S6.14 - Introducing the Dr. Stephen A. Harrison Patient Advocacy Fellowship Program

Send us Fan Mail00:00:00 - Surf's Up: Season 6 Episode 14Louise 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 BeElena 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 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, 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 ProgramThis 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 RoundtableRoger 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 Report and Wrap-up