There is not a day that passes that I do not receive a call to help recruit for a clinical trial. The efforts to reach out to patients seem ad hoc, scattershot, and an afterthought to rescue research and recruitment plans that fail to resonate when faced with the realities of a competitive trials landscape in a disease state with low awareness, engagement, and connection to the care centers that would normally serve as research sites. Although new practice-based research sites are standing up and even some patient advocacy organizations are implementing screening initiatives that contain an aspect of connection to research, the current model of clinical trial recruitment is unsustainable and ill-equipped to help patients or further the research needed to address NASH at the scale and in the time that we need to get multiple treatments approved to meet the urgent patient needs.

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Global Liver Institute (GLI) and many of the leaders of the liver, diabetes and obesity advocacy community have submitted a formal letter and comments to the U.S. Preventive Services Task Force (USPSTF) urging the task force to mention the direct connection between diabetes and liver diseases, such as nonalcoholic fatty liver disease (NAFLD) and nonalcoholic steatohepatitis (NASH), in their recommendations for type 2 diabetes (T2D) and prediabetes screening. The current Draft Recommendation Statement from USPSTF recommends screening adults ages 35 to 70 years who are overweight or obese for prediabetes and T2D but does not mention the strong link between T2D and chronic liver disease.

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For many NASH patient advocates and leaders of patient advocacy organizations, the opening of the much anticipated NASH-TAG meeting in Deer Valley, Utah, the annual convocation of NASH researchers, invoking the controversial AIDS activist Larry Kramer was the cause of much consternation. Listen to the real time reactions on the Surfing the NASH Tsunami podcast.

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