The End Kidneys Death Act has growing support

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

Here is a summary of their proposed legislation

The End Kidney Deaths Act Summary

It begins this way:

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

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

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

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

Getting more transplants,, two recent articles

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

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

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

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

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

...

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

##########

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

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

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

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:

 

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 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 

###########

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

 

 

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

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

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

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

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

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

...

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

...

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

...

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

...

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

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

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

...

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

********

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

Friday, February 26, 2016

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

Repugnant transactions: gradual or radical change?

Policy makers and advocates who wish to relax a ban on some presently repugnant transactions may not always be glad to have the support of those who demand more radical change, since those more radical changes may remind people of just what aroused their repugnance in the first place.

Two examples have showed up in my email stream lately, the first having to do with those who support "death with dignity" and would like physicians to be allowed to help people nearing the end of life to die peacefully. The second comes from the debate about whether the ban on compensating kidney donors should be relaxed.

‘Prophylactic’ Suicide
"Perhaps the moment is right for broaching the idea of what we might call prophylactic suicide: the decision of an elderly person to pre-empt the grim reaper and avoid the disabilities of extended life.

Organizations such as Compassion and Choices, and Final Exit, are campaigning for dignified terminations of life for those with incurable diseases. And with some success, since Oregon, Washington, Vermont and Montana have recently established the right to aid-in-dying. What I propose goes a step further, extending the right to people before they face terminal or debilitating illnesses.

With nearly half of people 85 or older suffering from Alzheimer’s disease, concerns about quality of life in old age are reasonable, even if opinions about what to do about the situation vary widely. However sane prophylactic suicide might be, getting assistance is illegal."


And here's a counterpoint to the cautious proposal by Sally Satel that I blogged about yesterday.

The Kidney Crisis
by Richard A. Epstein
Monday, October 27, 2014

"Recently, a distinguished list of academics signed an open letter to President Barack Obama, Health and Human Services Secretary Sylvia Matthews Burwell, Attorney General Eric Holder, and the leaders of Congress. The letter implored the administration to take prompt and effective steps to end the shortage of organs now available for transplants, especially kidneys. Its signatories announced: “We call for the swift initiation of evidence-based research on ways to offer benefits to organ donors in order to expand the availability of transplants.“

I chose not to sign that letter. It was not because I disagreed with its unhappy diagnosis that the chronic shortage of organs available for transplants, especially kidneys, is inexcusable; on that point, the letter was spot on. Rather, I refused to sign because I believe that the letter’s call to action was hopelessly slow in the face of an unending cascade of unnecessary deaths. If heeded, its call will be the latest in a long series of well-intentioned failed attempts to end the government scourge created by the current ban on kidney sales. This ban was implemented by the National Organ Transplantation Act (“NOTA”) of 1984, sponsored by Senator Orrin Hatch and then-Representative Al Gore. NOTA’s central provision makes it illegal to “acquire, receive, or otherwise transfer” an organ to another person for “valuable consideration,” which with minor exceptions blocks both cash and in-kind payments.

To solve the problem of organ shortages, we must begin by repealing NOTA and implementing a free market for organs. The area in which that voluntary market would work best is for kidneys, both live and cadaveric. Kidneys are the most desperately sought organ. Of the close to 125,000 people now waiting on the Organ Procurement and Transplantation Network, (OPTN) transplant list, more than 100,000 are waiting for kidneys, and the number is rising daily. Relative to transplants of pancreas, livers, hearts, lungs, and intestines, kidney transfers are the easiest to execute, with the greatest benefits to the recipients and the transferors alike.

The open letter reports that we are in a losing battle with kidney shortages. On the supply side, the number of live donations is now down to about 5,700 per year from 6,000 per year some five years ago. Most of those transfers come from family members, where the matches may be less than ideal, and the health of the donor less than perfect. Also on the supply side, the number of accidental deaths of young individuals is down, which cuts off, for the best of reasons, the most desirable source of cadaveric kidneys. On the demand side, better healthcare now allows individuals who suffer from diabetes and kidney disease to live long enough so that they will actually need dialysis or other treatment.

The ability to get organ donations from strangers is very small even though the net benefits are enormous. The mortality risk to the donor is in the order of 3 parts in 10,000. The extra life to the recipient of a live kidney is in the order of 15 to 20 years. (That figure is far greater than the gains from a cadaveric kidney, whose condition is likely to be degraded at the time of death, and to deteriorate thereafter in the interval needed to complete transplantation, if consent can be obtained in time from grieving relatives.) The gains to recipients of a live transaction, if monetized, could easily exceed one, even two, million dollars, at a total cost that is below $100,000 per donor, which includes personal discomfort, loss of work time, and family dislocations. But altruism does not work well when donors have to incur uncompensated losses of that size. Unfortunately, the huge potential for gains from trade is blocked by the firm NOTA prohibition against organ sales.

The open letter does not refer to those gains from trade. It in fact criticizes them. “To ensure equality,” it reads, “private transactions between individuals should remain prohibited.” The letter then seeks to accomplish the impossible by endorsing a centralized approach administered by the United Network for Organ Sharing (UNOS). This nonprofit organization was founded in 1984, when the risks of kidney transplants were greater and the waiting lists far shorter than the 4.3 years of today. This is up from 2.8 years only five years ago. If UNOS remains in charge, the waiting times will continue to grow.

On the positive side, the letter proposes a set of possible healthcare experiments that might involve the provision of in-kind compensation to potential donors that could cover life-long health and disability insurance and funereal benefits. These could, in principle, be supplemented by “a pension contribution, tax credit, or charitable contribution.” Unfortunately, the letter frets so much about the downsides of improvident kidney transfers that it accepts a set of procedural limitations that doom the experiment. New experimental programs, doubtless subject to extensive internal oversight, have to meet as-yet unspecified standards on informed consent, psychological tests, and of course long wait periods before the donation can take place.

The simplest objection to this program is that it is too little and too late to dent the shortage. Any government experiment will take years first to debate and then to perform. Thereafter further delays will be incurred in trying to make sense of fragmentary data. Any pilot programs will prove yet again that justice delayed is justice denied, especially for the thousands of individuals who die in the interim.

It’s important to realize that any short-term experimental approach cuts out some indispensable benefits that only open markets can supply. The basic logic of a market is that it allows people to match up with others in order to secure gains from trade, which, as noted above, are huge for potential live kidney transplants. But kidney markets are difficult to organize because real gaps in information plague both sides of the market. After all, kidney transplants take place only once for any live kidney donor, and rarely more than twice for any kidney recipient. In one sense, these markets are even more difficult to crack than real estate markets, which exhibit a similar pattern of low-frequency and high-value transactions.

To navigate these markets, it is therefore critically necessary for third party intermediates to add their reputational bond and transactional skills to assure, as brokers, both buyers and sellers (no more donors, as it were) that the transaction will go as scheduled. And, no, there is no need for the government to supply these intermediates. The market forces that generate brokers for real estate could work here, where customers on both sides of the market enjoy full legal protections against bad performance, "

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

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

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

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

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

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

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

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

x

New U.S. rules proposed for organ donor reimbursements and Organ Procurement Organizations

Here's the press release from HHS.gov:
Trump Administration Proposes New Rules to Increase Accountability and Availability of the Organ Supply  December 17, 2019

"The U.S. Department of Health and Human Services (HHS) today took major steps to increase the availability of organs for the 113,000 Americans on waitlists for lifesaving organ transplants – 20 of whom die each day. As directed by President Trump in his July 10 Executive Order on Advancing American Kidney Health, the Centers for Medicare & Medicaid Services (CMS) is issuing a proposed rule to change the way organ procurement organizations (OPOs) are held accountable for their performance, and the Health Resources and Services Administration (HRSA) is issuing a proposed rule to remove financial barriers to living organ donation.
...
"Removing Financial Disincentives to Living Organ Donation

The President’s Executive Order on Advancing American Kidney Health emphasized that supporting living organ donors can help address the current demand for kidney transplants. HRSA’s proposed rule would expand the scope of reimbursable expenses for living donors to include lost wages, and childcare and eldercare expenses for those donors who lack other forms of financial support. This proposal could increase the number of transplant recipients receiving a better quality organ in a shorter time period from living donors. In general, recipients of kidney transplants from living organ donors have better clinical outcomes than those who continue on dialysis or those who receive a deceased donor kidney transplant. HRSA also is reviewing a notice that would increase the income threshold for living donors eligible for reimbursements.

"Organ Procurement Organization (OPO) Conditions for Coverage Proposed Rule

OPO act as a link between organ donors and organ recipients, procuring organs from hospitals and delivering them to transplant centers. Federal law tasks CMS with conducting inspections (“surveys”) of OPOs and certifying them for participation in Medicare based on whether they meet Medicare’s Conditions for Coverage – which are basic quality and safety regulations – including outcomes and process requirements.

OPOs’ performance is currently assessed through self-reported data based on measures that were last overhauled in 2006. Today, CMS is proposing much needed changes to hold OPOs accountable and incentivize them to actively collect donated organs and improve transplantation rates in their donation service area (DSA).

CMS estimates that if all OPOs were to meet both the donation and transplantation rate measures, the number of annual transplants would increase from about 32,000 to 37,000 by 2026, for a total of almost 15,000 additional transplants in that time.

The proposed rule would improve the current measures by using objective and reliable data, incentivize OPOs to ensure all viable organs are transplanted, and hold OPOs to greater oversight while driving higher OPO performance. To better serve organ transplant recipients and the many people waiting for a transplant, CMS is proposing:

• Donation rate measure: The donation rate would be the number of actual deceased donors as a percentage of the donor potential, which would be defined as total inpatient deaths in the DSA among patients 75 years of age or younger with any cause of death that would not preclude a potential donor from donating an organ.
• Transplantation rate measure: The organ transplantation rate would be the number of organs transplanted as a percentage of the donor potential, which would be defined as total inpatient deaths in the DSA among patients 75 years of age or younger with any cause of death that would not preclude a potential donor from donating an organ.
• Top 25 percent benchmark: CMS is proposing that all OPOs meet the donation and transplantation rates of the current top 25 percent of OPOs, which would be made public.
• 12-month reviews: At the end of each re-certification cycle (every four years), an OPO would have to meet the CMS requirements for both the donation rate and transplantation rate measures. CMS is proposing to review OPO performance every 12 months throughout the four year re-certification cycle to more quickly identify OPOs that need improvement and ensure fewer viable organs are wasted and more timely transplants occur.

Most of the proposed changes would not take effect until 2022. "

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

Here are the particular announcements:

Notice of Proposed Rulemaking (NPRM) to amend the regulations implementing the National Organ Transplant Act of 1984 (NOTA)

Fact Sheet | December 2019

and

Organ Procurement Organization (OPO) Conditions for Coverage Proposed Rule: Revisions to Outcome Measures for OPOs  Dec 17, 2019 

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

Earlier post:

Tuesday, July 16, 2019

President Trump's Executive Order on kidney care

Notice of Proposed Rulemaking (NPRM) to amend the regulations implementing the National Organ Transplant Act of 1984 (NOTA)Fact Sheet | December 2019

Notice of Proposed Rulemaking (NPRM) to amend the regulations implementing the National Organ Transplant Act of 1984 (NOTA)Fact Sheet | December 2019