transplant professionals was unusual, and so I'm glad to see new collaborations of that sort arise.

The paper itself is about taking future care of young kidney patients who may need a (second or third) kidney donation later in life. The NKR and UCLA are implementing a voucher system that would allow a donor (e.g. the young patient's grandparent, or parent) to donate as a non-directed donor today, on behalf of a specific, current kidney patient, in return for a commitment that best efforts would be made to end some future kidney exchange chain with a chain-ending kidney for the designated patient, when the need arises.


Vouchers for Future Kidney Transplants to Overcome ‘Chronological
Incompatibility’ Between Living Donors and Recipients
Jeffrey L. Veale, M.D., , Alexander M. Capron, Nima Nassiri, Gabriel Danovitch, H. Albin Gritsch, Joseph Del Pizzo, Jim C. Hu, Marek Pycia, Suzanne McGuire, Marian Charlton, and Sandip Kapur,

Transplantation Published Ahead of Print DOI: 10.1097/TP.0000000000001744

Abstract
Background: The waiting list for kidney transplantation is long and growing. The creation of :vouchers" for future kidney transplants enables living donation to occur when optimal for the donor and transplantation to occur later, when and if needed by the recipient.

Methods: The donation of a kidney at a time that is optimal for the donor generates a :voucher‘" that only a specified recipient may redeem later when needed. The voucher provides the recipient with priority in being matched with a living donor from the end of a future transplantation chain. Besides its use in persons of advancing age with a limited window for donation, vouchers remove a disincentive to kidney donation, namely, a reluctance to donate now lest one‘s family member should need a transplant in the future.

Results: We describe the first 3 voucher cases, in which advancing age might otherwise have deprived the donors the opportunity to provide a kidney to a family member. These 3 voucher donations functioned in a nondirected fashion and triggered 25 transplants through kidney paired donation across the United States

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See my earlier post: 

Thursday, August 4, 2016

Dr Jeff Veale in the WSJ on vouchers for living donor kidneys

ABC video about a long kidney chain (old, but well done)

This is about a 2015 chain organized by NKR:
http://abcnews.go.com/Health/donating-kidney-complete-stranger-order-save-loved/story?id=30288400

Update on the OPTN/UNOS kidney paired donation pilot program through October 2015

Here's a brief update on the UNOS KPD pilot program:
Kidney paired donation pilot program: Five years of lifesaving service, OCT 26, 2015 |

The program "has arranged 155 kidney transplants since its beginning on October 27, 2010. Several more transplants are scheduled to take place over the next several weeks."

That reflects a growing rate of transplants through the UNOS program, which has not yet achieved the volume of other programs, and now accounts for just over 4% of the 3,648 "Paired donation" transplants recorded by the OPTN database. (I'm not sure if those data capture all the kidney exchange chains.)  The majority of kidney exchange transplants in the U.S.  are accomplished through the other multi-hospital kidney exchange networks (NKR and APD), and, increasingly, through exchanges conducted internally by active transplant centers.   

1000 kidney exchange transplants by NKR

Here's the announcement: National Kidney Registry Facilitates 1000th Transplant


"BABYLON, NY--(Marketwired - Mar 12, 2014) -  The National Kidney Registry announced the successful completion of their 1,000th paired exchange transplant. The 1,000th transplant, completed today at the University of Cincinnati, is part of a chain of 10 transplants. These transplants are taking place at other centers across the country including, UCSF Medical Center, Cleveland Clinic, Barnes-Jewish Hospital, New York-Presbyterian/Weill Cornell Medical Center, Lahey Clinic, Loyola University Medical Center, University of Minnesota Medical Center, Froedtert Hospital, and VCU Medical Center.

The NKR organized its first exchange transplants just over 6 years ago, in February of 2008, at New York-Presbyterian/Weill Cornell Medical Center. Commenting on the past six years, Dr. Sandi Kapur, Chief of Transplant Surgery and Director of the Kidney and Pancreas Transplant Program at New York-Presbyterian/Weill Cornell Medical Center and the Surgical Director of NKR, said, "These 1,000 transplants would not have been possible without the hard work and dedication of the transplant professionals at the 70 NKR member centers and the many altruistic donors who have given the gift of life to those suffering from kidney failure. Our program at New York-Presbyterian/Weill Cornell has been able to transplant over 100 patients with incompatible donors during this time period including many highly sensitized patients."

Dr. Jeffrey Veale, the Director of the UCLA Exchange Program, remarked, "We have seen the widespread adoption of paired exchange over the past six years which has allowed many patients with incompatible donors to receive a lifesaving transplant. We are thrilled that UCLA has been able to transplant over 100 patients with incompatible donors over the past six years and we look forward to working with the other NKR Member Centers to quickly surpass the 2,000 transplant milestone."

Dr. E. Steve Woodle, Director of the Division of Transplantation, holder of the William Altemeier Chair in Surgery at the University of Cincinnati, and a founder of one of the first multi-center kidney exchange programs in the United States, said, "When we first published the ethical and scientific foundations for kidney exchange programs in 1997, we hoped that someday we would have kidney exchange programs like the NKR. This accomplishment by the NKR exemplifies what dedicated leadership and membership can accomplish with kidney exchange. Our hats are off to those who built the NKR."

The goal of the NKR is to facilitate 1,000 transplants annually by 2020. Above is the history of NKR transplants.

About the National Kidney Registry

National Kidney Registry (www.kidneyregistry.org) is a nonprofit organization with the mission to save and improve the lives of people facing kidney failure by increasing the quality, speed, and number of living donor transplants. "
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Other posts about NKR

WSJ: "I gave away a kidney, would you sell one?"

Dimitri Linde, a non-directed donor who started a kidney exchange chain writes in the WSJ yesterday:

I Gave Away a Kidney. Would You Sell One?

...
"To obviate the kidney shortage, we should heed the recommendation of Nobel Prize-winning economist Gary Becker and others by making it legal to compensate donors. Currently, the National Organ Transplant Act bans the "sale" of any human organs in the U.S. Those who oppose compensation object to its ramifications for donors and society. They argue that the poor will be exploited, and that people should give out of the goodness of their hearts.

But these lofty sentiments ignore the fact that 18 transplant candidates die each day. As the legal scholar Richard Epstein has put it: "Only a bioethicist could prefer a world in which we have 1,000 altruists per annum and over 6,500 excess deaths over one in which we have no altruists and no excess deaths."

Yet absent such policy changes, which have little traction in Washington, right now transplant chains are the best tool to facilitate donations. Chains begin with a would-be recipient identifying a donor—say, a man with polycystic kidney disease and his wife. In most cases, a potential donor doesn't have a compatible blood and tissue type with the intended recipient, so this spousal pair would likely be a poor match. (Incompatibility can marginalize the life span of the transplant, or preclude the body from accepting it at all.)

That's where organizations like the National Kidney Registry, a nonprofit computerized matching service, come in. The NKR and similar nonprofits work with hospitals across the U.S. to create large national exchanges, linking incompatible and poorly compatible pairs to highly compatible counterparts elsewhere. Additionally, by working with living donors, these matching services furnish kidneys that endure, on average, twice as long as equally compatible cadaver transplants.

Through groups like NKR, altruistic donors—people willing to donate to an anonymous person—initiate "donor chains," catalyzing multiple donations. Inspired by reading about a 60-person chain begun by such a donor, I entrusted the NKR to select my recipient. Their software churned up a highly compatible match for me more than a thousand miles away. Concurrent with receiving a kidney, my recipient's incompatible donor gave to a commensurately strong match. A courier delivered this donor's organ to a third hospital in yet another region of the country, completing the exchanges."

Report from the National Kidney Registry

The American Journal of Transplantation has published (early, online) a report detailing some of the successes of the National Kidney Registry with long, non-simultaneous chains:

Chain Transplantation: Initial Experience of a Large Multicenter Program, by
M. L. Melcher, D. B. Leeser, H. A. Gritsch, J. Milner, S. Kapur, S. Busque, J. P. Roberts, S. Katznelsonf, W. Bry, H. Yang, A. Lu, S. Mulgaonkar, G. M. Danovitch, G. Hil, and J. L. Veale.


"The first 54 chains facilitated 272 transplantations between February 14, 2008 and June 29, 2011.
...
"These first 272 transplants were completed in 40 months and were part of 54 chains that averaged 5.0 transplants long.
...
"In the NKR experience many bridge donors remained motivated and donated months after their intended recipients’ transplantation. One bridge donor even donated more than 1-year afterwards.
...
"The longest chain involved 21 recipients and 21 donors.
...
"There were seven broken chains due to bridge donors becoming unavailable. Unlike traditional paired donation where the consequences of a donor ‘backing-out’ are devastating, in chain transplantation, the next recipient does not suffer ‘irreparable harm’ as they have not lost their willing incompatible donor and can participate in a new exchange when the transplants are carried out sequentially."

Terasaki Medical Innovation award

Itai Ashlagi and I received the NKR Terasaki Medical Innovation award Monday evening at the American Transplant Congress meeting in Boston, for our work on kidney exchange algorithms for patient pools with highly sensitized patients.

"The Terasaki Medical Innovation Award will be presented annually to a medical professional who, through their pioneering work, has had a significant impact in advancing paired exchange transplantation and saving the lives of those facing kidney failure. "

Awards are nice for the recipients, but one can't help but be mpressed by the career of the scientist after whom the award is named, UCLA's Dr. Paul Ichiro Terasaki. Dr. Terasaki pioneered the tests used today to determine immunocompatibility, and built a business to make tools to implement those tests widely available.

Born in California in 1929, he and his family were interned with other Japanese-Americans during WWII. Later in life he donated $50 Million to UCLA, which named their Life Sciences building after him.

In short, he has had a storied scientific and American career.

Also receiving an award Monday evening was the non-directed altruistic donor Alexander Berger, about whom I blogged earlier: A kidney donor argues that selling kidneys should be legal, after he published a NY Times op-ed to that effect. (He's a 2011 Stanford philosophy grad, and he apparently worked with Debra Satz, although they disagree about whether kidney sales should be allowed.) Appropriately enough, he's currently working for an organization called Give Well, which works to identify charities that are "cost-effective, underfunded, and outstanding." He gave well himself, and started a nonsimultaneous extended altruistic donor (NEAD) chain of the kind NKR is famous for.

(I discussed the first NEAD chain here, and have posted about them frequently.)

The food was pretty good too.

A long nonsimultaneous extended altruistic donor chain in the NY Times

60 Lives, 30 Kidneys, All Linked

A nice NY Times story, about a nonsimultaneous chain organized by Garet Hil's  National Kidney Registry .

Mike Rees gets a nod for the revolution he began at the  Alliance for Paired Donation  with the first nonsimultaneous chain: Advances in kidney exchange, in the New England Journal of Medicine

Here's why they're important: Nonsimultaneous kidney exchange chains produce more transplants than simultaneous chains

See previous blog posts on kidney exchange chains here.

Update: here an NKR press release that touches on some work that Itai Ashlagi and I are doing with them.

Non-simultaneous kidney chains are getting longer

Mike Rees' revolution in non-simultaneous extended altruistic donor (NEAD) chains continues to grow in importance in kidney exchange. Since the 2009 NEJM paper reporting the first NEAD chain, which accomplished 10 transplants (and therefore required 20 surgeries, ten of them nephrectomies), chains have been getting both more frequent and often longer.

The venerable transplant center at the University of Pittsburgh reports its recent involvement in a long chain:
A UPMC First: Transplant Team Participates In Large Multi-State Kidney Chain Involving 32 Operations and 16 Transplants
"The paired kidney exchange, coordinated by the National Kidney Registry, involved 32 patients and 16 transplants performed at 12 U.S. hospitals over two months. It marked the first time that UPMC participated in a kidney chain."

The National Kidney Registry is one of the relatively nimble networks that, following the New England Program for Kidney Exchange, and Rees' Alliance for Paired Donation, have grown by recruiting sometimes overlapping networks of transplant centers.
Sean Hamill at the Pittsburgh Post Gazette gives the story a competitive angle by contrasting the NKR with the national exchange that is slowly gearing up (emphasis added, on which I'll comment after):

32-person chain nets 16 kidney transplants: 2 national groups in big competition

"This most recent chain started Dec. 17, 2010, and by the time it ended Feb. 11 it involved 16 donors and 16 recipients at 12 transplant centers in nine states from New York to California. Mr. Johnson's transplant and Ms. Dolezal's kidney removal both took place Feb. 10 in Pittsburgh and both of them are doing well.
...
"A national program that could push the number of paired donations from nearly 400 last year nationally to 3,000 or more a year has been the dream for the last half decade. That's significant when 93,000 people are on the national waiting list for kidneys and only about 17,000 a year get transplants

"Last fall, the United Network for Organ Sharing, an organization that oversees the nation's organ and transplant network, finally began its long-awaited pilot program that will attempt to do just that and link all of the eligible patients from the nation's more than 200 transplant centers.

"But Garet Hil, founder and president of the National Kidney Registry in Babylon, N.Y., which organized the 32-person chain, said UNOS's pilot program "is a failure."

"Mr. Hil, who runs a consulting and software development company, sits on the Kidney Paired Donation Pilot working group that has been trying to make the program work.

"I've witnessed a program with a flawed design, working in a bureaucratic way that's not going to get many people transplanted," he said Friday in a phone interview. "The program has been out since October and it's only done two transplants and we've done 60 since then -- including this chain" of which UPMC was a part.
...
"He has a host of criticisms with the pilot program, including that it allows only small chains that would give just two or three people new kidneys at a time, while the National Kidney Registry runs chains, like this recent one, where dozens of people get new kidneys.

"Ken Andreoni, an Ohio State University transplant surgeon who chairs UNOS's kidney committee, has heard Mr. Hil's arguments and concerns before and he believes he's just being too impatient.

"I'm in this for the 50-year- and 100-year-long issues," he said, adding that they will take time to solve.

"He concedes the pilot program is slowed by the bureaucracy of having to follow rigid rules that aim to maximize successful transplants and minimize risk.

"But that's the price you pay when you're creating what is to be a real national program that answers to everyone, unlike Mr. Hil's registry.

"The pilot program has had a difficult time because, first, the patients who have signed on are typically the most difficult patients to match, with significant variables that make them hard to match.

"And while UNOS would love to run long chains like the registry, currently it believes that shorter, two- and three-person-paired chains are safer because they're less complicated, Dr. Andreoni said.

"He doesn't see it as the competition Mr. Hil does.

"In the end, if you get people off the waiting list, that's great," Dr. Andreoni said, "no matter who is doing it."

*******
About the controversy about long versus short chains, the concerns about long chains are based in part on a modeling error, see this earlier post: Nonsimultaneous kidney exchange chains produce more transplants than simultaneous chains

And the issue about having only hard-to-match patients enrolled so far in the national exchange, that is likely to be a problem that will need to be addressed at a fairly fundamental level, because the current incentives make that a tempting strategy for transplant centers. See this earlier post: Kidney exchange when hospitals are the players

Finally, regarding time horizons, I sure hope that in 50 and 100 years we'll have better cures for kidney disease than transplantation. But for the next 10 or 20 it's likely to be the best solution by far for patients with end stage renal disease, and so we'd better keep figuring out how to make the best use of it.

Misc. non-simultaneous kidney exchange chains

Allegheny General part of multistate kidney exchange
Wednesday, April 14, 2010, By Jill Daly, Pittsburgh Post-Gazette
"Twelve donors and 12 recipients with advanced renal disease will be part of the chain when it is completed."

A discussion in the Student BMJ of kidney exchange in England: Would you donate your kidney to a stranger? Donors give a kidney to strangers in paired, pooled, and chain kidney transplants

A big kidney exchange involving four DC area hospitals, organized at Georgetown U. Hospital, including a June 15 video on the Early Show with the crowd of patients and donors.

The National Kidney Registry, a private organization, has generated a report about some of their successful activities in organizing kidney exchanges in partnership with a number of hospitals, including many nonsimultaneous chaings: The National Kidney Registry: transplant chains--beyond paired kidney donation by Veale J, and Hil G., Clinical Transplants. 2009:253-64. [I haven't been able to find the whole article yet: Pub Med lists it as "in process," but here's the abstract:]
"Abstract: The National Kidney Registry (NKR) has facilitated more than 100 transplants at 24 centers in the past 2 years and the numbers are rapidly increasing. The NKR has inherent capability for rapid change as innovations are developed and incorporated in the approach to matching donors and recipients in transplant chains. Kidneys are shipped with geotracking devices utilizing existing OPO procedures whenever patients are willing to accept them. This reduces the need for donor travel and increases the geographic area where matches can be made. Out-of-sequence transplants can be performed to improve logistics. Matching software is designed to facilitate chain transplantation and incorporates metrics that help transplant centers develop strategies to improve the chances that their patients can be transplanted. Daily match runs and close attention to repairing broken chains have been critical to growing the number of transplants that can be facilitated. A number of new innovations are expected to increase the opportunities for patients and their potential living donors."

See a chain of stories on chains here.