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  • S6.14.3 - Louise and Roger React to Empowered SLD Patient Advocates
    2025/10/07

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    The original roundtable has three segments. Surfing the MASH Tsunami is preempting the third segment, which will be posted next week, to share our co-hosts' reactions to the positivity and energy they felt from a group of empowered SLD advocates.

    Immediately after the roundtable, Louise suggested to Roger that they record a separate conversation sharing their reactions to what they had just witnessed. They turned the recording equipment on and resumed their conversation.

    Roger starts by noting that this is the first SurfingMASH episode comprised entirely of patient advocates at a moment when advocates felt empowered and optimistic. (Also, the Fellows were the first advocates to appear on SurfingMASH who are not part of the Advocate KOL community.)

    For Louise, her overpowering reaction is to the passion, because passion breeds energy and empowerment. She notes that the SLD advocates came from an array of liver-related backgrounds and from HIV, the original sources of truly empowered patients some 30 years ago.

    Roger shares two thoughts. As he listened to the roundtable, he recalled earlier episodes, some four to five years ago, when it seemed that the physician KOL community was not in sync with the patient advocates' goals and needs. Continuing along this train of thought, he discusses the shift in identity from “MASH patient” to “person living with MASH.” To Roger, the term "MASH patient" suggests a person defined by the disease, whereas the term "patient living with MASH" empowers individual patients to manage the disease and its place in their lives in whatever way they choose. The advocates, he says, choose to learn and speak out confidently.

    During the roundtable, Elena mentioned Úna Keightly, a Harrison Fellow from Ireland, who spoke from the floor at Paris MASH to request that patients learn about the outcomes of the trials in which they participate, whether the outcome is deemed a success or a failure. For the "MASH patient," a failed trial feels like a personal failure, but for a "person living the MASH," even the failed trial becomes an opportunity to learn about the disease and contribute to a long-term solution.

    Louise mentions a comment from Harrison Fellow Pam Miller about her cardiologist giving her a potentially hepatotoxic medication without considering Pam's liver status. This reminded both Louise and Roger of a comment former Global Liver Institute President Donna Cryer made years ago to the effect of "it doesn't matter what kills me. If I'm dead, I'm dead."

    From here, the conversation shifts to other changes in disease description Louise and Roger foresee:

    • Describing the disease itself in more accessible terms, such as "liver stiffness" vs. "fibrosis level."
    • Increasing the groups of attendees at events to include not only patients, but also the APPs who will provide much of the actual patient-level care.
    • Educating those who still mischaracterize MASLD as “a bit of fat” that requires no action.
    • Focusing more attention on post-menopausal women, who Louise notes are most likely to exhibit advanced SLD and cirrhosis.
    • Being more sensitive to issues that drive changes in patients' quality of life, which might be the impact of hepatic encephalopathy, but might also relate to lean mass wasting with incretin agonists.

    Both foresee a growing “army” of advocates that can drive earlier detection, smarter trial design, and better everyday care. They cite some specific examples from the Fellows in the roundtable and others from their own life experiences.

    Ultimately, Louise and Roger share their belief that this program is an excellent tribute to Stephen Harrison, who strongly believed in the importance of patient advocates and the messages they convey.

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    20 分
  • S6.14.2 - Goals of the Stephen A. Harrison Patient Advocacy Fellowship Program
    2025/10/07

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    In June, the Fatty Liver Foundation officially launched the Stephen A. Harrison Patient Advocacy program and announced its first class of 20 Fellows. In today's conversation, the program's organizers, Fatty Liver Foundation President Wayne Eskridge and Program Co-ordinator Elena Samsonova, share the program's goals and objectives with Louise Campbell and Roger Green.

    The bulk of this conversation focuses on the program's goals and scope for its first year. First, though, Harrison Fellow Julie Peyout from Canada describes what it means to her to be part of the program. (Julie's connection was interrupted while her colleagues were answering this question earlier in the roundtable.)

    Wayne points out that, while the FLF originally focused on NAFLD and NASH, the new nomenclature has led them to broaden their focus to all forms of SLD. (He plans to rebrand as the Steatotic Liver Foundation.)

    Elena describes the program's four "pillars":

    • Mentorship - Having an experienced advocate guide each Fellow as they pursue the next steps in their advocacy.
    • Education - Learning more about SLD.
    • Networking - Connecting with other advocates and industry decision-makers at conferences.
    • Fellowship - Supporting each other as they grow new skills and have new experiences.

    Wayne elaborates on some of the "robust flow of information" the Fellows will receive. He focuses on three areas: what he calls "the nuts and bolts of the regulatory process", clinical trials from the researcher and trialist perspectives and more general information about how different functions inside a pharmaceutical company work.

    As the conversation winds down, Roger cites this podcast's mission to "make a big fat dent in MASH" and asks the Fellows about the dent they anticipate making. Elena responds with a story from the previous week's meetings, during which another Fellow stated that when she has participated in trials, she has never received information on what the trial results and learnings actually showed. Elena describes watching clinicians and trialists respond by discussing ways participants could receive such information in the future.

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    19 分
  • S6.14.1 - How the Harrison Patient Advocacy Fellowship Came To Be
    2025/10/07

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    In June, the Fatty Liver Foundation officially launched the Stephen A. Harrison Patient Advocacy program and announced its first class of 20 Fellows. In today's conversation, Louise Campbell and Roger Green interview the founders to learn what motivated them to launch this program, and we meet five of the initial Fellows.

    Program Co-ordinator Elena Samsonova opens the conversation by celebrating last week's onboarding of 20 inaugural Fellows and the chemistry between them. She goes on to introduce five of them:

    • Steven Rodrigues (ALD, UK citizen) shares his recent experience giving a 15-minute national interview on BBC Radio 5 discussing ALD clinical insights.
    • Silvana Lesidrenska (Hepatitis B, Bulgaria) shares her desire to learn more about SLD as part of her advocacy leading a liver patients association in Bulgaria.
    • Julie Peyout (MASH, Canada) is a great-grandmother who was recently found free after therapy for Non-Hodgkin's Lymphoma.
    • Pam Miller (MASH cirrhosis, US) learned 24 years ago that she had MASH cirrhosis when her surgeon aborted a bariatric procedure. Since then, she has lived with cirrhosis and experienced hepatic encephalopathy (HE). She has participated in clinical trials, lobbied legislators, and collaborated with professional societies.
    • Melanie Smith (MASH cirrhosis, US) has lived with stage-4 MASH cirrhosis since age 36 (sixteen years ago) and experiences hepatic encephalopathy (HE). She has led support groups for over a decade.

    Next, Fatty Liver Foundation President Wayne Eskridge recounts the program's foundational story. He describes Stephen as a man with a genuine commitment to patients and his passing as a "tremendous loss." This led Wayne to discuss this idea with Rebecca Taub of Madrigal, "another one of my heroes." (Madrigal supports this program.)

    Elena describes how she joined the FLF to lead this program. Roger asks the Fellows where and how they intend to make a difference. Their goals vary, from working in a Biopharma company advocating for patients to "going to the top," perhaps even lobbying the HHS Secretary, to expanding their own education and knowledge about the various forms of SLD.

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    38 分
  • S6.14 - Introducing the Dr. Stephen A. Harrison Patient Advocacy Fellowship Program
    2025/10/03

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    00:00:00 - Surf's Up: Season 6 Episode 14
    Louise Campbell and Roger Green interview key players in the inaugural Dr. Stephen A. Harrison Patient Advocacy Fellowship program, including Wayne Eskridge of the Fatty Liver Foundation (FLF), which initiated the program, Program Coordinator Elena Samsonova, and five Harrison Fellows.

    00:05:08 - Part I: How the Harrison Fellowship Came To Be

    Elena opens by celebrating last week's onboarding of 20 inaugural Fellows and the chemistry between them. She goes on to introduce five of them:

    • Steven Rodrigues (ALD, UK citizen) shares his recent experience giving a 15-minute national interview on BBC Radio 5 discussing ALD clinical insights.
    • Silvana Lesidrenska (Hepatitis B, Bulgaria) shares her desire to learn more about SLD as part of her advocacy leading a liver patients association in Bulgaria.
    • Julie Payrout (MASH, Canada) is a great-grandmother who was recently found free after therapy for Non-Hodgkin's Lymphoma.
    • Pam Miller (MASH cirrhosis, US) learned 24 years ago that she had MASH cirrhosis when her surgeon aborted a bariatric procedure. Since then, she has lived with cirrhosis and experienced hepatic encephalopathy (HE). She has participated in clinical trials, lobbied legislators, and collaborated with professional societies.
    • Melanie Smith (MASH cirrhosis, US) has lived with stage-4 MASH cirrhosis since age 36 (sixteen years ago) and experiences hepatic encephalopathy (HE). She has led support groups for over a decade.

    Next, Wayne recounts the program's foundational story. He describes Stephen as a man with a genuine commitment to patients and his passing as a "tremendous loss." This led Wayne to discuss this idea with Rebecca Taub of Madrigal, "another one of my heroes." (Madrigal supports this program.)

    Elena describes how she joined the FLF to lead this program. Roger asks the Fellows where and how they intend to make a difference. Their goals vary, from working in a Biopharma company advocating for patients to "going to the top," perhaps even lobbying the HHS Secretary, to expanding their own education and knowledge about the various forms of SLD.

    00:34:46 - Part II: Goals of the Harrison Fellowship Program

    This conversation focuses on the program's goals and scope for its first year. Wayne points out that, while the FLF originally focused on NAFLD and NASH, the new nomenclature has led them to broaden their focus to all forms of SLD. (He plans to rebrand as the Steatotic Liver Foundation.)

    Elena, it describes the program's four "pillars":

    • Mentorship - Having an experienced advocate guide each Fellow as they pursue the next steps as Advocates.
    • Education - Learning more about SLD.
    • Networking - Connecting with other advocates and industry decision-makers at conferences.
    • Fellowship - Supporting each other as they grow new skills and have new experiences.

    00:55:09 - Experts: Louise and Roger Discuss This Roundtable

    Roger and Louise share their enthusiasm for the unprecedented sense of empowerment they felt among patient advocates while leading this discussion. Both comment on the identity shift from “MASH patient” to “person living with MASH.” Louise mentions that doctors or APPs still minimize disease by characterizing MASLD as “a bit of fat” that requires no action. Roger suggests that focusing on the total patient will include not only the efficacy of medicines but also potential side effects or safety concerns. Louise comments that advanced disease and cirrhosis occur most often in post-menopausal women with cirrhosis, and discusses implications. Both foresee a growing “army” of advocates that can drive earlier detection, smarter trial design, and better everyday care.

    01:11:11 - Business Repor

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    1 時間 8 分
  • S6.13.3 - Major Issues in MASH-ville: US Government Chaos and Scanning Market Dynamism
    2025/09/11

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    This discussion on ways to improve MASH patient management comes from the early July roundtable on "Major Issues of the First Six Months of 2025." As a reminder, that roundtable included the three co-hosts (Louise, Jörn Schattenberg and Roger Green)

    Roger drives this conversation, focusing on two very different, yet very important issues: the first is the increasing dynamism of the in-office scanning market, with leader Echosens developing new products and services, while companies like e-Scopics, Sonic Incytes, and Mindray (Hepatus) are introducing new devices with competing profiles. Roger discusses the idea that some scanners keep all data resident in the machine, while others send it immediately to the cloud. Louise suggests that while we should welcome any reliable scanning device to the market, Echosens has a significant advantage in terms of data richness and depth when compared to all competitors. (NOTE: This benefit became clearer when Echosens submitted a Letter of Intent to the FDA to qualify liver stiffness measurement (LSM) using VCTE, as found in FibroScan, as a reasonably likely surrogate endpoint in clinical trials for MASH.

    Separately, he lists some concerns about how the Trump Administration's focus on cutting services to the poor, coupled with Robert F. Kennedy Jr.'s distrust of pharmaceuticals and mainstream health research, might limit the number of Americans with access to healthcare and the kinds of care they can access.

    At the end of this conversation, Roger asks Jörn and Louise what they consider major issues for the next six months.

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    37 分
  • S6.13.2 - Newsmakers: Updating Our Approach to Screening for Advanced Liver Disease
    2025/09/09

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    Last month, The Lancet posted online an article from Stine Johansen, Fredrik Åberg, Emmanuel Tsochatzis and Aleksander Krag, titled "Screening for Advanced Liver Disease." The article aims to update the Wilson and Jungner criteria, initially developed in 1960, to address modern needs and issues. In this conversation, Professor Krag and Dr. Johansen join Roger Green to discuss their article.

    There are many nuances and high points to cover in this thoughtful, fairly lengthy conversation, but one key point is that screening a mass population for HCC or cirrhosis has an entirely different set of issues and criteria compared to the screening usually discussed on this podcast, which involves identifying a population at increased risk for MASLD or MASH and screening them. Also, healthcare is far more expensive than it was in 1960 with a plethora of high-cost ways to diagnose, treat and manage patients.

    As a result, the authors started with the 10 Wilson and Jungner criteria and added eight more. During this conversation, Stine emphasizes the need for a comprehensive clinical trial on this issue, and all panelists agree that LiverAIM is likely to serve as the study.

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    20 分
  • S6.13.1 - Major Issues in MASH-ville: Developing a More Integrated Approach to MASH Patient Management
    2025/09/09

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    This discussion on ways to improve MASH patient management comes from the early July roundtable on "Major Issues of the First Six Months of 2025." As a reminder, that roundtable included the three co-hosts (Louise, Jörn Schattenberg and Roger Green)

    Louise drives this conversation based on two related issues she sees emerging: (i) increasing opportunities for motivated patients to manage their own health and (ii) managing the total patient in an environment where people may be taking incretin agonists as if they are consumer drugs. With increased access to scanning, providers can monitor patients (and patients can self-monitor) more closely. However, some of the issues a provider might find are tricky: patients who undertake what Louise describes as "the sneaky areas patients think are normal, but are probably contributing to disease" due to miseducation or no education on healthy eating and lifestyle, or patients purchasing and using incretin agonists through consumer channels, but possibly at subtherapeutic doses. Vigilance and probing are key here, but health systems will need to train more people on the types of probing that uncover underlying issues and behaviors that patients mistakenly believe to be healthy.

    The discussion also extends to the role of NITs in diagnosis and patient management, and how providers need to shift the paradigm away from describing a patient by fibrosis stage and instead focus on the amount of fat in the liver and its overall suppleness.

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    20 分
  • S6.13 - Locating MASH patients, Population Screening for Advanced Disease, Impact of Washington on Americans' Health
    2025/09/05

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    00:00:00 - Surf's Up: Season 6 Episode 13
    Louise Campbell, Jörn Schattenberg and Roger Green continue their discussion of some major issues from earlier this year, while co-authors Aleksander Krag and Stine Johanset join Roger to discuss their recent publication in The Lancet, titled "Screening for Advanced Liver Disease."

    00:04:45 - Major Issues of the First Six Months: Integrated Patient Management

    Louise drives this conversation based on two related issues she sees emerging: (i) increasing opportunities for motivated patients to manage their own health and (ii) managing the total patient in an environment where people may be taking incretin agonists as if they are consumer drugs. With increased access to scanning, providers can monitor patients (and patients can self-monitor) more closely. However, some of the issues a provider might find are tricky: patients who undertake what Louise describes as "the sneaky areas patients think are normal, but are probably contributing to disease" due to miseducation or no education on healthy eating and lifestyle, or patients purchasing and using incretin agonists through consumer channels, but possibly at subtherapeutic doses. Vigilance and probing are key here, but health systems will need to train more people on the types of probing that uncover underlying issues and behaviors that patients mistakenly believe to be healthy.

    00:21:02 - Newsmakers: Aleksander Krag and Stine Johansen discuss Screening for Advanced Liver Disease

    Last month, The Lancet posted online an article from Stine Johansen, Fredrik Åberg, Emmanuel Tsochatzis and Aleksander Krag, titled "Screening for Advanced Liver Disease." The article aims to update the Wilson and Jungner criteria, originally developed in 1960, to address modern needs and issues. In this conversation, Professor Krag and Dr. Johansen join Roger Green to discuss their article.

    There are many nuances and high points to cover in this thoughtful, fairly lengthy conversation, but the key point is that screening a mass population for HCC or cirrhosis has an entirely different set of issues and criteria compared to the screening usually discussed on this podcast, which involves identifying a population at increased risk for MASLD or MASH and screening them.

    00:54:42 - Major Issues of the First Six Months: Changes in US Health Policy and Potential for Dynamism in the In-Office Scanning Market

    Roger drives this conversation, focusing on two very different, yet very important issues: the first is the increasing dynamism of the in-office scanning market, with leader Echosens developing new products and services, while companies like e-Scopics, Sonic Incytes, and Mindray (Hepatus) are introducing new devices with competing profiles. Roger discusses the idea that some scanners keep all data resident in the machine, while others send it immediately to the cloud. Louise suggests that we should welcome any reliable scanning device to the market.

    Separately, he lists some concerns about how the Trump Administration's focus on cutting services to the poor, coupled with Robert F. Kennedy Jr.'s distrust of pharmaceuticals and mainstream health research, might limit the number of Americans with access to healthcare and the kinds of care they can access.

    At the end of this conversation, Roger asks Jörn and Louise what they consider major issues for the next six months.

    01:11:40 - Business Report and Wrap-Up

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    1 時間 14 分