NASH News March 2021 - Recognizing NASH Patient Advocacy
Recognizing NASH Patient Advocacy
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.
Global Liver Institute (GLI), Fatty Liver Foundation, NASH KNOWledge, EASL International Liver Foundation (EILF) and other organizations certainly share the goal of elevating the visibility of the impact of NASH on patients, families, and communities around the world and ensuring that the actions of public health, clinical workflows, regulatory bodies, and drug and device developers reflect the seriousness of the disease. Perhaps it was a case of altitude-induced memory loss, but I will use this perspective to reacquaint the speakers and registrants of the meeting with the work of the NASH patient advocacy community and the accomplishments made in just 3½ short years.
European Liver Patients’ Association (ELPA) was the first to bring a NAFLD-NASH Summit to the European Union Parliament.
The Fatty Liver Foundation has responded to hundreds of patient questions, issued blogs and conducted innovative screening studies.
NASH kNOWledge has filmed a stirring documentary that has aired on many PBS stations.
EILF has been working with Wilton Park to conduct dialogues and build care pathways and NAFLD consensus statements.
GLI launched the GLI NASH Council in October 2017. The NASH Council has grown to more than 70 nonprofit, academic, and industry partners. GLI staff lead legislative and regulatory advocacy, serve on multiple steering committees, advise research programs, write letters of support for research grants, speak on multiple continents and have created several resources in multiple languages including:
The U.S. NASH Action Plan
GLI and the GLI NASH Council released the U.S. NASH Action Plan to comprehensively address NASH and its impact on patients and families, public health, and the economy.
The Language of NASH: A Narrative Guide to Communication on NASH
To increase awareness of fatty liver disease, we all need to speak the same language. This framework for communication about NAFLD and NASH will help physicians, patients, caregivers, families and advocates use the same wording to send a clear message: it’s time to increase awareness, diagnosis and treatment options for NASH.
NASH Core Curriculum: A Comprehensive Online Resource Center
Launched online this winter, this new curriculum allows clinicians to improve their understanding of foundational concepts in NASH diagnosis, management and emerging pharmacologic treatment strategies. Resources will be added throughout the first half of 2021 and are being developed primarily for clinicians, including advanced practice clinicians, in hepatology, gastroenterology, endocrinology and primary care. The full curriculum will include CME/CE-certified video modules, ClinicalThought™ expert commentaries, and downloadable presentations and resources.
So rather than issuing a challenge to the NASH Patient Advocacy Community, I would ask clinicians, researchers and others interested in raising the level of NASH activism to the same levels of impact and effectiveness as our brothers and sisters in the HIV/AIDs, breast cancer, or other communities to answer the call, recognize and support this nascent patient community and build it together.
Here are 10 ways you can help:
Participate in International NASH Day.
Commit to one action in the U.S. NASH Action Plan.
Offer a research assistant to help write a grant proposal.
Review patient education materials.
Provide data to support policy asks.
Offer to host patient-led or partnered grand rounds or other events at your institutions.
Refer your patients for advocacy training.
Coax your celebrity patients to step outside the stigma and serve as honorary ambassadors.
Donate your dollars. Most philanthropy goes to research and not the policy, payer and support advocacy that ensures that patients can access innovation equitably.
Ask one of the tireless NASH patient advocacy organization leaders what would lift them the most — and do it.
Thank you to all of the GLI NASH Council members and all others who have answered the call.
Interested to hear more of this conversation.
Donna R. Cryer, JD
President & CEO
Global Liver Institute
GLI Updates
Panels Meet as Part of 2021 NASH Diagnostics Forum™
In the fourth quarter of 2020, GLI, Albert Einstein College of Medicine-Montefiore Medical Center, Center for Continuing Professional Development, and Integritas Communications received an educational grant from Pfizer, Inc., to execute the 2021 NASH Diagnostics Forum™. As part of this initiative, a multidisciplinary panel of experts met three times this winter to conduct a comprehensive analysis of available data on noninvasive biomarkers and tools for diagnosis, prognosis, and monitoring of NASH. The findings will be disseminated to the broader medical community via multiple media later this year, including through a continuing medical education webcast. Read more about this initiative.
Become a Partner for International NASH Day
GLI is now accepting applications from non-profit organizations to become #NASHday partners! GLI is asking this year’s partners to submit short videos and organize virtual events focused on nonalcoholic fatty liver disease (NAFLD) and NASH in their communities. GLI will share the videos online, as space allows, to highlight how patients around the world experience NASH. In addition, the events will allow organizations to increase awareness about NASH within their local communities. Among a number of benefits, partners may use multilingual NAFLD/NASH educational materials and a limited number may receive program-support grants. Learn more about partner requirements and apply by April 15, 2021. Video submissions are also due April 15, 2021.
GLI 2021 #NASHday Activities
As part of the #NASHday activities this year, GLI will host international panels accessible online around the world focused on topics in NASH, such as innovations in diagnostics and the connection between NASH and obesity. In addition, new resources will highlight NASH in lean patients, information on participating in clinical trials for NASH treatments, and the relationship between NASH and diabetes. For the first time, GLI will also host online cooking presentations with chefs focused on healthy nutrition, an important aspect of NASH care and management. Read more in our March 4 press release.
Surfing the NASH Tsunami Podcast - March Episodes on NASH-TAG
In the weekly Surfing the NASH Tsunami Podcast, drug developers, investors, researchers, and corporate executives wrestle to understand what is happening in the commercial development of NASH medications. Roger Green, MBA, hosts the podcast and GLI's Donna Cryer, JD, is frequently featured as a guest speaker. Tune in to the latest episodes from March featuring commentary from Donna on the recent NASH-TAG Conference 2021, held March 11-13. Then, check out the March 4 episode featuring Donna and the GLI perspective, S2-E9 – Novel Approaches to Drug-Free Treatment of Early Fatty Liver Disease.
U.S. NASH Action Plan: Recommendations for Patients and Caregivers
In our January NASH News, we shared GLI’s U.S. NASH Action Plan [PDF], which includes a set of actionable recommendations for the full spectrum of groups involved in NASH prevention and treatment, including: patients and caregivers, clinicians, patient advocacy organizations, medical societies, industry, policymakers, regulators, health systems, and health insurance payers. In each edition of NASH News, we’ll highlight recommendations for each group of NASH stakeholders. This month, we’re highlighting some of the recommendations for patients and caregivers:
Education: Ask your provider for NASH patient materials. If none are available, share the GLI NASH materials in multiple languages.
Diagnosis: Recognize the particular risk of type 2 diabetes and the need for screening. Insist on evaluation for NASH from providers in endocrinology or primary care.
Patient Management/Treatment: Be an active partner in your/your loved one’s care, recording symptoms (like fatigue), weight, blood glucose, and blood pressure at home and signing on to patient portals or asking for copies of lab results and medical records between visits.
Policy Effort/Legislation: Consider becoming a patient advocate, join advocate training programs like the GLI Advanced Advocacy Academy, and participate in policy advocacy events.
Upcoming Events
March 31: GLI LIVE episode featuring Joe Nadglowski, President & CEO, Obesity Action Coalition. See bio.
April 1: NASH Council Policy Working Group. Contact Andrew Scott for more information.
May TBD: Full NASH Council Meeting. Contact NASH@globalliver.org for more information.
June 10: International NASH Day. To become a partner, submit an application online by April 15. Contact Larry Holden for sponsorship information.
September 20-24: Advanced Advocacy Academy. Contact Jen DelGrande for more information.
Patient Perspective
Patient Advocacy
Katie Brown is a patient advocate—for herself, for her father, and for thousands of patients and families. After surviving lung cancer at the age of 22, she became a caregiver and advocated on behalf of her father during his cancer journey. Eventually, she helped create the Lung Cancer Support Community, which currently has over 10,000 members.
Katie is also living with a genetic liver disease and has stage 4 NASH. In 2015, she was diagnosed with cirrhosis. Her message to the liver community focuses on compassion and the importance of promoting clinical trials. “You can do everything ‘right’ and still have NASH like me,” Katie shares. “There is very little information on NASH and no real treatment options. Health systems need to make patients aware of clinical trials.”
Katie feels a tremendous responsibility as a cancer survivor and co-survivor to raise awareness, share information and resources, and educate others to become advocates for their own medical care. She works as the vice president of support and survivorship programs for LUNGevity Foundation and is a certified oncology patient navigator and caregiving consultant. Read more about Katie and her work on her website.
GLI Partner Highlight
North American Society for Pediatric Gastroenterology, Hepatology and Nutrition
GLI is pleased to welcome the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) as one of the newest members of the GLI NASH Council. NASPGHAN membership includes more than 1,800 pediatric gastroenterologists, predominantly in 46 states, the District of Columbia, Puerto Rico, Mexico, and eight provinces in Canada. Learn more about NASPGHAN on the society’s website, including about Bowel Sounds: The Pediatric GI Podcast.
Apollo Endosurgery Receives FDA Breakthrough Device Designation for the Orbera Intragastric Balloon for the Treatment of Patients with NASH
Apollo Endosurgery announced on March 1 that it has received a Breakthrough Device Designation from the U.S. Food and Drug Administration (FDA) for the Orbera Intragastric Balloon, specifically for the indication for use in treating patients with BMI between 30-40 kg/m2 with noncirrhotic NASH with liver fibrosis. We applaud the acknowledgement from the FDA of the urgency for treating this life-threatening disease and will continue to engage with the FDA to ensure that the perspectives of patients with NASH are represented throughout all NASH drug and device approval processes. Read the press release from Apollo Endosurgery.
International Liver Congress™ Held by EASL
EASL, The Home of Hepatology, has announced that The International Liver Congress™ 2021 will now be held June 23-26, 2021, through the online learning platform, EASL Campus. Three areas will be given special emphasis: basic science; liver transplantation and surgery; and public health. The framework of the six thematic EASL tracks remains the same: cirrhosis and complications; general hepatology; immune-mediated and cholestatic diseases; liver tumors; metabolism, alcohol, and toxicity; and viral hepatitis. Registration is now available.
Research & Development
India Becomes First Country to Approve Drug for NASH
The Drug Controller General of India recently approved a New Drug Application from Zydus for saroglitazar for the treatment of non-cirrhotic NASH in India. Saroglitazar was launched in India in September 2013 for the treatment of diabetic dyslipidemia and hypertriglyceridemia in patients with type 2 diabetes not controlled by statins alone. GLI is pleased to see innovation in treatment for NASH patients, and we continue to support increasing treatment options for patients with NAFLD and NASH worldwide. View the March 5 press release from Zydus.
Study: The Effects of a High Fructose Diet on the Immune System
Fructose intake has substantially increased throughout the developed world and is thought to contribute to the development of non-communicable conditions such as obesity, type 2 diabetes, and NAFLD. Looking further into the effects of fructose, a study published in Nature Communications in February investigates the role of fructose on the immune system via oxidative metabolism. The study indicates that frequent fructose consumption contributes to lipopolysaccharide (LPS)-induced inflammation and leaves cells metabolically vulnerable to further challenges in both human and mouse mononuclear phagocytes. Read more in the study, Fructose reprogrammes glutamine-dependent oxidative metabolism to support LPS-induced inflammation. Additional information is available in the article, A diet high in this may be disastrous for your immune system.
Clinical Care
NAFLD in Lean Asians
A new study, NAFLD in Lean Asians, published in January in the journal, Clinical Liver Disease, focuses on patients with NAFLD who are lean, an entity that remains poorly characterized and understood. Although these patients demonstrate distinct pathophysiological mechanisms culminating in similar liver histology to patients who are obese, individuals with NAFLD who are lean remain at risk for developing hepatic and extrahepatic complications. Targeted studies are required to further clarify lean NAFLD pathogenesis and to develop appropriate management approaches. Read more about this study and watch an interview with study author Jacob George M.D., Ph.D., from the Westmead Hospital and University of Sydney in Australia.
Food for Your Health Campaign
The British Association for Nutrition and Lifestyle Medicine (BANT) has launched the Food for your Health campaign to encourage individuals to prioritize their diet and nutrition in support of their health. The underlying motive for the campaign is to address the continued rise in diet-induced metabolic dysregulation. Read more in the article, Industry campaign calls for personalised nutrition recognition as model to improve national health.
Australian Study: Persistent Passive Smoking Exposure Increases NAFLD Risk
A study published in January in The American Journal of Gastroenterology examines exposure to passive smoking from childhood through adulthood and the development of NAFLD. The study states, “Passive smoking in both child and adult lives are associated with increased risk of adult fatty liver, suggesting that the prevention of passive smoking should start as early as possible and maintain throughout lifetime.” View the study, Childhood and Adulthood Passive Smoking and Nonalcoholic Fatty Liver in Midlife: A 31-year Cohort Study. Read more in the article, Persistent passive smoking exposure increases NAFLD risk.
Current Clinical Trials
Fatty liver disease (FLD) and non-alcoholic steatohepatitis (NASH) are increasing in prevalence worldwide, creating a major global public health crisis. To adequately educate patients, practitioners and policy makers, there is a need to collect, curate and share relevant information. NASH News, published on behalf of the Global Liver Institute’s NASH Council, intends to meet that need and to facilitate collaboration across the emerging NASH community on a monthly basis.
We would appreciate your feedback and content contributions. Please contact nash@globalliver.org