- A webinar on Monday marked the official US launch of the NASH Education Program, an initiative that seeks to raise awareness of the growing NASH epidemic and to improve medical education surrounding NASH. As background, this program was borne out of GENFIT’s NASH awareness campaign, which has been ongoing in France since March 2017. That said, the US-based NASH Education Program is an independent, standalone organization that will create online resources in English and Spanish to educate people about the causes and consequences of NAFLD/NASH. For one example, check out this awesome ~five-minute video framing NASH as a “silent threat” and “impending storm.”
- The NASH Education Program’s first initiative is spearheading June 12 as the first annual International NASH Day. Events in 20 global cities (including London, Paris, New York, and Mexico City) will invite patients, advocacy groups, and clinical experts to gather, spreading awareness about NASH and garnering support for policy solutions to improve NASH standard of care.
- “This is a true public health epidemic that requires a true public health solution,” said Global Liver Institute CEO Ms. Donna Cryer. Establishing NASH as a public health crisis and as an area of unmet need was a major theme of the webinar. UT’s Dr. Stephen Harrison noted that NAFLD affects 34% of the adult population and also shows “alarming” trends in children – foreshadowing a continuing rise in NASH prevalence. He explained that only 11% of NASH patients have ever heard about the disease before being diagnosed, and 35% have trouble explaining NASH to their families because of the popular misconception that liver disease is caused by alcohol abuse.
The new NASH Education Program kicked-off Monday with a fascinating and informative webinar, featuring Ms. Donna Cryer (President and CEO of the Global Liver Institute), GENFIT CEO Dr. Sophie Mégnien, and other outstanding speakers. The initiative seeks to raise awareness of NASH and to improve medical education surrounding NASH, which is certainly an area of unmet need. The condition too-often goes unrecognized and undiagnosed, despite a staggering 12% prevalence among US adults; for context, diabetes prevalence in the same population is ~9%.
The NASH Education Program will produce web resources (in both English and Spanish) to educate people about the causes and consequences of NAFLD (non-alcoholic fatty liver disease) and NASH, and to convey the scale of the epidemic. For one example, check out this ~five-minute video that frames NASH as a “silent threat” and “impending storm.”
The new initiative is led by a coalition of hepatologists and diabetologists, which is fitting in our view, given the immense overlap between NASH and type 2 diabetes (indeed, some experts have suggested screening for NASH in diabetes CVOTs to catch liver disease earlier and to collect more data on its progression and implications).
During the webinar, Dr. Pascaline Clerc (US Department of the Interior) announced that the program will soon be expanded to include public health announcements and social media outreach, with the goal of equipping the healthcare sector to address the growing NASH epidemic.
Dr. Mégnien elaborated that the program’s launch also coincides with the first annual International NASH Day, coming up on June 12. On this day, the NASH Educational Program will host events in 20 cities (including London, Paris, New York, and Mexico City), convening patients, advocacy groups, and clinical experts. The educational content will be widely streamed and we hope it makes a splash. Overall, we view the NASH Education Program as an excellent step toward greater awareness of this public health crisis.
For any emerging disease state at the cusp of having an available therapy (no treatments for NASH have been FDA-approved yet, but promising phase 3 candidates include GENFIT’s elafibranor and Novartis/Allergan’s cenicriviroc), generating awareness is crucial: For one, it’s helpful in activating the eligible patient population for ongoing clinical trials; several companies including Gilead have confronted recruitment challenges for their NASH studies. Second, when pharmacotherapy options eventually reach the market, disease awareness is critical to increase the number of prescribers. Moreover, lack of awareness is an issue of particular consequence for NASH due to its asymptomatic nature – without outside education on the disease, it’s unlikely to catalyze discussion between patients and their providers.
NASH: An Area of Immense Unmet Need
- Besides introducing the NASH Education Program, this webinar emphasized the sheer height of unmet need in this therapeutic area. Dr. Stephen Harrison (UT Health Science Center, San Antonio, TX) noted that NASH’s less severe precursor, NAFLD, affects 34% of the adult population and also shows “alarming” trends in children – foreshadowing a continuing rise in NASH prevalence. Furthermore, he explained that only 11% of NASH patients have ever heard about the disease before being diagnosed, and 35% have trouble explaining NASH to their families because of the popular misconception that liver disease is caused by alcohol abuse. There’s sharp stigma associated with this as well, which we imagine is another obstacle standing in the way of swift NASH diagnosis and open communication about the disease. These are certainly domains where the new NASH initiative could provide much-needed education.
- “This is a true public health epidemic that requires a true public health solution.” Ms. Cryer, President and CEO of the Global Liver Institute, delivered this powerful quote, and we think this is such an important message to spread. We need all healthcare stakeholders to better understand NASH – this includes public health experts and policymakers, as well as PCPs, diabetologists, and other specialists.
Background on the NASH Education Program
- The NASH Education Program originated as a campaign from GENFIT, announced in December 2016 and launched in France in March 2017. This expansion in the US marks significant momentum for the initiative, and notably, the NASH Education Program itself has been established as an independent, standalone organization. As we eagerly anticipate NASH therapies and better diagnostic tools (the current standard for diagnosis is an expensive, invasive liver biopsy), we hope this education program will fill the unmet need when it comes to raising NASH awareness and fostering a sense of patient community.
-- by Abigail Dove, Payal Marathe, and Kelly Close