S4-20.1 – Who is going to be the Larry Kramer of NASH?

S4-20.1 - Who is going to be the Larry Kramer of NASH?
In an honest discussion with Donna Cryer, Surfing NASH explores the challenges of championing patient-centricity and the importance of allied health as many impending and important decisions come to a head for the NAFLD/NASH community. This introductory conversation features an impactful statement from Donna on the gravity surrounding these milestone moments and why patient inputs should be held paramount.

Donna Cryer joins Jörn Schattenberg, Louise Campbell and Roger Green for an impactful episode which weighs the complexities of competing needs across all Fatty Liver stakeholders. The session expands discourse on the recently discussed ICER draft report to consider the developing nomenclature consensus and other impending decisions. Critically, the group grapples with challenges associated with honoring the precedence of patient-centricity.

Roger prefaces this conversation with a brief recap of Season 4 Episode 19 where a panel of patient advocates (Wayne Eskridge, Michael Betel and Anthony Villiotti) dissected glaring inaccuracies and shortcomings within the ICER draft report. Roger goes on to introduce the rollout of the nomenclature consensus work and candidly shares that it is appearing to be a compromised solution between academics. He suggests it appears other stakeholder needs and the practicality behind approving drugs, educating patients and moving the management of the disease forward are not being considered holistically. From here, Donna describes her frustrations with the weight and value allotted (or lack-thereof) to patient inputs on such important matters. Her statement is powerful and urgent, and describing it in words does not capture the gravity of the moment.

Listen to the full feature to engage with many more insightful moments. If you enjoy the episode, have questions or interest around endocrinology and Fatty Liver disease, we kindly ask that you submit reviews wherever you download the discourse. Alternatively, you can write to us directly at questions@SurfingNASH.com.

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