S6.14.3 - Louise and Roger React to Empowered SLD Patient Advocates
Send us Fan Mail 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.