Welcome to the first issue of the Global Liver Institute NASH News! As recognition of fatty liver disease and non-alcoholic steatohepatitis (NASH) as a true global health crisis rises the need to collect, curate, and share relevant information in a timely fashion grows as well. The GLI NASH News is intended to meet that need and facilitate collaboration across the emerging NASH Community on a monthly basis.
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GLOBAL LIVER INSTITUTE
On October 18, 2017, GLI convened the first NASH Council. GLI’s NASH Council, recognized by the NIDDK and NHLBI, aimed to shine a spotlight and coalesce an expanded set of stakeholders, in addition to hepatology, around the urgency of developing mechanisms for quantifying and addressing the silent epidemic of fatty liver disease (NAFLD) and nonalcoholic steatohepatitis (NASH) in the U.S. and abroad. Current estimates are that as many as 2 in 5 people already have NAFLD or NASH yet these conditions are underrecognized, underdiagnosed, and undertreated.
For more information please email NASH@globalliver.org
The Most Lethal Liver Disease You’ve Never Heard Of: Nonalcoholic Steatohepatitis
October 23, 2017
“In the United States, approximately 86-108 million individuals have NAFLD and between 9-15 million individuals have NASH. If this trend continues, experts anticipate 25 to 30 million americans will suffer from NASH in 2025. Currently, there is no FDA approved therapy for NASH, and the growth of this disease is contributing to the rising rates of liver cancer, one of the deadliest cancers.”
Call to Action: Support recognition, therapy (Rx), and research
Mary Rinella, MD, FAASLD: Professor, Feinberg School of Medicine, Northwestern University
Arun Sanyal, MD, FASSLD: Professor, Virginia Commonwealth University School of Medicine
Margaret Shand: Registered Nurse and Liver Transplant Recipient
Zobair Younossi, MD, MPH, FASSLD: Chairman, Department of Medicine, Inova Fairfax Medical Campus
European Liver Patients Association (ELPA)
The first European Policy Summit on non-alcoholic fatty liver disease was organised by the European Liver Patients’ Association (ELPA) in partnership with the European Association for the Study of the Liver (EASL) and took place in the European Parliament the 31st of May 2017 hosted by Alojz Peterle, Member of the European Parliament (MEP). The event was moderated by ELPA Vice President Marko Korenjak and EASL EU Counsellor Prof Helena Cortez-Pinto.
“The seriousness of NAFLD/NASH and the potential impact it will have on healthcare systems needs to be recognized and addressed before we encounter an epidemic across Europe” - Tatjana Reic, President, ELPA.
The main objectives of the NASH-NAFLD Summit were:
Make policy-makers, decision-makers and general public understand what NAFLD-NASH is and their socio-economic impact on our society.
Identify how policy can help put in place an effective strategy to face this new public health threat.
Identify concrete next steps that would help in tackling this new challenge.
Start engaging key stakeholders to find effective policy answers.
Establish ELPA – EASL leadership in non-alcoholic fatty liver disease policy arena.
By the end of 2017 the program and the content will be presented to Commissioner Moedas.
In the beginning of 2018 the Steering Committee will gather again to define the agenda and prepare key recommendations for next years summit to be held in May.
Fatty Liver Foundation (FLF)
A major problem for solving the diseases of NAFLD and NASH is that there are more clinical trials being planned than there are patients to be considered as participants. Patient education about trials is spotty and many don’t understand or have had no opportunity to consider participating. The Fatty Liver Foundation and Antidote, as a result of a connection made at the NASH Council meeting, have joined forces to provide outreach and tools to liver patients who might want to consider a clinical trial. By making it easier for patients and researchers to connect the process of drug development can move faster.
The Liver Forum is an initiative of the Forum for Collaborative Research, part of the University of California, Berkeley School of Public Health. The Liver Forum was launched in 2014 in response to The Trial Designs and Endpoints for Liver Disease Secondary to Nonalcoholic Fatty Liver Disease (NAFLD) meeting sponsored in 2013 by the U.S. Food and Drug Administration (FDA) and the American Association for the Study of Liver Disease (AASLD).
The Liver Forum aims to advance the regulatory sciences for the treatment of Non-Alcoholic Steatohepatitis and liver fibrosis by providing an independent and neutral venue for ongoing multi-stakeholder dialogue to identify and address gaps in the field. Neutrality and objectivity is ensured through representation and active engagement of scientific experts from all stakeholder groups, including academia, industry, patient community and regulatory agencies.
GLI President and CEO Donna R. Cryer, JD is included in this expert group of stakeholders on the steering committee as a community representative.
Recently the Liver Forum published their first paper! Please see the press release and paper here.
In order to address unmet needs related to this disease that deserves a wider exposure, GENFIT has begun to lead a public health initiative title the NASH Education Program, aimed at producing and disseminating essential medical knowledge toward a targeted audience.
See their key insights from the first US survey commissioned by the NASH Global Health ObservatoryTM here.
FDA Drug Safety Communication: FDA warns about serious liver injury with Ocaliva (obeticholic acid) for rare chronic liver disease
For Your Calendar
January 4-6: NASH-TAG 2018. Park City, UT.
February 26-27: Global NASH Congress. London, United Kingdom.
April 23-25: 2nd Annual NASH Summit. Boston, MA.
June 12: International NASH Information Day
Kristin Kirkpatrick’s: Skinny Liver