Ending polycystic kidney disease. Interview with PKDO founder Richard Kellner

Richard Kellner is on a mission to end polycystic kidney disease (PKD), a leading cause of kidney failure in younger people. The key is combining  pre-implantation genetic testing with in vitro fertilization to prevent the disease from being passed from parent to child. The PKD Outreach Foundation, run by Richard is raising awareness so that physicians and parents-to-be know about this option. PKD Outreach is also making testing and IVF more affordable and accessible through a partnership with US Fertility and by making cash grants to families.

In addition, PKD Outreach is  publicizing ways to slowing the progression in young adults with lifestyle and drugs, and supporting live kidney donation.

Richard has a compelling personal story. His late wife passed away from PKD, even after receiving a kidney donation from Richard. His adult kids have it, too.

I like the organization's mission and determination so I decided to donate. You might want to do the same.

Host David E. Williams is president of healthcare strategy consulting firm Health Business Group. Produced by Dafna Williams.

Transcript

0:00:01 - David Williams
Polycystic kidney disease is a leading cause of kidney failure and it can be passed down from parents to children, but pre-implantation genetic testing combined with in vitro fertilization bring the promise of ensuring that PKD is not transmitted to the next generation. Hi everyone, I'm David Williams, president of strategy consulting firm Health Business Group and host of the Health Biz podcast, a weekly show where I interview top healthcare leaders about their lives and careers. My guest today is Richard Kellner, founder of the PKD Outreach Foundation, which is on a journey to end polycystic kidney disease. If you like the show, please subscribe and leave a review. Richard, welcome to the Health Biz Podcast. 

0:00:40 - Richard Kellner
Thank you for having me, David. 

0:00:42 - David Williams
Great. I really appreciate the work that you're doing. We're going to talk about that. I want to talk a little bit about your overall background, how you got into this. Just curious about your background what was your childhood like? Have you had childhood influences that stuck with you throughout your career? 

0:00:59 - Richard Kellner
Yeah, specific to PKD. The PKD comes from my wife's my late wife's side of the family. We met when I was 20 years old and I first learned about PKD. We had been dating for a couple of weeks and she brought me home to meet her parents and her mother was on home dialysis in between kidney transplants. So her mother had PKD. So I started learning about it at a young age and I got married, engaged at 21, married at 23. And you know, when I got married I knew one day that you know that Joanne's kidneys would fail and that I would donate a kidney. And you know that's what I did. So my history with PKD started pretty young. 

0:01:54 - David Williams
Yeah, and what have you done? I know we're going to talk about the PKD Outreach Foundation, but what has been your professional path? 

0:02:02 - Richard Kellner
So I started my career as a CFO, coo in the physical commodities trade, very risk management and operations intensive, and I now I'm in a second career for the past 20 years on the risk management and insurance side, you know, also very focused on on execution, getting things processing and getting things done. 

0:02:25 - David Williams
Well, it's certainly helpful when you're going to start up a foundation and try to get things done, and there's some pretty big goals that are on the list there for the foundation, so I'm sure it's been helpful to have that type of background. 

0:02:38 - Richard Kellner
Yeah, absolutely. I've had a career of taking on things I had never done before, so this is kind of what I'm used to and I'm excited about it, all right, so let's start with what is polycystic kidney disease? 

0:02:56 - David Williams
I'm just going to guess that it's a disease of the kidney that involves multiple cysts, but that's about all I can tell from the title. 

0:03:03 - Richard Kellner
Yeah about all I can tell from the title. Yeah, so polycystic kidney disease is a genetic condition that causes cysts to grow on your kidneys. So the cysts are somewhat microscopic at birth, but as you get older the cysts get bigger and eventually, depending on the family history, the cysts get so large that they eventually cause kidney failure and in the most common form of it it will cause kidney failure by late 40s, early 50s, requiring dialysis and transplant. 

0:03:43 - David Williams
Now is this something that's? It sounds like it's not ultra rare, but it's also not so common. How many people are we talking about that are affected? 

0:03:52 - Richard Kellner
So there's 600,000 cases of PKD in the US, A lot of them undiagnosed, right? The PKD Foundation has some pretty good statistical models that help us determine that 600,000 number. So it is hardly an orphan disease and it is the largest cause of kidney failure for people under 50. 

0:04:16 - David Williams
What is the, you know, sort of the so-called natural history? What typically happens? You sort of mentioned it that you may have these microscopic cysts at birth and then at a certain point in your 40s or 50s, it may become, you know, fairly severe. What sort of tends to happen to people? 

0:04:31 - Richard Kellner
Yeah, so you know again. You know, when I met my wife, you know she had been diagnosed. In a sonogram they could see the cysts relatively small, yeah, you know, went through our 20s, our 30s. It was a non-issue, no impact on kidney function. But as she got into her 40s they started monitoring it more closely. And by 47, she needed a kidney transplant. 

0:05:04 - David Williams
And how. You know how has the understanding of PKD changed over the years? Was it the sort of the same view 30 years ago about what you would do if you had it as it is today? 

0:05:16 - Richard Kellner
You know. So it's an interesting thing because 30 years ago they all the doctors, would tell you hey, there's nothing you could do about PKD until your kidneys fail, and then it's dialysis and transplant. Interestingly enough, that is still the conventional wisdom among most doctors, even nephrologists that are not specialists in PKD. That's still what they're teaching in medical school. I have a daughter-in-law and very good friends. You know they've graduated med school. You know, four years ago, and you know med school they taught them that with PKD there's nothing you can do. You know, wait till kidney failure. But when you start talking to PKD specialists the nephrologists and they're rare but they exist there are things in terms of therapeutics, diet, lifestyle that can be done to slow the progression, but there's still no cure. 

But the most important thing that's been around for over 25 years that's not spoken about enough and well-known enough, is that with in vitro fertilization and pre-implantation genetic testing, they can evaluate which of the embryos don't have PKD and only implant those. And I forgot to mention PKD is a dominant gene genetic condition, so 50% of the embryos will typically have PKD. So without this testing there's a 50% chance that each child will have PKD. With this additional screening they could basically reduce the risk of passing it on to future generations to virtually nothing, and then that next generation. They don't need to think about it because they won't have it. They won't be at risk of passing it on to their future generations. So it is truly parents that become aware of this that have the access to it. They could end this generational suffering in their families. 

0:07:47 - David Williams
Yeah, well, that is. You know, normally we hear about people trying to put an end to something. It's very difficult. It's more the incremental kind of an approach. You know, here's something that actually could work. This is almost 100 percent of the time, if you can actually employ it, if you can actually employ it. 

0:08:04 - Richard Kellner
So I understand why that's the focus. There's a lack of awareness and then, obviously, a lack of access, because in the in vitro the genetic testing is not always covered by insurance. So we're both A working to help create the awareness and, david, I appreciate you're helping us do that part of it today. But we also help create the awareness and, david, I appreciate your helping us do that part of it today. But we also help with the funding for families that don't have insurance to cover it. 

0:08:32 - David Williams
Sounds good. All right, we'll talk about that in a minute. So there's three main thrusts of the foundation as I understand it. One is live kidney donation. You said that when people get to the point of progression where they need a new kidney dialysis, you can do that. But kidney donation is good, slowing progression if you've talked about that and then ending PKD in families, which we'll talk about in more depth. On the kidney donation side, you mentioned your late wife. Of course I'm sorry to hear that Kidney transplant generally could work pretty well, but what's the? What's the? You know what's the? What happens when someone with PKD gets a kidney transplant? Is the kidney, is it the same as anybody else getting kidney transplant or what? What is? 

0:09:17 - Richard Kellner
it? Yeah, it's, it's pretty, it's pretty much the same, right? So you know kidneys fail. So you know kidneys fail. You know you find a donor, you get a deceased donor, and then it's great, but it's not a perfect solution, right? It's a lifetime of immunosuppressants, right? And you know, unfortunately, those immunosuppressants, um, you know, eventually, eventually can take a toll. 

0:09:48 - David Williams
Yeah, Now on the slowing progression side, you mentioned that that a bit. How early. When you talk about slowing progression, as you mentioned in the twenties and thirties, it was really kind of a non-factor. Would there be things that people in their twenties and thirties would be doing now? 

0:10:03 - Richard Kellner
Yeah, absolutely, absolutely. 20s and 30s would be doing now ideally. Yeah, absolutely so. There are definitely dietary changes, right in terms of controlling sodium protein oxalates. That, again, are not common knowledge, but amongst PKD specialists they talk about that. There's a dietary supplement called Ketocitra that we believe is promising. 

But you know, so, the most important thing that we think for young adults, you know, if you're in your 20s and 30s and you have a family history of PKD, getting under the care of a PKD specialist nephrologist, we think is critical because they can then help guide you with regards to diet and the therapeutics that that are available. But you know, I have a 28 year old and a 30 year old that both had PKD and if they were to do nothing, you know, I have a 28 year old and a 30 year old that both had PKD and if they were to do nothing, you know, you know, their grandmother's kidneys failed before she was 50. Their mother's kidneys failed before they were 50. That's, that's their outcome. We are hopeful with some of the dietary and lifestyle changes that they're making. You know that. Maybe you know they get an extra 10 to 15 years out of their native kidneys, which could be life-changing. 

0:11:32 - David Williams
So let's talk about this initiative about ending PKD in families and we talked about it's basically pre-implantation genetic testing with IVF. So in IVF you're creating these embryos and then implanting them and then, as typically as IVF is done, there's multiple embryos and then the testing is reasonably straightforward. 

0:11:52 - Richard Kellner
Yeah, so even before you start the IVF they'll develop what's called a probe Right, so they will identify the gene in the parent with the PKD. So you'll know before you even start the in vitro process whether they've developed an effective probe that would allow them to compare the embryos against the probe and identify which of the embryos don't have PKD and then only implant those. 

0:12:29 - David Williams
Got it, and is that a straightforward thing you could expect to have a probe that works, or is that a point of failure as well? 

0:12:40 - Richard Kellner
There's a family history of PKD rather than a de novo case, family history of PKD rather than a de novo case. The probability of having an effective probe is in the high 90% and, again, you'll know if you have a successful probe pretty early in the process. If you're a de novo case, where you're the first one in your family to have it, yeah, um, which is less than five percent of the cases, there's still a high probability that they'll be able to develop an effective probe. But it's it's. It's more. It's more complicated, more, more involved and, um, the success rates are not quite as quite as high. Again, even before you start the expensive in vitro process, you would know if you have an effective probe. 

0:13:29 - David Williams
Got it All right. So let's say you have an effective probe that's going to be high 90% of people and then when you're testing the embryos my elementary genetics is right then about half of the embryos are going to be ones that you would want to implant and half are ones that you're that you're not going to want to. So so it's. It's not like you're knocking out 80 or 90% of them, it's just you've got half to work with. 

0:13:54 - Richard Kellner
That's correct, yeah. 

0:13:55 - David Williams
Okay. So it's now become scientifically more feasible to do this, and the and the genetic testing is a lot less expensive and more refined than it was. Ivf is still expensive. You've got this new partnership with US Fertility, so why I mean first of all, why do you need a partnership, as opposed to just telling people hey, this is available, go do it? 

0:14:16 - Richard Kellner
Yeah, well, I mean, the most important thing with the partnership with US Fertility is A. They have a national footprint, so they're pretty widespread throughout the country and they're offering, you know, for families that are participating in our grant programs, they're offering a 20% discount on the out-of-pocket costs. So with our grants and their discounts we're basically decreasing the cost. You know, again, it differs a little bit by part of the country, but roughly from $30,000 to about $15,000, which again won't put it in reach of everyone, but we'll certainly get it in the reach of many more people. 

0:15:07 - David Williams
And what is the source of the grant funding? 

0:15:12 - Richard Kellner
I've provided a lot of funding for the initial funding for PKDU myself, but it's been largely of friends and family. But we've got a substantial amount of funding available and you know our goal is look, we'll get the first on our backs, get the first hundred plus babies born without this disease over the next couple of years and then, you know, hopefully then we'll start getting more of those families contributing and potentially some institutional funding for this. 

0:15:54 - David Williams
Sounds good. Okay, so you make it more. First of all, you let people know that this is doable, you make the funding available. You've got the partnership of somebody that can actually understand what to do and can pull it off on a national basis and the goal of a hundred or some babies in the next couple of years. Is that the rough scale that we're talking about? 

0:16:17 - Richard Kellner
Well, we've got committed funding for the first hundred Yep and when we launched the campaign, we launched it as our 100 PKD free babies campaign. We already have over a hundred families in the registry. So you know, and again, you know the cycle from time somebody signs up into the registry, starts exploring, it goes through the process. You know it takes time. Right, nine women can't have a baby in one month right from the initiative, because we are certainly not stopping at 100, but we've already got the enrollments and now, within the next 24 months, just based on the work that we've already done, there'll be over 100 babies through this program that are PKD free. 

0:17:13 - David Williams
Oh, that's great. Are there other initiatives like this, maybe other inherited diseases, where people are doing something similar? I don't know if US Fertility has got other foundations that they work with in a similar capacity. 

0:17:25 - Richard Kellner
I'm not fully versed on it. I know there's another organization that we've taken some guidance from called B'nai Olam, which is focused on recessive genes in the Orthodox Jewish community. So this is clearly something that has been done before. And the interesting thing is, if you go to your OBGYN with a family history of a disease like Tay-Sachs or BRCA, your OBGYN is going to tell you go get genetic testing. There are things you could do to prevent it from being passed on. For some reason the OBGYNs have not been educated to realize that PKD should be on that list that they tell their patients, oh, you should go to get genetic testing for. But we're here to change that. 

0:18:24 - David Williams
Good yeah, it sounds like certainly a worthy goal and one you could actually see it possibly happening, to the extent that anything happens in the American healthcare system. It seems like you got a shot at it. 

0:18:34 - Richard Kellner
We're not doing something that hasn't been done before with other diseases, right? And you know, people have asked me well, how come it's not being done with PKD? And I'm like, well, you know what the other diseases? It started with somebody at an organization turning around and saying we have to stop this. So we're at the beginning of the end for PKD because we're you know, we are determined to make it happen. 

0:19:02 - David Williams
Great, so what is your level of optimism about the future as it relates to PKD? 

0:19:11 - Richard Kellner
I have no doubt that we're going to make that, that we're we're going to make this happen. You know, we've we've already got traction, we've got momentum and it's. It's really just a question of of it takes time. 

0:19:27 - David Williams
Good. My last question for you could or could not be related to what we've just been discussing, but whether you've had a chance to read any any good books lately. Anything that you might recommend for the audience? Um? 

0:19:41 - Richard Kellner
I, you know, I wish, I wish I had a great answer for that, but I will. I will tell you, between um, between PK do, and the time that it puts um, my, my, my other two businesses that I run, and I recently remarried with three grandchildren and one on the way. I do not have the time to sit down and read a book, but one of these days I'll get there. 

0:20:11 - David Williams
Okay, I think that's a good answer. I sometimes also ask about if you have any books to recommend that we avoid, but it sounds like you haven't had a chance to read any bad ones either. 

0:20:22 - Richard Kellner
I've got plenty of other things that are keeping me super busy. 

0:20:25 - David Williams
Good Well, Richard Kellner, founder of the PKD Outreach Foundation, which is called, I guess, PKDU, on a journey to end polycystic kidney disease. Thanks so much for joining me today on the Health Biz Podcast. 

0:20:37 - Richard Kellner
Thank you, david, appreciate it. 

0:20:40 - David Williams
You've been listening to the Health Biz Podcast with me, David Williams, President of Health Business Group. I conduct in-depth interviews with leaders in healthcare, business and policy. If you like what you hear, go ahead and subscribe on your favorite service. While you're at it, go ahead and subscribe on your favorite service. While you're at it, go ahead and subscribe on your second and third favorite services as well. There's more good stuff to come and you won't want to miss an episode. If your organization is seeking strategy consulting services in healthcare, check out our website healthbusinessgroupcom.