The End Kidney Deaths Act (JAMA finally publishes a letter of reply)

 In March, JAMA publishing a rather unconvincing but passionate attack on a modest proposal to incentivize non-directed kidney donors. The editors presumably received many letters in reply (and declined to publish mine*), but have now published one (to which I was alerted by Frank McCormick).

The End Kidney Deaths Act

Elaine Perlman, MA¹; Frederike Ambagtsheer, PhD²; Arthur Matas, MD³

 JAMA

Published Online: July 21, 2025

doi: 10.1001/jama.2025.8240

  Related Articles (original author's reply at this link)

To the Editor The End Kidney Deaths Act (HR 2687) is a data-informed, ethically grounded proposal developed by nondirected kidney donors (individuals who donate kidneys to strangers) to address the persistent shortage of transplantable kidneys. Backed by 38 organizations,¹ the End Kidney Deaths Act will provide a $10 000 annual tax credit for 5 years (totaling $50 000) to individuals who donate a kidney to a stranger. The End Kidney Deaths Act has the potential to increase living kidney donation, save lives, and reduce taxpayer costs.

In their Viewpoint,² Dr Mueller and colleagues argue that the End Kidney Deaths Act risks irreversible harm to organ donation. However, we believe their objections are speculative and lack empirical support, while the urgency of the organ shortage demands action. Nearly 100 000 patients remain on the transplant waiting list, and living donation has stagnated for more than 2 decades. The End Kidney Deaths Act offers a novel, government-regulated model to responsibly compensate donors, ensure donor safety, and help close the widening gap between organ supply and demand.

Mueller and colleagues state that “[p]roviding tax credits to nondirected donors is unlikely to significantly reduce the organ shortage.” However, compensation has increased participation in gamete donation, plasma donation, and surrogacy. Their statement regarding “exploitation of vulnerable donors” overlooks the End Kidney Deaths Act’s regulatory framework, which we believe preserves ethical standards while reducing reliance on illicit markets.

The assertion that countries with compensation see fewer voluntary donations is not applicable. No country has implemented a model like the End Kidney Deaths Act, and, in our opinion, comparisons with unregulated programs abroad are misleading. Mueller and colleagues also warn that paid donors often regret their decision. The majority of respondents in 2009 and 2015³ American Society of Transplantation and American Society of Transplant Surgeons member surveys, and in 4 public surveys, most recently in 2019,⁴ supported pilot programs for donor compensation. A recent National Kidney Donation Organization survey reported that 97.9%⁵ of respondents would still donate under the End Kidney Deaths Act. Historically, 95% of US living kidney donors say they would donate again.

Mueller and colleagues suggest that legal compensation will worsen global exploitation. However, the current prohibition and organ shortage have not prevented unethical practices, they have merely driven them into illicit, underground markets. A transparent US model would set a global ethical precedent, demonstrating how regulated compensation can be ethically implemented. Although other solutions have been proposed by the authors, none have meaningfully addressed the shortage. Maintaining the status quo leaves tens of thousands vulnerable to suffering and dying.

We urge rigorous, empirical engagement with the legislation’s potential rather than reliance on speculative concerns. The End Kidney Deaths Act is a practical, evidence-based policy that could help reduce preventable deaths.

Article Information

Corresponding Author: Elaine Perlman, MA, Coalition to Modify NOTA, (ElainePerlman@modifynota.org).

Published Online: July 21, 2025. doi:10.1001/jama.2025.8240

Conflict of Interest Disclosures: Dr Ambagtsheer reported receiving grants from Dutch Research Council (406.XS.03.075). No other disclosures were reported.

References

1.

Modify NOTA. 38 Organizations supportive of the End Kidney Deaths Act. January 1, 2024. Accessed May 21, 2025. https://www.modifynota.org/new-page-1

2.

Mueller  TF, Matamoros  MA, Danovitch  GM, Nagral  S.  The End Kidney Deaths Act risks irreversible harm to organ donation.   JAMA. 2025;333(19):1663-1664. doi:10.1001/jama.2025.2409
ArticlePubMedGoogle ScholarCrossref

3.

Salomon  DR, Langnas  AN, Reed  AI, Bloom  RD, Magee  JC, Gaston  RS; AST/ASTS Incentives Workshop Group (IWG).  AST/ASTS workshop on increasing organ donation in the United States: creating an “arc of change” from removing disincentives to testing incentives.   Am J Transplant. 2015;15(5):1173-1179. doi:10.1111/ajt.13233PubMedGoogle ScholarCrossref

4.

Elías  JJ, Lacetera  N, Macis  M.  Paying for kidneys? a randomized survey and choice experiment.   Am Econ Rev. 2019;109(8):2855-2888. doi:10.1257/aer.20180568Google ScholarCrossref

5.

Matthews  D. The moral case for paying kidney donors. Vox. Updated September 18, 2024. Accessed May 21, 2025. https://www.vox.com/future-perfect/372412/end-kidney-deaths-act-kidney-donor-tax-credit

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*Earlier:

Friday, April 25, 2025 JAMA declined to publish this letter on kidney donation

 

JAMA declined to publish this letter on kidney donation

 JAMA recently published the following Viewpoint, whose title adequately summarizes its main point:

The End Kidney Deaths Act Risks Irreversible Harm to Organ Donation
by Thomas F. Mueller, MD, PD1; Maria A. Matamoros, MD2; Gabriel M. Danovitch, MD3; Sanjay Nagral, MD, JAMA. March 26, 2025. doi:10.1001/jama.2025.2409

I promptly submitted the letter below, in reply, and received a rejection from the journal yesterday. 

“Irreversible Harm to Organ Donation”? Strong opinions based on weak evidence 

Alvin E. Roth,  Ph.D., Word count: 391
 
 From 2002- 2022, the number of Americans newly diagnosed with kidney failure increased from 99,956 to 131,194 per year (1).  The total number of Americans suffering from kidney failure nearly doubled to over  800,000, with over 500,000 on dialysis (2).   In 2024 there were only 27,759 kidney transplants in the U.S. from both deceased and living donors, so most patients with kidney failure will die without  receiving  a transplant.

Mueller et al.(3)   claim that a proposed experiment involving modest compensation of a limited group of living kidney donors “risks irreversible harm to organ donation.” Their arguments are those also used to argue against compensation of donors of Substances of Human Origin generally (4).   But the case of blood plasma suggests these strong opinions are based on very weak evidence.

Five of the twenty-seven EU nations allow plasma donors to be compensated. Those five are the only EU nations self-sufficient in plasma. The twenty-two nations in which payment of donors is banned must import a significant portion of the plasma and plasma derivatives they need. Much of those imports comes from the U.S, which also has legal, regulated markets in which plasma donors may be paid for donation (5).   Consequently, many lives are saved by American plasma, in the U.S. and around the world.  Paying plasma donors  hasn’t reduced  plasma donation: any reduction in unpaid donation has been more than replaced by paid donors.

The regulation of markets in the U.S. has been strong enough that the catastrophic predictions of black markets, exploitation, and devastation of donors that support the establishment of bans on compensation in many other countries have not come to pass in the U.S.  This provides reasons to doubt the dire forecasts also made about the consequences of a U.S. experiment involving modest payments to kidney donors.
 

Kidney donation is not the same as plasma donation, so effective regulation of compensation for kidney donors would be different. We need to experiment to gather evidence of whether and how to proceed.  Pilot programs such as the tax credits proposed by the End Kidney Deaths Act would provide evidence.  
 

New markets and regulations may need modification as experience accumulates.  If the experiment increases non-directed donations, it could be expanded to include more kinds of kidney donation. And the experiment could be abandoned if generosity to donors turned out to be uncontrollably negative, as opponents predict.

References:

1  Annual Data Report | USRDS, https://usrds-adr.niddk.nih.gov/2024/end-stage-renal-disease/1-incidence-prevalence-patient-characteristics-and-treatment-modalities.

2  The National Forum of ESRD Networks. Quarterly National ESRD Census www.esrdnetworks.org.

3. Mueller TF, Matamoros MA, Danovitch GM, Nagral S. The End Kidney Deaths Act Risks Irreversible Harm to Organ Donation. JAMA. Published online March 26, 2025. doi:10.1001/jama.2025.2409

4  Cuende, Natividad, et al. "Promoting equitable and affordable patient access to safe and effective innovations in donation and transplantation of substances of human origin and derived therapies." Transplantation 109.1 (2025): 36-47. January  https://journals.lww.com/transplantjournal/fulltext/2025/01000/promoting_equitable_and_affordable_patient_access.6.aspx

5  Elias, Julio, Nicola Lacetera, Mario Macis, Axel Ockenfels, and Alvin E. Roth, “Quality and safety for substances of human origins: scientific evidence and the new EU regulations, BMJ Global Health, Volume 9, Issue 4 April, 2024,  https://doi.org/10.1136/bmjgh-2024-015122

The End Kidney Deaths Act is reintroduced to the 119th Congress

 Resolved: lets be generous to nondirected kidney donors

H.R.2687 - To amend the Internal Revenue Code of 1986 to provide a refundable tax credit for non-directed living kidney donations.
119th Congress (2025-2026) |
Sponsor:    Rep. Malliotakis, Nicole [R-NY-11] (Introduced 04/07/2025)
Committees:    House - Ways and Means; Energy and Commerce 

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Earlier

Tuesday, January 21, 2025 The debate over compensating organ donors is heating up

Tuesday, August 13, 2024 End Kidney Deaths Act intoduced in Congress

 

 

Kidneys, compensation, and altruistic activists

 Here's a well written story about kidney donation, and  some of the very interesting people involved in the debate over compensating donors.  It's written by the talented science writer Carrie Arnold, in  Noema magazine (which she described to me as "a pub that has a philosophical bent published by the Berggruen Foundation," when I was among the many people she interviewed for the story). 

 It starts by introducing us to non-directed donors like Elaine Perlman and her son Abie Rohrig (he donated first and she followed). Elaine is now a leader in promoting organ donation and compensation of donors, not least through the End Kidney Deaths Act.   We also meet the indefatigable Frank McCormick, an economist at the forefront of understanding the finances of transplantation (and how much money it saves society and the healthcare system compared to dialysis).

 Here's the story:

How Much Is Your Kidney Worth? To address the deadly organ shortage, some are proposing compensating living kidney donors, creating an ethical dilemma.  By Carrie Arnold , in Noema, February 13, 2025

Ms. Arnold gives me the last word. The very last line of the story concerns the End Kidney Deaths Act:

“This is a proposal that just says donors are really generous,” Roth said, “maybe we can be generous to them in return.”

The debate over compensating organ donors is heating up

  It's a new year, and maybe there will be progress in increasing organ donation.  Here's a video in which Elaine Perlman explains the End Kidney Deaths Act, which might be debated by Congress this year, and would be an attempt to increase living donation by allowing some compensation (in the form of tax credits) for kidney donation.  And there are  a slew of articles in medical journals (of which I sample two) saying that the first and most important rule of organ transplantation is that donors should not be compensated (and that the same goes for other SoHOs (Substances of Human Origin) such as blood plasma. 

 

"Passing the End Kidney Deaths Act isn’t just an ethical decision—it’s a practical solution to one of the most pressing public health challenges in America.
100,000 Americans are counting on us to get the End Kidney Deaths Act to the finish line. The choice is clear and 2025 is our year. Let’s contact Congress now to pass the End Kidney Deaths Act and ensure a future where no one dies while waiting for a kidney. Because saving lives is not only ethical—it’s our responsibility."

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And here are two articles reaffirming their opposition:

Promoting Equitable and Affordable Patient Access to Safe and Effective Innovations in Donation and Transplantation of Substances of Human Origin and Derived Therapies
Cuende, Natividad MD, MPH, PhD1; Tullius, Stefan G. MD, PhD2; Izeta, Ander PhD3; Plattner, Verena PhD4; Börgel, MSc, Martin5; Ciccocioppo, Rachele MD6; Correa-Rocha, Rafael PhD7; Koh, Mickey B. C. MD, PhD8,9; De Angelis, Vincenzo MD10; Gondolesi, Gabriel E. MD, MAAC11; ten Ham, Renske PhD, PharmD12; Porte, Robert J. MD, PhD13; Hernández-Maraver, Dolores MD, PhD14; Hawthorne, Wayne J. MD, PhD15; Sureda, Anna MD, PhD16; Orlando, Giuseppe MD, PhD17; Haraldsson, Börje MD, PhD18; Ascher, Nancy L. MD, PhD19; Dominguez-Gil, Beatriz MD, PhD14; Oniscu, Gabriel C. MBChB, MD20
Author Information
Transplantation 109(1):p 36-47, January 2025. | DOI: 10.1097/TP.0000000000005169

 Note which ethical principle is at the top of the list.

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And this report speaks of global kidney exchange, but not for the poor...

 Expanding Opportunities for Living Donation: Recommendations From the 2023 Santander Summit to Ensure Donor Protections, Informed Decision Making, and Equitable Access, by
Lentine, Krista L. MD, PhD1; Waterman, Amy D. PhD2; Cooper, Matthew MD3; Nagral, Sanjay MS, FACS4; Gardiner, Dale MD5; Spiro, Michael MBBS6; Rela, Mohamed MS, FRCS, DSc7; Danovitch, Gabriel MD8; Watson, Christopher J. E. MD9; Thomson, David MD10; Van Assche, Kristof PhD11; Torres, Martín MD, MS12; Domínguez-Gil, Beatriz MD, PhD13; Delmonico, Francis L. MD14;  On behalf of the Donation Workgroup Collaborators*
Transplantation 109(1):p 22-35, January 2025. | DOI: 10.1097/TP.0000000000005124

 

"International KPE is acceptable if the donor-recipient pairs belong to a similar sociodemographic reality and are properly covered and protected by healthcare systems. GKE that exploits financial inequalities between pairs (or countries) must be prohibited."