Talk of the Towne episode 11: American Kidney Fund

Zoom screenshot from Talk of the Towne episode 11

In the latest installment of Talk of the Towne, we sat down with Melanie Paris, M.A., MPH, the Senior Director of Strategic Partnerships and Kidney Disease Education at the American Kidney Fund (AKF). In the discussion, we got her insights into the types of kidney disease, treatment disparities, and the importance of clinical research in the field. She also shared many valuable resources for individuals and their loved ones living with kidney disease, which are linked here. To get all of her insights, listen to the podcast or read the transcript below!

Guests: 
Melanie Paris, M.A., MPH, is Senior Director of Strategic Partnerships and Kidney Disease Education at the American Kidney Fund (AKF) in Rockville, Maryland. At AKF, Melanie oversees the creation and development of evidence-based programs and resources for people living with kidney disease, their caregivers and renal professionals. 

Melanie joined AKF in 2017 with several years of experience in health program design, implementation, evaluation and analysis with companies such as The Ohio State University Wexner Medical Center IDeA Studio for Healthcare and Design, Truven Health Analytics and the American Heart Association. Melanie is both professionally and personally committed to working as an agent of change to improve public health by working toward and advocating for solutions that are innovative – yet simple, practical and aimed at root causes.

Melanie holds a Bachelor’s degree in foreign language education and Master’s degrees in African Studies and in Public Health, all from The Ohio State University.

Host: 
Dr. Richard Towne is a PharmD graduate from the University of Buffalo School of Pharmacy and Pharmaceutical Sciences. Before joining the Antidote team, he gained patient engagement experience in several settings, including primary care, managed care, hospital, and community pharmacy. He leads the annotation team at Antidote, which is responsible for structuring the I/E criteria of currently available trials on clinicaltrials.gov to maximize patient matching through Antidote Match.

Transcript

Richard Towne:
Welcome to Talk of the Towne, the podcast from Antidote that bridges the gap between clinical research and conversation. I'm Rich Towne, a trained pharmacist and the senior clinical informatics manager at Antidote. Today I am thrilled to welcome Melanie Paris, the Senior Director of Strategic Partnerships and Kidney Disease Education at the American Kidney Fund, which is one of the members of Antidote's partner network.

Melanie has worked with AKF since 2017 overseeing the creation and development of evidence-based programs and resources for people living with kidney disease, their caregivers and renal professionals. Both personally and professionally, she is committed to working as an agent of change to improve public health. Melanie, welcome to Talk of the Towne.

Melanie Paris:
Thank you so much, Rich. It's great to be here.

Richard Towne:
So this conversation will be about kidney disease, which is a condition that occurs when damage to the kidneys inhibits their blood filtering ability and it's estimated the impact up to about 37 million Americans. Kidney disease is the fastest growing non-communicable disease in the United States and is also one of the top 10 causes of death. Part of what makes kidney disease so devastating is that it often doesn't show any symptoms until later stages of the disease, meaning that many individuals that are living with kidney disease are unaware of its impact. However, routine screening can provide individuals with valuable insights as to how their kidney is currently functioning.

And with proper management, progression into kidney failure for these patients can be significantly slowed or halted. Research is still vital to understanding the causes of kidney disease, but is established that diabetes is the top cause of kidney failure and about one in five adults with high blood pressure may have kidney disease. Additionally, kidney failure disproportionately impacts racial and ethnic minorities compared to white Americans, which indicates the need for further investigation into disparities in the diagnosis and treatment of the disease. For over 50 years, the American Kidney Fund has advocated for individuals impacted by kidney disease and people have always been the cornerstone of their work.

After saving the lives of 79 patients through grassroots fundraising in 1971, AKF has expanded to become the leading provider of charitable assistance to kidney failure patients, directly helping over 2 million individuals and educating countless more. Today we're excited to chat with Melanie about her work at AKF with a special focus on recent research breakthroughs, kidney disease clinical trials, and the impact clinical trials can have on people living with kidney disease and their loved ones. So just to start the conversation, as I kind of mentioned before, kidney disease is a very broad umbrella and it encompasses a very diverse portfolio of diseases.

From acute disease to chronic disease and also ultra-rare disease on top of that with some diseases barely affecting anyone and some diseases affecting millions and millions of people. So can you sort of describe how the patient experience can be different across those different spectrums of kidney disease?

Melanie Paris:
Sure, I'd be happy to. First I'd like to thank you for just such a great introduction and also Antidote for their partnership in our work. As you mentioned, people are first for us. Couple of other things I wanted to mention is I am not a doctor and I want to make that clarification because sometimes when you're speaking on kidney disease, especially for an organization, people are looking at you or to you for doctor advice and that's not what I am. What I am though is more of a public health specialist and my training is understanding the behaviors of people and the systems that impact health outcomes and then in looking at that and statistics. And what we have in terms of our environment that play a part in our health.

What I do here really is apply the best practices that have been established by research and what we know about what drives people's health behaviors to ensure that we have a pretty good understanding of people's conditions and what motivates them and [00:06:00] how we can inspire people toward making any kind of behavior changes that relate to their health, how we can educate people to be more empowered to advocate for themselves. So I wanted to say that. The other thing that you mentioned, Rich, that was really interesting is that you had mentioned 37 million people living with chronic kidney disease. Actually recently, the CDC changed that number to 35.5 million.

Now this just came out, we at Kidney Fund are still looking into why that reduction is. We suspect it could have something to do with unfortunately people dying from Covid because people who have kidney disease, especially people who are on dialysis are pretty vulnerable to certain diseases. So I just wanted to just make those points before we move forward.

Richard Towne:
And that definitely makes sense. Can you sort of talk about the difference between maybe what the biggest causes of concern are for patients with acute kidney disease versus the biggest concerns for patients with this chronic kidney failure, maybe patients on dialysis?

Melanie Paris:
Well, I think that lends to what you had mentioned around the patient experience. And what I like to do and I think it's so important for us to remind ourselves, that before people are patients, they're people. And your experiences around a disease are often determined by what comorbidities you may have. As you mentioned, diabetes is the top cause. That can shape an experience. Unfortunately, other things can shape someone's experience. How much access they have to healthcare, their age. We have children that have kidney disease. How much you know about kidney disease? What stage you are diagnosed? Are you on dialysis?

Have you been newly diagnosed in an earlier stage where you can take preventative measures? What we do know is that anytime someone is diagnosed with the disease it can be devastating for some, it can be confusing for others and they're looking for answers. Some may or may not be surprised. And so what we try to do, especially in the materials that we develop for people living with kidney disease, we try to encompass all of those experiences. And the other part of that experience, not just the patient, but it affects people who are around them. The caregivers, we try to address the caregiver experience. That's very important too. Loved ones.

And also when we talk about kidney disease, even people who donate kidneys, there's an experience for donors too. So we try to have that overall view of what the experience with someone can be.

Richard Towne:
Absolutely. You mentioned how people were diagnosed at different stages of kidney disease. Why do some people not get diagnosed until it is far more severe and why do some people get diagnosed much earlier on?

Melanie Paris:
Well, that can vary. What we know from our research and what we know about kidney disease and their symptoms. Symptoms for chronic kidney disease can be kind of sneaky. More so for people who have high blood pressure. The reason is because when the kidneys start to become damaged, you don't feel it right away. And that is concerning. The good news is if it is diagnosed early, oftentimes there are things that can be done to slow down the damage. We call it slowing progression. In this sense, progression is not a good thing in kidney disease, so we don't want things to progress. A lot of times people don't even know that they have kidney disease.

So the statistics say about one in 10 people who have chronic kidney disease do not know they have it. And a good part of that is because they can't feel it. Some people are diagnosed early because they've had diabetes for a while and they have a provider that is monitoring their kidney function. Same thing with hypertension or maybe another type of comorbidity where there's attention being paid. Sometimes it's found early if someone's just doing their normal checkup. Unfortunately by the time somebody can feel their kidneys failing, it is pretty advanced.

And we call that sometimes crashing into dialysis because there are many cases where people weren't getting treated, they didn't know that they had it, maybe it was missed, maybe they knew they had it and hoped it would go away and they end up in the emergency room and are told right then and there, "You are going to have to go on dialysis." So because the condition is caught at different stages, that determines the treatment. And the treatment, depending on the stage that you have, can have various effects on your everyday life. And so those are the things that drive those experiences around being diagnosed at different stages.

Richard Towne:
So I guess I have two follow up questions. So if you're a patient that might be thinking, "I don't know, I have diabetes, I have high blood pressure." What sort of things do they actually look for to make a diagnosis of this kidney disease? And what sort of patients need a kidney biopsy for diagnosis, if any?

Melanie Paris:
So that's a big one. So I'll speak in diabetes first. Being able to confirm whether or not someone's diabetic, it's a straightforward and a reliable way of a test knowing whether or not you have it. And we all know in this field that diabetes is the top cause. Interestingly what we found a lot, we used to go out and do a lot of public screenings and we would have what we called our five-minute kidney health conversations with people who had just come up to get their blood sugar taken and blood pressure. And most of the people before we talked to them about the causes, do you know most people thought kidney failure was because of alcohol consumption?

Richard Towne:
I actually didn't know that. That's fascinating.

Melanie Paris:
And even when I talk to people, I say I work for the Kidney Fund and unfortunately everyone pretty much has a story about themselves or a loved one. "Oh, I got to cut down on drinking, I got to watch the kidneys." And I said, "Well..." Not that I'm saying, "Hey, drink away." But I always tell people, "You really want to make sure that your blood glucose or blood sugar is normal and especially high blood pressure." So I want to get into high blood pressure because that's a lot sneakier for people. People who have high blood pressure sometimes don't know that they even have high blood pressure. Oftentimes you've lived with a condition for so long and it's gradual, you may not even know what normal feels like anymore.

And if you don't go to the doctor to get checkup, you can have high blood pressure and walk around with high blood pressure and not know it. And we used to also do public screenings for blood pressure. I cannot tell you how many people we would run into that have blood pressure 200 plus, over a hundred plus and they're walking around think, "Oh it's okay." And that's an emergent condition. But it's very difficult sometimes when you have high blood pressure and kidney disease, well, have high blood pressure and not knowing that you have kidney disease because a lot of times people just are not monitoring that.

And so it's a pretty vulnerable situation for people to have their kidneys progressively becoming damaged and not know. What you talked about is terms of cause. That is something that we have put a particular focus on at American Kidney Fund. We have an initiative called Unknown Causes of Kidney disease. Many people are misdiagnosed, undiagnosed with the underlying causes, particularly at times blood pressure, that are causing their kidney disease. So sometimes people get a diagnosis that, the high blood pressure is causing the kidney disease. However, oftentimes the underlying cause of that high blood pressure hasn't been diagnosed. And so people sometimes really just don't know what the causes were for their kidney function to fail.

Richard Towne:
And so that's really interesting when we talk about these comorbidities, these diabetes and blood pressure causes. That seems to be one of the causes of chronic kidney disease. But it also appears that there's a lot of people who may have inherited kidney disease or gotten kidney disease from a more rare source. Can you talk a little bit more about these patients and how they get their diagnosis?

Melanie Paris:
So the key word is rare and oftentimes when something is rare, there isn't a lot of knowledge about it on the part of somebody who may be living with it and sometimes even a provider that they're seeing may not know or have the correct diagnosis. And about up to 50% of people with rare genetic conditions go undiagnosed and it actually takes about five or more years to even receive a correct diagnosis. If you have a rare disease, it's rare diseases in general. And when you talk about people, let's say they have a kidney disease that is prompted by something that's a rare disease.

It's estimated about 73% of patients who are on dialysis have never seen a nephrologist for under 12 months before they started dialysis. So you just crash into dialysis but you haven't been treated by a nephrologist maybe, could have done something to, one, slow down the kidney disease if that was possible, or get a further diagnosis with more intense type of diagnostic tests to pinpoint what exactly is the cause, especially if it's around rare diseases.

Richard Towne:
So you mentioned something interesting there when you talk about patients being followed by a nephrologist. So in regards to both, maybe we can separate this by rare kidney disease and more of a metabolic normal "cause" of kidney disease. Is the average healthcare provider really equipped to treat these patients? And beyond that, when you start considering when a patient finds a nephrologist, what sort of healthcare providers or other professionals are part of a kidney treatment team?

Melanie Paris:
I know a lot of providers read on their own and so it's hard to kind of say, but generally speaking again because it's rare, the average healthcare provider may have had limited exposure to a rare kidney disease. Some affect such a small number of people, there's a limited prevalence of it. So many healthcare providers just rarely encounter someone with conditions. And we've done surveys and a lot of times we hear from providers, that when I have a patient that shows up with something, that will prompt me to learn more. And sometimes rare diseases are pretty complex.

So rare kidney diseases, a lot of times present with some unique symptoms and some kind of complex pathology. A provider without specialized knowledge may have to struggle a little bit to differentiate a rare kidney disease from one that's more common. Remember I was mentioning, high blood pressure and that's the cause but not digging deeper. The thing is that there are sources available to help healthcare providers manage patients with potentially rare diseases.

I mean we have a lot of resources on our website, but there's consultation with specialists sometimes that a primary care physician... Let's say someone's been under the care of a primary care physician, they can collaborate with a nephrologist, sometimes genetic counselors, there can be referrals to rare disease centers. Unfortunately those are limited for people who don't live in major city centers. And of course there's genetic testing depending on whether or not that's seen as something that's necessary.

Richard Towne:
That was really helpful and I didn't actually know some of that. And it's very interesting to hear just how there are resources out there for the average healthcare provider just to know that when there's a rare disease, these providers can actually see these patients and maybe though they should be referred up to a nephrologist, even your average quote-unquote. And by average I mean just the general care primary care physician, there are ways that they can help these patients. And speaking about patients, and going back a little bit in our conversation to these risk factors of diabetes, high blood pressure.

Those are conditions where there are a lot of health disparities and we knew that about those diseases. But the statistics around kidney disease specifically are startling. So as I believe I mentioned before, Black Americans are four times more likely, Hispanic and Americans are twice as likely, and Native Americans are about 1.9 times more likely than white Americans to develop kidney failure. Can you speak to AKF's mission to address health disparities in this space?

Melanie Paris:
So I've worked in kidney disease now for seven years and every time I hear those statistics and every time I read them, every time I hear people's stories, they never cease to be startling to me and unacceptable. And I hope nobody ever gets used to hearing this because these are real people and real lives. So as you mentioned, American Kidney Fund, we started by addressing health disparities in 1971 when a neighbor of people could not access the treatment that they need. And so that is the entire focus of what we do. You hear buzzwords, I mean they're not without value, but things like health equity. For many people, those are new terms they've never heard before.

We have this just encapsulated into our mission and we always have. And so if I may, if it's okay, I just want to have people have a moment to really absorb what these statistics are and how startling they are. So you mentioned a couple, but they're also around transplant. That Black Americans are 25% less likely to be on a transplant wait list. So if you don't have a donor and you want to get a transplant, you have to go on a wait list. They're less likely to be added to a wait list. And let's see, there're a couple. So if you talk about even home dialysis, which a lot of people they want to dialyze at home, some people like to go to the clinics.

We believe that the option should always be presented. And if you look at who is being treated by home dialysis, 7.3% of Black people with kidney disease, 7.4 of Latino compared to 9.3 of white. And it's often caused by just arbitrary barriers. A provider just assuming that Black or Latino patients don't have the competence to administer dialysis at home without even asking questions. Black Americans are 60% more likely as white Americans to be hospitalized with diabetes. And so you talk about the impact of diabetes on the kidneys, if you're hospitalized with diabetes, that's pretty bad for the future of your kidneys.

It's something that I think it's so important for us to really absorb. That there are people who have greater disparities or living with them and there are other disparities. It isn't just racial, it can depend on where you live. It's your income. Do you have access to preventative care, to eat healthy food to prevent kidney disease in the first place? A lot of different factors. What we have done at American Kidney Fund to address particularly racial disparities because that's where we see a lot of the biggest stark differences, racial. And we've done some internal surveys with our patient population, people that we interact with.

And we've even adjusted for income and we've adjusted for education and the racial disparities persist. So we've taken an approach and we call it Kidney Health for All. And so what we've done is for... What we do as an organization and looking at the disparities narrowed down for areas in racial health disparities or kidney disease disparities that we feel like we've got the resources to address. One is prevention and stopping progression of kidney disease, access to transplants, access to home dialysis. And then another one is diversifying and encouraging participation in clinical trials.

And that is important because it is helpful and oftentimes extremely necessary to have a diverse participation in research so the efficacy of drugs are better.

Richard Towne:
You actually transitioned perfectly into what I wanted to talk about next, talking about disparities in clinical trials. I was hoping that we could focus on how these patients in particular, what sort of considerations around these patients in regards to participating in clinical trials as a whole and then specifically maybe some additional barriers present in protocols or patients that are experiencing health disparities. 

Melanie Paris:
There are so many, but maybe I'll start with just clinical trials protocol in general. I am in kidney disease, I've been in public health for, I don't know, almost 20 years and always had an interest in biology and things like that. I've already bought in. For people like me, I've bought into this. That yes, this is important and participating in research and I understand what a lot of the terms mean when I want to participate in something. For a lot of other people, it isn't so automatic. And if you look at the participation in clinical trials, I don't know if you've ever done it or you look at the protocols for clinical trials and sometimes it's pretty clear to the people who are doing it.

Some other people it's like, "I don't know what that word means or am I going to be a Guinea pig? I mean, what does this mean for me? And am I going to be given something that's going to harm me?" And I've seen all kinds of things and it makes me very nervous. And I think the first part is it is on the owner of the researcher to really explain what the value is for someone to participate in a clinical trial. A lot of times they'll say, "Well, they just have to understand." Well, we have to help them along and really validate their concerns and explain things in a way that people can understand. At American Kidney Fund, what we do, you look at our materials that we have for patients.

We use what we call concepts around health literacy, numeracy and plain language. And we do that so that things that are very complicated around a disease can be understood by the average person. And I'll say too, this is not about formal level of education. You can have a PhD, you can be an attorney, a very educated person, but this may be very new to you and you may need time to absorb this and we got to make it understandable. So I think that's one of the things that I've seen a lot of researchers trying to address, making the protocols understandable. A lot of times clinical trial studies have to be done at a major research center. And again, if you live in a major urban area, that may not be a problem for you.

I don't know about you, Rich, but I've got 10 million bazillion things I have to do in a day and I have a car and I believe in research. I have to be motivated to really want to do this. And so we have to address some of those barriers that the average person just interacts. People have children, they have jobs and they want to participate. One of the things that is being explored more is relocating sites, having satellite sites in communities where people can actually access them. It's convenient for them. Of course, since Covid, we've got lots of telemedicine options that are open for people.

So you've got those barriers that are kind of the circumstantial, everyday life kind of barriers. You've got a, "I want to participate, but I just don't know what this is barrier." And then you have, "I don't know about the kind of barrier, what are they doing here and what does this really mean?" So that's one side. But then you have other things like funding. There is not as much funding for researching kidney disease as we would like. Let's see, in 2023, the NIH funding for kidney disease research was about 2% of the budget. And so we totally understand, and I do too. There are many, many conditions, health conditions that concern many, many people.

Kidney disease is the fastest growing chronic disease condition there is. And when you've got 35.5 million people living with kidney disease and one in 10 of them don't know that they have it, I think that's a compelling case for more research being allocated for kidney disease.

Richard Towne:
I completely agree. And that's a lot to unpack obviously, and very powerful talking about just a variety of things that I think not just patients have misconceptions about, but also maybe investigators, maybe sponsors. There's a lot of misunderstanding between all three, and that's why I think conversations like this are so powerful. It's raising awareness to some of these issues.

One of the things you mentioned is even though funding for kidney disease is unfortunately not there, are there any specific developments or trends, in where kidney disease is going in terms of the clinical trial space that you're particularly excited about?

Melanie Paris:
Well, I mentioned a couple, the telehealth integration. Telehealth in general has made things just so much more accessible to people and incorporating telehealth technologies for not just recruitment of participants in trials, but monitoring and follow up. I mean, that's a whole component too. You can recruit people for a trial, but the retention, you got to keep them in the trial. And if it's hard for them to continue, that's a huge problem.

So telehealth integration. I think there's also more focus on patient-centered outcomes, placing a greater emphasis on patient-reported outcomes like quality of life measures alongside the traditional clinical endpoints so that there's more of, I think, an appreciation for the validity of a holistic picture of the impact of a treatment. 

Richard Towne:
One of the things that I thought was interesting is I really find the trends as well fascinating in how these trials are being conducted, but are clinical trials trying to change the treatment paradigm of how we currently treat kidney disease patients? Is it expanding treatment options for rare disease patients or is there something else that I might be missing? Where does clinical research need to go with kidney disease with these new procedures and drugs?

Melanie Paris:
I think that can depend on who you're asking. If I'm somebody who has a rare disease, that's what I want to see more of and that's what maybe... If I'm an investigator, that's where I'm going to focus. I think that there are a couple of different, I guess maybe you could call them developments, but I think there's some that you can look to in terms of early detection and prevention. So the standard diagnostic for determining whether someone has kidney disease is the eGFR test. Looking at creatinine with a blood test and of course have to combine that with the urine test.

There's also a diagnostic referred to as the cystatin C test, and it's considered maybe a little bit more reliable. Of course, depending on the condition, then that has to be determined by a doctor, but it also can indicate reduced kidney function. The difference is that the cystatin C test is less affected by muscle mass like creatinine is, and so it can make a more accurate test. So that's pretty exciting. I believe the availability is maybe not where we want it to be right now, but that's definitely something that's, I think, very exciting. So people can get accurate readings with where they are in their kidney disease. There are other things.

Looking at genetic causes of diseases. We have a lot of health campaigns where there's just been recent developments. One in particular is a genetic condition that affects only people who have ancestry from West Africa. It's called APOL1-mediated kidney disease. The gene is called APOL1. Not everybody who has those risk factors and even has the variants for that will present with the disease, but we have a whole campaign committed to that so that people who could be at risk are learning, "Okay, I need to understand this and maybe genetic testing is right for me." And I think even developments in genetic testing is really exciting for early detection or really accurate detection of kidney disease.

And there are a lot of different entities and researchers that are looking at novel therapies and personalized medicine and therapies that can delay progression and improving dialysis and transplant. Dialysis hasn't really changed and people say probably more than 50 years. So there's development on more efficient and less invasive dialysis methods that might become more readily available. And also I consider developments and addressing the racial ethnic disparities. That's a development too. I mean, it may not be necessarily in a science lab, but the efficacy of what's in the science lab is affected by these racial disparities in representations in these clinical trials and treatments.

I guess I'll add one. I know a lot of people are talking about artificial intelligence and application of that. Not exactly sure how. I know that's in the development. I'm a part of a couple of working groups looking into that and ensuring that the patient voice is there and it isn't just bypassed, but definitely AI utilizing tools for data analysis or even risk prediction and a personalized treatment. That's some promising potential for advancing kidney disease research.

Richard Towne:
It is so interesting to see where the field is going and just how much room there is to improve, really showing that kidney disease has not been figured out and there's just so many ways that the patient experience and just the disease as a whole can be affected by upcoming research. But that actually is a perfect segue into my second to last question I ask every guest.

So the first thing that I would ask as part of this question is what would be a piece of advice or guidance that you would give to a patient who's currently living with kidney disease that's listening to this podcast?

Melanie Paris:
I would say do not be hesitant to ask questions until you get an answer that makes sense to you. Some people maybe they don't feel like, "Oh, I don't have a high level of education like these doctors and I don't know. And they explained all this stuff to me and I think I know, I don't know." Ask questions and come prepared. Look at resources that we have on our website. And the thing is just keep asking. It's your body and it belongs to you and you are the director and you have a voice and don't feel as though maybe, "I feel weird asking this question or I feel stupid." You're not stupid, you're not weird. It's none of those things. Ask questions, do your research and do not be intimidated or feel less than.

Richard Towne:
I think that's fantastic. So the second party is do you have any advice for maybe an investigator who's running a clinical trial site? They're going to be the first face that a patient with kidney disease might interact with as part of participation in a clinical trial.

Melanie Paris:
What I would say is, Understand that this subject is a person and find out what's important to that person and ask them. You'd be so surprised what you learn from people where they are talking about their experience. That people don't identify just through their condition or their disease.

They have whole lives, they have families, they have dreams, they have aspirations. And take that into consideration in terms of a holistic component, not just the specimen or the drug in the trial. Understanding that person and taking time to just ask them. It can go a long way maybe, and that person feeling valued as part of this process.

Richard Towne:
In a very similar vein, the final party and much bigger than the other two in terms of scale is sponsors that are in production of maybe these new diagnostics procedures, tests, or also other funding bodies. What piece of advice, guidance, or even an ask that you'd make of them would you put to those?

Melanie Paris:
It is the same actually. And we are very appreciative and very grateful for the support that we receive from corporations. And I would say that understanding the lives and the people behind what your funding is so important. It brings a connection that isn't just dollars and it's not just an outcome, but what you contribute can affect the lives of people who are living with this. We have, at American Kidney Fund, we call it our ambassador network. And the ambassador network are people who are living with various stages of kidney disease, on dialysis, with a transplant, maybe with a second transplant, people who care for them, people who have lost people to kidney disease.

And every month our government affairs, a person who works with our ambassadors has a call. Where ambassadors... It's a Zoom call and they have various topics each month. And as I mentioned, I've been here seven years. Every single time, and I just listen. I don't really do anything but try to understand more about the experience. Every single time I listen, I am touched and I also learned something new about how different people's experiences are, how committed they are to helping other people with kidney disease and informing us because it is a disease that affects people's lives so drastically and it impacts entire families.

And so I think anytime, and I do this for myself and I try to remember to humanize your funding, humanize what all of these programs do. And when we hear how appreciative people are of what we've done, people have said the programs that we have and the information literally saved people's lives. I've heard those stories over and over. It's really, really touching and it's something that we have to make sure that it always stays at the forefront. That what we are doing and all of the other sides, those are humans and people.

Richard Towne:
And I think that is a fantastic way to end this interview. Melanie, thank you so much for appearing on Talk of the Towne. are there any resources that you want patients to follow for American Kidney Fund after this call?

Melanie Paris:
That's exactly what I was wanting to talk about are our resources. And I work for American Kidney Fund, and I'm not just saying, "Oh, look at our resources." I mean, we take a lot of time into developing the resources. Like I said, it's about health literacy. We make sure, "Okay, are we talking about the main things that people need to know? How are we presenting it?" So I would say take a look at our website. We have resources and information based on various stages of kidney disease, comorbidities. We have rare disease information. We also have different tools. One of the ones that I'm excited about that we just launched is called Know Your Kidneys.

It's a tool. You can insert some of your lab numbers, you get your lab report. And sometimes people are like, "I don't know what that means. And moreover, what should I do once I know?" And so with this tool, you can plug in some numbers that you have, and what we do is generate a report for you. Now, this is general because it depends on other things and it's so important to always to talk to your doctor. But those kinds of tools help people understand their disease. We also have Kidney Kitchen. Kidney Kitchen is all about eating with kidney disease. And when you have kidney disease, and of course it depends on what stage you're in, dialysis or transplant and other comorbidities.

Eating can be very challenging. And you notice, I did not say diet. Did not say diet. Our resources do not have on Kidney Kitchen, the word diet. And I don't know about you, Rich, but when I hear the word diet, I do not get excited. It feels like a chore. It's limiting, it's awful. And so when we developed Kidney Kitchen, one of the guiding principles was that we wanted to put the joy back into eating. And so when you see Kidney Kitchen, you hear nutrition, you see eating. We have recipes that have been developed by various people. One in particular, her name is Linda Blaylock. She's so interesting. She came to us asking, "Hey, I want to work on some recipes."

Because her husband was diagnosed with kidney disease. She became a chef because she said the food that all she saw and just stuff that was kind of boring and bland. And she said, "I can do better." So we wanted the recipes to taste good. We have guides that people can use to keep track of nutrients, so when they're meeting with their nephrologist or their dietician, and hopefully people can get a dietician. Those are tools to help and we have a variety of them. We even have tools for dieticians. We have a whole site called Kidney Kitchen Pro, and that's for dieticians. And it was developed in partnership with renal dieticians.

And they told us, "These are things that we need and these are the things that are important to us, and these are the things that will help us work with our patients who are struggling eating with kidney disease." So those were designed by people who do this every single day and also become involved. We have so many opportunities to be an ambassador. If you want to help advocate for legislation, we have those opportunities. If you want to be part of a focus group when we're developing some new materials, we do those all the time. We want to hear from you. And there are just so many different things that we have on our website that are for patients, for providers.

We have guides for providers too. We have different things around conditions like gout and anemia. And we hear from providers, "This stuff is great. I wish I could just give this to my patients." Well, it's right there. We've got it for you. Encourage them. And if you're a patient, take it to your doctor. Those are the things that I want to close with. I'm just talking about a lot of things because I get very excited about the things that we have available to really help people that many people don't know about.

Richard Towne:
And we absolutely love and appreciate the excitement. And I'm sure [00:53:30] the countless patients that have seen a resource put together by you or the Kidney Fund are also just as grateful. As you mentioned before, people have talked about how these things can potentially be life-saving. So here on our part, we applaud you as well, and we applaud the Kidney Fund. And I just want to thank you. This has been a really in-depth, fantastic conversation. I think we could have gone on for hours more, but...

Melanie Paris:
I can definitely, it isn't just my job, and it sounds so cliche, but it really is true. It is my passion. I just feel very passionate about talking to people about preventing kidney disease, slowing progression, and doing what I can to make the experience for people living with kidney disease. Though it's difficult, a little bit better.

Richard Towne:
And that's amazing. So with that said, we'd like to close out this episode of Talk of the Towne. Thank you so much, Melanie, and hope you have a great day.

Melanie Paris:
Thank you.