New NASH survey available on NASHTRUTH.com reveals that 6 out of 10 NASH patients say there is not enough information about the disease available to them
NASHTRUTH.com provides people living with NASH with resources to start a more productive dialogue with their healthcare providers about their disease
NEW YORK, Sept. 11, 2019 (GLOBE NEWSWIRE) -- Intercept Pharmaceuticals, Inc. (ICPT), a biopharmaceutical company focused on the development and commercialization of novel therapeutics to treat progressive non-viral liver diseases, today announced the launch of NASHTRUTH.com, a new online educational resource for people with advanced fibrosis due to NASH. NASHTRUTH.com was developed in collaboration with people living with NASH and leading liver patient advocacy organizations.
NASHTRUTH.com features information about the risks of disease progression, key findings from a recent NASH disease state survey that has identified critical gaps in knowledge about the disease and personal stories from people living with NASH. The site also contains resources to help people living with NASH have more productive conversations with their doctors. Among the tools and information available are a downloadable discussion guide and links to patient organizations that provide additional support and resources.
“The first time I heard the word ‘NASH’ was the same day I was diagnosed with liver cirrhosis,” said Anthony Villiotti, a liver transplant recipient, liver cancer survivor and President of NASH kNOWledge. “Years ago, I was told I had ‘a little fat in the liver,’ but never realized that it could lead to dangerous liver scarring. I always tell people that I wish I had been given a roadmap to help me understand what to expect with this disease as it progresses. Hopefully, my story and the other stories on NASHTRUTH.com will help empower people with NASH to have better conversations with their doctor about their risk.”
The NASH survey, which polled patients with fibrosis due to NASH, healthcare providers and the general public, uncovered an urgent need for better information about NASH and the risks associated with disease progression. While almost all patients surveyed (89%) conducted their own research upon learning of their diagnosis, the majority reported being dissatisfied with the quantity and quality of NASH information available to them. The survey also found that patients are much more likely to say there is not enough information regarding NASH (61%) compared to other conditions like obesity (30%) and type 2 diabetes (17%). Moreover, among those patients who have researched the condition, more than half (54%) rated the quality of available information about NASH as fair or poor.
The survey also revealed that patients are not always aware of the serious consequences of NASH, despite the fact that a majority of healthcare providers believe that all or most patients understand disease progression. Among patients surveyed, 43% reported that they do not recall learning about the risk of progressing to cirrhosis at diagnosis. However, 70% of patients said they would be much more motivated to make lifestyle changes if they knew they were at high risk of developing liver cirrhosis.
“The NASH survey results provide important insights into the community’s understanding of this disease,” said Gail Cawkwell, MD, PhD, Intercept’s Senior Vice President, Medical Affairs, Safety & Pharmacovigilance. “We’ve seen considerable innovation and investment in NASH clinical research over the last several years, but we can do much more to improve education on the disease and encourage better conversations between patients and healthcare providers. We have a big challenge in front of us, but when I think about the inspiring people living with NASH who are sharing their stories to help others, I’m optimistic about the future.”
About the NASH Disease State Survey
The NASH disease state survey was conducted by Ipsos in the U.S. from March 19, 2019 to April 25, 2019 among three audiences – patients diagnosed with NASH (n=164), healthcare providers who treat NASH (n=302) and members of the general public (n=1,027 adults ages 18 and older). Quotas were applied to patient respondents to ensure all stages of NASH were included, and all data collected from the general public were weighted by key demographics (i.e., age, gender, education, region, etc.) to current population parameters. For additional information, visit NASHTRUTH.com.
About Advanced Liver Fibrosis due to NASH
Nonalcoholic steatohepatitis (NASH) is a serious progressive liver disease caused by excessive fat accumulation in the liver that induces chronic inflammation, resulting in progressive fibrosis (scarring) that can lead to cirrhosis, eventual liver failure, cancer and death. Advanced fibrosis is associated with a substantially higher risk of liver-related morbidity and mortality in patients with NASH, and as early as 2020, the disease is projected to become the leading cause of liver transplants in the United States. There are currently no medications approved for the treatment of NASH.
Intercept is a biopharmaceutical company focused on the development and commercialization of novel therapeutics to treat progressive non-viral liver diseases, including primary biliary cholangitis (PBC) and nonalcoholic steatohepatitis (NASH). Founded in 2002 in New York, Intercept has operations in the United States, Europe and Canada. For more information, please visit www.interceptpharma.com or connect with the company on Twitter and LinkedIn.
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