『Surfing the MASH Tsunami』のカバーアート

Surfing the MASH Tsunami

Surfing the MASH Tsunami

著者: SurfingNASH.com
無料で聴く

このコンテンツについて

Driving the Discussion in Fatty Liver Disease. Join hepatology researcher and Key Opinion Leader Jörn Schattenberg, Liver Wellness Advocate Louise Campbell, and Forecasting and Pricing Guru Roger Green and a global group of Key Opinion Leaders and patient advocates as they discuss key issues in Fatty Liver disease, including epidemiology, drug development, clinical pathways, non-invasive testing, health economics and regulatory issues, from their own unique perspectives on the Surfing the MASH Tsunami podcast. #MASH #MAFLD #FattyLiver #livertwitter #AASLD #GlobalLiver #NoNASH #EASL

© 2025 © 2024 SurfingMASH.com
博物学 科学 自然・生態学 衛生・健康的な生活 身体的病い・疾患
エピソード
  • S6.14.3 - Louise and Roger React to Empowered SLD Patient Advocates
    2025/10/07

    Send us a text

    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.

    続きを読む 一部表示
    20 分
  • S6.14.2 - Goals of the Stephen A. Harrison Patient Advocacy Fellowship Program
    2025/10/07

    Send us a text

    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.

    続きを読む 一部表示
    19 分
  • S6.14.1 - How the Harrison Patient Advocacy Fellowship Came To Be
    2025/10/07

    Send us a text

    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.

    続きを読む 一部表示
    38 分
まだレビューはありません