Stan, Clarence, Barry, and the Health Chatter team chat with Susan Mau Larson, Chief Administrative Officer at LifeSource, and Sarah Sonn, Director of Communications at LifeSource, about life saving organ donation.Susan Mau Larson has spent her career leading strategic and policy efforts to strengthen organ donation systems nationwide and support donor families through the process. She has held leadership roles across national donation advocacy and public education organizations.Sarah Sonn leads communications at LifeSource and focuses on public education, storytelling, and community partnerships to increase donor registration and address misinformation.Join us for an insightful conversation about how every individual and institution plays a role in making life saving organ donations possible.Find out more about LifeSource's life saving work here.Join the conversation at healthchatterpodcast.comBrought to you in support of Hue-MAN, who is Creating Healthy Communities through Innovative Partnerships.More about their work can be found at https://www.huemanpartnershipalliance.org/
Chapter 1: What is the main topic of organ donation discussed in this episode?
Hello, everybody. Welcome to Health Chatter. We all took a little bit of a break from Health Chatter. And so now we have an incredibly interesting show in line for all of you today. We're going to be talking about organ transplant and some, whether you think it's good, bad or different, the political complexities that are facing this subject matter. We've got two really great guests.
We'll get to them in a moment. We've got a wonderful second-to-none crew that helps us with all our shows from day one, Maddy Levine-Wolfe, Aaron Collins, Deandra Howard, Matthew Campbell, and Sheridan Nygaard. Some live out of town, Chicago and in Denver, but they're still connected with us. And so thank you to all of you. You're really, really super colleagues.
Clarence Jones is my partner in Health Chatter podcast. Thank you, Clarence. And we chat a lot even during the week. So thanks for being with us. Barry Baines. is our medical advisor and provides some medical perspectives on many of the shows that we have. So thanks to you guys as well. Human Partnership is our sponsor for Health Chatter. Wonderful community health organization.
They do incredible things in the community. And I highly recommend that if you have just a moment, check out their website and all the different things they do. As a matter of fact, I'm sure if you wanted to even get involved, you could through Human Partnership. You can check them out at humanpartnershipalliance.org.
And, of course, you can check us out, all the different shows that we've done on Health Chatter. You can check us out at healthchatterpodcast.com. All the shows are transcribed, and also the background research for all the shows is provided on our website. So check us out as well. So today, organ procurement, organ transplants,
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Chapter 2: How can individuals register as organ donors in Minnesota?
and the political complexities. So Clarence, take it away. I'll let you introduce our great guests.
You know, I'm honored to, I'm always honored when I have the opportunity to talk about LifeSource. I always say that, and this is a disclaimer, LifeSource is one of the greatest partners that we've had with Human in terms of the very difficult conversations that we've had to have in community about health issues and chronic diseases and those kinds of things. They've always been...
Again, they've always been a great source for us in terms of accurate and appropriate information. But my friend Susan Mel Larson, who I've known, I always like to say I've known her for two centuries, for the 20th and the 21st century. But we'll let that go. She is the chief administrative officer for LifeSource. And then Sarah Son, who is the director of communications.
for LifeSource and who has been able to provide us with a lot of great information and work for the community around this particular topic. So what I wanted to do was to allow them to introduce themselves and then frame the conversation. And then what Stan and I and Barry will do is we'll begin to ask them some questions. So ladies, your turn.
Great. Well, thank you, Stan. Thank you, Clarence, so much for having us. This is such an important topic. And Susan and I have been with LifeSource for many, many years and are so passionate about the work that we get to do. So we're here today to talk about organ donation and organ transplantation. It's such a unique area of medicine.
If you think about it, transplant, you have to wait for someone else to give the gift of life. You can't just schedule a transplant. You can't, you know. go in and get a heart transplant on a day that you choose. You have to wait for a heart to be available. So it's such a community-oriented process.
And that's really what we're here to talk to you about today is what the process is and how everyone can support it. So organ donation, there's a huge need in our community.
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Chapter 3: What are the common misconceptions about organ donation?
About 2,300 people, 23 of our friends and neighbors are waiting for a life-saving transplant. As the mom of two kids, I think about this often, if one of my children needed a transplant, I would hope the community was checking that box and signing up so that a heart or some other organ would be available for them.
However, only about 55% of people are registered organ donors right now in Minnesota. And that number is declining. So and unfortunately, that's due to misinformation. So I'm excited for this opportunity to really get into that detail and talk about some of those facts and some of that information that might be preventing people from saying yes.
So let me ask this question. It's kind of like, you know, you say that, you know, people should sign up. And only, what, 55% of those that say that they support it do. So first of all, let's make sure that our listening audience is clear. Where do you sign up?
Sure. Well, in Minnesota, there are a lot of ways. That's something Susan's led a lot of this work is finding different ways, convenient ways for people to register as an organ donor. So the most common way, of course, is to register on your driver's license. About 90% of people do that when you get your first license.
You know, remember that time when you were 16 and got your first license or just when you renew your license every four years in Minnesota. We were also the first in the country to add it to the hunting and fishing license. So that's an easy way to do it. And obviously, you know, hunting season is starting here. So that's a good opportunity. You can also do it on the iPhone health app.
or online at life-source.org.
Wonderful. Wonderful. I want to ask a question. I know that, again, we'll go back to that 55% people that have signed up, but I understand the majority of Americans are in favor of organ and tissue donation, and yet we only have 55%, you know, that have signed up. So can you talk a little bit more about that?
I mean, what are some of the issues, the barriers, or the thoughts that people are having?
Yeah, great question, Clarence.
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Chapter 4: What are the barriers preventing people from registering as organ donors?
So yeah, according to studies, over 90% of people say that they support organ donation. However, obviously much fewer are actually registered and have taken that step. So I think it is a lot of myths and misinformation, some of the things that come up often. My team does a lot of work out in the community. We also partner with DMV staff so they can answer basic questions and some simple ones.
People think they're too old. You know, nobody's going to want mine. We hear that a lot. And that's actually not true. The oldest organ donor was 98 years old. So you can be much later in life and still give and still help others. So our message really is let the doctors decide, check that box and, you know, you'll be evaluated, you know, at the end of your life, what you can give to others.
And then tissue donation, you know, people have donated tissue, bone, things like that well into their hundreds. So don't rule yourself out. Check that box. Another big one is, you know, I am not healthy enough. You know, maybe you had cancer in the past or,
didn't eat well, you know, in your younger years, that again, that stuff, medical advances, that none of that precludes you from being a donor. There's so many innovations that have happened to allow doctors to really, you know, enhance the health of organs and use organs that, you know, maybe that we couldn't use 20 years ago. So again, check that box. Don't rule yourself out.
So Susan, I want to ask you a question. I know you are the chief administration officer at LifeSource, but you have done a lot. I mean, I kind of joked about our journey, because I am a community member. And I'm dealing with a very, very clinical, you know, medical kind of organization. Why don't you talk about your journey with community in terms of your engagement?
Because I think that a lot of times people don't necessarily see the connection and why it's so important for us to be talking about this topic. You know, why are we good partners in talking about this particular topic?
Yeah, thank you, Clarence.
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Chapter 5: How does the organ donation process work once a donor is identified?
And as you said, we've known each other over two centuries, and it's truly been one of the honors of my career to be your friend and your colleague. So we started really at LifeSource over 20 years ago talking about how do we make sure that we are fully an inclusive organization and that we are meeting the community where they need.
And we know that there is a lower rate of support for donation among some communities, in particular the African American and the Native American communities. And so Clarence, you and I started talking over 20 years ago. What can we do? How can we fully engage? How can we as an organization listen and support the community? And we started...
with some federal grants, some federal support to do some engagement, to do outreach in schools and in churches. And in particular, and I'm very proud of the work we did with the barbers in Minneapolis and the surrounding area where we were able to work directly with these community leaders, barbers, provide them information about donations so that they could provide that for their clients.
And what was really key was not only information about donation, but about health issues like high blood pressure and kidney disease and other things that might lead to needing a transplant. You know, at LifeSource, we're working so hard to make sure that we reach a day where no one dies waiting for a transplant.
But really, wouldn't it be great if nobody, you know, someone's always going to need, but if we could prevent some of those health conditions that lead to that need for transplant as well. So we've been working together to really improve the health of the community. I will also say, gosh, I'm losing track. 12 years ago, I think, LifeSource moved to North Minneapolis.
That's where our headquarters is. And we did that very intentionally so we could open our doors and welcome the community and be very transparent about, here's who we are, here's how donation works. And we could be fully collaborative with organizations like HUMAN and others in the community.
So let me ask this. It's like, let's help our audience understand the process a little bit. All right. So it's like, all right, somebody, let's just start by saying somebody needs a kidney. Let's just start there. Okay. Now what?
Yeah, great question. And kidney, the need for kidneys is really high, about 80% of that wait list. So like I said, about 2,300 people in our area, over 100,000 nationally are waiting for an organ transplant and about 80% are for kidneys.
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Chapter 6: Why are kidneys the most commonly needed organ for transplants?
So if you find yourself in need of a kidney and you get listed at a local transplant center, you know, then essentially you're waiting. You're waiting for that call. You know, we hear about the call all the time. And I'm really going to explain the process from the organ donation side, which is what LifeSource, the process that LifeSource manages.
So LifeSource is the only one allowed to do this work in our region. We have partnerships with all hospitals across the three states that we serve. So hospitals, once they've done everything possible to save a patient's life, but the patient dies,
has experienced a non-survival injury, then they call us and they share some information about the patient and LifeSource evaluates that patient to see if they might have the opportunity to donate and help others and save lives. One person can save up to eight lives through organ donation and then hundreds after that through tissue donation and bone and other things like that.
So the process then begins of life source evaluating the patient. If there is donation potential or we think there might be, we meet with the family.
Either we let the family know that their loved one has checked that box and has chosen to be a donor and wants to save lives, or if they haven't, then we talk to the family and give them the information that they need to make the decision about whether their loved one will go on to save lives.
Um, after that step, then we start, um, the, the matching process and the medical evaluation looking for, um, we run, run the match list, um, for each organ to see who meets the criteria. It might be someone local. It could be someone, you know, in another part of the country, there's a host of criteria that we're looking at.
Um, once matches are made, uh, then we coordinate with the surgeons who will come and recover the organs, um, And then we support the family through this process and in the months and years to come after that. So we support the family with information about who their loved ones saved. We host a lot of events to honor donors. We've got a beautiful wall here at our office in North Minneapolis.
So we're really with these families every step of the way supporting them. And I will say that's a really unique thing. I almost feel sad for families who lose a loved one and don't have someone from LifeSource to help them through the process. A lot of our staff are former chaplains, social workers, so they really can help guide through grief and loss beyond just the organ donation process.
So why just kidneys? I mean, not just kidneys, but why are most of these kidneys? Are we seeing organ procurement and transplants for kidneys? What's the story here?
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Chapter 7: What are the recent challenges faced by organ procurement organizations?
So kidney disease is so prevalent. So that's a big contributor to the need for kidneys. And it's also part of the reason that the wait list is about 60% people of color. Susan, anything else you would add about why kidneys are such a big part of the wait list?
Let me jump in real quick. Can I jump in real quick?
Please.
That has been probably one of the biggest conversations that we've had in our community. In fact, we recently honored a guy who lost his eyesight and his kidneys as a result of drinking soda pop and Kool-Aid. And he was so moved by that experience and impacted by that experience, he actually created a water brand, which we take out to the community, which is called It's Just Water.
So I think that when we're talking about this particular topic, there are people that have been, the things that they have consumed are some of the things that are causing them to have the need for kidney. So I just wanted to throw that in there because I think that it's so important to say that it is a big issue and it has something that we need to be talking about.
So Susan, I'm sorry, your turn.
If I could just, if I could maybe just, weigh in a little bit on that, why kidney transplants is the number one area. Part of it is that over the years, remember dialysis, when that came on quite a number of decades ago, people in kidney failure, they were, you know, this was, you know, predates really organ transplantation. And so dialysis was always a way to keep people alive.
And then when transplants came online to be kind of standard of care, your results are much better if you can get a kidney. I had one of my best friends actually was on dialysis and then had to wait a number of years, and then he got a kidney, and his kidney only lasted 20 years, and then he had to go back on dialysis again, and then he died waiting for another kidney.
And the reason why, and please, Susan and Sarah, you could weigh in on this as well, is our population is living older. And some of the biggest things that cause kidney failure are high blood pressure, hypertension, and diabetes, longstanding diabetes. And those chronic diseases, as we know from other Health Chatter episodes, really do impact communities of color disproportionately, I would say.
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Chapter 8: How can living donations help address the organ shortage?
And then the other thing was just in an examining room conversation, Some patients, not very many, but, you know, do register a concern. Well, if I am an organ donor, is that going to impact the kind of care I get if I am critically ill? And I would always do my best to say, you know, that you're a center stage when that happens. This isn't like trying to harvest organs, you know, from people.
But still, it's a worry. And I think it all comes down to, you know, trust. which is a big issue as well. So I just wanted to weigh in on those few things and invite either pushback or confirmation or other things that seem to be barriers, because for me, removing barriers so that people are ready, because even if you are a donor, you know, the process to get that organ for someone who
you know, is a match. It's not like, oh yeah, okay, well I'm an organ donor and then poof, it happens. It's very, very complicated process that's fraught with a lot of issues to make it a successful organ donation.
So let me, so it seems to me that there's like these steps and maybe you guys can, can react to this a little bit. So our great research group put together. So it seems to me, correct me if I'm wrong, it starts out with a need. There is a need. You need a kidney. We'll just use that as the illustration.
And then you start getting into the idea of matching and allocation and then preservation of that organ. if indeed it turns out it could be, it is a match and then transportation and then implanting it and then follow up. So talk to us about this whole process, all these steps that are involved.
Yeah. Thank you. I think, you know, you touched on something that's so important is You know, this is really, I always think donation is the best in humanity. It's really about one person giving to another and somebody they don't know. But to make all that happen is incredibly complex.
Yeah.
I just touch on a few points in that process that we talked about. First, I'm going to go to what Barry talked about of if you're registered and what does that mean? And can someone's family overturn that? And I think that's a really important part of the process and the legal framework. So what our state law, actually every state law says is that, first of all, donation's a gift.
And second of all, if somebody is registered, that's legal authorization for donation. They have authorized it the same way your will is. Like, you know, maybe I've said, if I have any money left when I die, Sarah gets it all. Well, then she does. Clarence, you don't get it, right? That's sort of similar to that process. And we work every day to really respect and honor those decisions.
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