Episode Transcript
[00:00:03] Speaker A: Welcome to power to the Patients, a LinkedIn live and podcast series hosted by Power, where clinical research leaders across sponsors sites, CROs, and patient advocacy groups discuss patient centricity in clinical trials. We explore the bottlenecks in today's system, challenge the status quo, and talk about future opportunities for innovation. Let's dive in.
[00:00:30] Speaker B: All right, we are live on power to the patients. So for this week's podcast, I'm really excited to have Robin and Dave Dubin from the Alive and Kicking foundation. It's focused on Lynn syndrome advocacy. Excited to have them here. Dave and I met at ASco earlier this year. We share a lot of things in common. So wanted to have him on the podcast, along with his wife Robin, to speak about all of the great work that alive and kicking is doing. So, Robin, I'll let you introduce yourself first, and then we'll move to Dave.
[00:01:10] Speaker C: So I am Robin Dubin. I am the founder and executive director of Alive and Kickin. We are a Lynch syndrome patient advocacy organization.
I am also the wife to Dave, who is a three time cancer survivor and lynch syndrome patient and as well as two of our lynch positive sons. And that, I guess, is where we start.
[00:01:37] Speaker D: I think she covered my role.
So, yes, I am Dave Dubin. I am also the co founder of Alive and Kickin. Along with Robin, I am the one who also carries the lynch syndrome mutation that we have passed along to a couple of our children. And my history with cancer does go back a number of years, back to the late nineties for the first time, but currently doing well and looking forward to the conversation.
[00:02:08] Speaker B: Fantastic. Thank you. Thank you for being here. So let's, let's start with, you know, maybe the basics. You know, we are very familiar with what the Lynn syndrome is and, you know, as context for everyone on this podcast. I'm a Lynn syndrome survivor as well, runs extensively in my dad's side of the family, has affected multiple relatives. I'm fortunate to have discovered, obviously been diagnosed and treated in New York City, where I had obviously access to the best care in terms of understanding what a diagnosis like this means for our family and how to really take care of it. But let's start with the basics. So maybe, Robin, walk us through, like, what is the syndrome? Like, who does it affect? What does it mean? Like, you know, what does the lifetime risk mean? All of that stuff.
[00:03:01] Speaker C: Lynch syndrome is a group of hereditary cancer gene mutations that predispose people to high risks of cancer, primarily colon and endometrial cancer, but variety of other types of cancers as well and depending on which of the five lynch syndrome genes an individual has, will inform the risks, the lifetime risks, for different cancers. So they've gotten to the point where the research is deep enough to understand that the risks of different types of cancers vary between the five different genes. These genes are what they call autosomal dominant, which means you have a 50 50 chance of inheriting it from one parent. So if one parent has a gene, any children have a 50 50 chance of inheriting it. So it does run in families. And similar to yours, you often see families with a cancer history going back multiple generations, spanning multiple relatives, and a lot of early onset cancers, which means at a much younger than average age for cancer. So, for example, Dave was 29 the first time he had colon cancer. It was back before we really even knew what lynch syndrome was. And it, with many people, it's often not until someone in the family is diagnosed with an early onset cancer that the family history is discussed, and they recognize the need for genetic counseling and genetic testing to diagnose it.
[00:04:45] Speaker B: Also, in your intro, you did mention that I think it was two of your kids have the mutation. What does it mean for them? And what age do you, for lynch families where you have a child with the syndrome, what does it mean on when they start screening?
[00:05:07] Speaker C: Some of that will depend on which of the gene mutations you have, because more recent research has really risk stratified the screening recommendations and guidelines for the different lynch genes, but they typically do not do genetic testing on someone with an affected family member until they are at least 18, because lynch syndrome is considered an adult onset condition. And depending on which gene runs in the family, cancer screenings, annual cancer screenings can start as early as 20 to 25 or 30 to 35, depending on which gene. The primary cancer screenings that start happening earlier are usually colonoscopies to be watching for colon cancer. And those are done every one to two years according to the guidelines. So, yeah, all three of our children had their genetic testing with genetic counseling at 18 years old, and two out of three of our children tested positive. So they're what we call previvors. They have the genetic predisposition to these high risks of cancer, but they have never actually had cancer yet. And all convoy. Yes, yes, definitely. And our oldest son, who is now 28, has had ten annual colonoscopies since he got his lynch syndrome diagnosis. He sees a high risk oncologist, and they do other cancer screenings as well throughout the years, depending on which gene and what kind of family history you.
[00:06:53] Speaker B: Have, maybe we can talk a little bit about the foundation. Right. And when you decided to actually start this to help patients and families and what's the primary work that you do?
[00:07:08] Speaker D: Yeah, it's one of those stories that if you could turn back time, you would do so. But in this case, you really. You can't. So as much as I had my first cancer in the late nineties, it wasn't until my second cancer in 2007, where I was initially diagnosed with lynch syndrome. And it was one of those things where, you know, we knew the cancer ran in the family, because similar to what you alluded to, it ran on my father's side. My father had cancer three times, my grandfather. So the history was there, but really, no one was talking about lynch syndrome and genetics until after the two thousands. So when I was diagnosed with lynch, and we sat down with the genetic counselor and also with our, you know, my GI doctor, and we saw the statistics, or were told the statistics, which at the time were about one in 500 Americans having a Lynch syndrome diagnosis and us not knowing about it. And we had always been in the medical field, as, you know, as a business, as professions, and we're not clinical, but we were in this, and we did not. We had no awareness of what lynch syndrome was or the prevalence. We felt it incumbent upon ourselves to take the initiative and similar to what you're doing is really work, is to work towards, you know, moving the needle in a certain way to change this, especially since it was warranted. I mean, the name alive and kicking does come from my love of soccer. I was a soccer player. It seemed like an apropos name, and so far it stuck. But, you know, that's why we did it. If there wasn't a need for it, we wouldn't have done it.
[00:08:56] Speaker B: Thank you for sharing that. What has been, like, one of the biggest challenges as you're working to raise awareness. Right. I mean, on Lynn syndrome, where do you start?
[00:09:08] Speaker C: Yeah.
So one of the biggest challenges, really, is that it's actually extremely common, yet most people have never heard of it. The current statistics are one in 279 individuals has a lynch syndrome mutation, and 95% of them do not know they have it. And the reasons for that is there's not enough family medical history, conversations happening both within families and between individuals and their providers. There's not enough referrals to genetic counseling and genetic testing happening. And so one of the things that we focus on with alive and kick in is educating patients and the public, amplifying patient stories to get awareness out there and working towards getting awareness both in the patient community and the general public, but also in the research and clinical community, because there's a lot of doctors out there that don't know very much about it.
[00:10:14] Speaker D: Well, I think that's it.
It comes down to awareness, it comes down to funding. It's a crowded world, and cancer is a crowded space. And it takes a certain breakthrough moment to reach the top, to get to the top of the pile of stuff. And we've been plowing along and continuing to raise the awareness and amplify the voices, as Robin alluded to, so that when the time comes to actually get to the top of the pile, we're there because the numbers are going to be there. We already know it. We already see it. It's just a question of having that pivotal moment to get lynch syndrome to really reach that level that we know it's warranted.
[00:11:01] Speaker B: What have you seen to be most effective in actually educating patients families about the implications of the syndrome?
[00:11:11] Speaker C: A few years ago, we started by engaging patients to become advocates. We host an annual living with lynch patient workshop where we do patient education, we do advocacy training, and we do content creation in the form of a series of educational videos. And then we utilize that video content both on social media and through a series of virtual patient community discussions where we have genetic counselors and other genetics professionals as moderators. And then we offer those community discussions as further content, along with the podcast that Dave does, where we've developed a library of several hundred episodes of interviews with patients, clinicians, and researchers in the lynch syndrome space. So we continue to build on our educational content by continuing to bring groups of patients together, educating them, and preparing them to be advocates to get out there and talk about Blanche syndrome.
[00:12:15] Speaker B: How do you interact with some of the larger biopharma biotech companies that are pursuing research in this space?
[00:12:24] Speaker C: We actually feel kind of very fortunate in a way that, because this is a fairly large patient population, there is a lot of research happening, and there's a lot of exciting research happening between cancer vaccine lynch syndrome, cancer vaccine. There are several clinical trials happening right now with that. Immunotherapy has been a game changer for lynch syndrome patients. A really pretty large percentage of patients that are exceptional responders to immunotherapy are lynch syndrome patients because of their tumor biology and the makeup of their tumors. And then there's a lot of diagnostic work happening in different areas of testing and screening for cancer. So we kind of look at all of that, and we engage a lot with both industry and academic researchers as partners in almost everything we do, every program and project that we put together for the patient community, involves multiple stakeholders and multiple partners in both industry, other advocacy organizations, clinical researchers, and academic institutions, because we can't do it alone. And we've really developed a strong network of partners that are. It's really, they're a good group of people to work with, and they're really encouraging in helping us to put together the programming that we do.
[00:14:06] Speaker B: Yeah, yeah. No, you bring up a great point on the work that's happening within the syndrome. I remember when I was diagnosed, I was in my early thirties, wondered why I had this sort of luck of the draw being diagnosed so early. But I remember one of the things my oncologist told me, she was like, with this syndrome, we've seen people respond better to treatment.
[00:14:32] Speaker D: Right?
[00:14:33] Speaker B: It was conventional chemotherapy. It was full fox at that point of time, but been keeping track of what has been happening in research since. I think it was in 2017 that lynch syndrome was the first kind of genetic mutation where the FDA approved a tumor agnostic immunotherapy, irrespective of where the tumor originated. There's a silver lining there, obviously, since then, last year, 2022, had the incredible trial that happened at Sloan Kettering for rectal cancer, which had incredible response rates, complete response rates. And as you rightly said, now immunotherapy now is becoming standard of care if you have microsatellite instability high, or DMMR, as Lynch is called.
I read this article, right? I mean, I think it was a year ago I saw Dave's face on this article about the cancer vaccine. Right, with your son. So, Dave, tell us about this cancer vaccine for the lynch syndrome. And how can I sign up?
[00:15:43] Speaker D: Well, first of all, I apologize for my face being on the COVID of this article. I mean, I don't wish that on anybody. And if we're trying to attract more people to this, I'm not sure I should be the face of this.
So Rob McKenna really could talk further about the vaccine, because it is an exciting time and one of the best anecdotal stories that I can add to this. And Serenivus, I know that we've talked about this, and man, I wish we could turn back time, but with our youngest and his lynch syndrome diagnosis, when he first received it, the comment, that comment is not the word for it. The advice, if you will, and the positive component to the lynch diagnosis was that our oncologist said that he's going to see not only a vaccine in his lifetime, he's going to see the vaccine in his father's lifetime. So that's the best way I can spin this. And I think it's something we can all look forward to when it comes to the trials that are taking place. I'll be honest with you, I just drew a blank on what the question was originally, but we'll be happy to answer the details.
[00:17:05] Speaker C: The details. That's where I come in, I guess.
[00:17:09] Speaker D: See, we're very compatible.
Sort of wait till after this ends. Maybe we won't be as compatible for now. We're compatible.
[00:17:19] Speaker C: Yeah. So there's. There's actually several clinical trials going on right now. Phase one and phase IIB clinical trials for lynch syndrome vaccines. They're neoantigen vaccines, and they're at several different sites and locations. I know MD Anderson has some. I think they've almost completely enrolled because it is a small trial. But there's, in Kansas, they're opening up several more sites for several others. So they are still early on, and they're primarily testing for safety and efficacy right now. But they are all in the works, and it really shows promise in being able to prevent cancer in patients with a Lynch syndrome gene mutation.
So we don't know how long those trials will go on or how long they'll take to get to a point where everyone can have them, but there are ways to find them and ask. Probably asking your doctor is the best way to start. But we know people who have enrolled or are in the process of enrolling in those trials, and it's. It is pretty exciting and could make a huge difference.
[00:18:37] Speaker B: Yeah, yeah.
Maybe a plug here. Right? Like, I think one of the. One of the reasons we are building power is to help patients connect with clinical trials like this. It leads me to a broader question, which is, I think it gets back to a point around 95% of patients diagnosed, or patients who are people who may be carrying the mutation, not being aware of it. Is there anything that your foundation does when people get diagnosed with colon cancer? Because I would think that if you're younger, probably a genetic testing makes sense. The doctor thinks about it to say, oh, it's an early onset colorectal cancer. We should probably get this sequence to see if there are any mutations. But for older patients, how do you actually increase that awareness?
[00:19:29] Speaker C: It's tough, because not only do you have to increase the awareness within the general public, but like I said, there's a lot of doctors that don't know that much about lynch and about genetics, and it often takes an early onset colon cancer or early onset other type of cancer. And before doctors start connecting the dots within the family and asking about family history and doing some of the tumor testing to determine if they think that there may be Lynn syndrome in the family and then referring them to genetic counseling and testing. So the majority of people are still getting lynch syndrome diagnoses after a cancer diagnosis, which is one of the things that we hope to change is by getting out there, educating the public, educating the clinical community, we can start to get more people diagnosed before they've had cancer. That's one of our goals. And I think having a lot more resources at hand in terms of the care, treatment and screening, like immunotherapy, like potential vaccines, are going to hopefully move the needle, like they've said more in getting more people genetic testing. A lot of times I think it takes having something actionable you can do to prevent cancer if someone is diagnosed, to get to the point where genetic testing is even more common. And it doesn't take nearly as strong a family history for people to get genetic testing, because we do know that an awful lot of people end up getting diagnosed with a hereditary cancer gene that don't have a strong family history. They only have a slight family history, perhaps, or they don't know their family history. And so we do miss a lot of people by focusing mostly on the ones that have been diagnosed with cancer. But it's going to take a lot more actionable things to do, like vaccines and prevention and better screening tools before it's so commonplace that everyone gets genetic testing done.
[00:21:56] Speaker B: I feel like Lin still has some way to go before it attains, like maybe what Broca today is for breast cancer, right, where maybe more people are aware because of all of the awareness and education that has happened on breast cancer over the years. Robin, a follow up question. You spoke about educating the clinical community. Right? Like, how does your foundation try and achieve that?
[00:22:23] Speaker C: So that's actually a pretty difficult thing to do. We spend a lot of time working with clinicians and researchers in the space, and it's a question that they're asking as well. And there's always at conferences and medical conferences and society professional conferences, they're asking, how do we go do a better job of that? So some of it is going out to things like speaking at medical schools, speaking at genetic counseling programs. Dave gets invited a lot to speak to the students in genetic counseling programs and things like that. We speak at a lot of patient symposiums, but there's only so much time in a day that, like, prime, you know, at the primary care level that the doctors have the opportunity for education about things like this. So it's tougher when it gets to that point. I hope that in the future, there's more capabilities in terms of clinical decision support tools and platforms that can help guide clinicians through the process of collecting family history from patients and understanding if patients may need a referral to genetic counseling. So that things like that can happen much earlier in a patient's life before they get cancer, but also much earlier in the process of, you know, if everybody had family history in their electronic medical record, we would be able to find those people a lot easier and get genetic testing done before they have cancer. So there's a lot of different ways that we are continuing to move that needle and work with the different communities, research, clinical patient communities, to just keep making a difference and changing those numbers of people that know they have this.
[00:24:37] Speaker D: Yeah, I would say that we like to look at things in terms of time. So you look at when genetics was first a topic of conversation. You know, the common theme is that it cost a billion dollars to sequence the first, you know, do the first genomic profiling. And as time has gone on, you look at how, just taking lynch as the example, you went back in the day, you would get tested for five mutations, and the cost was 1520, $25,000. And then as time would go on, the cost to sequence became so much less expensive, and the ability to sequence much larger reads and longer sets, you drove that cost down to a point where it wasn't necessary to have to meet, let's say, Bethesda criteria or NCCN guidelines or have genetic testing, you know, germline testing. But you could have more people nowadays who are comfortable spending $200, $250 out of pocket to run their own germline testing, even if they don't necessarily meet criteria for insurance coverage. So that's a shift. And we're also, you go further than you're talking about somatic tumor sequencing, and you're talking about a number of different methodologies for sequencing and learning. It's going to be an evolution. And I think what we're going to see is just like everything else in the tech side, you're going to see more and more information become more available. You're going to see become less expensive per capita to run these tests. And the goal, hopefully, is to have much more of a larger data set to enable the research to take place. Then we're going to see things popping up that are going to be herculean change. And we're just excited to be in the middle of it.
[00:26:35] Speaker B: Does your foundation today focus specifically on the US, or do you also do work outside of the US?
[00:26:42] Speaker C: It's primarily in the US, but we have had advocates come from the UK, from Canada to participate in our events. There are other international organizations in some other countries that are. That do Lynn syndrome advocacy work in the UK, Australia, several other countries. I know Dave has interviewed on his podcast several international researchers that are working in.
In the space.
[00:27:15] Speaker B: Yeah. You know, when I was diagnosed, you know, one of the things my treating oncologist and genetic counselor did was help me identify, right? So my large portion of my family, dad's family, live in India, so they asked me to assemble my genetic family history, which until that point of time, we had never really thought about doing. But given my diagnosis, it was a catalyst to actually, like, try and piece the information. And it's actually pretty incredible. Right. When you look at that genetic family tree, like, the pattern is unmissable. You're like, wow, you know, there has to be like, you know, if we had done this, you would have seen, like, so many branches in the family being affected by cancer. And then the second thing that, you know, my genetic counselor did was give me a report that I could share with family on what my diagnosis was, what it affects, what lynch is, in patient friendly terms. And then in India, identifying at that point of time, all of the centers where they could get reliable testing to establish if they were carrying the mutation or not. Brings back to one of the comments I made, which is some members in the family chose to do it. Got a clear answer. Some members in the family didn't want to do it. And, yeah, it's. Yeah, that's. That's just how families are.
[00:28:45] Speaker C: Yeah. And every family, you have those stories. And at every single one of our patient workshops, there's always a conversation revolving around, how do I talk to my family? How do I convey this information to them, and how do I convince them that this. This is important for them to know? And because every single family goes through that, whether it's lynch syndrome or other topics, you know, it's sort of like, you know, religion and politics. It's one of those touchstone topics. When you're talking about everyone's personal, medical, you know, information and the way they take care of themselves, everybody kind of reacts differently, and it's tough to navigate that part of it. We are constantly being asked, how do I go about doing this? How do I convince so and so to get tested? Things like that, and we try to just provide them with the best and most accurate information and, you know, work with them to help teach them how to tell their story to their family members that won't be so upsetting that they don't want to hear it.
[00:30:02] Speaker B: You know, maybe I'll play that question back to you, Dave, in your instance, right. How did you communicate it to your family? Right. So obviously there is family outside of your unit, but I'm also interested in, like, getting a sense from when did you communicate it to your kids?
[00:30:20] Speaker D: We're very open with our children in terms of how we discuss lynch syndrome and pretty much everything. We're very, obviously, it's age because there is an age range between the three boys. So they've only known me as a survivor. So that part is just out there. There's not much that's not going to change. You know, I've maintained a level of activity that most people my age don't. So there was never an idea in their mind like that this was going to be the end. This was not the proverbial death sentence, and we never treated it that way. And this goes back to, again, my, my grandfather both lived well into their eighties, passed away just before age 90. So it was always almost an embracing of this is what we have, and this is what we do. It's not just another roadblock, but it's a roadblock.
Part of life is going around or going through these, that this is what you do, whether it's lynch syndrome or some other diagnosis. So that's the way we've approached it with them, and they've been very open with us as far as asking us questions. They've seen me go to for annual screenings, or as I call them, quarterly annual screenings because of multiple physicians.
And this is just what we did. Now in terms of talking to the general public, obviously, with being in the public eye with that as we are, we do have a lot of public speaking components, and it's going to make Robin crazy. But after my second colon cancer, we made the decision to be open about what was happening, and we actually kind of invited almost the whole town to the first annual dave's not dead yet party.
We wanted this to be the conversation on our terms, so that we put it out there that this is what we're going through, this is what we're facing, so that others can learn from it. And if they have any questions, they can ask me rather than have it be some sort of a rumor mill or any other something that we couldn't control the narrative.
[00:32:34] Speaker B: Incredibly inspiring.
[00:32:36] Speaker D: How can I. Robin agrees.
[00:32:40] Speaker B: How can anyone get involved or support your foundation, right? I mean, this is really inspiring.
[00:32:45] Speaker C: The organization is called Aliveandkicken, and that's spelled a l I v e a n d k I c k n. So you can go to aliveandkicken.org. we have our website, we also have our other website, livingwith lynch.org, which houses a lot of the video content that we mentioned. And we're on social media, Facebook, Instagram, and Twitter. And we put a lot of information out there. We send a lot out in terms of whenever there's new research published that usually goes out on Facebook and Twitter. And whenever we have things happening, it goes out on social media as well. So that's where you can get the most up to date information. Our website has a lot of resources besides videos.
We have handouts that you can download. We have the guidelines, the screening guidelines and recommendations listed. We've got partners and other organizations that we work with that have resources as well for our patient community. And, yeah, that's where you can find us.
[00:33:59] Speaker B: Amazing. Now, thank you for building this organization and spreading the word on this syndrome, because it's a lot more people likely have it. Families are thrown in disarray when you get the diagnosis, but knowledge is power.
Living with Lynch, I know that I'm going to get screened every year, and if there's anything, it's going to be caught earlier. There's all of the silver lining on the research that's happening. It just makes you a grateful for the time you have, obviously, and I don't mean it in a fatalistic way, but just being thankful for every moment you get, but also knowing that, you know, you're in charge of your health and you can be proactive about it. And that's really the way to live, right? So thank you both for joining this conversation. I really enjoyed it. So thank you, Dave. Thank you, Robin.
[00:34:55] Speaker C: Yeah, well, thank you, too. It's a pleasure to be here.
[00:34:58] Speaker D: Thanks for having us.
[00:35:01] Speaker A: Thank you for tuning in. If you haven't already, please follow power on LinkedIn. Sign up for our live events and engage with us in the conversation. We hope to have you join us next time on power to the patients. Take care.
