Global Liver Institute President & CEO Donna Cryer joins the Surfers to discuss the focus, passion and advocacy that have shaped and grown International NASH Day. Learn how IND started and what it represents today. As you listen, envision the role you can play in the future of Fatty Liver advocacy and education.
This is Louise Campbell from Tawazun Health and you’re listening to Surfing the NASH Tsunami.
Drug developers, investors, researchers, and corporate executives wrestle weekly to understand what is happening in commercial development of NASH medications. Join hepatology researcher and key opinion leader Stephen Harrison, C-suite veteran Peter Traber and forecasting and pricing guru Roger Green, as they discuss the issues affecting the evolving NASH market from their own unique perspectives on this week’s edition of Surfing the NASH Tsunami.
Roger Green (00:37): For everyone with an interest in NASH or more broadly fatty liver disease, Surf’s up. Because episode nine of Surfing the NASH Tsunami starts now. This is a really special week here at Surfing the NASH. This Friday, June 12th is International NASH Day, which makes this entire week IND week. To those not in the know, IND just happen to be the initials for International NASH Day. On today’s episode, we are immensely fortunate to be joined by Donna Cryer, the president and CEO of the Global Liver Institute, and really the person who founded the idea of International NASH Day. Donna will discuss the history of IND, the progress it’s making while some of our usual suspects in this case, Louise and Stephen discuss what International NASH Day means to us and the patients or the stakeholders we deal with daily. Donna please just say hi to our listeners so they hear your voice.
Donna Cryer (01:24): Hello everyone. Glad to be here today.
Roger Green (01:26): And we’re delighted to have you. Thank you. So last week we had a technical failure, which meant that we did not have Stephen on the podcast. This week, we have Stephen with us, but a severe storm in Pennsylvania deprived Peter’s house of power from last Thursday, until today, he wasn’t able to get a sufficiently high-quality connection. So we will be missing Peter this week. We look forward to having him back next week when for those of you recall, we’ll be going back to the diagnostics diagnosis series, Suneil Hosmane will be back. And we’ll also be joined by Dr. Mary Rinella of Northwestern University. So we have Stephen, we have Louise, we have Donna. I’d like each of you to do me a favor, start by talking about one professional highlight of the past week. Donna, why don’t you go ahead. You probably have the best highlight.
Donna Cryer (02:10): Well, in as much as you’ve given us International NASH week, the highlight for the week has been the way our team has produced at such a high level. Even from our remote locations, in our homes, in multiple countries to pull all of the events and activities together for International NASH Day. So it is a highlight every time I interact with our fabulous team at the Global Liver Institute.
Roger Green (02:38): Stephen top that – or not.
Stephen (02:40): First of all, I can’t top anything Donna says, so let’s just set the stage there. On a smaller note, one thing that as I look back through March, April, May, all the struggles we had with COVID and to some degree continue to have, I’ve been impressed with our ability within our summit research network, to continue to enroll NASH trials. And while there’s some debate about whether that should happen, I’m absolutely a proponent of pushing forward. Mainly because NASH patients continue to get ill. They continue to progress. We deal with lots of people with advanced liver disease and they need treatment for it. The argument that I make is we have some outstanding therapies that are in late stage development right now, that are really changing the way our patients feel function and survive.
Stephen (03:34): And while we don’t have long-term outcome data yet, I have PRO data that tells me these people are feeling better. And that data just comes from anecdote talking to the patients every day. That’s my professional win is, we’re continue doing to move the needle, despite all the challenges that exist. That’s my thought for the day.
Roger Green (03:51): And that’s fantastic. So Louise, I think you get an easier standard. All you have to do is come up with a better professional highlight than building your shed last week, what you got?
Louise Campbell (04:01): It was a shed that had slight benefits. I can do it this week because I’ve had some great time to look through some wonderfully informative and fascinating charity, patient advocacy sites, covering many of the metabolic areas where NASH and NAFLD covers and actually just being in awe of some of the great work that these charities and organizations are able to achieve often on such limited resources, has just been fabulous this week to spend some time doing that. So for all of the patients out there, there are some great opportunities and sites to spend time going through. So that’s my highlight and it is better. And it’s far less taxing than building the shed.
Roger Green (04:42): That’s good. I’m going to continue the theme in different ways, both Stephen and Louise have expressed, which is I’ve had the opportunity between Friday and Monday to talk with seven different companies that are either developing diagnostics or developing medications through the whole fatty liver space. I am blown away at the breadth of approaches that people are taking, the rationale behind them and the early data that people are finding that it looks truly promising and not in a well, “Gee, that’ll be okay if it turns three degrees to the left.” But things that really look good and make sense. I believe firmly that when we come back to this disease in five or 10 years, not only are you going to have international IND month, Donna, but you’ll have to have an IND month, because there’ll be enough treatment options and enough diagnostic options that will have a lot more to offer patients that help them do better. And we’ll have learned a whole bunch in the process.
Roger Green (05:30): I think it’s an amazingly bright future. Well, of that future, I will dive into today’s question. Today’s question is I think the most interesting question we’ve gotten yet, well, not to belittle anyone else who asked the question, but this one came about three pages long and was highly metaphoric and literarily referenced. It came from Jerry Colca, who is the chief scientific officer at Cirius Therapeutics. And before that, one of the developers of pioglitazone, so he’s a prominent space of the place. He went back two weeks afterwards, because he’d been thinking about it. So the what’s in the name discussion and said, “Gee, we might want to spend more time talking about this.” If you know Jerry, you won’t be surprised to give a thoughtful, thorough, detailed summary of our initial discussion on the topic.
Roger Green (06:11): And he then referred to a long ago, article from Dennis McGarry, but it was about the parable of Minkowski’s dog and why we originally defined diabetes as being an issue of detecting glucose in urine, which was because they were doing pancreatectomies on dogs. And one of the scientists, a fellow named Minkowski, his fingers tasted sweet and that was canine urine to see if gee, there’s sugar in the urine. Jerry’s comment was that if had McGarry because the article also smelled rather than tasted, he would have smelled acetone. Would’ve leaned towards fatty issues and lipid metabolism instead of glucose, eventually probably getting back to the same place. Jerry concluded the understanding of the metabolic etiology needs to be engaged in order to treat this disease state. He then went on to express the concern that focus on liver misses the point in most life shortening outcomes resulting from these diseases or cardiovascular events.
Roger Green (06:59): So on a week when we focus largely on NASH International NASH Day and the Journal of Hepatology and European Liver Patients’ Association produced papers and posters that focused more on NAFLD. Jerry brings us Minkowski’s dog, which raises an interesting question we haven’t answered. What should the focus of a name be? The liver, hepatitis, metabolic challenge, cardiovascular, whatever works with patients? I’m going to ask each of you to step in and maybe just 60, 90 seconds, if you were naming from the start now or start where we are, take your pick. What should the focus of the name for this disease be? Brave one first
Donna Cryer (07:34): I’ll start. This is Donna. I think I should start with the patient, the era where a doctor or a scientist or a group of doctors just decided that a disease would be called something, is not this era. So I think however we arrive at how we want to describe and discuss this condition or set of conditions as we’re starting to understand. The process to me is the most important thing that it be really inclusive of all stakeholder groups and take into consideration things like simplicity, clarity. Do people understand it? Does it resonate with people as well as does it accurately scientifically describe something meaningful? I think that the naming of NASH will need to evolve as we understand things as the science evolves and we come to different subtypes, but right now, and for how this happened, I would call the process flawed for lack of inclusivity.
Donna Cryer (08:30): I would also say with the noted bias because we’re in charge of International NASH Day. So we have this unique opportunity that we’re just really starting to take advantage of to introduce the impact of NASH on patients and on communities around the world, to a larger public and to policy makers. And to not do that with one voice and as a unified community is unnecessarily disruptive and ultimately won’t be effective. We can’t sew confusion right now when we are just introducing ourselves and just asking people to care and to take certain actions. So we need to speak with a unified voice and a very clear voice in a way that is constructive to all of the activities that are going on throughout the community, whether that’s researching drug development and clinical management or the outreach to patients and policymakers that we’re doing.
Roger Green (09:26): Donna, that’s a fantastic answer. Okay. Who’s the second bravest one of us?
Louise Campbell (09:30): Great question from Jerry. I echo Donna’s comments there and I agree in relation to the naming, we need a long ongoing discussion for the name and it has to be more than a name that just the medical world comes up with putting the term, ‘fat’ immediately stereotypes, stigmatizes. And more importantly, we lose part of the population affected by these diseases. We lose lean and non-obese NAFLD and we also lose those with genetic conditions who don’t think it relates to them. We know that people have difficulty coming to terms with being diagnosed with a liver disease. I don’t drink is something I’ve heard ad infinitum through all of the years that I’ve worked within liver disease. So not only do patients and people struggle with it, politicians do, and healthcare does too. Otherwise, we wouldn’t be ignoring a condition that affects one in four of the global population. We wouldn’t be failing to diagnose NAFLD and NASH in heavily related conditions of type 2 diabetes and cardiovascular disease. And as a result, we wouldn’t be having this discussion today. So those are my comments really on that.
Roger Green (10:33): Okay. Stephen.
Stephen (10:34): I totally agree with both of those and Jerry, thanks for the question. You’re very thoughtful. You’re very pragmatic about your approach to this. As a point of reference, I do need to say that I’m a consultant for Cirius. And so I’ve worked with Jerry very closely along a lot of lines relative to developing therapeutics for NASH. I think at the end of the day, the priority here is as Donna mentioned it and as Louise mentioned it, and that is, we need to be speaking with a unified voice. And while nonalcoholic fatty liver disease and nonalcoholic steatohepatitis may not be the perfect name. I’m not saying it is by any stretch of the imagination. It’s one where we have spent the past 40 years since 1980 and Ludwig first described this where we’ve been getting that name in the literature over and over.
Stephen (11:29): We’ve been speaking at it, national meetings, international meetings, local meetings, podcasts like this, and other ways of communication and patients are slowly coming to that realization of what this term is. It’s permeating through society. And I think our priority is really disease state awareness. It’s telling people about this condition and to confuse people by changing the name in midstream. Abraham Lincoln said it best, you don’t change horses in midstream. Let’s get to a point where we have critical mass, where we have come together in a unified way to get the word out about this liver condition. And it’s not just a liver condition as Jerry and everybody’s talked about, it’s a systematic illness that affects multiple organs. And I think that needs to be our focus. And then eventually we can come back to something that more clearly defines this milieu of conditions driven by lipotoxicity.
Stephen (12:33): We talk about insulin resistance, but insulin resistance just leads to free fatty acid flux into the liver. And ultimately that’s a lipotoxic problem. Nobody’s talked about lipotoxic liver disease, or how that’s linked to metabolic syndrome. And the point about naming, we used to call diseases after the doctor that discovered them. Kawasaki’s, Gilbert’s, naming convention doesn’t mandate that we have to call it anything, but we do need a simple name. We need a name that doesn’t alienate people. We need a name that clarifies and unifies. And I don’t think we’re there yet. I think metabolic associated fatty liver diseases is really at the end of the day, not much clearer than nonalcoholic fatty liver disease. And so at the end of the day, my take on this is keep it NAFLD, keep it NASH. Let’s get the word out. Let’s increase disease awareness. Let’s focus on therapeutics and noninvasive tests. Then once we’re further along, we’ve crossed the stream, let’s rediscuss the naming.
Roger Green (13:42): Thanks Stephen. So I have to admit, when we talked about this two weeks ago, I was somewhat sympathetic to the idea that goes, you change the name and make it accurate. The more I thought about this over the past two weeks, the metaphor I keep coming back to is trying to drive a car looking in the rear view mirror, which is a mortal lock to run into a tree unless you run into the car in front of you. So whether the name we have right now is the name we would have had if we’d started this ‘right’ on a different path, this is where we are and everything from there on but you folks say is accurate. The disease is getting momentum, none of these names are particularly good. If you want to call it lipo-induced cardiac toxicity. We call the whole thing LICT, but until we have a much better name and until the o-mics kicked in and started to educate us on how many different diseases this is and what characterizes them.
Roger Green (14:30): Let’s just work with what’s going to get people to do the right thing, go to doctors, lose weight, be more compliant, eat better, have hope. We got a question several episodes ago from a patient where it was a two-part question. And the first one was, “Does everybody who gets cirrhosis die?” And the second one is, “And is cirrhosis reversible?” And I felt the pain behind the question, the easier we make it for that person not to get to that point, or should she or he get there, to know that there is hope at that moment and what to do about it and how to find it. I think that’s a lot more important than any anatomical correctness, to any name we come up with. So I guess in different ways, we all kind of wind up in the same place. And Jerry, thanks again for a great question. It’s very rare that we come back to something three weeks later and it’s worth thinking about, but this certainly was that. So thank you.
Roger Green (15:21): With that, let’s go into our main topic for the day. Friday, June 12th will be the third International NASH Day. In only three years, International NASH Day has become a global event of significant proportion. I’m going to let Donna talk about what that proportion is exactly, but we’re fortunate enough to have Donna with us today, surfing with us as it were. So Donna, take a little bit of time and help us with at least two separate issues plus whatever else you want to comment on the scale and scope of IND week this year, what activities you have, how it’s different from previous years in terms of scope and support. And what led you to realize that it was so important to do something like this in the first place? And what’s made it work in terms of building momentum and capturing increasing amounts of attention? Then anything else you want to talk about is fine. Please go ahead.
Donna Cryer (16:05): Roger, thank you so much for allowing me this opportunity to talk about International NASH Day, week, month. I love having aspirations. So I do want to give credit for the group of GI and hepatology thought leaders like Stephen, who really came together in the first year to get this started and to GenFit as a company, who made significant investments in this idea. What the Global Liver Institute had done for, gosh, I recognize people have been working on this for 40 years, so I’ll give due respect to that. But for an organization like GLI, who is six years old this year for having identified two years into our existence, that this was coming, this NAFLD and NASH was coming. And that there were none of the normal indications and infrastructure of what a functioning therapeutic area or an advocacy area would look like. And that’s part of my background, not only as a patient and patient advocate, but helping to build and scale advocacy organizations.
Donna Cryer (17:12): And so didn’t recognize there being any of those pillars and those pillars in that framework that we set out first at an event at the Milken Institute School of Public Health in Washington, DC, and very specifically wanting to position it as a public health issue with, I think at that point 20 organizations for what we called our NASH council. Also very deliberately involving members from the endocrinology community, the cardiovascular community, for minority facing and serving medical societies and nursing societies, primary care wanting to make sure that from the start NAFLD and NASH and that community was built inclusively was built in a recognition of all of the concurrent factors that would need to be addressed to make this work. And so we looked out into the landscape, identified this gap. We pulled together a very diverse, comprehensive group of individuals and one of the key elements of this framework for a functioning advocacy space that we outlined was public awareness.
Donna Cryer (18:16): So you can do all these great things, but if people don’t know about it, it’s not going to get traction. It’s not going to be what it can be. And so International NASH Day was started and I was invited in it as a patient and speaker and helped to shape it from the inside, from its inception. And a lot of great things were created in terms of educational resources that were the very first to be created and shared publicly whether they were videos or patient brochures that simply did not exist. And so it was really exciting to be part of that very first year, that sort of test case with the community come together was there, in fact, this need, this appetite for more information. And there absolutely was. And what was decided was that this really should reside within the larger nonprofit community.
Donna Cryer (19:03): This really should reside within the patient advocacy community and be patient driven. And that would be key to its ultimate success and sustainability. So in year two to last year, the Global Liver Institute did take over IND, we handled the transition and we’re really grateful for that from GenFit. And so the Global Liver Institute owns the trademarks and all of that fabulous intellectual property stuff that lawyers like me like to talk about. But most importantly, it’s really allowed us to create a very neutral platform. Last year, we were able to have 60 partners in about 20 countries and do events in cities, all across the world. And this year, of course, we were worried what would happen this year during the global pandemic? Could we do International NASH Day, would partners be preoccupied with other very serious things?
Donna Cryer (19:56): And so what we decided as an organization at the Global Liver Institute, because we exercise a lot of can-do spirit and we believe in making it happen is our sort of unofficial motto. And so we decided we’re going to do it. We’re going to turn it virtual. We had a lot of conversations with different partners, help them thinking through how can we be creative with this? And so what people have been seeing really since June 1st, and certainly when we started our social media campaign on June 5th was, I think really just a remarkable Testament to the strength of this burgeoning NAFLD and NASH community. I think people excited about this opportunity in liver health to have it more under a public health banner, a broader, more inclusive banner. And so I’ve been involved in radio media tours with our friends at the Fatty Liver Foundation, which started by a NASH patient who participated in another Global Liver Institute program.
Donna Cryer (20:52): Our vast advocacy academy, our social media has been really exciting. I had to turn those alerts off because it was being retweeted so many times, but it’s a great way to get all this information out, partner events. We’ll be starting tomorrow in different countries. And we’re still getting incoming emails from Africa, from India, from all parts of the world who want to be a part. And we’re trying to accept those as quickly as possible. And then the cornerstone really of what’s going to happen on June 12th, the main events so to speak is a series of virtual panels and to have speakers from 10 different countries, 30 different speakers, being able to talk about NASH as the global public health challenge, NASH and children, pediatric NASH is something that’s really important to stress because most people don’t realize that our children are being affected by this and NASH and obesity, NASH and metabolic syndrome.
Donna Cryer (21:47): So some of the issues that we just discussed a bit, but really focusing our partnerships with endocrinology and the lipid field. NASH is a driver of liver cancer. And then also we have had for the past year a ‘Beyond the Biopsy’ campaign talking about the role of noninvasive technologies in NASH. And so there’ll be a panel on that. And so the scale and scope of this in some ways is even larger because of the pandemic, I don’t think we would have been able to get the large array of speakers that we did if they weren’t all grounded at home. And so we hope that the energy will be even greater this year because certainly the urgency is. As Stephen articulated so well just because COVID-19 is happening and as a serious as that is, there’s a need for non-COVID care as well.
Donna Cryer (22:37): And so for NAFLD and NASH patients, NASH is a chronic progressive disease. So NASH does not stop just because we’re focused on another disease. So people need to be identified. They need to be screened. They need to be managed in the way, they need to be enrolled in clinical trials. Because what we don’t want to see is a delay of three months, six months a year because of the pandemic, and then even more people turning out with liver cancer or advanced disease, advanced fibrosis with cirrhosis needlessly, or needing a liver transplant when we know there aren’t enough livers for people. So delay can mean death for NASH patients. So it’s even more urgent this year in 2020 to shine that spotlight on NASH and through all the information that we’re providing through the GLI panels and through all of our IND partners, to be able to show how NASH care and screening can be delivered safely and give people things that they can do now and moving into the next few years.
Donna Cryer (23:47): So I’m even more excited than I was last year about what we’ll be able to do and deliver and the impact we’ll be able to have through our activities around International NASH Day.
Roger Green (23:58): That’s great, Donna, and that’s fantastic. And I think really, really uplifting for all of us. Anybody have a question for Donna before we go on about this year’s program or how it’s gotten here?
Louise Campbell (24:07): I’ve got a question because I just absolutely love the parts of the Advanced Advocacy program that you run. And I thought with you going virtual this year for IND, and whether or not given the world’s now a lot more Zoom and Microsoft windows meetings savvy, is there any future plans, do you think to stretch this out to an international and share that support knowledge to more international participants?
Donna Cryer (24:32): Yes, absolutely. We have made the decision that A3, the Advanced Advocacy Academy will be virtual this year. We already had participants that we were flying in from three different countries and we’ve had international interest for several years that our funding hasn’t been able to support. And so I think that by going virtual with this and really being creative about how we translate the breakout sessions and some of the more personal and intimate moments that make A3 so special, that make any interaction as you well know between advocates supporting each other and helping each other grow so very special. But I think that there’s a way to do that. And we do intend to do that in September by making A3 virtual. So I’d love to connect with you more on how we can do that and what role you can play.
Roger Green (25:21): That’s fantastic. Stephen.
Stephen (25:23): I’ve been fortunate to be a part of International NASH Day as well. I was even able to get to Capitol Hill and speak on the disease and try to bring awareness. And one of the things that I found really amazing about where things stand with this is the willingness of patients to get involved. One of my patients flew with me up to Washington, and then we were able to have a discussion. She was able to have a discussion as a patient advocate, as a patient herself on this disease. And I think the important thing to think about here is despite all the issues going on in our world with COVID, with protest, that real patients with real disease continue to present to our emergency rooms with new onset, newly diagnosed cirrhosis with end stage liver disease complications, bleeding varices, hepatic encephalopathy, ascites, jaundice, decompensation.
Stephen (26:25): And these were people that didn’t just develop NASH yesterday. They developed the disease 10, 20, 30, or more years ago. And they went undiagnosed and here’s the hashtag real talk. They saw doctors, they were evaluated in clinics all over the country, all around the world. These people just, they weren’t diagnosed. And it’s really a travesty because we have tools to make the diagnosis. They’re not the best tools. We know liver biopsies, not the gold standard. We don’t have any perfect noninvasive tests. I’ll tell you what, we’ve come a long way. We have some pretty darn good noninvasive ways to assess people with liver disease. We also know where the low hanging fruit is. We know diabetics. We know people who have metabolic syndrome. People with family histories of documented cirrhosis and nonalcoholic steatohepatitis are at increased risk. Genetics play a huge role in this disease.
Stephen (27:25): We just need to educate. We need to educate. We need to prevent people from coming in to the doctor with cirrhosis. Let’s identify it early on. Lifestyle modification, despite not having any FDA approved therapy, works. They just have to be informed about that and then reinforce that. And surely there’s a need for therapeutics and those are coming. But I would argue that the real thrust right now needs to be on exactly what International NASH Day is all about. Bringing awareness to all the parts of the globe and not just to places that don’t have TV’s and don’t have access to social media, but to mainstream America, where people just, looking for elevated liver enzymes, and if they’re not elevated and they don’t worry about it. And that’s a problem, we know that more than half of the people with fatty liver out there can present at any one given time with normal liver enzymes. So I think that’s important and what Donna is spearheading and leading is incredibly important. So I’m looking forward to IND coming up this year.
Roger Green (28:30): Stephen, that was great. I don’t know that there was a question in it, but as a statement, I think that was fantastic and uplifting. And Donna, this is going to be a question, but it will be a little bit slanted by the time it comes out. So one of the things that has surprised me the most in the last three months is we were going through this period where politically, supposedly nationalism all over the world was becoming a lot more important and the world is being pulled apart. And in some ways that’s clearly true, but in some ways the world is being brought together. I made this comment on this podcast last week. I’ll make it again. It boggles my mind that there are at least 15 countries worth of people who are tuning into this every week. And that’s nowhere near the scale of folks who have the disease.
Roger Green (29:07): Stephen, I take your point. If we’re making patients smarter then they’re not accepting bad diagnosis from doctors who previously said, well, she’s the doctor, but now, or he’s the doctor, but now they’re sources of information. The kinds of things that Donna, that you are able to pull together in with all the different countries that are involved. And then to be able to say, okay, we’re going to take the advocacy program and globalize this year. Used properly I think we’re seeing all these mechanisms as Zoom stock goes through the roof. We’re seeing all these mechanisms used in ways that really shrink the world, that bring people together that enable communities that want to do something really good and important like treat liver disease, to do it. So I guess my question to you, my question is twofold. Number one, I think your point about COVID that you thought was going to be a challenge that in fact it has become an opportunity, will the momentum of all that be self-sustaining or what will have to happen to re-juice that kind of energy?
Donna Cryer (30:05): Well, I think that the world has been brought together in a particular way, but I also think that patients are very practical. Families who are affected by different conditions, don’t really care about boundaries. They care about improving lives and getting to cures. And so the patient perspective has always been global. And when I was creating the organization specifically named it, the Global Liver Institute, because the issues and challenges of liver health, the impact and prevalence of liver health is a global issue. It needs to be dealt with. Often cases locally, or even down to a zip code level in the US to have really effective solutions, but from a scale of the problem and a scale of the opportunity, it has always been global from that patient perspective. And when science is working at its best, it is focused on global problems and shared information as many minds as possible and as many labs around the world trying to find answers and feeding into each other.
Donna Cryer (31:13): And so I think that there is a momentum to this because it makes sense and because it works and because it is superior and more satisfying than the alternative of working in silos or trying to relearn lessons that other people have learned. So I think the great strength that we’ve tried to model in everything that we’ve been doing over the course of our existence in convening organizations and supporting organizations and supporting the growth of advocates in the US and in several other countries. All towards a mindset of making the community stronger and of making the capacity to create change and to address people’s needs and community’s needs in liver health. Since that’s our measure of success, rather than does my name get on it, or does Global Liver Institute name get on it. Since that’s our measure of success, is the community stronger? Is it more capable and has all this technology that we’ve now applied to it and all this connectedness that has been enabled, even though I haven’t been on a plane in a really long time, I don’t see that stopping. Why would it, why should it?
Stephen (32:31): I do think that we’re faced with some challenges. And if you think about it, the last time people were able to go to a meeting relative to NASH, was NASH-TAG 2020 in January. And EASL didn’t happen. The European Association for the Study of the Liver in London was canceled in April and was rescheduled to a virtual meeting in August. And now we just found out that AASLD’s liver meeting that always happens in November is also slated to go virtual. I mean, it’s fantastic that we’re able to have digital platforms to deliver state-of-the-art lectures and to deliver updates on diagnosis and epidemiology and noninvasive tests and therapies. But one thing that’s missing is the interactive dialogue, for instance, that we’re having on this podcast today, that’s an important aspect of bringing awareness on different topics to the population. I wonder, Donna, is there a way that we can take that next step and begin to not just provide content, but allow for that all-important discussion to take place? And I don’t know the right answer there, but I know that’s one thing that’s missing as we move to a more virtual platform.
Donna Cryer (33:49): Stephen, you’re absolutely right. And I have to admit that when I saw that AASLD was going virtual, because I can’t remember the last time I’ve missed going to that meeting in person, something hit my heart. I did experience like, but I won’t see, I won’t have those connections in the hallway, those pass by and thinking about how we would create those relationships and those contacts intentionally. I will say though, that having to sit here and think through very deliberately how I do outreach, how I connect, how I maintain relationships across health care. I have had more casual Zoom calls with some liver patients who lead online support groups or leaders of cancer organizations. We now have a call every two weeks that’s far more better attended than when we tried to have meetings sort of quarterly.
Donna Cryer (34:44): Now we’re all on that looking for connections. So I also think that too, just a little note from the patient here, I think that I’m included in more things because with my physician colleagues, because you have to think through who we’re inviting, who the list is, not just who’s passing through the hallway or who we normally connect with. So it’s creating a certain intentionality about who’s in these virtual rooms. Are they diverse enough? Do we have patients, do we have health plans? If we hold onto the core need that you’ve identified so well that the relationships and the networking and the spontaneity is an important part of discovery and moving the field forward and building the trust that is the underlying platform for which everything is built and the speed at which we can move. Then being intentional with different types of groups in larger and smaller Zoom groups for different purposes, to make sure we are still building those relationships to the extent possible is absolutely worthwhile. It’s worth doing and planning.
Roger Green (35:56): That’s great and thoughtful both of your parts. The one thing that becomes, I think the hardest to plan for is the total randomness, right? There’s this idea called strange attractor theory. I’m not going to go into a ton of detail about this, but basically picture a world where a lot of very, very small one or two-watt lights keep flashing on and off randomly, unless two of them happen to be on at the same time and then they stick. The hardest thing for us to replicate, and the one that I think is probably most important is going to be so that my two watts and your two watts, if they flash at the same time, we somehow connect to each other. I think that’s the massive challenge. The more people work at it, the more likely it is to happen because the more environments will spring up where that thing can happen. You can’t make random, but you can make more places for random to happen. And I think that-
Donna Cryer (36:42): Sometimes I have Zoom office hours, this works with my team for the randomness of the office. And I’ll just announce that I’ll be on for… I’ll just keep it on for an hour or two. And whoever wants to pop in and say something to me can do. And often two or three people will come in and out at different times and overlap and start having a conversation that’s nothing like anything that I had on my mindset for an agenda, can we create without being Zoom bombed and things. Can we recreate some version of office hours and maybe let a general group of friends saying who’s ever available. I’ve had most fascinating conversations during this time with college classmates, my college class put on a, those of you who are in healthcare and want to be on a Zoom call on Thursday night at this time, just come.
Donna Cryer (37:29): And it was people that some of them I connected with regularly, some don’t. And it was fascinating because some were based in Hong Kong, some work at major payers, some were on the front lines of care, working in ERs or in surgical oncology. Wasn’t something that they could exactly plan, but to create a space for that serendipity, a space for that randomness goes to what you’re talking about, I think, and it was incredibly valuable.
Roger Green (37:54): We’re fortunate enough to have with us, a person who literally works in three different environments on three different continents, all on fatty liver disease. None of those are North America. Louise, I’d like to invite you to take a few minutes and talk about the NASH patient and support for the patient in the UK versus Australia versus Bahrain and what you see and what we should understand about how the experience is similar and different and what to take away that’s of value.
Louise Campbell (38:24): I have to say that my work in Bahrain was only for a weekend. It’s not a permanent thing. It was just a bit of education and some FibroScanning. But I think if I look at the three continents or areas that I’ve worked with liver patients, and I think I’m struck by what Donna was saying earlier about when she developed this, it was about inclusivity of all of the major stakeholders. If I look from my experience predominantly in both the UK and Australia, which is bigger, is that it’s actually not that same level of connection. We don’t have great endocrinology involvement. We don’t have great cardiac. It does seem to be very much kept in both of those countries as a liver disease for liver physicians. And I think I went to the Global NASH Symposium at Heathrow, which happened just before lockdown and people started not flying.
Louise Campbell (39:16): And it was interesting that in all of the parallel sessions, because it was more of a global take and coming back to Donna starting this. And the fact that it was run by endocrinologists and cardiologists, there were very few hepatologists at this meeting and there were bariatric surgeons. One of the lectures was called ‘NAFLD and NASH Is a Cardiac Disease.’ So this whole recognition of cardio metabolic involvement and inclusivity of all of the specialties was really quite striking. And I think that’s not how I see it in Australia. And in fact, when I was looking more for figures on NAFLD and NASH, there’s actually very, very little government or national statistics on the growing epidemic out there. That they’re the third biggest obese nation after America and Canada, and only narrowly beat Britain on that, yet they don’t have much figures or data.
Louise Campbell (40:15): What they do have is a lot of figures and data on rising liver cancer and something that’s close to my heart, particularly in Australia, obviously is the indigenous population and Torres Strait Islanders. Now they live on average 10 years less than a non-indigenous Australian. They have a huge problem with type 2 diabetes, cardiovascular death, and mortality, but they also have large problems with hepatitis B. When I first started and a long time ago, and may predate most of you guys on this, it was known as Australian antigen positive. It wasn’t known as hepatitis B surface antigen, and I think Aboriginal populations were highly infected, but the government campaign, a vaccination has made a huge inroads to help that population. But we hadn’t really assessed thee NAFLD and NASH in those populations.
Louise Campbell (41:03): And it’s something that I would love to do along with the hepatitis B and C is to look at liver health and to try and help with some of that mortality. But Medicare currently, for example, I work with FibroScan, as you know the Medicare in Australia, FibroScan is not supported. So it’s one of the only major nations that don’t actually support FibroScan as a main diagnostic technique. Yes, it’s in some areas of healthcare and arguably they’ve got the highest density population per FibroScan on the planet. But most of that is in New South Wales because of the density in population. So it’s not actually spread round Australia. There are five devices in the whole of Western Australia, for example, and I’m a resident in Perth. That’s just not enough for a state that has the biggest Aboriginal population and no access to FibroScan in an area with Aboriginals.
Louise Campbell (41:57): There’s a marked difference in the quality of healthcare and access to diagnostics, particularly for liver disease. I went back and had a look at the definition of advocacy and it was the act of arguing in favor or pleading for something. As somebody with over 35 years, looking after people suffering from liver disease, these including people that are grandparents, mothers, fathers, brothers, sisters, sons, and daughters. And when I look back at it, I’ve spent most of my career looking after people who had a preventable early death. And if I look at the United Kingdom, the average age of death, the liver disease in the UK, is at 59. How does this remain acceptable? We do have to ask questions. And I think International NASH Day is one of those great platforms and forums that can do that because I feel strongly and passionately about advocating for those improved patient pathways.
Louise Campbell (42:52): So I left the NHS because there is so little access to early diagnostics and GPs and taking liver diagnostics to primary care to allow people those opportunities to do that. Getting out there, getting only diagnosis does give us the opportunity to influence what is a preventable early death. Liver health care is often about the minority and those are the ones who get abnormal tests. As Stephen and Donna have said earlier, they then get somebody who notices that abnormal test, who then looks deeper. But as Stephen said, it’s still remains a very late diagnosis for most of those individuals. Liver disease and the way we think about the liver as a whole has to change. You don’t hear it in everyday conversation. And if we, as medical and healthcare professionals cannot talk about the liver, why would anybody else think that it’s actually important? So International NASH Day to me is about focusing the mind, having this discussion on a global level.
Louise Campbell (43:53): It’s the opportunities to have somebody who haven’t heard about this [inaudible 00:43:57] know about it now. I developed and used to run a lovely liver speed dating We know that nothing went over 30 minutes, so it was literally speed dating. And that was good. And everybody was welcome. And I used to task everybody in the room with, if you go out after this and just find five people early enough to change their outcome by giving them knowing about their liver disease, if they did that, that would have made 3000 new diagnoses. Because it was only a little study day. It was only about 100 people twice a year, but it was very effective. And I think International NASH Day, if every person who tunes in can just find there’s five, wow, that’s a major turnaround.
Louise Campbell (44:37): So that’s why I would absolutely support it. And I think we do have to get more coordination between the disciplines, particularly in other parts of the world, my hats off to Donna for getting all of them around the table. I’d like to see that happen in Australia and the UK and Bahrain as far as anywhere that still doesn’t have it’s own FibroScan.
Donna Cryer (44:57): You are hereby invited to the table.
Louise Campbell (44:58): Thank you.
Donna Cryer (45:00): I look forward to planning next year with you. No, seriously, your work is incredible and your commitment is incredible and your focus is fantastic. And so I look forward to further conversations because this is how we grow together with other passionate people wanting to truly have an impact. So consider yourself drafted.
Roger Green (45:20): Louise, thank you for probably the most illuminating single answer I’ve heard on the nine weeks we’ve been on this podcast and we’ve heard some pretty amazing stuff, that was truly inspiring. I’d like to do a speed random, going in the order we’ve tended to go in today, which is Donna then Louise and Stephen then me. What is the most important thing COVID-19 is going to mean for liver disease in the foreseeable future?
Donna Cryer (45:41): I think that this shift in being able to look through and move to the setting that works best for the patient, the minimally burdensome setting is the greatest advance, frankly, for all patients, certainly those in rural settings, but urban settings for patients who are busy. Patients who are trying to work or patients who are busy because they’re caring for kids and families, or they’re busy because they’re frail and too sick to get up and go out to the doctor’s office, but still need that connection, that conversation. I think that you will see more care delivered to more people in more diverse settings because of the adoption and payment parody for telehealth and telemedicine, not just clinical visits, but mental health visits, other types of services delivered right to people themselves through their phone or the computer at home or wherever they are. That is the most transformational difference because of COVID-19.
Roger Green (46:40): Okay, great, Louise.
Louise Campbell (46:42): I’m just one voice, but I’d like to hope that COVID is an opportunity for all of the comorbid conditions and charities and healthcare providers in all countries who have a related comorbid metabolic condition to start putting that on their websites, start sharing that information. Liver disease is not just for patients with liver disease. So I’m hoping COVID-19 with its cardio-metabolic risk factors that seem to have been ignored from the previous SARS, MERS and H1N1 to actually now look for the risk factors and find these patients because we can make a difference. They can make a difference and they can significantly reduce their risk. But if we don’t start looking, we’re not going to change it for the next time. And I think it’s, again, it would be again, a missed opportunity and I’m hoping COVID-19 stops us missing opportunities.
Roger Green (47:32): Stephen.
Stephen (47:33): Two things for patients, I think focus on health. We’ve spent the past three months watching the news, reading online blogs, reading the newspaper about death, disease, intubations, therapeutic modalities aimed at targeting cytokine storm, viral replication. We’ve learned about antibodies antigens. The lay population has grown in their knowledge of medicine. And I hope that turns into an introspection on their own lives and their own comorbidities. And I hope that that translates into a communication and a dialogue with their primary care physician about what can be done about that. What are the additional risk factors that they may be facing because they’re diabetic or because they’re obese? And I hope that leads to a discussion about fatty liver disease. For pharmaceutical companies I think they have already looked within themselves to say, how can their assets be used against COVID-19? Maybe it’s anti-inflammatory, maybe it’s anti-fibrotic, maybe it’s shutting down cytokines, whatever it is. I think what that will do is it’ll lead to more collaborative efforts within different pharma sectors, within different disease states and ultimately will enhance combination therapy and move the field forward. That’s what I hope at least.
Roger Green (49:01): Okay. And while we’re on hope, I’ll do a slightly different one. One of the things you learn if you spend your life doing statistics, is that people when they claim they’re not always looking for numbers, they’re always looking for numbers. And one of the problems liver has had is that you can’t find a simple number to tell you how well the liver is doing. As we agree, the elevated liver enzyme test just don’t necessarily get it done. My hope is that part of what COVID will do is lead people to appreciate that liver’s importance is not in what you could measure, but what happens while you’re not paying attention. And that, that will be part of the underbelly of all the processes that you’re talking about.
Roger Green (49:40): Create a patient awareness, seeking out people earlier, drug companies figuring out how to make this happen together. A more holistic and thoughtful look at what this particular organ means to the body, because it will stop being about can I measure this going all the way back to Jerry at the beginning, it’s not the random chance do you taste urine or smell acetone. It’s the understanding that at the very fundamental level, most of the things we want to manage, what have they have in common is the liver is implicated in all of them. And therefore, even if we can’t measure exactly what that looks like, we know it matters. And then we try to figure it out a different way. And I think that would be an extraordinary benefit if we can get there. That’s my hope.
Roger Green (50:14): Before we wrap up, I want to do one thing we’ve never done. This week actually, marks another first for Surfing NASH, roughly 100 listeners supporters of the program have become friends of mine on LinkedIn. And it popped up on my LinkedIn this morning that one of the Melissa Hanahan of Novartis is celebrating her birthday today. So Melissa let this be the first Surfer, happy birthday anybody ever gets. And for other listeners who want their events celebrated on podcast, send your events to our questions line. We’ll shout at that every week. Happy birthday.
Donna Cryer (50:39): Happy birthday.
Louise Campbell (50:39): Happy birthday.
Roger Green (50:41): Okay. So with that said, I want to go around real quickly. The question we end with every week, people seem to like, I seem to like. The one thing you heard today that surprised you most, Donna.
Donna Cryer (50:50): What surprised me was being able to walk away from this with another fellow advocate that I’m so excited to work with Louise and I didn’t expect to find a partner through this podcast.
Roger Green (51:05): Okay Louise, top that.
Louise Campbell (51:07): Well, I suppose I’ve got a partner now and I never expected that from a on a podcast either but so the the one thing that I loved actually was the idea of Zoom office hours. I’m going to take that one and enjoy it.
Roger Green (51:21): Stephen.
Stephen (51:22): Well, I got two of them just from listening both of my colleagues talk today. So number one, I didn’t realize that this podcast was now a matchmaking device and Roger, we’re going to have to rethink some of our content because clearly we can put a lot of people together here. I like the Zoom hours concept that Louise mentioned that to me, although I wonder if I’m opening up Pandora’s box with that, but it certainly is intriguing to have that kind of free form dialogue at times.
Roger Green (51:53): Stephen, now that you set me up about as well as I think Donna set Louise up. The thing I kept thinking was that we have the limited following, even that we have here, we have enough of a platform that if we made creative use of Zoom and things like it, we could probably do a much better job of bringing people together and exposing them to things they want to know about. One of the things I keep thinking about is illness versus wellness. And on the wellness side of this equation, I talked about this a little bit last week, the Nooms and the organizations like that, that are actually very, very good at helping people to want to be well, be better. If we could find a way to connect them up with people who really want to be well in a safe way, in a safer, more group oriented initial setting, we could do some amazing things, so-
Donna Cryer (52:33): That’s one of the things that we are absolutely working on at GLI. Over the course of the 25 years, since my liver transplant, it’s been amazing to me how few doctors ask me how you do so well with one liver or run around the country, Peloton bike in the basement, things like that. You’re absolutely right. How can we transmit and communicate and create more people who are well and have the strategies and tactics and mindset needed to be well, no matter what their underlying conditions are?
Roger Green (53:02): Donna, I’m volunteering. You now have a partner and you have a fellow traveler and let’s see what we can do about all that. Because I think it really matters.
Stephen (53:09): I’ll say this in final, Donna, I think what you’re doing is terrific. International NASH Day is really putting fatty liver on the map. It’s its third year, it’s gaining and kind of its acceptance and participation around the world. So I’ll end with the statement, I hope you leave a big fat dent on this planet in the name of NASH by the end of this week.
Donna Cryer (53:33): Thank you. I accept that challenge.
Roger Green (53:34): Amen. Amen. Okay. That ends today’s episode, IND week. I want to thank Stephen. I want to thank Louise, I want to especially Donna for taking the time from her exceptionally packed week this week to join us and really inspire the panel and everyone else I’m sure who’s listening. Special thanks to Frank, our engineer of podcast, who makes us sound so good. Eric Brown, social media master, extra special thanks to all of you who listen and made us the fastest growing podcast in the world. Go away today inspired, go away today do something special. Find the five people Louise was talking about and help them find health. We’ll be back next Thursday with episode 10, talking about diagnostics. Everybody have a great week until then stay safe. Surf on, Surf’s up.
Speaker 2 (54:14): You’ve been listening to Surfing the NASH Tsunami. Send in your questions to surfingnash.com and our panelists will spend the first five minutes of next week’s episode, answering your questions. Visit us online today surfingnash.com.