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S3-E23.3 – How NAFLD Patient Advocacy Works: Disease Targets and Policy Successes in The Fatty Liver Community

Achim Kautz and Andrew Scott discuss some of their successes in patient advocacy, while Louise Campbell raises a question about which patients should be the focus of advocates' activities.

The entire Fatty Liver community benefits from NASH Patient Advocacy and the work of our advocates, but relatively few of us understand what advocates do or how we benefit from their work. Leading German patient advocate Achim Kautz and Global Liver Institute Vice President of Policy and Public Affairs Andrew Scott discuss how they came to Fatty Liver patient advocacy, their priorities and activities that support our community, and the unique challenges of their fascinating work.

This episode starts with Roger Green inviting Achim and Andrew to discuss a specific success they have had in order to help listeners understand the nitty-gritty details of how their jobs work. After Achim shares a story about bringing patients with multiple metabolic diseases together for advocacy. Before Andrew can answer, Jörn Schattenberg invites Louise Campbell to comment on the disease and target population. She notes the breadth of the Fatty Liver community, from early-stage asymptomatic patients who have never been told they have disease along the spectrum to patients with advanced fibrosis and cirrhosis. Andrew and Achim acknowledge the breadth of patients in the Fatty Liver disease community and describe the process as a delicate balancing act given that the largest number of patients with unhealthy livers have early-stage disease they do not acknowledge or even know about, while the patients with late-stage disease are the ones who seek help most aggressively.

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