S4-50.6 – Wrapping up 2023 – An Interview with Neeraj Mistry and Jenn Leigh Jones

S4-50.6 - Wrapping up 2023 - An Interview with Neeraj Mistry and Jenn Leigh Jones
Patient advocates Neeraj Mistry of the Fatty Liver Foundation and Jenn Leigh Jones of the Society for Sober Liver Survival join Louise Campbell and Roger Green to discuss the merging of their organizations and the impact of the new nomenclature on how patients might look at their disease.

Surfing the MASH Tsunami continues its 2023 wrap-up conversations with patient advocates Neeraj Mistry of the Fatty Liver Foundation and Jenn Leigh Jones of the Society for Sober Liver Survival, along with co-hosts Louise Campbell and Roger Green. The conversation focuses on the joining of their organizations and ways the new nomenclature affects how providers and patients look at SLD.

The conversation starts with Roger asking Neeraj and Jenn to provide a word of phrase that sums up the MASLD space at the end of 2023. Neeraj offers two words: “inclusivity and solidarity.” “Inclusivity” refers to liver disease moving from being a “marginal issue” compared to other diseases to the center of the conversation. “Solidarity” refers to a commitment between providers, patients, corporations and advocates all to present a similar message based on the new nomenclature and the breadth of disease. Jenn’s two-word phrase is “amor fati” a term coined by the Stoics and advanced by Nietzsche meaning “love of one’s fate.” To Jenn, this means accepting one’s past and learning from it. To convey this message, she tells her own story movingly, using the metaphor of a turtle.

Neeraj moves ahead to describe the patient experience as “many etiologies, one journey,” and then to list the items that patients need on this journey: “care, support, treatment, access when available. And for those who are at risk, we need preventative intervention.” For most liver disease, he continues, the interventions are similar, sometimes identical. The new nomenclature creates a new, broad umbrella under which providers and advocates can create an “echo chamber” for common solutions. The new nomenclature provides this. Jenn adds that much liver disease results from mental health issues, regardless of the specific etiology. One of the sounds from the echo chamber needs to promote understanding of these issues.

Louise questions whether providers see the same inclusivity as patients and advocates. She cites her experiences in viral hepatitis, where providers tended to see patients from different geographic backgrounds or ethnicities as facing diffferent challenges, and nurses as the patient advocates within the healthcare system to promote inclusivity.

Roger shifts to focus on stigma, specifically the idea that the counterpoint to inclusivity is the idea that people who feel stigma tend to look for someone suffering under greater stigma, which means that patients whose primary issue is alcohol look with disdain on those whose primary issue is diet, and vice versa. He adds that Hannes Hagstrom stresses the idea that all liver disease is on a spectrum (S4 E50.5). Neeraj notes that stigma and mental health challenges lead to habits that become addictions that become tremendously hard to overcome.

The discussion about stigma progresses in several directions: how it affects different stakeholders differently and the pivotal role of allied providers (Roger), how stigma represents a “tower of shame” and the importance of allied providers’ empathy in overcoming shame (Jenn), the diverse skills and team treatment of mental health patients in NHS (Neeraj), and how viable models exist today (Jenn).

Roger notes that others in the system say that technology must be a pivotal part of the solution, given the lack of time available to doctors. Neeraj emphatically disagrees, noting that technology cannot be empathetic and that healing relies on interactions between people. Jenn concurs, noting that many patients in this system have relatively limited technological abilities or access beyond their cellphones.

The discussion closes with a question about 2024 and expressions of optimism and hope from the entire panel.

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