Imagine a world where living kidney donors are compensated for their life-saving gift. A world where a severe shortage of kidneys doesn't result in the preventable deaths of over a million Americans. In this riveting dialogue, we're joined by four non-directed kidney donors - Ned Brooks, Elaine Perlman, Dr. Matt Harmody, and Cody Maynard who are the founding members of the Coalition to Modify NOTA. This team will help us uncover the implications of the National Organ Transplant Act (NOTA) of 1984. Together, they propose a life-altering solution that could end the kidney transplant wait list by offering tax credits to donors.
Living kidney donation is the gold standard of kidney care. Living kidneys last on average twice as long as deceased donor kidneys. Only living organ donors can solve the kidney shortage.
One percent of all Federal taxes that are collected is spent on patients in end stage renal disease. Every time someone gets a kidney transplant, an American can not only survive but begin to thrive again while taxpayers save money. In twenty years, the number of living kidney donors declined seven percent while the number of Americans on the kidney wait list doubled. The need for kidneys rises by seven percent per year. One million Americans will have kidney failure by the year 2030.
In today’s podcast episode we will discuss how modifying NOTA could end the transplant wait list.
Imagine a world where living kidney donors are compensated for their life-saving gift. A world where a severe shortage of kidneys doesn't result in the preventable deaths of over a million Americans. In this riveting dialogue, we're joined by four non-directed kidney donors - Ned Brooks, Elaine Perlman, Dr. Matt Harmody, and Cody Maynard who are the founding members of the Coalition to Modify NOTA. This team will help us uncover the implications of the National Organ Transplant Act (NOTA) of 1984. Together, they propose a life-altering solution that could end the kidney transplant wait list by offering tax credits to donors.
Living kidney donation is the gold standard of kidney care. Living kidneys last on average twice as long as deceased donor kidneys. Only living organ donors can solve the kidney shortage.
One percent of all Federal taxes that are collected is spent on patients in end stage renal disease. Every time someone gets a kidney transplant, an American can not only survive but begin to thrive again while taxpayers save money. In twenty years, the number of living kidney donors declined seven percent while the number of Americans on the kidney wait list doubled. The need for kidneys rises by seven percent per year. One million Americans will have kidney failure by the year 2030.
In today’s podcast episode we will discuss how modifying NOTA could end the transplant wait list.
Right now, the number of Americans with end-stage renal disease would barely fit in the five largest NFL stadiums. Picture that Now. Picture a world after the HERO Act has been passed. Picture the line outside of the transplant centers of people who are willing to donate life-saving kidneys. Now that they will be compensated, let's turn back to those stadiums full of people who can attend their children's weddings, finish college, be long-living parents and enjoy this gift of life. With so much life in them, it is unethical to let them die.
Speaker 4:
Welcome back to Donor Diaries. This is your host, Lori Lee. I have four very special guests today who are part of my kidney donor tribe. All four are non-directed kidney donors who have gone on to do incredible work in the transplant space. We have Ned Brooks, who founded the National Kidney Donation Organization, also known as NKDO. Ned's a returning guest to Donor Diaries. You can check out season one, episode four, to hear his first interview called Leverage, where we talked about the impact of a kidney chain and kidney vouchers.
Speaker 4:
We have my friend, Elaine Perlman, director of Weightless Zero, which is an organization that is taking the lead in changing and creating policies to support and protect living donors, with the goal of doubling the number of living donors in the US in the next five years. She's also an incredible vegan chef who is welcome to feed me any day, even though I'm not vegan. We have Dr Matt Harmady, a recently retired physician and a non-directed kidney donor. That's an unusual status that I always love to see, so thanks for that, Matt. Matt took care of dialysis patients nearly every day for his 20-year career. He's also an athlete who runs ultra marathons and he was part of the group who did the one kidney climb of Mount Kilimanjaro summoning on World Kidney Day in 2022. Lastly, we have Cody Maynard from Evergreen Nephrology. Cody is the winner of the Men's Division of the Donor Games, which is a sort of Olympics for living donors.
Speaker 4:
Cody is also a returning guest. You can hear his donation story in season one, episode five, where we enjoyed margaritas on a porch swing with a choir of crickets. Today, we are talking about a topic that is kind of a part two to season one, episode nine, where we interviewed Dr Frank McCormick about compensating living kidney donors. If this is a topic that interests you, I encourage you to check out that episode for a first time, or even a second time. It's actually one of my very favorite episodes and it's packed with supporting content that complements this episode. So, turning this over to my guest today, you four are all founding members of the Coalition to Modify Noda and are engaged in a game-changing effort to pass the SHIELD Act and, finally, in the shortage of kidneys that kills more and more Americans every year, your plan is to compensate living kidney donors for their willingness to give a body part to save a life, and today I can't wait for you to tell our audience all about this amazing effort, which is one that is near and dear to my heart.
Speaker 2:
Welcome guys. Oh, we're so happy to be here. Lori, thank you for this opportunity.
Speaker 4:
So, Elaine, let's start with you. Can you give us some background information on your Coalition to Modify Noda?
Speaker 2:
Sure? Well, first let me quickly explain what Noda is. So Noda stands for the National Organ Transplant Act that was signed in 1984, and that date is really significant because it's the year that George Orwell wrote about in his excellent book 1984. And you know the phrase the Road to Hell is Paved with Good Intentions. That pretty much describes Noda very well.
Speaker 2:
Noda forbids any organ donor from receiving anything of value for their organ, and perhaps our government had good intentions when they wrote the law. That states quote it is unlawful for any person to knowingly acquire, receive or otherwise transfer any human organ for valuable consideration for use in human transplantation. Unquote the punishment for being paid for a live organ is $50,000 and five years in prison. So why do I think this is Orwellian? Because Noda created the kidney shortage. Over 85% of our demand for kidneys is unmet in the United States, and over a million Americans who could have gained good health and longevity from a living kidney transplant instead died from the kidney shortage since the year 1984 when Noda was passed. If, at that time, the government had provided a financial incentive like a refundable tax credit and not what is instead the reality of huge financial loss for donors, far more Americans would have stepped forward to donate their kidneys and those one million people would not have died the miserable death from kidney failure. Now this does not include others from buying and selling organs, only the original owner of the organ. I was in a meeting with a transplant surgeon who said that the organ procurement organization in his area charges this hospital over $50,000 for a kidney. So plenty of money is being made, but at this moment the donor cannot receive any money.
Speaker 2:
Now here's a little history about the coalition to modify Noda. It was created by four people Ned Brooks, dr Matt Harmony, cody Maynard and me. We all gave our kidneys to strangers. The coalition is proposing legislation that will launch a trial of removing disincentives for kidney donors who give their kidneys to strangers, so that we can eventually expand both the benefit of longer lives for recipients and greater cost savings for taxpayers by extending the program to all living kidney donors. We believe this is ethical, safe and regulated alternative a refundable tax credit of $50,000 over five years to living kidney donors who give their kidneys to strangers.
Speaker 2:
Right now, about 93,000 Americans are on the kidney waitlist and 13 of them die every day. We estimate a million Americans will have failed kidneys by 2030. And the US government spends $50 billion a year for 550,000 Americans to have dialysis. It costs about $100,000 per patient per year and that treatment is far more expensive in the long run than transplantation. Each kidney transplant saves taxpayer money and living kidney transplants are the gold standard for treating kidney failure. Under our bill, we estimate the taxpayers will cumulatively save over $10 billion by year 10 under our proposal. You know, lori, we know that we only need one kidney to maintain vitality and longevity, and 95% of donors say that we would do it again if we could. So providing a tax credit for donors is both logical and it's favored by over half of Americans surveyed. So is this gonna apply to?
Speaker 4:
all donors or just non-directed donors?
Speaker 2:
So you know, since I've been working on trying to pass legislation, I've learned that the government really likes trials. We will have a trial first with non-directed donors. Once we prove that this is both life saving and tax saving, then we are going to advocate to pass a bill so that all living donors will receive the refundable tax credit.
Speaker 4:
So I know 2% of our federal budget is spent on care for those in end stage renal disease. I'm gonna dip back into the archives here for a second and share a clip from episode nine with economist Frank McCormick, who has dedicated years to this work. I think this adds some extra context to the cost savings aspect of a bill like this.
Speaker 5:
Yeah, we estimate that the lifetime cost of someone on dialysis is about $1.2 million, and if you could transplant those people, then that cost would end. However, it costs something to transplant folks and it turns out that the taxpayer is paying about 80% of both the cost of dialysis and of transplantation and once you subtract the cost of transplantation from the cost of dialysis, you wind up with about $200,000 a year. So the taxpayer, for every person who receives a kidney transplant, is saving about $200,000 a year. We estimate that the value of a transplant kidney to the recipient and the caregiver which is very important is about $1.5 million. So you're saving their life. Okay, that's the important thing, but if you put an economic value on that, it comes out to be about $1.5 million. So it's a win-win situation, shall we say.
Speaker 5:
If we offer $80,000 per kidney, if the government does that, then that will end the kidney shortage. We don't think that will be exploiting the donor. We've written a paper analyzing this in great detail and what we find is that if we pay people $80,000, that would not be exploiting them. That's a sufficient amount of money that they would not be exploited and the benefit that they will give to someone else is vastly greater than that If you were in an operating room waiting for an organ and it's delivered to you. It's not provided free. It has a stiff price tag on it that reflects all of the work that various people have done to produce that organ, and that is rightly so. Only the donor is not compensated. Everybody else involved in producing the organ is compensated, and if we could just have the government offer kidney donors something like $80,000, then all that would end and we would be saving over 40,000 people a year, and of course that's an enormous thing.
Speaker 4:
I know that Frank talked about paying a lump sum of $80,000 to all donors, but your coalition understands that we have to take baby steps, and starting with a $50,000 tax credit for non-directed donors only and not directed donors is the start to something that one day might look more like what Frank describes. So are you guys saying that Noda is responsible for the shortage and all of these deaths, or is it more complicated than that?
Speaker 6:
I think it's also a multifaceted issue.
Speaker 6:
There's a cause and effect, and a lot of the cause of people needing kidneys in the first place is due to very difficult social challenges that are difficult to overcome, such as just general nutrition and health literacy, various socioeconomic statuses across different communities in this very heterogeneous country, and so it's not as easy for the United States to have as healthy of a population as a very homogeneous population in some other, say, European countries or Asian countries, and so the challenges of just keeping our country healthy is first and foremost the issue that's causing a lot of people to have kidney disease.
Speaker 6:
But then the preventative measure that the government has done to prevent individuals from donating their organs and receiving compensation is further exacerbating the disparity between the supply and the demand of organs. I often think about a quote by Dr Daniel Solomon, the medical doctor, the kidney, pancreas and transplant program at Scripps. He said every person in the chain of organ donation except one profits. The supplier of the kidney is unpaid. It's illogical that we have a shortage. The hospitals, the nurses, the doctors, the pharmaceutical companies all get paid. We have no shortage of people in those fields who benefit the most from that transplant. So it is the recipient who gets to enjoy a better life and a longer life, but the donor is the only one who doesn't receive the actual compensation.
Speaker 1:
Yeah, and what Cody's describing in simple terms is that a commodity passes through a chain of transactions and everyone in that chain benefits except the supplier of the commodity.
Speaker 3:
So we've mentioned exploitation in the past, but it's really the lack of compensation that is exploitive in this situation.
Speaker 1:
That is the very definition of exploitation.
Speaker 4:
So, dr Matt, I know this affects you both professionally and personally. Can you tell us a little bit about what connected you to this effort?
Speaker 3:
My experience, laurie, is multifaceted. I've had a career in emergency medicine over 20 years and, as you had mentioned earlier, I have had the opportunity and privilege to take care of many dialysis patients over that time, probably nearly every shift that I worked. In addition, my father suffered from kidney disease and was on dialysis for several years and actually benefited when the law was put in place for Medicare to cover all chronic kidney disease patients, who are those on dialysis despite their age. My father was only 50 when his kidneys failed. So that perspective of having a personal story as well as a professional experience really just gives me a lot of background in being able to understand this problem. In addition, I think we all know here but for the audience it's wonderful and I think many of you have had personal stories to see a dialysis patient who generally makes no urine to be transplanted and immediately be producing urine as early as in the operating room. It's just a magical experience, especially for the recipients, and it just goes to show you that living donation is the way to go.
Speaker 4:
Yeah, I actually remember that, post donation, when I was told that my recipient was producing urine, it was a pretty great feeling.
Speaker 2:
Yeah, I remember that moment too, when the nurse came into my room a few hours after my surgery and gave me that great news. And I think it's important for everyone to understand that a living kidney lasts about 15 to 20 years on average, but with good fortune and good care, a kidney lasts way longer than that, and I heard about the person whose living kidney transplant has been lasting for 56 years and it's still going. So people on the younger side may need two or three transplants during their lifetime and I just found out from a doctor in California that OPO's the organ procurement organizations. They charge hospitals upwards of $54,000 for a deceased donor kidney. So that sort of shows. What Ned was saying is there's money being made by many people in the kidney world, just not by the donor.
Speaker 1:
The big problems of people are not lining up to donate their kidneys. In the past two decades, while the number of people who need a kidney transplant has greatly increased, the number of living donors is declined by 7%, while there are 90,000 people on the wait list for a kidney. That doesn't take into account the people who have become too sick to get a kidney transplant, so upward to 500,000 people, and most of them are too sick to get a transplant because they had to wait too long for it. So you've got such a gap in supply and demand and it's totally preventable and we're quite confident that the solution we propose is one that will solve the problem.
Speaker 2:
Yeah, the power of a transplant is so tremendous. Both my son and I gave our kidneys to strangers and when AB's recipient met him, he said to my son you gave me a new life. And, like Ned said, that is the power of a transplant is really to save a person's life and extend it. And those who are at peace with the status quo, where thousands of people are dying from this preventable kidney shortage it's just like being okay with intentionally depriving someone of life-saving medicine and those who are opposed need to understand that our country's unwillingness to pay donors have directly resulted in these thousands of Americans dying and we could use our resources to make sure we have an adequate supply of kidneys. And that's what the HERO Act is all about.
Speaker 6:
We have people in the US who don't wanna donate under any circumstances.
Speaker 6:
I think, as far as the deceased donation aspect is concerned, it's very important and we don't wanna minimize that, but right now we've sort of maxed out the number of kidneys that we can receive from the deceased donation pool.
Speaker 6:
So, even if you aren't registered as a deceased donor, the OPO representative will likely still ask your family if it's okay if you donate, and, very fortunately, the majority of families still say yes, that they would like to, which is great.
Speaker 6:
That being said, it's important to note that there's only a small percentage that chance that you die in a way in which your organs can be procured so around one out of every 3,000 deaths in the United States because it has to be in a very controlled way, where the organs are healthy enough to be transplanted, and so, because we've tapped that out, we really need to tap into the living donor population, and people are getting less and less healthy. It's especially challenging for individuals who live in communities where their friends and family are also suffering from chronic illnesses like diabetes or hypertension, and so their pool of potential donors is smaller, and so I think that's an important thing to recognize as well, as we on this call may be thinking well, I have plenty of healthy friends and family that would donate, but other individuals who don't have a lot more difficult time finding a donor, and so, simply put, we just don't have enough donors.
Speaker 4:
Wow, so you guys just unpacked a lot there. So I want to repeat what Ned said, that the demand for kidneys is going up while the supply is going down, and I don't think most people realize that. I'm guessing when this law was passed, lawmakers weren't thinking about this problem as one that would get so big so fast. Do you think they would have considered incentivizing donors if they understood the trajectory of the organ shortage and where it was going?
Speaker 2:
Senator Gore said that if we cannot have an adequate supply of kidneys, we should consider incentivizing kidney donation. Yeah, but unfortunately until now it has not been revisited right, so I'm really proud of this team for bringing it to the forefront. We are all super motivated to end the shortage of kidneys. We've read plenty of articles by advocates who are in favor of compensating donors for their kidney gift. These include Frank McCormick, janet Radcliffe, richard Sallie Sattel, ike Brannon and Phillip Held, and even Nobel Prize winner Al Roth. They're all in favor. You can check out our supporters page. It's a beautiful thing to see how many people have come out in favor of the HERO Act, and some of these people have been donor Diaries guests.
Speaker 1:
I think if you go to the website and you look at some of those folks, you'll be very impressed at those who are true leaders in the transplant field the surgeons, the nephrologists, the donor coordinators. These are some of the most highly respected people in transplant, and what this tells me is that this group has come to the recognition that the system is failing. The system has failed. It's not doing what it was intended to do, and when they're willing to sign on to something like our mission statement, I think that really says a lot about how badly this system is in need of renovation.
Speaker 4:
Thanks, ned, and to our listeners. If you're interested in checking out who Ned and Elaine are referring to, there will be a link in my show notes for you to check out. Their supporters, frank McCormick and Al Roth, have both been guests, and many of the other names you guys mentioned are actually aspirational donor Diaries guests, I mean. Several of these experts have dedicated years to solving this problem, so congratulations to you guys for getting the support from these thought leaders. It's no small feat, but tell us what is the opposition saying.
Speaker 6:
This is Cody, so I've taken point on running opposition for our team, basically to stress test a lot of our ideas. We all have different contributions and there are a lot of valid concerns when it comes to a proposal like this. So I don't want to minimize those concerns and we want to recognize that, in order to do this, the most important imperative is to do this ethically and safely, and so there are a variety of different concerns socially, morally, politically and philosophically, and just the logistics of getting Congress to put their weight behind this has deterred some people by saying that's too large of a mountain for us to surmount.
Speaker 4:
So I imagine the biggest huge ethical concern here is that this is gonna exploit people, like people would feel extreme pressure to donate a kidney to resolve a serious financial problem quickly. How will modifying Noda ensure people won't be exploited?
Speaker 3:
I'm worried that the proposal is progressive, which was another concern raised by many. In other words, there's probably as many as 50% of Americans that do not pay federal income tax, so the benefit to lower middle income folks in this country will be much greater because it's refundable. So if they do not pay federal income taxes, they would actually receive a check from the federal government. So it makes it extremely progressive and would have much less of an impact on, say, a wealthy person stepping up to donate.
Speaker 4:
So a wealthy person is just gonna get a tax credit, but someone who makes maybe $30,000 a year would actually get a check. Do I understand that correctly?
Speaker 3:
Just to use rough numbers. Someone that may earn $30,000 a year would not pay federal income taxes and they would receive a $10,000 check, whereas, say, someone else that earns $150,000 a year would get a tax credit and their federal income taxes do so roughly. The $10,000, $30,000 a year earner would be much more significant than, say, $150,000 a year earner.
Speaker 4:
Do you guys know or have you talked to people who've said they would change their mind about becoming a donor if they were financially incentivized to?
Speaker 2:
I definitely know.
Speaker 1:
Yeah, intuitively it certainly does. We did a survey of kidney donors and asked them if you were to be compensated in this fashion and able to donate again, would this compensation make you more inclined to donate, less inclined to donate or not make any difference at all? Those who about half of them said it would make them more inclined to donate, roughly half said it would make no difference at all and one or two said that it would make them less inclined to donate. So just on the basis of people who've already gone through this, you've got half of them who say it would make them more inclined to donate. I think you can extrapolate that to the rest of the population in some fashion.
Speaker 4:
So, guys, what else do you want people to know that we haven't covered today? Tell us some more.
Speaker 2:
Since we already donated, we all have nothing to materially gain from the passage of the HERO Act. We just want those who are dying these preventable deaths to live longer and healthier lives. We are also very eager for the American taxpayer to save billions of dollars each year.
Speaker 1:
Well, you know the old phrase insanity is doing the same thing over and over while expecting a different result.
Speaker 1:
This transplant process in this country is basically fits that description of insanity. While we've been doing the same thing over and over, the wait list has done nothing but grow. As Cody pointed out earlier, it's about twice what it was 20 years ago, and we believe that the time is as good as it's ever been to end the kidney shortage by compensating all kidney donors. We are leading the charge. We need people who will support this vision. So, anyone who's listening to this, we urge you to go to the website modifynotaorg and read our mission statement and, if you agree with it, to join the coalition by completing the form in there. What we have seen and heard from talking with professionals in organizations which have an organizational statement in opposition to compensation is that most of them privately agree with us, but they have to keep their voices low in order not to be in conflict with their organizations. That is something we need to change, and we are taking on these organizations one by one.
Speaker 4:
Alright. So now is the time. Now is the time to speak up. If you want to support this initiative, the best thing you can do is go to ModifyNotaorg and this link will be in our show notes and there's a link to click on to back the cause. And these guys don't just need you to say you support the cause. They want your name on their website and mugshot, maybe, to illustrate all of the people in support of this initiative. That's what's going to give us some momentum here.
Speaker 2:
Love the mugshot image. Fortunately, support for kidney patients and donors is bipartisan. I worked last year on passing a waitlist zero law in New York, a state called the Living Donor Support Act, and once that's implemented, this bill will make New York the most generous state in the country for reimbursing living donors for their lost wages and out of pocket costs. And the really encouraging thing is that that bill was passed with you in. That bill was passed with unanimous bipartisan support because kidney disease impacts everyone, republicans and Democrats alike. So we're fortunate that kidneys are bipartisan.
Speaker 1:
Yeah, the poorer we are, the less healthy we are as a country. That's why so many middle and low income Americans have no one in their social circle who is healthy enough to donate when we have a surplus of kidneys. All Americans will benefit, regardless of their economic background.
Speaker 6:
This proposal is both financially responsible and the humanitarian thing to do, and so it's really a win-win for the American people.
Speaker 2:
I was recently speaking with a New York City firefighter who gave his kidney to save a stranger, and this person had not told anyone about his gift, not even his family. When he heard about the Hero Act, he said that among the firefighters, the mantra is whatever it takes to save a life, and that's what the Hero Act is all about. We only need to compensate donors until we come up with the high tech or Zeno replacement for disease kidneys. But we know that this is years away and in the meantime, we cannot stand oddly by as people die from a preventable death. We had a shortage of sperm, eggs and plasma, and so we pay the donors. In all but three states, surrogate pregnancy can earn a person up to $100,000. And that is exactly what we need to do to end the deadly kidney shortage.
Speaker 1:
Right now, the number of Americans with end stage renal disease would barely fit in the five largest NFL stadiums. Picture that Now. Picture a world after the Hero Act has been passed. Picture the line outside of the transplant centers of people who are willing to donate life, saving kidneys. Now that they will be compensated, let's turn back to those stadiums full of people who can attend their children's weddings, finish college, be long living parents and enjoy this gift of life. With so much life in them, it is unethical to let them die.
Speaker 4:
Wow. Well, that's a powerful image to leave everyone with. Ned. You nailed our closing today. Thank you Well. I can't thank you guys enough for joining me today. I'm genuinely proud to have donor friends who are up to such incredible things. The work you are doing is so important to future donors and I can't wait to do a follow up podcast in the future where maybe we're going to talk about the olden days when donors weren't compensated. Thank you so much. Keep up the great work.
Speaker 3:
Thanks for having me, Laurie. Yeah, thank you so much, Laurie.
Speaker 4:
Thank you, guys. We referenced lots of resources in this episode today and I hope you check them all out in the show notes, making sure to click on the link the coalition to modify, not a home page where it says join the coalition. Here you can endorse the mission statement and it will also sign you up to be invited to the coalition's monthly meetings. And to the listeners out there, I just want to say thank you so much for listening to donor diaries. As long as you keep listening, the podcast will keep coming. If you're enjoying this podcast, don't forget to hit your subscribe button so you get alerts as we drop new episodes. You can also find us on Facebook and join the conversation there. This is your host, laurie Lee, signing out for 2023. See you next year.