National Kidney Month

Hello and welcome to the Get to Life podcast where we have conversations about Oregon, tissue and eye donation. I'm Lori Steele. I'm Joey Boudreau. I'm Sally Gentry.

And this is National Kidney Month. Did you know guys? March is National Kidney Month. Yeah, what we do know, we've talked about it here on the Get to Life before, is that kidneys are needed a lot across the board, across the country.

They're 85,000 plus waiting for a kidney. And you know, Lori and Joey here in Louisiana, we have right at 2,000 people on the waiting list, right? And out of that 2,000, right at 1,800 are waiting on a kidney. I know, we hear about this all the time.

That's why we go out and we try to educate as much as possible. And you know, on this podcast, we're focusing on recent updates that have been made to the National Kidney Transplant's policies. So we're focusing on those updates. What does that mean?

Right. So the policy update really focuses on who gets the kidney. They tried to put a policy in place that would maximize that person's gifts while at the same time being fair and equitable to all potential recipients. We have a sample size three years in the making to see if this allocation is working.

Yes. We're going to look at that today. That is the focus of this gifted life podcast. So obviously you're ready to get into this and Joey, that's going to be your thing kind of breaking that down as our chief clinical officer there.

But we want to share this information because education is key, right? When it comes to saving lives. So we want folks to hear about this. We try to make it as easy as possible.

That's right. You can find us on Apple Podcast, Google Play or whatever your favorite podcast that might be. And you can find us on social media, Facebook or donate live, Louisiana, Twitter, Instagram at donate life, LA. Join us today.

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I hope that you share your story, become a partner with us here on the gifted life. So as we said, lots to get to today. So here we go. As we said, this episode, it's March National Kidney Month.

That's what we are talking about here. We brought in a special guest. His name is Darren Stewart. Hey, Darren.

Hey, how are you? Good. Good. Now Darren is a UNOS researcher.

You may remember us talking about UNOS Episode 51. So Darren, if we had to describe what UNOS was, what would you say, bud? We say live by matching organs. So that's the way to remember UNOS saving lives, matching organs.

So what UNOS is a nonprofit organization, a company here in Richmond, Virginia that operates the federal contract for managing the nation's organ donation and transplant system. So we have the computers here and the computer programmers, a lot of them that make the match happen. So when the clinical information about a donor who becomes available is entered into the system, our program runs the match and determines who the next best candidate is to receive that organ according to the national policy. So you know, CNET and network for Oregon sharing, UNOS.org, for those of you out there who want data, research, those kinds of things, that is a good resource for you as well.

Now Darren, specifically, are you focused on kidney allocation and policies research? So break it down. What is it that you do for UNOS? That's right.

So UNOS broadly handles all solid organ transplant allocation. So kidney's, liver, lungs, hearts, et cetera. I focus a lot on kidney data and kidney allocation analyses. I'm a principal research scientist in UNOS' research department.

I've been here about 10 years and I've been involved with the National Kidney Transportation Committee that is responsible for evaluating how the policies are doing and looking at data and ultimately proposing policy changes. And of course, a big change came along in 2014 that we're going to be talking about a little bit more later today. So let's talk about that. So I think if I'm not mistaken, it was December 4th, 2014?

That's right. It's December 4th. The date that a lot of us will remember very well, if it's in accommodation over about a decade and a lot of work when you're making that happen for December 4th. Yes it was.

So the policy was implemented on December 4th, 2014. When you guys were looking at the data from the previous system that was in place, as far as kidney allocation, getting the kidneys to the most appropriate, best matched potential recipients, what were some of the big challenges that you saw that needed to be put in place when you were creating the new system? Yeah, that's a great question. I think it can really boil down to sort of three areas of shortcomings, if you will, of the old system.

The previous system had been in place for decades and was largely a simple waiting time based system for scum for serve. There's sort of a fairness aspect to that and some of that is certainly preserved in the current system. But what we noticed in the data with the old system, number one, is that there wasn't very good longevity matching between the organs, the kidneys that were being donated by families and the loved ones and the recipients that were getting those kidneys. So that's one area of longevity matching.

Secondly is fairness and equity in access to transplants. They were pretty sharp disparities in the likelihood of getting a transplant and the average waiting time for patients that had sensitization levels, in other words, were pre-sensitized to reject a lot of organs. And so it just didn't have much of a chance to get a transplant because most organs would be incompatible with them. So they just really weren't having much opportunity in the old system.

And then there were also inequities by racial and ethnic minority groups. I can talk a little bit more about that. But then the third area that was seen as a trouble spot with the old system is in kidney usage. So, and I'll describe briefly what that means, but not every single kidney that is donated actually gets transplanted.

We want to fix that. We want to prove that. We want to fix the decision about whether to transplant a kidney. And some kidneys end up not being transplanted when they potentially could benefit somebody.

That was an area that the new kidney allocation system were cast aimed to improve as well. So how do you feel that the system has improved? Specifically, you touched on the ethnicity, race, disparity concerns that were there with the previous system. How has a new cast or kidney allocation system improved these?

Have you guys seen any changes there? Yeah, we absolutely have. So that's certainly a policy goal that's been met. In fact, we've recently done some work analyzing not only the impact of cast, which is in a three-year-old policy, but the impact of a series of policies going back to the mid-90s that were aimed at reducing the disparities in access to kidney transplants among different racial ethnicities and minorities.

So that gap was quite large in the 90s. Like it was again a transplant, for example, for African-American patients, was lower than for white patients. That gap gradually started closing in the 2000s, but there still remained a gap. And so I'll describe that data-wise.

If you look at the percentage of candidates on the waiting list for white versus black patients, it was about the same. However, the percentage of trans- went to going to African-Americans was significantly lower than going to white and other ethnicities. So with cast, we actually see that disparity is essentially gone. The average waiting time is pretty much identical.

White candidates, African-American candidates, and those percentages lined up pretty closely with the percentage of transplants going to African-Americans lined up with the percentage of candidates on the list for African-American. So the kidney allocation system definitely has made a significant improvement in equity with respect to racial and ethnic access to transplantation. The primary driver for that was the way waiting time was changed in the system. So in the old system, the waiting time that you would get that was sort of credited to you as a patient that would determine how high up on the list you were was based on when the transplant center you listed at actually entered you into the system.

And the problem with that is that it's highly dependent on a lot of factors that may be outside of the control of the patient. In particular, some patients don't get referred for transplantation. They don't get educated about it. There's gaps in the system in terms of getting that information to patients so they can make that decision if they're indeed a good transplant candidate.

And there's some disparities that have been recognized in terms of delayed referral or lack of referral to transplantation as a treatment option by race and ethnicity. So by changing the starting point for accumulating, waiting time priority to when you started dialysis, instead of when you happen to be entered into the computer system, that has really wiped away those racial and ethnic disparities, at least among African-American compared to white candidates. There are still some smaller disparities that are being looked into for other candidates, but that's a major success of the kidney allocation system. So overall then, many candidates would not have received a transplant before the allocation.

They may not have received a transplant before they may have received a transplant after having waited on average day a year longer or three quarters of a year longer. Okay. And you also touched on maximizing the longevity matching. When talking about longevity matching, we're really looking at how long these kidneys are going to last in this particular recipient.

So how have the needs there been addressed? Have you guys seen an improvement in at least some age and ethnicity factors? Yeah, absolutely. So one of the ways is looking at the number and percentage of kidney transplants in which the donor and recipient have a 30 or more year age gap.

And so very much age or longevity mismatch in terms of the likely time that that transplant of kidney is going to survive and then patient age as well. And so we've seen that the percentage of transplants that have a 30 or more year difference in donor recipient age has dropped by over 22% with a new system. There's a couple other ways to look at it. One of the ways to look at it is that before the new kidney allocation system, the one year before there were about 560 kidney transplants from donors age 18 to 34 that went to patients age 65 or older.

That was 16% of kidney transplants. And those patients, they may not need a transplant from a donor that young when there are also patients that are younger and arguably would need a transplant that lasts longer because if they don't get a transplant that's going to last longer, their graft may fail, their organ may fail, and they may wind up back on the waiting list which isn't good for anybody. So I mentioned 16% of transplants had that age 18 to 34 donor going to age age on 65 plus recipients that dropped under 10% under the new system. It's an impressive change that we're seeing of course and you mentioned that some patients would have to get put back on the list and then you need to be retransplanted.

Oftentimes you have now more antibodies which then causes more potential for rejection and then it creates more of a problem trying to match up with a potential future donor. So what we did see with the change there and maybe you can touch on it, we had a lot of highly sensitized patients, a lot of patients that had a lot of these antibodies, potential rejection that had been on the list for years and years and years and we certainly saw the disparity there where they weren't getting transplanted. So how did this change initially affect this population? Yeah, and definitely one of the major changes with CAST and I would say the major success of CAST is giving those types of patients that are on the list some hope of receiving a transplant.

So those types of patients, I mean those that have become sensitized, their immune systems are overactive whether it's because they got a previous kidney transplant that can trigger this sensitivity, development, pregnancy or a low transfusion can as well. And so there are degrees of sensitization, some patients are only mildly sensitized and they're compatible with most kidney donors, not much of a problem. But the old definition of highly sensitized was if you had a, if you were incompatible with 80% or more of donors, then you were highly sensitized. But what we recognize in the data is that there's a lot of patients that were 97, 98, 99% sensitized or even 100% sensitized which it rounds through 100, it's not exactly 100.

But basically what it's saying is that they have so many preformed antibodies floating around in their bloodstream that the chance of finding a compatible kidney donor is akin to winning the lottery, one in 10,000, one in a million depending on exactly the patient's medical characteristics. So in the old system which viewed all candidates with an 80% sensitivity and above as kind of being the same, it would have, the old system awarded those patients the equivalent to four years of waiting time. So it's as if they were waiting four years even though they just got added to the list and the hope was that and the idea was to give them increased chances of getting a transplant. It worked for some patients, if your sensitivity was 80, maybe 90%.

But again, many, many patients, thousands in the US have sensitization levels that are much closer to actually 100% in the upper 90s and those patients weren't being helped enough by the old policy. The new policy changed in a way that is more reflective of biology as well as more reflective of likelihood of getting a transplant. And so just really in brief what the new system did for those very, very difficult to match patients was number one, increased the distribution radius, so to speak, of kidneys around the country so that if you have a patient that's 99.9% sensitized, maybe they're not that close to where the donor happened to be. But if they were on the other side of the country, this may be their one shot in a lifetime to get a transplant, the new system actually gives them priority even over patients that are much closer to where the donor is.

And then secondly, instead of sort of the four points, if you have an 80% plus score, the points are assigned more along the continuum. Think of it like a sliding scale as this sensitization level goes from 0 to 100%. And that's more reflective of how the biology works with that old 80% threshold kind of being a little bit arbitrary and out of date. So what we've seen with the data, looking at the forecast versus aftercast, there's much more equity in access to transplants across this sensitization level spectrum.

We actually have an equity in access report online if any of your listeners are interested. If you type in UNOs or OPTN equity in access report, it should pop up. And there's just a lot of information about how the kidney allocation system improved equity in particular with respect to these sensitized patients, but also with respect to racial and ethnic minorities, as well as a bunch of other factors. And keep in mind that kidneys can last generally speaking at least 24 hours, depending on the transplant center and the potential donor.

But that's a significant amount of time. So what we saw, especially in the first year, was a boldness effect where we had an influx of kidneys that were traveling. We sent a lot of kidneys to the West Coast and the East Coast in that first year, a lot more than we had sent in years past. And it's because of exactly this, the sensitized, highly sensitized patients that never had an opportunity that was sitting on the waiting list for double digit years and may have never ever gotten that opportunity.

And now with the cast of policy change, they then started getting a transplant in abundance. So it was really, I can tell you from our standpoint, very gratifying to see the work that we're doing and then the family's gifts and this donor's gifts being able to save someone who may have, in these cases, truly never gotten that chance. So that was a really, at least from our standpoint, from this small viewpoint of Louisiana, very satisfying to be able to see these patients get that second chance. And you talked a little bit about the maximizing the kidney utilization.

Do you think the cast achieved the goals that you were intending first to maximize the kidney utilization, especially on those that maybe weren't the perfect 18 to 25 year old kidneys? And second, is there still work to be done or do you see any changes in the future based on that same metric? Yeah, so actually there's a natural tie in between your last point about kidneys being distributed to the east coast of the west coast to help these patients out that previously had little hope in the kidney utilization discussion. So there was a lot of fear and concern, especially right out of the gate when the new system went into effect because organ procurement agencies noticed that they're having to ship a lot more kidneys and they were concerned, you know, rightfully so, that well maybe these kidneys may not be used because they're shipped all the way across the country and then it's found out at the last minute that this candidate that's highly sensitized may actually not be a good match and sometimes that does happen.

Is the kidney going to be used by anybody or is it going to be an unfortunate wasted organ situation? And the good news stories that by and large these kidneys that are being shipped are going to the intended recipients. In fact, the effect that we've seen, the percentage of transplants going to these 99, 900% sensitized patients is higher than what was predicted because by and large the transplant community, the OPOs, the transplant centers are doing a good job in making sure they get into the right patients and are not wasted. It's not perfect, there's still a clinical situation that happens where the kidney shift and then it ends up not being able to go to that patient.

Usually it goes to a backup patient and that's a success as well. But by and large that aspect of the system's been efficient, demonstrating that kidney can be shipped at broader distances successfully. And the other side of the coin is the question of how the kidney allocation system has impacted the utilization of organs that are maybe from slightly older donors, donors that might have had hypertension or diabetes or some health conditions that make the kidney still usable but maybe not the optimal kidney that's going to last 15 or 20 years, but instead maybe only last seven to 10 years. And so it's a medically complex decision for any patient should the patient and their transplant team utilize or accept a kidney that's expected to function for say, you know, seven to 10 years or wait for the perfect kidney that might last over 20 years.

There's a lot of improvements that could be made I think to the system to help with those decisions but the reality is under the old system that even today a lot of those decisions end up being, no, I'll pass, I'll wait for another better kidney and it's thought to be the case that there's a significant number of these not so ideal but still transplantable kidneys that end up not being used every year. In fact, the National Kidney Foundation held a conference in May of this past year focusing on this issue, kidney usage, try to make sure that every donated kidney if it isn't indeed transplantable and could benefit patients on the list compared to staying on dialysis which does not have great outcomes compared to transplant by and large transplant to patients, survive longer and have much better quality of life than dialysis even with one of these not perfect kidneys. So kind of cutting to the chase, we have not actually seen the improvements that we're hoped for in the area of kidney utilization for these, these again less than perfect kidneys. In 2005, kidney that's donated ends up not being used again from a deceased donor and we saw a little bit of an improvement in 2017 compared to 2016 and 2015 which was the first two years after passment to effect but I think there's still a lot more work to be done in that area.

I think there's a number of different policy refinements now that the new system which is a better system than the old one is in place. There's a lot of refinement ideas that could be done around that. I won't get into detail but just basically conceptually just talking about the whole equity and fairness aspect of the system which is a bedrock principle and will continue to be there but then there's a utility aspect of allocation which if nobody gets the organ yes it's equal but that doesn't nobody any good. So it's systems or policy refinements that aim toward finding a willing acceptor for a kidney that may only last say seven to ten years and doing so in an expedited way or an expeditious manner is something that the community is actively talking about to make sure the gift of life is maximized.

So you talked about learning more as we go on we're three years into it. How does that work when you go and you tweak this policy basically? Yeah so that discussions and deliberations data analysis along those lines is happening now. The Kennedy Transportation Committee is looking at a few different areas of possible policy refinement.

One of them has to do again with the sensitized patients. The system is a lot better than it was but there's some refinements there that could be made. Another one is an area of pediatric transplant access. So just in brief the idea of CAS was to not really change access to pediatric candidates but to leave it pretty much as it is which is the fact that pediatrics get transplanted at a rate about four times faster than adults.

So the idea with CAS was to kind of leave that alone. Pediatrics received priority, significant priority. So there was only minor changes with the kidney allocation system instead of prioritizing pediatric recipients to receive donors based on donor age, age less than 35, a more sophisticated approach was used. So pediatrics received priority for those kidneys that are expected to last the longest.

However there's some refinements that folks think are needed even though the number of pediatric transplants has remained the same before and after CAS. The percentage of transplants going to pediatrics has gone from just above 4% to just below 4%. So a slight decline and that's something that is in part related to those highly sensitized patients which when you put those folks kind of at the top of the list that end up affecting access for other candidates on the list. So there's definitely some refinements with respect to pediatric transplants and recipients though their access to transplant remains roughly the same as it was under the old system which again is much higher than for adults clinicians are recognizing that there may be areas to improve.

The system to make sure they're getting the right kidney offers and that their outcomes are being good. So you guys talked about 2014 was when this was passed to be meet back at the table in five years, 10 years or is it as needed basis or constant looking at the data. So there was a constant evaluation. There was sort of a waiting period so to speak at least a year where the committee said let's just let the data settle out and mention the goal of the effects earlier.

Let's see kind of where the steady state lies in terms of who's getting transplanted in terms of the percentage of kidneys that are transplanted and so forth. So we're kind of past that now and so there's definitely recognized areas of improvement and so the committee is actively working on those. Well you seem like you know what you're talking about Mr. Darren.

As for 10 years man we appreciate you and so you said if we wanted to look on the site we wanted to do our own research from that perspective where did you send us. Right so there's a few places you can go but one place kind of will be sort of the hub. I would say you go to optn.transplant.hrsa.gov.gov. You can look up data run data analyses and reports on your own.

There's a lot of highlights of policy changes and different things that are going on within the transplant network and that equity report can be found on there as well. Perfect and I think we're going to have you back on kind of walk us through this. I'd be delighted. Yeah thank you so much we appreciate you.

Thanks for having me. In every podcast we honor a hero. The hero today is Kenneth Dusette. Kenneth lived a life centered around public service.

Over 30 years, Kenneth served as a volunteer member of the fire department while also working as a police officer in Port Allen. Kenneth was the first certified EMT of West Baton Rouge Parish. Following his retirement from Dowel Chemical after working 32 years as an operator he put his emergency response skills to use as a dispatcher for the West Baton Rouge 911 Center. His four children could always count on him, the coach athletic teams or be a leader at their school booster club.

Through tissue donation his family was honored that he was able to make one final contribution to others. And now we pause to say thank you to Ken for the gift of life. In our question and answer segment today this question from our Donate Life Louisiana Facebook page we always like when you guys reach out. This says my mother just received a cornea transplant once to ask if there's any way she can find out more about the donor.

She wants to contact the family and say thank you. Okay what I suggest that she does is contact a surgeon who performed the corneal transplant and ask him if he would please give her or she would please give her the information as far as the eye bank where the corneas came through. She can then contact them and they can provide her with additional information about how to write to the donor's family to thank them and other particulars that they may have that would help her in doing so. So there you have it.

If you have a question for us and you want one of our experts to answer or maybe we can find the answer for you info at lopa.org. Episode 77 of the gift of life guys that is it. It's March. It's National Kidney Month.

We talked about Kidney Allocation and boy do we get lessons today. Love it. Lots of knowledge. We want to definitely give a special thanks to Darren Stewart, you know his researcher for sharing with us the changes that happen with the kidney allocation system and how those changes affected potential recipients.

Yeah, and he told you where to go to get more information. We're going to give you some more resources. So you know, that's the United Network for Oregon sharing you in OS.org or the National Kidney Foundation. We're going to promote that here in March National Kidney Month.

So good episode. Absolutely. Here you go. We hope he inspires you to go out and do something that you don't normally do to help us make life happen and maybe you don't have that registration to be an organ tissue and eye donor on your license.

You haven't talked about it. We hope that you do. You're inspired to go and make that move. Register me.

Go there today. We hope you have a good one.