nafld patient advocacy

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 conversation winds up focusing on two key areas to focus future organizing and advocacy. The first is to think locally. Achim and Andrew point out that they can find success working with local and regional governments and then build up from this success to a national discussion. The second is clear, consistent communication between all stakeholders in the Fatty Liver community and between the community and the payers and government forces we need to persuade.

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 conversation starts with some polite disagreement about whether there is an actual community. At the end of Conversation 23.3, Achim suggested that there is no clear community because of the lack of Fatty Liver focus in specialties and patient groups addressing other metabolic diseases like diabetes, obesity and heart disease. Andrew Scott discusses the work of the Global Liver Institute NASH Council, which focuses on bringing these exact communities into the discussion, at least within the US. The rest of the conversation focuses on using an understanding of metabolic parameters to know which patients should see primary care vs. hepatologists vs. other specialists. It ends with Roger Green asking whether and how politicians, who want solutions that happen quickly and have hard metrics, can get behind this broad an effort.

The entire Fatty Liver community benefits from NASH Patient Advocates 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. Jorn Schattenberg, Louise Campbell and Roger Green, bring their own experiences talking and working with government to a far-reaching conversation that reflects all the complexities that people like Andrew and Achim manage daily.

The episode starts with Achim Kautz discussing his background, including his path from his first career (you'll have to listen to find out) to general liver advocacy to Fatty Liver advocacy. after groundbreakers, the focused conversation starts with Achim and Andrew discussing their backgrounds, motivations and mission. Jorn Schattenberg joins the conversation to discuss his experiences in speaking with politicians about liver health and the impact conversations can have. Andrew follows this story up by describing his focus on getting patients "a seat at the table" when Fatty Liver issues are discussed, debated and decided upon. The discussion shifts to focus on the similarities and differences working in the US and German systems (hint: more similar than different), including compelling comments from Achim and Andrew about how to message to elected officials (very quickly, and with the goal of piquing their interest.) 

The rest of the discussion focuses on the complexities and dualities of the patient advocacy task: advocating for a disease with long-term consequences to an audience that thinks in one-year or one election cycle chunks; supporting both the later stage patients (HCC and cirrhosis) and earlier stage (metabolic and CVD-affected) patients, and building cross-communication between stakeholders (and, in the case of providers, different specialties) in a world that organizes around siloes. On a couple of issues, our conversation presents different perspectives. One example: Achim and Louise feel there is no community due to siloing of providers and specialties; Andrew noted that Global Liver Institute's NASH Council focuses on these kinds of collaborations.

This conversation is fueled by intellect, passion and occasional humor and provides a broad perspective on a function that brings tremendous value to our industry.