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.
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