The End Kidney Deaths Act with Elaine Perlman

My guest today is Elaine Perlman, an altruistic kidney donor, President of the Coalition to Modify NOTA, and Executive Director of Waitlist Zero. She is leading campaigns to pass the End Kidney Deaths Act (which is the subject of our discussion today) and the Honor Our Living Donors Act.

As a bit of background, the End Kidney Deaths Act (H.R. 2687/ EKDA) is a ten year pilot program that would 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 would go to those who have been waiting longest on the kidney waitlist. You can read the full text of the End Kidney Deaths Act from the link in the show notes, along with other relevant sources that we discuss during today’s podcast.

Show Notes

About Elaine Perlman

About Kim Krawiec

About Denise Azadeh

End Kidney Deaths Act legislation

JAMA opposition article

Our JAMA response

Their JAMA reply

Good Morning America segment, Elaine’s son meeting his recipient (9 minutes)

Video about ethics and the End Kidney Deaths Act (3 minutes)

Video "Why Donate our Kidney to a Stranger (20 minutes)

Transcript

Elaine Perlman: A hundred thousand Americans died in the last decade while waiting for a kidney.

We have not solved this crisis for 40 years. And we have a choice, right? We can save the next a hundred thousand Americans who will definitely die without this legislation with the passage of the End Kidney Deaths Act.

Or we can dig their graves, right?

They don't need to die. And 100,000 people is as many people as fit in the largest football stadiums and just, you know, picture their friends and family grieving. It doesn't have to be this way.

Kim Krawiec: Hey. Hey everybody. Welcome to the Taboo Traits podc,

a show about stuff we aren't supposed to sell but do anyway. I'm your host, Kim Kravik.

My guest today is Elaine Perlman, an altruistic kidney donor, president of the Coalition to Modify Nota and the executive director of Waitlist Zero.

She is leading campaigns to pass the In Kidney Deaths act,

which is the subject of our discussion today,

and the Honor Our Living Donors Act.

As a bit of background, the In Kidney Deaths ACT is a 10 year pilot program that would provide a refundable tax credit of $10,000 each year for five years.

So $50,000 total to living kidney donors who donate a kidney to a stranger,

which would go to those who have been waiting longest on the kidney wait list. You can read the full text of the In Kidney Deaths act from the link in the show notes along with other relevant sources that we discuss during today's podcast.

Denise, why don't we start by having you introduce yourself to our listeners?

Denise Azadeh: Absolutely. I'm Denise. I'm a 3L here at UVA Law and I will be your host for today's podcast.

Kim Krawiec: Denise, you specifically chose this episode to be a host tour.

Can you tell us a little bit about why you wanted to be involved in this episode or in this topic?

Denise Azadeh: Yeah, so I've always been interested in altruistic donation in its many forms. When I was little, my mom would take me to donate her blood and I've been donating blood ever since high school.

I'm on the stem cell donation registry and have been for many years, although I've never been called to donate.

And ever since I got my license, I have been registered as an organ donor. So I'm very familiar with the idea of altruistic donation and I think it's a really interesting topic.

So I was really excited when this came up and I'd love to delve into it more.

Kim Krawiec: So what is it then,

given your pretty extensive background with being at least contemplating altruistic donation and in some Aspects participating in it. What is it that you hope to talk to Elaine about or learn from Elaine today?

Denise Azadeh: I'm really interested in hearing about what Elaine and the coalition discussed and what kind of moral quandaries they grappled with when debating the End Kidney Deaths Act.

Having,

you know, read about the topic and done some research in preparation for today's podcast, both the support and the criticisms of it,

I came away with the personal belief that I think it's ultimately worth it to incentivize donation if it could save the lives of tens or even a hundred thousand people who are actively dying right now.

But that being said, I did personally grapple with some of the moral issues associated with monetarily incentivizing kidney donation. So I'm excited to hear about how someone much more familiar with the topic than myself, and especially someone involved in this legislation, how they've thought through those issues.

Kim Krawiec: Are there any specific sort of of these moral issues or even just, I don't know, strategic issues, maybe? That's the word. Or not the word. Right. There's some implementation things that we hope to talk to her about.

Are there any specific issues associated either with the moral aspects or the implementation aspects or both that you want to raise with her?

Denise Azadeh: Yeah, I think we have a lot of really great questions for Elaine regarding both the moral and implementation aspect of the End Kidney Deaths act, which I'm very excited about.

But the biggest moral issue for me that I'm hoping to discuss with her is the concern that adding a financial incentive to organ donation might be unduly coercive.

Um,

I personally have been yo yoing between feeling like there's certainly a coercive element to adding financial incentives,

but also worrying that, you know, if we bar financial incentives and bar the End Kidney Deaths act just because of that worry, then, you know, is that paternalistic? And does that potentially remove personal bodily autonomy from individuals who'd be willing to donate for compensation?

Um,

it's just something I've been thinking about. And so that's the one topic that I'm hoping we can really touch on with Elaine because she's our expert here today.

Kim Krawiec: Great. Yeah, I'm sure that that's going to be one of the topics of conversation. I mean, one of the things that I did mention to Elaine is that when we did some role playing in class and we pretended that we were representatives or Congress members, the In Kidney Deaths act passed in our class with a majority vote.

So I have a feeling that you guys are more open to her suggestion, which is not to say all of you are, and it's not to say that people don't have concerns or objections.

But I think you guys were more open to the idea than. Than what might be the norm. Okay, let's join the.

Okay, so I thought that you and I could begin, Elaine, by just.

Both you and your son are altruistic kidney donors. And I wondered if we could get you to talk a little bit about that experience and also whether that experience has influenced your work in the Coalition to Modify NOTA and the in Kidney Deaths Act.

Elaine Perlman: So, yes, I donated my kidney to a stranger,

um, in 2020 six months after my son, at age 19, donated his kidney to a stranger. And I think it's kind of poetic because usually it's, you know, younger people following in the footsteps of older people.

And I think it's a. It's an honor to follow in the footsteps of. Of my son.

And at the time, I was a professor and program director at Columbia University.

I've been an educator for 33 years. I taught elementary school, middle school, and high school for most of my life.

And then I donated my kidney. I became a mentor for those who want to donate kidneys. And I kind of just went back to work.

And then during COVID I realized that people need kidneys, and I already gave mine away. So I started to look into the kidney shortage, and I recognized that it's a solvable problem, and I love solvable problems.

So I resigned from my position and began advocating to end the kidney shortage.

Kim Krawiec: Thank you.

Well, okay. So I think that is a good introduction to sort of your. How you came to this issue. I am now gonna turn this over to Denise, who is my co host for today, and she's going to run the conversation mostly from here.

And I may interject at various points with follow ups, but they. You're in good hands.

Elaine Perlman: Thank you.

Denise Azadeh: Thank you, Elaine, for being here today. It is so nice to be talking to you. And I'd like to start us off with a question that I think a lot of us had heading up to today, which is I was wondering if you could expand a little bit on the thought process behind how the coalition proposed the refundable tax credit in the n Kidney Death act and what methodology or conversation went into deciding on what that credit would

be and the fact that it would be a refundable tax credit. And also, personally, I was kind of curious,

what is the advantage of a set credit rather than a variable credit that might account for need? So, for example, providing a higher credit for donors who could donate to particularly difficult to match patients.

Elaine Perlman: Good question. Thank you so much. Um, the founding team was comprised of three non directed donors and myself.

Non directed donors are people who donate kidneys to strangers. About 6,000 people donate kidneys annually, and about 400 people annually donate kidneys to strangers. So four of us came together and there was just a lot of discussion for several months over how much the tax credit should be,

if it should be a tax credit at all,

how should it be a pilot program or not,

who should receive the tax credit. And we all wanted all living organ donors to receive the tax credit. That was something we could all agree on, but the strategy really was based on following the lead of physicians.

So it's important to know that there were two surveys of physicians, one in 2009,

one 2015.

And these are transplant physicians. And these surveys were run by two organizations, the American Society of Transplantation and the American Society of Transplant Surgeons.

And the majority stated in these two surveys that they wanted a pilot program for donor compensation. So we thought, let's do a pilot program beginning with a small pool of people, those who donate kidneys to strangers.

We'll make it a 10 year pilot because we thought that's enough time to prove that this works well. We also wanted to fulfill the desire of the doctors and get them on our side.

And we wanted something that'd be politically viable.

And the plan was, let's provide evidence that donor compensation works really well,

and then we'll advocate for all living organ donors of both kidneys and livers to be able to receive the tax credit. Now, there are people who refuse to support us because they, because they want all donors to receive the tax credit right up front.

And that's frustrating because it's hard to explain to convince them that this is a process and that we need to start small and then go large. You know, you can't jump from the first floor to the hundredth floor.

And certainly when you're trying to get legislation passed on the federal level, you need to have something that's politically viable.

And so that's where some of the thought process came in in terms of what we should do and then the amount of how much should be offered. That was based on two different surveys and studies that were conducted in the Journal of the American Medical association in 2016 and another one by Johns Hopkins in 2019.

And in both of those cases, they were asking people, would you donate a kidney for a $50,000amount?

And it just seemed to be sort of a goldilocks sweet spot. There are people who believe that it's way too low and that it's really should be far higher, something like seventy or a hundred thousand.

But nobody has said it's too high so far.

That's interesting in itself because $50,000 is really a tax free salary of an average American. So I think it's pretty high. But you know, it's really based on people's attitudes about money if they think it's too high amount or not.

And we decided that because every time somebody donates a kidney, the taxpayer saves over $500,000.

So we believe that the funds for the donor should come from the place where the money's saved, which is the federal treasury.

Only half of Americans earn enough to pay federal tax. And so for those who do not pay federal tax, they would be receiving a check of $10,000 a year for five years.

That tax credits were established to help Americans and encourage Americans to engage in pro social behavior like buying houses or having children.

But it's important to know, and this is fascinating, that they don't always fulfill that purpose. Sometimes tax credits are offered or not. Sometimes they are offered for those who buy racehorses or yachts.

I mean, it's hard to believe, but it's true.

So they are also offered for luxury items, but it makes the NKV desk act even more reasonable. You know, if we substitute luxury hobbies, we should also provide fair compensation for people who are saving lives and reducing taxes.

About 85% of those on dialysis are on Medicare. So Medicare is really. We spend about over 50 billion annually on dialysis treatment for about a half million Americans in terms of providing a different amount for those who are giving maybe to a higher need patient or uneven amounts of compensation.

It's important to know that the definition of exploitation is not paying somebody for a valuable good or paying people different amounts for the same good. And so that's why it was important for us that everyone gets the same tax credit because everyone is putting in the same amount of work.

So in countries that compensate kidney donors, you know, having the uneven amount has, has made it a much more exploitative system.

Kim Krawiec: I just wanted to clarify for listeners, Elaine, that that's the refundable portion. What that means then is that people who don't have a tax obligation or have a tax obligation lower than the credit would get a refund check.

Basically.

Elaine Perlman: Yes, exactly.

Denise Azadeh: Thank you so much for explaining, Elaine. And I'm going to turn it over to Reid so we can hear from him.

Speaker D: Hi Elaine, this is Reid.

As part of our prep for this session, we watched your video, Is it ethical to compensate kidney donors?

And there you mentioned that high income people are more likely on average to donate a kidney.

Are there any other demographics common to the average donor, such as region, education or race?

And do you expect those demographics to shift if the End Kidney Deaths act is passed?

Elaine Perlman: Yeah. Well, so let's start out with something that's kind of a shocker, and that is that of a hundred willing people who are willing to donate kidneys,

of a hundred, only two people actually donate 2%.

And that's because you need to be in top mental or physical health in order to get approved. And so as a result, living kidney donors live longer than the general population, not because of the kidney donation, but because they are a very selective group of Americans.

And it's important to know that health, and this is not a shocker either, that health is correlated with income. So wealthier people are more likely to be healthier people. And that's just for a lot of different reasons, which I'm sure you can figure out.

But.

So the wealthier people are more likely to qualify for donations. So I'll give you a quick example. I've become close with a family. They're, they're the Collins family.

They're a gold star family. And their son was killed. He was an active duty soldier. He was killed in Iraq. And they have a surviving child. Her name is Joanna.

And her kidneys have failed. 32 people have stepped forward to donate to her, but none were healthy enough. So it's super hard to qualify.

Now Joanna has registered herself in multiple transplant centers. And today I was in touch with them. They're giving out cards pleading for a donor in Texas. Today they live in Florida.

Right. So imagine if we had people begging for chemotherapy like we are forcing people to beg for a kidney. Now your question is, you know, what is the demographic group of non directed donors in the US they are a small but very essential group.

As I said earlier, about 400 a year. They're mostly white Americans who are middle to upper income, highly educated.

These are the people who can afford the time off and the costs that come with donation. They're on average in their 40s.

Studies have said they're motivated, they have a strong motivation to help strangers and they can do things like start kidney chains or be a miracle match for a hard to match person from around the country.

Keep in mind, if you have kidney failure, there's a very good chance that your friends and family are also not in Top health for a variety of reasons.

Oftentimes family members are not able to come forward to donate. So the people who are giving to strangers skew toward people with privilege. And the Nkidney desac will make this life saving opportunity much more.

We'll be able to grow it into a much more diverse and representative group of Americans.

Denise Azadeh: Thank you for that, Elaine. And now I'm going to turn the question over to Rachel Duffy.

Elaine Perlman: Hi Elaine.

So I wanted to follow up on Reid's question.

I was wondering, if donor demographics were to shift due to your proposed tax credit,

so lower income donors might become maybe the dominant, dominant demographic group,

would you recalibrate or change the incentive in some way?

Or have you thought about adding additional protections to ensure that donors aren't unduly induced to donate because of their financial need?

And I was also wondering, how would.

Kim Krawiec: You assess if somebody is financially vulnerable in that way?

Elaine Perlman: Good question. Thank you. So low income individuals will be more likely to step forward once the End Kidney disag passes. And I consider that to be a very good thing because low income people are about three times more likely to die from kidney failure in comparison with high income people.

And donors are needed from all income levels and backgrounds because we have 90,000 people on the kidney wait list right now and half will die unless the end kidney death cycle passes.

So the more the merrier. We just need to save the lives of those who are really dying from preventable deaths.

As I stated earlier, non directed donation is more challenging for low income people.

They're less likely to pass screening exams because as I said, health is correlated with income. This will be true after the End Kidney Deaths act passes. Though I do have a dream that the End Kidney Death act will spark a revolution in America of people wanting to become healthy enough to be kidney donors.

Um, and remember that the first payment of $10,000 will only be received one year after the donation and then for the following four years. So anyone in immediate financial distress would not get relief from the tax credit.

And, and but I do want to mention one thing and that is low income donors are getting their costs and lost wages reimbursed through government and private programs right now.

So it is something that is very much harder for a low income person to do right now,

but it is very possible because in real time you can get a credit card from the government that will pay for your costs and lost wages as you conduct the donation process.

So I have heard this concern about low income people donating and for those people who have that concern I would ask, would you be satisfied if low income people were banned from receiving the tax credit?

So far, no one wants low income people to be banned.

Do you believe a low income person has the autonomy to decide,

um, to share an organ that they don't need with a dying person? Should they have the right to do so? Absolutely. Now the end Kidney Desk act will make it easier for people to say yes to saving the life of a stranger.

Um, an example is my friend Lucy. Um, she waited seven years until she was in a place where her, her finances were stable enough for her to donate a kidney to a stranger.

So it, it is something that is really tough to do as low income person.

And,

and also I just want to mention a little secondary benefit to having the tax credit. And that is if you go to your friends and family and say, I want to donate my kidney to a stranger.

Their reactions are sometimes supportive, but more often than not kind of horrified. I mean, in my case, my mom and my three siblings either shouted at me or, or, or wouldn't talk to me because they were so angry about my decision.

And so having the tax credit I think will make it easier for everyone to understand why you're doing it and make it easier to say yes to donation. But it's super important to understand that because low income people suffer and die,

they're the people who are primarily suffering and dying from kidney failure.

They are the ones who will have their lives saved by low income people.

Half of dialysis patients earn less than $25,000 annually.

Most are in poverty, many are on disability.

And so the majority that the kidney donation is called the disease of poverty in the United States.

So this credit will definitely help people in the low income brackets disproportionately.

And it's also important to know that the tax credit is not assignable. You can't borrow against it, so you can't use it as a quick cash solution. But the main thing I want to share with you is that everybody currently gets an independent living donor advocate that has the authority to pause or stop an evaluation if there are red flags about someone's financial situation.

And so that protection will remain in place. And so I don't believe that anything additional is needed. We have protections in place for low income donors for their finances as they are donating.

I said with the credit card they have the independent living donor advocate. And so I don't foresee that there will be any challenges to it, but rather just an ability for more people of all income levels to come forward and Save the lives of those who will definitely die.

Denise Azadeh: Elaine, I really appreciate the perspective you're bringing here. I think you're teaching us a lot about a topic that we really didn't know and offering some great insight.

And on that note, I'm going to turn it over to Bradley now to ask a little bit about critics responses right now and particularly thoughts about altruism and how this might affect that.

Speaker D: Thanks Denise. And hi Elaine, it's so nice to meet you today.

So like Denise said,

when we were doing some preparation reading, we saw that critics of the in Kidney Deaths act,

they argued that the proposed 10 year trial compensated donation would fundamentally change the ethical framework of the law, which could end up being irreversible.

So as of now, we know that the law is based on altruism, as you've said.

Uh, so kind of potentially a two part question.

Do you think that your bill would actually reduce the altruistic nature of kidney donation? And even if it did, would you consider that to be a bad thing considering that lives are being saved?

Elaine Perlman: Yeah. I mean this word, altruism,

my friend Sally Satel wrote this book When Altruism is Not Enough. Right. Altruism is defined as the selfless concern for others. And that sounds really good. But solely relying on this has resulted in and 47,000 preventable deaths annually due to the kidney shortage.

So we do have 90,000 people on the wait list, but many people who would qualify and benefit from a kidney transplant never even get to the wait list.

I have a friend in Pittsburgh, she was told by her transplant center, you need to raise $25,000 in order to get onto the wait list.

I was told by another friend who lives in the San Francisco area, you need to wait five years on dialysis before we will wait list you. Because in California the waitlist is 10 years long.

When keep in mind by year five of dialysis only, only 40% of people are still alive. 60% have passed away. So a five year wait to get on the wait list is, is a death, is really a death sentence.

So now I want us to think about this in a totally different way in terms of altruism. Right.

We used to have a volunteer army, but we didn't get enough people volunteering to be soldiers. And so then we started to draft soldiers. And that was just incredibly un popular.

And so the idea came up, well, let's start paying soldiers. And opponents shouted, well, then we'll have uncaring mercenaries. We don't want an army of just paid soldiers. Now we did Begin to pay soldiers.

And did this happen that we no longer honor soldiers, that, that they become these sort of heartless mercenaries? No, soldiers are still honored for stepping forward to protect us. You know, when you're boarding a flight, soldiers get to go on first because, because they are honored because of their altruism,

that they are willing to selflessly defend and protect us.

Compensated donors will continue to be honored just like non compensated kidney donors and will. And so I just think it'll be a beautiful thing because this will lead us to live in a country where no one dies waiting for a kidney transplant.

Now,

a third of people who donate kidneys to their loved ones have stated that they felt pressured to donate. So, um, you know, people talk a lot about coercion and I would say, you know, if your mom is dying,

if someone's mom is dying,

you would feel pressure to save her life and give her your kidneys so that she could survive and thrive, right? So the people who are donating to loved ones can feel this kind of pressure.

They're also incentivized by love. Right now, non directed donors, those who give kidneys to strangers, they at this time do not feel pressure, right, that you're, you're doing this of your own free will.

Now will compensation form,

create a, a form of pressure? Now we need to ask people like, like soldiers or firefighters or surgeons, people who save the lives of strangers or, or teachers even, who are altruistic and selflessly devoting themselves to the growth of young people, do they feel pressure by compensation or do they feel rewarded because they've done hard work?

And I can testify kidney donation is hard work. It is time consuming, painful and stressful work. And I believe that if we want to save the lives of people, you know,

we need to provide the compensation needed. We compensate plasma donors. It's our tenth biggest export. We provide plasma for ten third, two thirds of the globe. And we are saving lives with that compensation because without plasma,

medications couldn't be made and people would pass away from preventable deaths. 100,000Americans died in the last decade while waiting for a kidney.

We have not solved this crisis for 40 years. And we have a choice, right? We can save the next a hundred thousand Americans who will definitely die without this legislation with the passage of the N.

Kidney Deaths Act. Or we can dig their graves, right?

They don't need to die. And a hundred thousand people is as many people as fit in the largest football stadiums and just, you know, picture their friends and family grieving.

It doesn't have to be this way. We can solve this problem. We can uphold altruism.

And we can.

And for those, those I often think about, those who are opposed to the Encaditas act, for them, you know, compensating a donor is more repulsive than someone dying from a preventable death.

So,

and so I think it's just very important that we, we change the system and we live in a country where no one dies while waiting for either a liver or a kidney.

That is the dream, that is the goal, and it's very, very reachable while maintaining altruism. So thanks for the question.

Denise Azadeh: Your passion is so inspiring. Elaine, we're going to turn it over to Cindy, who I think follows up a little bit on Bradley's question.

Elaine Perlman: Hi, Elaine, thank you so much for being here. I did want to follow up on Bradley's point.

I've seen that, or we've read in class about critics pointing to historic examples where payments to living donors led to a substantial decrease or even destroyed voluntary unpaid donation,

and that includes deceased donation.

And given that deceased organ donation is a critical component of organ supply,

what specific provisions or safeguards within the EKDA's framework are designed to prevent that negative impact on the rates of deceased organ donation in the U.S.

yeah, very important question.

So there are about 21,000 deceased kidney donations in the past year and about 6,000,

a little bit more than 6,000 living donations. Just to give you a perspective of the numbers. Now,

this question can't be answered without including the recent news. I don't know if you've been following it. I mean, for me, it's all kidneys, all the time. It's all I think about.

But in the past couple of months, journalists at the New York Times have revealed that the deceased donation system has a very ugly and abusive side. And so this is my perspective on it.

I haven't read this, but this is what I've pieced together.

That is that in 2019 and 2020, the government demanded higher numbers of deceased donations from the organ procurement organizations. And this pressure has had an unintended consequence. So the number of people declared ready for organ donation due to circulatory death and not brain death has tripled.

Right. So there.

So in the case of circulatory death,

it's been found that about 30 people who are still alive there was an attempt to remove their organs from them.

So there's this news of this abuse has led to so far about 30,000 people removing themselves from the donor roles. Now, I've heard from lots of people over the years who said to me, you know, will they keep, will they not keep me alive because they want my organs?

Do they just kill people on the operating table just to get their organs? And I would always say these are urban myths. There's no reality to it. But unfortunately it turns out there is some reality to it.

And so you can imagine the trust in the organ procurement system has greatly declined. And it's also an important fact to know that of a thousand people who are registered as deceased donors, only three actually become deceased donors.

You have to die in a very special way. I don't want to go into details, but it is rare, even if you are registered as deceased donor, to actually be a deceased donor.

Now, it's true that in some countries poorly designed systems have undermined voluntary donation,

but the Unkidney Deaths act is totally fundamentally different.

This is only, as I said, applying initially to non directed donation, people who step forward,

as I said, to donate kidneys to strangers. And this does not overlap with deceased donation, where families are asked to donate after a loved one's death. I don't know if you're aware of this, but even if you're registered as a deceased donor, your family can override that after you're gone.

And so it is something that these are two sort of two different lanes, right?

The bill, our bill has rigorous, will have rigorous federal oversight from both HRSA and the optn,

that is the Human,

the government's body of health protection, as well as the one that monitors the deceased donation program and living donation program. If they see trends in real time, that there's been a negative impact on deceased donation, and this is actually a program that is in any way harmful, they will have the data to show it and they will have the authority to intervene immediately.

But, you know, it's important to know that deceased donation and living donation operate in highly structured, regulated systems. These are separate pathways.

And so we will just in fact reduce the death toll entirely and I think rebuild some confidence in the transplant system overall,

which is greatly in need of improving public trust due to this really horrendous and terrifying news about deceased donation.

And I just also want to mention that I was just at the World Transplant Congress and I did speak with one doctor who thinks that it's exaggerated these reports of people being alive and having attempts at procuring their organs.

He believed that it's not true at all. I actually don't know what to believe, but I do know that it's a fact that people are that we are harming the deceased donation system through the breaking of trust.

And one last thing I want to share with you, and that is that when you compare a deceased donor kidney to a living donor kidney, the living kidney lasts two times as long.

I joke around that it's a two for one special,

that it really is a superior organ and that the more living donations we get,

the better the health of the recipients will be.

Kim Krawiec: Elaine, I just want to follow up on Cindy's question.

What are they referring to Iran in when they say that the deceased donation collapsed and I mean, that's the only country that really has a system of payments to donors.

Is that what they're referring to?

Elaine Perlman: So there are three countries that compensate donors.

Saudi Arabia, Israel and Iran. There is no wait list in Iran. And in fact, I've heard of Iranian Americans going over to get kidneys in Iran. Now with Iran,

they provide, the government provides a very small stipend to the donor. And, but it's a negotiated price between donor and recipient. And so that's not a very good system. But they really don't have much of a deceased donation program in Israel.

They have the most living donors in the world in percentage.

And so in their case, they've never had a very big deceased donation program. I think that they are. And then in Saudi, you can't really get numbers that I've seen, but I think they are referring to Iran.

But because I, I just want to.

Kim Krawiec: Say I don't actually consider, I mean, most people don't consider the Israeli program to be payments to donors, although it's a very generous program.

Right. It's not in the form of, of monetary payments. It's recuperation facilities and time off work. And, you know, it's, it's, it's in some ways a more exaggerated version of the types of benefits that other countries provide.

And then the priority on the waitlist system is a little bit different, but I guess I don't include them in the category of countries that are making actual monetary payments to donors.

And I don't think most people do either. So that's why I was wondering if they're just talking about Iran or if we're talking about other countries that fit this pattern.

Elaine Perlman: They are talking about Iran and as I said, they're the only country without a wait list at all. So I don't think it's something to be feared that, you know, that they, that they've knocked out the deceased donation system in the case in Israel is that you get 40 days of lost wages,

whether or not you need them.

And so, you know, if you get, if you're a high earner, you're going to get more than a low earner,

so that in that way they're compensating because you don't need 40 days off work after donating. You know that, that's why it's compensation, but not on a broad scale.

Kim Krawiec: Yeah, I, we, we have spent some time talking in class about what, what it means to compensate. And I'm sure that we will continue that theme throughout the semester since people get very worked up about the terminology, Elaine, as you already know.

Elaine Perlman: I do know. Yeah.

Denise Azadeh: Well, thank you so much for the explanation, Elaine.

And you mentioned earlier the topic of people donating to relatives and issues they might have to debate with that. So I'm going to turn it over to Mason to ask about that.

Yeah.

Speaker D: So some critics of the EKDA have voiced concerns about the disparity between these new incentivized non directed donors and uncompensated directed donors. As I understand this criticism,

Mueller and his team are concerned that there's an inherent moral issue in that potential donors will have to choose between donating to mom or a loved one or a relative for free or donating to a stranger for compensation.

Even taking into account these familiar pressures you've mentioned in response to Bradley's question about altruism,

do you share the concern that directed donors must now perform some sort of valuation analysis between their loved one's life and $50,000 cash? Why or why not?

Elaine Perlman: Yeah, I don't share that concern that Mueller has. And I actually got a chance to speak with Mueller and he,

yeah,

I have no concern about this whatsoever. So directed donation and non directed donation are fundamentally different. You know, if you're donating a kidney to Moment or a child or a sibling, the motivation, as I said earlier, is love and your relationship with them.

You want to see them survive and thrive.

And so love is the incentive. And that decision will not be altered. Whether or not there's a separate program for people who donate kidneys to strangers,

what the N Kidney Desk act does is it creates a pathway for people who aren't personally connected to step forward and save the lives of those who've been waiting the longest.

And there's absolutely no evidence that a parent would pause and weigh a tax credit against their child's life.

What the evidence shows is that 95% of donors, whether directed or non directed, would do it again because it's so meaningful to save a life. You know, I Feel like it's like a dopamine waterfall.

Every time I think about it, it's just such a beautiful thing that I use my body to save the life of someone that I'll never meet. And, and I got to launch a kidney chain for four people.

And so I just imagine them all having the best days of their lives. You know, these four people,

one in Georgia, one in Oklahoma, and two in Washington state,

you know, just,

just, just being able to be cured from, from what is such a rough experience of being on dialysis. So instead of pitting two groups against each other, I think our bill compliments directed donation because we will now have a new stream of life saving kidneys from altruistic strangers who are motivated.

This will also greatly help these donor families because, you know, in my case case, my kidney flew from New York down to Georgia. And that Georgia recipient had a willing donor, but that person wasn't a good match for them.

And so they couldn't do anything about it until my kidney came along. But that person,

that, that donor in Georgia was a super match for someone in Oklahoma. So then switcho chango kidney flew to Oklahoma, Switcho chango two more went to Washington state, and that last kidney went to someone who didn't have anyone to donate on their behalf.

But keep in mind that, you know, this whole idea of the two streams of donors, they will merge. Once the NCIDney des Act, the refundable tax credit is provided for all donors.

And so this is the trial. I don't see this diminishing the numbers of directed donors. I can imagine. Two brothers want to give to their sister, one donates to a stranger and gets the tax credit, splits it with the other brother, and then they move on.

I mean, there are all kinds of ways to do this, but in so many cases,

multiple children will come forward to donate to a parent.

Once the parent has their donor, the other three step back. Perhaps the three now who pass the screening will consider donating kidneys to strangers and getting the tax credit. This is just going to work in so many beautiful ways to save the lives of those who are desperately waiting to be saved.

Denise Azadeh: It was so great to hear about your satisfaction with donation. And you mentioned how high the satisfaction rates are for others who donate.

And I think it's a perfect segue to Kendall, who is going to ask you about donors who feel a little bit opposite.

Elaine Perlman: Thanks so much, Denise. Hi, Elaine.

Denise Azadeh: Thank you for joining us today.

Kim Krawiec: In your drama response, you quoted that a recent national kidney donation organization survey reported that 97.9% of respondents would still donate under the In Kidney Deaths Act.

Historically, 95% of us living kidney donors say they would donate again.

Have you had conversations with any non directed donors that are part of this minority that would not donate again?

If so, what kind of seems to motivate this and are there any lessons to be learned about their experiences that are relevant for the EKDA?

Elaine Perlman: Yes, absolutely. So it is true that about 2% said they would be less likely to donate. Not that they wouldn't donate, but less likely to donate if a tax credit was offered.

Now keep in mind that donors need to apply for the tax credit, right? So they don't need to take the funds. They could donate the funds to their favorite charity.

They could refuse to take the funds, or they could take the funds to, you know, fix their roof or go on a great trip or, or invest in retirement or whatever they please with the money.

And it's, it's very interesting. A lot of people say, well, don't you want to tell them what to do with their money? And I said, well, do we do that for surgeons?

Do we do that for other people? Like, why be so paternalistic about donors? And so I have met two donors that are opposed to the tax credit and they said they would feel that their halo, their angels halo, would be removed as a result of receiving compensation for their donation.

And, and these are also the only two donors I met who want a halo. Most donors were repulsed by the idea of being called heroes or having the halo. We all,

most of us just consider ourselves to be very ordinary people who,

like, if you see someone drowning and you have a life raft, you're going to give it to that drowning person, right? It's the same thing. Like, I have two kidneys.

I only needed one. Someone was dying, I gave them my, my kidney. I, I do not want to be considered unusual or heroic.

It actually makes me cringe,

those kind of words. And so my feeling is, you know, you can save someone's life, you do it right. So I think the lesson to be learned from this is that there are always going to be people who disagree with you, regardless of the issue.

And it comes down that for those two donors that I've met, that they would rather keep the halo and have 100,000 people die in the next 10 years. I mean,

we know that 100,000 people died in the last 10 years and the rates of kidney death are increasing.

And I would say that perhaps those two donors did their donations more for moral licensing or to elevate their own egos rather than to save a human life from imminent death.

So I'm not concerned about the small numbers of people who are in opposition because there have been four surveys of the American public in which they've stated their support for compensating donors.

There have been four surveys of the transplant professionals in which they've said the same thing.

So the majority is on our side. And that is a very good thing in this advocacy process.

Denise Azadeh: Thank you so much, Elaine. And now I'm going to turn it over to Sari to ask our next question.

Hi, Elaine.

In your response to Dr. Muller, you draw on trends in gamete donation,

plasma donation, and surrogacy to illustrate the potential for increased kidney donations as a result of these tax credits.

However, the potential for long term physical harm differs significantly in the examples of gamete and plasma donation as compared to kidney donation.

So how do you respond to concerns that unlike these alternate trades, the potential for physical risk or harm in kidney donation could create unique ethical issues,

particularly if an individual's future health could be compromised for monetary gain.

Elaine Perlman: Thank you. Yeah. So let's just talk about the safety of kidney donation. Right. Kidney donation has become three times more safe in the last 15 years. It's because it's now done as a laparoscopic surgery.

Um, you barely have any scars. And,

and it's, it's three times safer than having a baby, 10 times safer than having a knee replacement, safer than having an appendectomy. And, and you know, because they, they carefully screen donors, it's very unlikely that something bad would happen.

But something bad can happen. I'm, I'm talking about death. There also are, some of my friends have had complications like hernias due to the fact that some doctors, it's called medical inertia, refuse to update their, their, their, their, the way that they do the kidney incision.

And so just, you know, you're three times more likely to have a hernia if you have a vertical incision in opposition to a horizontal incision. So once the end kidney desect passes, that's my next task, is to get doctors to, to just do what's right by patients and not subject them to the pain of a hernia surgery after they've been so generous to be donors.

It really upsets me when I think about it because several of my friends have had hernia surgeries. So you're absolutely right.

This is not an easy thing to do and it's an important distinction and it's why the Nkidney disect is structured as a carefully regulated pilot program.

As you stated, plasma and gamete donation is, is, is without surgery and without real risks, unlike kidney donation.

And we do have decades of data on outcomes. And, and, and we do know that kidney donation is safe or doctors wouldn't do it. As, as you probably know, donors are screened for health, financial stability, stability, and psychosocial readiness.

Right. So that means up to six months or even a year of screening. It's a very intensive process. They call it the million dollar workup. Um, if you're donating to a loved one, you go to one health,

mental health professional. If you're donating to a stranger, it's about three mental health professionals.

And so that screening and that, that sort of incredible evaluation process will remain intact post in Kidney Deaths act because it's working very well.

And nothing. So nothing in the legislation changes that fact. But what the bill does is it ensures that those who step forward to save the life of a stranger are compensated for their labor.

Now, by providing the refundable tax credit, we will broaden the access to those who want to donate while keeping all the medical and ethical safeguards in place. So, yes, it's true plasma and gamete donation are safer, but that's why this program is being federally overseen.

It's been carefully designed. It's focusing the focus on safety will, Will remain. And it, it will really strengthen public trust in the system when we show that this is so highly successful.

Just let's think about surrogacy for a moment. I said that, you know, having a baby is three times more dangerous than donating a kidney.

We have no shortage of surrogate mothers, and we will have no shortage of organ donors once we begin compensating them.

Denise Azadeh: Thank you, Elaine. And now I'm going to turn it to Rachel Greenbaum to ask our final question.

Elaine Perlman: Hi, Elaine. My last question is what considerations do.

Denise Azadeh: You run through when thinking about the residual moral and cultural impacts of shifting from an altruistic system to a compensated system?

Elaine Perlman: Yeah, I mean, organ donation is not just medical. Right. It's, it's, it's. It's a moral act. You are giving. You're having your body cut open to give a body part to someone else.

I mean, it is, it is a very. It is, It's a moral decision.

And so I think that we need to understand that we have an inequitable system right now where altruism is effectively reserved for those who are well off. And compensating donors will correct that imbalance and make this an opportunity that's widely accessible.

And as I've said earlier, this will, I think, increase public trust.

And also don't forget, the public is in favor of this. Right. So it's going to be a federally regulated program,

well structured, as I said, keeping the rigorous medical and ethical screenings.

And so what we're doing is we're protecting altruism, and I think that's a cultural good. By ensuring that those who donate are not punished financially, we have this moral and cultural fabric of donation.

We're going to preserve that. And we're also going to prevent about 10,000 preventable deaths annually. You know, every hour someone on the wait list dies while waiting for a kidney.

We can do far better than what we're doing now.

And if we treated cancer patients the way we treat kidney patients, you know, I think people would be in the streets. Right. But because I think kidney failure is not.

It's something that's very expensive, but not something that we attend to. It will make kidney donation central to, I think, the community conversation.

As I said, I hope that they're best selling books, how they become fit enough to become a kidney donor. I think that this is really something that has the potential to take off and really help people to have the experience that I've had, which is incredibly valuable, incredibly emotionally giving.

And I think that is going to be very positive for our culture. It's important to know that those who are opposed to this legislation are, you know, the people who want us to right away donate, provide the refundable tax credit to everyone.

And it's also the people who are making money from the kidney shortage. We predict that within the first 10 years of the end Kidney Deaths act, we will save 100,000 lives and $37 billion in taxes.

Don't forget that that money is coming out of certain people's wallets.

And those people are the primary people who are fighting against this legislation.

Also very good to know that there have been very few pieces of legislation that both save lives and money. It's usually one or the other. And it would bring the N Kidney Deaths act in great company with legislation like lead pipe replacement or tobacco regulation legislation.

So every, every day when I wake up in the morning, I think about all the people I know who are dying on the wait list.

I chant their names. I ready myself to get this law to the finish line. I've met with over 530 congressional officer since last January.

I try to imagine what a hundred thousand people look like. You know, that's very hard for me. So I try to focus on the individual faces. I imagine that the we have the power to.

For them to live or die in the next decade.

I'm really working. All I talk about is this get trying so hard to make it so that they can survive and thrive with their families and friends. Nothing is more valuable than life.

And so I'm really eager to pass the N. Kidney DES act and make us a country where no one dies while waiting for a kidney transplant or a liver transplant eventually.

And that I think will be a beautiful thing. And so I hope you had a chance to learn from my experience about five years ago, I knew nothing about kidneys.

I thought they were little vacuum cleaners in their body. I had no idea that they were so incredible little quarter pounders.

And so, yeah, it's all kidneys all the time over here. And I've really enjoyed speaking with all of you about this really valuable and essential legislation.

Kim Krawiec: Thanks so much, Elaine. I'm. You know, you're so persuasive, right? You've been so persuasive today,

and yet the in Kidney Deaths act hasn't passed. So why do you think that is? I mean, we've talked about some of the objections, right, that were raised in the exchanges you've had in medical journals, but I think.

And it's fine to talk about that too, but I think right now I'm asking a little bit more about the political impediments to passage. Could you maybe like, just give us a sense of that?

Elaine Perlman: Absolutely. So, as I said, I've spoken to almost every office, almost every Senate office, almost every House office, and everyone thinks it's a really good idea. But what's going on behind closed doors?

You know, when I was a kid and I imagined Congress people would always say in the smoky backrooms, I picture people, you know, smoking cigars and undermining what's best for the country, you know, and that's exactly what's happening.

So we have some, you know, bureaucratic representatives of different organizations that are profiting from the kidney shortage in the back rooms, persuading people that their big line is that this is going to harm low income people.

And it's infuriating because as I've explained, low income people are the ones who are dying from the kidney shortage. Low income people are the people less least likely to be able to qualify to donate.

But if they do qualify and they want to do it,

please open doors, you know, but, you know, so it's, it's like it's opposite Day. Right. They are. They are. They are trying to persuade people in power that they will harm the community rather than help the community with this legislation.

And they're not going to be effective.

And so the bill, the advocacy began in January of 2024. The bill was introduced in August of 2024.

Bipartisan.

And. And we had 18 co sponsors at the close of last year.

A new congressional session began in January 2025.

We now have 30 co sponsors,

including Nancy Pelosi. Speaker Emerita Nancy Pelosi, whose husband just got a kidney from their daughter. So she understands now the power of kidney donation. Her husband would have never been able to be on the waitlist due to his age.

Right. Only a living donor could have saved him.

And we also have very conservative members in favor. I think that what's harming us are these whispering campaigns by some of the big organizations in the back rooms. And so even though people think it's a good idea, they don't want to alienate themselves from these organizations.

But the organizations themselves, the constituents in the organizations are in favor of compensating donors. So it is very interesting line of work that I've adopted.

And my thing is, you know, we just got to keep moving. We got to be very persuasive. We have a lobby day coming up In October in D.C. we had one last September, which was quite effective.

We just have to keep moving.

And, you know, in every fable and every movie you watch,

pretty much if it's an action movie, especially there's a villain, right? There are people who are trying to undo good things. And so that's what I feel like. You know, I can't focus on it too much.

I just have to keep moving forward,

knowing that this is something that, you know, we can get done. And so people think it's a good idea. But unfortunately, there are some powerful people who, like Mueller, who is the leader of this Istanbul declaration.

I went to a meeting with him, and his big argument was that the quality of the donors will decline if we start compensating. I said it's the exact opposite. We will have far more people stepping forward, and so we'll have a better selection.

Right now, Mayo Clinic is providing an opportunity for people with diabetes to donate kidneys because they're so desperate to get donors. That should not happen. People with diabetes should never donate kidneys.

Diabetes causes kidney failure. Right? But it's because people are so desperate that they're now sort of going bottom of the barrel. I don't mean to be rude to be with diabetes.

I'm just saying they're really scraping around trying to find donors because so few people are able to come forward. So this will provide high quality donors, you know, people who.

Who really just want to save a life and now will be rewarded for it.

Great.

Kim Krawiec: Thank you. Denise, do you have any final thoughts or questions or anything?

Denise Azadeh: Elena, I'd like to thank you for taking the time to talk to us today. It has been such a pleasure to hear you speak and to shed light on a lot of these topics.

I feel like I've learned so much today,

and I really just appreciate you taking the time.

Elaine Perlman: It's my pleasure. And I want to share with you. I don't know if you've seen it yet, the video of my son meeting his recipient because.

Oh, it's so moving because that family has been through so much. Yeah. But that. I just want to give you a little update. That was six years ago.

Um, since that time, Chris, you know, who had to drop out of high school due to being on dialysis, got to finish high school. He's finished college. He wants to go to med school, and he's a new dad.

Oh, that's so interesting.

It's so beautiful. And so that's what I want for everyone. You know,

every single person who's waiting for a kidney should be able to get one, and we can live in that world hopefully very shortly.

Kim Krawiec: That's great. I should just make a note to listeners as well that all of the things that we've discussed here, we've talked about the in Kidney Deaths act, we've talked about some commentary back and forth in medical journals, and we've also talked about a few videos, and I'm putting links to all of those in the show notes so people can just click on those.

And you can. If you want to dig deeper into any of the stuff we've been talking about today, you. You can do that. Thank you, Elaine. This was really. This was really wonderful.

Elaine Perlman: That was absolutely my pleasure.

Kim Krawiec: Thank you so much.

Elaine Perlman: My pleas, Sam.