Rates of Liver Cancers Are Going Up – and Communities of Color Face the Most Risk
Global Liver Institute Launches 5th Annual #OctoberIs4Livers Campaign: Driving Equity in Liver Cancers
Washington, DC – October 1, 2022 – Global Liver Institute (GLI) today launches its 5th annual #OctoberIs4Liver education and awareness campaign, which calls attention to liver cancer – the third deadliest cancer in the world. Throughout the month, GLI will use media, social media, educational expert panels, and other events to bring patients, survivors, caregivers, advocates, clinical experts, industry, and policymakers together around this critical issue.
A liver cancer diagnosis provides a bleak outlook for over 900,000 people around the world each year. Five years after being diagnosed, less than a third of people are still alive. In South Korea, which has the best outcomes, just under 33% of people survive this long; in the U.S., for instance, only 20% do. Tragically, around 70% of these cases of liver cancer could have been prevented by eliminating many modifiable risk factors. This fact makes it more troubling that vulnerable populations, especially indigineous and ethnic minority communities around the world, bear a greater burden of liver cancers than majority populations. In the U.S., for example, Asian American men are 70% more likely than non-Hispanic white men to develop liver cancer. Similar inequity is evident across many demographic categories.
“Liver cancer is a grim disease, and it poses a formidable challenge to the world. That is why it is so essential that we join as a global community to stop upstream risk factors, improve access to care, and create new methods for treatment,” shared Sarah Manes, Director of Liver Cancers Programs at GLI. “We feel privileged at GLI to join with leaders across expertises and geographies to dive into candid conversation and to strengthen relationships. As GLI connects research, clinical, patient, and policy leaders, we will bring the daunting, nuanced challenges of this disease to the most brilliant minds in the field.”
There is something to look forward to all month!
Weekly Health Equity Roundtable conversations with leaders to discuss the unique challenges of liver cancer to LatinX, Black, Asian American, and LGBTQ+ people
The release of Liver Cancer Lessons education resources and videos in French, Spanish, and Mandarin on livercentral.org
The global premier of Fighting Liver Cancers with Food, GLI’s 3-part cooking show featuring celebrity Chef Daniel Thomas:
Eating for Energy
Eating for Comfort
Eating for Strength
And more!
“The #OctoberIs4Livers campaign, now in its fifth year, embodies the mission of GLI to improve the lives of patients by promoting the innovation and collaboration that will one day eradicate liver cancers. Despite the growing impact of liver cancer that encumbers our world, the disease receives insufficient funding and focus relative to the need,” GLI’s President and CEO, Donna R. Cryer, JD, said. “In alignment with President Biden’s recent remarks on the Cancer Moonshot Initiative, it is indeed time to reimagine the possibilities for prevention and treatment of liver cancers. The hundreds of thousands of people who are going to hear the words ‘you have liver cancer’ this year rely on innovation – in diagnostics, in navigation, and in policies – to save them.”
In addition to GLI’s events, our partners (including GLI’s Liver Action Network members and members of the Liver Cancers Council) will also be hosting webinars, fireside chats, and liver cancer care center open houses throughout the month.
Please join us the #OctoberIs4Livers Campaign!
Register to attend the weekly Health Equity Roundtables.
Use our social media toolkit to share ready-to-use messages with your friends, family, and followers.
Join the conversation on social media with #OctoberIs4Livers.
Sign our pledge to double the survival rate for liver cancer in your country by 2030.
Mark your calendar for GLI LIVE, which airs weekly at 12PM ET on Facebook, Twitter, and YouTube.
About Global Liver Institute
Global Liver Institute (GLI) is a 501(c)3 nonprofit organization founded in the belief that liver health must take its place on the global public health agenda commensurate with the prevalence and impact of liver illness. GLI promotes innovation, encourages collaboration, and supports the scaling of optimal approaches to help eradicate liver diseases. Operating globally, GLI is committed to solving the problems that matter to liver patients and equipping advocates to improve the lives of individuals and families impacted by liver disease. Follow GLI onTwitter,Facebook,Instagram,LinkedIn, andYouTube.
After brushing off the symptoms of shoulder pain, fatigue, and GI issues as part of my career as a paramedic, I eventually scheduled an appointment with my primary care physician in 2009 when I suspected that I had gallbladder stones. The ultrasound revealed that I had a grapefruit-sized tumor on my liver. Despite having no risk factors or family history of liver disease, the liver resection, which removed two-thirds of my liver, confirmed that I had intrahepatic cholangiocarcinoma. Three months after the resection, my cancer came back, and I knew that with the limited treatment options for this disease, the only way to beat it was by participating in a clinical trial, which I credit the persistence of my oncologist for finding. However, because my health insurance did not cover the standard of care that went into participating in the clinical trial, I was only left with the option of undergoing palliative treatment, causing tinnitus and neuropathy amongst other side effects, which drastically lowered my quality of life. The barrier that I faced with the lack of coverage from my health insurance paved my path to advocacy. I, along with other patients from Montana, traveled to the Capitol and shared our stories. This led to the passing of a law that ensured that health insurance companies in Montana would have to cover the costs for cancer patients who wanted to participate in clinical trials. While the results of this law were not quick enough for my benefit, I knew that it would at least help others down the road. Fortunately, through my own research, I came across a federally funded clinical trial that was being conducted by the National Cancer Institute; even though this clinical trial was not specific to cholangiocarcinoma, I was adamant about attempting to enroll in it. Soon enough, I became the ninth person to enter into the trial, the first cholangiocarcinoma patient in the trial, and the first to have a response. This clinical trial and the perpetual support from my husband and children are the reasons why I am here, twelve years later.
My cancer journey has not only changed my life, but my family’s – their perception on life, what is important, and their ability to value time. My children have become involved in advocacy, which bleeds into the family whether they want it or not. Through it all, I learned that it is important to be your own advocate. This is especially true for those who do not have access to care – to health experts or to clinical trials – due to financial or geographic barriers. Everyone deserves equal access, but change is a process; nothing moves fast in the cancer world, and I wish we could make things move faster. However, there is so much more hope than there was twelve years ago – which is why we must not lose hope because there is a lot of research being done. You don’t realize how big the cancer world is until you’re stuck right in the middle of it, which is why it is important to connect with advocacy organizations, so you’re not alone. Through my experience in advocacy, I learned that every patient just wants to talk to someone else who has been in his/her shoes. If you tell your story, you might make a difference.
St. Patrick’s Day seems to be a recurring theme throughout my liver cancer journey: I was diagnosed with hepatocellular carcinoma on March 17, 2017 and exactly one year later, I received the phone call telling me that I was getting a new liver. Before my battle with liver cancer, I had struggled with weight problems, diabetes, NASH, and cirrhosis. Within months after my liver cancer diagnosis, I received stereotactic body radiation therapy, which successfully stopped the growth of the tumor as I waited for a liver transplant. The wait was filled with emotional ups and downs, which was the worst part of the whole ordeal. I went from being optimistic for a new liver one day to writing my obituary the next. My liver was deteriorating. Hepatic encephalopathy and ascites were some of the many symptoms I experienced. After nine months of being on the transplant list, I finally received a liver transplant. Managing my health post-transplant has had its fair share of challenges: anti-rejection medication has made it more difficult to control my diabetes and weight, my kidneys have been damaged, and I still worry about the recurrence of NASH. So, having a successful transplant is half the battle, while keeping up with doctors’ recommendations is equally important.
A transplant can be a lifesaver, but it is not a get out of jail free card; after all, it carries ramifications that highlight the importance of early diagnosis and prevention as you are much better off not having to go through this obstacle in life. Unfortunately, early diagnosis and prevention is hampered by a lack of awareness around liver health. We grow up not knowing much about our liver. This further drives the stigma against having liver cancer. When my wife shared my liver cancer diagnosis with others, people often made assumptions about my alcohol consumption patterns. I was not destined to get liver cancer; rather, it was the end result of a combination of factors, including not being diagnosed early enough to take actions to prevent it. This is why as President of NASH-kNOWledge, I made it my and my organization’s mission to increase public awareness of non-alcoholic liver disease.
Anthony Villiotti
Springfield, Illinois, USA
Type II Diabetes (1985 – Present); NASH (2014 – 2018); Cirrhosis (2015-2018); Liver Cancer (2017 – 2018)
“You have liver cancer.” It’s a sentence that nobody wants to hear, but far too many people have heard (likely hundreds of thousands this year). Despite the prominent position that cancer has played in the public consciousness over the past 50 years, liver cancer – one of the deadliest cancers, one that is becoming more common – still hardly creates an echo.
We’re committed to changing that. Welcome to the very first edition of Liver Cancer News. As we expand our offerings for and about the broader liver health community, Global Liver Institute remains committed to keeping you informed about liver cancer. Each edition will include upcoming events, patient stories, exciting news, and more.
The tragedy of liver cancer is extended by the fact that in the vast majority of cases (at least 70%), the disease could have been prevented. It is sadly no surprise that a disproportionate brunt of this burden is born by vulnerable communities – the racial, ethnic, and sexual minorities who face barriers to health education, care, and more. To achieve the goals of the re-ignited Cancer Moonshot, it’s imperative to address liver cancer – and so, to address the needs of these vulnerable groups. Collectively, we have the tools to make a huge difference in the incidence of liver cancer. It’s time to use them.
Thus, the theme for GLI’s #OctoberIs4Livers campaign this year – Driving Equity in Liver Cancers – highlights an absolutely essential need. We are proud to launch the 5th annual iteration of the first and only global campaign dedicated to public awareness, policy, and clinical practice needs to prevent and manage liver cancer while educating and empowering those impacted by it. This year, we will connect diverse communities around the world – from our home in Washington D.C. to yours – to highlight, fight, and reduce the disparities associated with this cancer that has continued to rise for decades.
Advancing liver health equity takes collective effort. From doctors to scientists and from patients to caregivers, you are important in moving the needle forward. Start by signing GLI’s Global Call to Action, which aims to double the five-year survival rate for liver cancers by 2030. We hope you will join us by signing this pledge, and also hope you will join the conversation throughout #OctoberIs4Liver. We can’t afford to wait.
Donna R. Cryer, JD President & CEO Global Liver Institute
#OctoberIs4Livers
GLI is proud to release our 2022 #OctoberIs4Livers event calendar!
Every week during October, GLI will be broadcasting GLI LIVE episodes and Health Equity Roundtables for Black, LatinX/Hispanic, Asian and Asian American, and LGBTQ+ communities.
These Roundtables will launch ongoing Health Equity Community Conversations, starting in 2023! In addition to weekly sessions on timely topics in equity and innovation, keep an eye out for:
Liver Cancer Lessons in new languages
Social Media Toolkit so you can get involved
Fighting Liver Cancers with Food, a 3-part cooking show
New resources evaluating barriers to success in combating liver cancer in regions around the world
Global Liver Institute will be at AASLD in Washington, D.C., in November! Swing by to say hello at booth #237 or email info@globalliver.org to set up a meeting with us.
Patient Perspectives
Patient Name: Melinda Bachini
City/State/Country: Billings, MT, USA
Disease(s): Bile Duct/Liver Cancer (2009 – Present)
After brushing off the symptoms of shoulder pain, fatigue, and GI issues as part of my career as a paramedic, I eventually scheduled an appointment with my primary care physician in 2009. An ultrasound revealed that I had a grapefruit-sized tumor on my liver. The liver resection, which removed two-thirds of my liver, confirmed that I had intrahepatic cholangiocarcinoma. Three months after the resection, my cancer came back, and I knew the only way to beat it was by participating in a clinical trial, which I credit the persistence of my oncologist for finding. Read the full story
Patient Name: Anthony Villiotti
City/State/Country: Springfield, Illinois, USA
Disease(s): Type II Diabetes (1985 – Present); NASH (2014 – 2018); Cirrhosis (2015-2018); Liver Cancer (2017 – 2018)
A transplant can be a lifesaver, but it is not a get out of jail free card; after all, it carries ramifications that highlight the importance of early diagnosis and prevention as you are much better off not having to go through this obstacle in life. Unfortunately, early diagnosis and prevention is hampered by a lack of awareness around liver health. We grow up not knowing much about our liver. This further drives the stigma against having liver cancer. When my wife shared my liver cancer diagnosis with others, people often made assumptions about my alcohol consumption patterns. Read the full story
From June 3-7, 2022, 40,000 oncology professionals joined together at the American Society of Clinical Oncology (ASCO) Annual Meeting in Chicago, IL. GLI attended to hear the latest clinical cancer advances in all areas of cancer research.
GLI was invited to be a part of the Multi-stakeholder Texas Collaborative Center for Hepatocellular Cancer (TeCH) meeting on September 17, 2022. This conference brought together elected officials and decision-makers, community groups, and industry partners to discuss HCC in Texas and how we might guide strategies to improve HCC prevention, screening, diagnosis, and treatment.
Research & Development
On September 2, 2022, AstraZeneca, one of GLIs Liver Cancer Council corporate members, received FDA approval for durvalumab (Imfinzi, AstraZeneca UK Limited) in combination with gemcitabine and cisplatin for adult patients with locally advanced or metastatic biliary tract cancer (BTC). Congratulations to everyone involved in bringing this first immunotherapy treatment to patients with this rare, aggressive cancer.
People living with NASH, patients and families, whose lives and livelihoods are at risk from a liver disease few outside of a small circle of academic and clinical experts had heard of a few years ago have very practical, urgent needs:
Development and designation of simplified non-invasive testing and expanded screening (get beyond the biopsy)
FDA-approval of NASH drugs, devices, and diagnostics (find a treatment)
Clinical environments organized to provide coordinated integrated care to people at every stage of the NAFLD-NASH spectrum
The energies and resources expended by the liver community on a potential name change seem disproportionate and misaligned with these priorities.
Last month, AASLD and EASL, to their credit, jointly convened the global community for a nomenclature conference as part of a larger Delphi process to more fully consider the issue and plot a rational unified path forward. (For more information, view this statement)
For those who have been all too intertwined or are just becoming aware of this debate, the following points are meant to dispel some erroneous assumptions and clarify key issues in this controversy ahead of the next round of voting in the Delphi process and subsequent actions by the community.
The MAFLD-NAFLD debate did not start with patients or patient advocacy organizations. There is stigma around all liver diseases that needs to be addressed. As many patients find “non-alcoholic” helpful as hurtful, as many find “fatty” offensive to accept its accuracy. Those who support a change thinking that they are doing so to support patients are misguided as to our priorities.
A change in the name with or without a change in definition would be disruptive. It is the responsibility of leadership in the field to demonstrate that the benefit of the disruptive change is greater than the costs. Any proposed name or nomenclature change should be preceded by a thorough impact analysis inclusive of the impact (positive or negative) on drug development, clinical practice, patient advocacy and other key activities/stakeholder groups. In addition, a name change should have a detailed timeline for roll-out and funds dedicated to dissemination and mitigating any harms caused.
Any proposed change in name or nomenclature should meet the following criteria:
(Clinical) Accuracy
Affirmation (of patients by avoiding stigma & of other clinical specialties)
Adaptable (in ability to incorporate past, current, and future knowledge of the disease)
Adoptable (understandable in English and other languages)
(Able to increase) Awareness
(Facilitates patient) Access
To the everyday patient, the name of their condition falls a distant second to access to treatment and tools to treat their illness and let them live their lives. Changing the name of a disease is not an academic exercise.
Donna R. Cryer, JD President & CEO Global Liver Institute
International NASH Day – A Global Success
This 5th International NASH Day was a tremendous global success. We felt the power of the movement as over 70 partners and participants in over 70 countries took part. International NASH Day 2022 garnered a record-breaking endorsement from 22 prominent organizations from around the globe. On social media, thanks to the participation of more than 1,000 users, #NASHDay received over 15 million impressions and reached more than 4 million accounts.
As we mobilized efforts to #StopNASHNow, partners across the globe held bike-a-thons and school seminars, held press conferences and interviews on live talk shows, and more. For the first time, GLI’s partners led liver health screening events around the world to combat the critical need for early detection of NAFLD/NASH. Liver health screenings are a critical tool to enable early detection and diagnosis of NAFLD/NASH. As a result of thoughtful, creative solutions, GLI’s partners have been able to meet the needs of their communities across the globe.
International NASH Day grows significantly each year and in the process meets a growing demand for actionable, timely, and research-based liver health information. We are grateful to all the partners and participants who helped make the 5th Annual International NASH Day a success.
Stay tuned! The official International NASH Day 2022 Report will be available soon!
Advanced Advocacy Academy (A3) is GLI’s program to train patients and caregivers to become liver health advocates. As we embark on our sixth year of A3, join us in learning how to effectively advocate for liver health locally, nationally, and internationally.
October 2022 : #OctoberIs4Livers – Each year throughout the month of October – liver cancer awareness month – GLI shines a spotlight on liver cancers and the conditions that contribute to this underserved public health crisis. In 2022, #OctoberIs4Livers campaign will rally and equip the global community with actionable resources to allow reliable information, effective engagement, and solid advocacy to lead to improved outcomes for those affected or at risk for liver cancers. Contact Sarah Manes, smanes@globalliver.org for more info.
Join us this year as we honor the Leadership in Liver Health Award recipients:
Dr. Michelle McMurry-Heath, President and CEO of Biotechnology Innovation Organization
Dr. Leana S. Wen, Public Health Professor, George Washington University and Contributing Columnist, Washington Post
Email dthomas@globalliver.org for sponsorship opportunities or more information on attending.
Patient Perspective
Importance of Receiving a Timely Diagnosis
The COVID-19 pandemic has been devastating to population health, not only through COVID-positive cases but also because of the disruption of healthcare services that delayed diagnosis and treatment of all other diseases.
“I started seeing a local gastroenterologist but with COVID on the rise, I felt like I was being pushed aside. I had called my physician and during a phone call appointment, he point blank told me I was obese and need gastric bypass surgery. I am not in need of gastric surgery, I had only gained twenty pounds, the most since I had just quit smoking cigarettes. But because of COVID and the lack of education, it was pushed along. In 2021, I could not take the pain and discomfort anymore and went to my primary physician. When she called the gastric office and they finally made me a virtual appointment with their nurse practitioner, that’s when I finally received the NASH diagnosis. Still, I was just told to watch my carbs and sugar intake. No real education. I was officially diagnosed with Stage 2 NASH… I am still learning about my disease. This is a day-by-day experience. Awareness is key along with education and research not only to medical staff but patients as well.” – Laura
Educating the public on how timely identification of NASH can improve its outcomes is vital. Laura’s testimonial reminds us of the importance of raising awareness.
Stravitz-Sanyal Institute for Liver Disease and Metabolic Health at Virginia Commonwealth University
Backed by a transformative $104 million gift, the largest publicly shared donation for liver research in U.S. history, the Stravitz-Sanyal Institute for Liver Disease and Metabolic Health at Virginia Commonwealth University is leading innovative investigations that will reinvent the way patients with liver disease receive care. The institute takes a patient-informed, patient-centered approach to translational science – moving scientific discoveries forward to better diagnose, prevent and treat liver disease.
Improved treatments will prevent death from liver disease, and are likely to reduce the development of and ill effects from high blood pressure, diabetes, heart and kidney disease as well as a variety of cancers.
Arun Sanyal, M.D., leads the institute and is a visionary physician-researcher ranked in the top 0.1 percentile of all investigators in medicine based on impact on science. He envisions the institute’s work extending beyond the liver to include heart, brain, kidneys, diabetes and cancer – positioning the Stravitz-Sanyal Institute as a global leader and partner in liver disease and metabolic health research, teaching and patient care.
Intercept Announces Positive Data in Fibrosis Due to NASH from a New Analysis of its Phase 3 REGENERATE Study of Obeticholic Acid (OCA)
Intercept Pharmaceuticals announced positive results from a new interim analysis of its ongoing Phase 3 REGENERATE trial of OCA in patients with liver fibrosis due to NASH. This is the second analysis in which OCA has met the primary endpoint for the intent-to-treat population in REGENERATE and based on these results, Intercept will be re-submitting its NDA for OCA in liver fibrosis due to NASH.
GLI Recognizes and Supports Primary Biliary Cholangitis Day
Global Liver Institute (GLI) is proud to support liver patients worldwide in recognition of International Primary Biliary Cholangitis (PBC) Day 2022, held each year on the second Sunday in September in hopes of educating and promoting awareness of PBC. GLI is proud to ally with the PBC Foundation and PBC community to recognize the importance of International PBC Day.
PBC is a rare chronic liver disease that slowly destroys the bile ducts in the liver that can lead to cirrhosis and liver failure. PBC is most prevalent in women, and in the United States, it is estimated that about 65 out of every 100,000 women have PBC. PBC primarily affects women between ages 30-60 and is thought to occur due to a mix of genetic and environmental factors. While the prevalence of cases is generally small, PBC patients account for a large percentage of liver transplant lists. A US-based study found that patients listed with PBC had a higher risk for wait-list mortality than other liver conditions. Though, these deaths are preventable: patients treated with the right medications have a similar life expectancy as the general population.
GLI is invested in raising awareness about PBC by supporting International PBC Day and PBC focused organizations. To this end, we hosted an Externally-Led Patient-Focused Drug Development Meeting with the FDA on PBC during Rare Liver Diseases Month this year to facilitate better understanding of patients’ needs in the drug development and approval process. Living with a rare condition often comes with fear and isolation, therefore, finding other people with the condition is an important factor in strengthening the rare disease community. The profound impact of International PBC Day for patients and caregivers is integral to creating a supportive network where patients can flourish.
We look forward to continued collaboration in supporting patients with PBC and other rare liver diseases.
Global Liver Institute Congratulates Dr. Monica Bertagnolli for Imminent Appointment as Director of the National Cancer Institute
Washington, DC – August 12, 2022 – As leaders in the liver cancers community, Global Liver Institute (GLI) proudly supports President Biden’s selection of Monica Bertagnolli, MD, to be appointed as the Director of the National Cancer Institute (NCI).
Bertagnolli is the first woman to serve as chief of the Division of Surgical Oncology at Brigham and Women’s Hospital and Dana-Farber Cancer Institute and is a professor of surgery at Harvard Medical School. She was recently elected to the National Academy of Medicine and served as the president of the American Society of Clinical Oncology.
“Global Liver Institute and our liver cancers team are grateful for President Biden appointing Dr. Monica Bertagnolli to be the first woman to serve as Director of the National Cancer Institute,” said Sarah Manes, Liver Cancers Program Director at GLI. “Dr. Bertagnolli’s esteemed and extensive clinical oncology experience, health policy work, and clinical trial expertise will continue to drive NCI to lead in the space of cancer research and innovation.”
Liver cancer presents a sizable burden as the sixth most common cancer and third leading cause of worldwide cancer death. Further, liver cancer is one of the few cancers that is on the rise – its incidence is expected to grow 137% by 2030. GLI remains committed to being an ally and driving focus on liver cancers advocacy specifically for hepatobiliary NCI SPORE grants and state-and-global-specific cancer consortiums. We look forward to collaborating with Dr. Monica Bertagnolli and the NCI on Cancer Moonshot initiatives as we persist in our efforts to drive policy, education, and awareness of liver disease and liver cancers by increasing screening, treatment, and prevention of one of the deadliest cancers in the world. We are also thankful to Dr. Douglas Lowy, MD, for serving as NCI’s acting director upon the departure of Ned Sharpless, MD.
Looking Back and Looking Forward in Liver Health with Harvey J. Altar, 2020 Nobel Laureate
(Washington, DC – June 14, 2022) – The Embassy of Italy, in collaboration with Global Liver Institute (GLI), will host an event on June 14 entitled “From Progress in the Control of Viral Hepatitis to the Rising Epidemic of NASH” for the occasion of International NASH Day, a liver health awareness campaign led annually by GLI in June. The event will feature a scientific presentation highlighting the bilateral efforts to improve liver health in Italy and the United States, with a robust lineup of speakers.
Since the liver performs over 100 functions in the body, liver health is foundational to whole-person well-being. Hepatitis, or inflammation of the liver, is often caused by viral infection. The important discovery of hepatitis C virus by Dr. Alter and his colleagues paved the way for blood tests that have since saved millions of lives. Today, nonalcoholic fatty liver disease (NAFLD) and its more advanced form, nonalcoholic steatohepatitis (NASH) have grown to epidemic proportions with modern lifestyles and present a significant burden to patients, clinicians, and the broader healthcare system.
Opening Remarks:
H.E. Mariangela Zappia, Ambassador of Italy to the United States
Michael F. Iademarco, MD, MPH, Rear Admiral and Assistant Surgeon General in the U. S. Public Health Service and as the Deputy Assistant Secretary for Science and Medicine (DAS-S & M) in the Office of the Assistant Secretary of Health
Carolyn Wester, MD, MPH, Director of the Centers for Disease Control and Prevention Division of Viral Hepatitis
Presentation:
Moderator:
Michael Lederman, MD, Professor Emeritus, Department of Medicine and Pathology, Case Western Reserve School of Medicine Cleveland Medical Center, Editor-in-Chief Pathogens and Immunity
Speakers:
Harvey J. Alter, MD, 2020 Nobel laureate in Physiology or Medicine for discovery of the hepatitis C virus
Patrizia Farci, MD, chief of the Hepatic Pathogenesis Section of the National Institute of Allergy and Infectious Diseases at the National Institutes of Health
Closing Remarks:
Donna R. Cryer, JD, founder, president, and CEO of Global Liver Institute
The event will be held at 10:00 am EST on June 14, 2022 at the auditorium of the Embassy of Italy, to be followed by a networking lunch.
Get Involved
International NASH Day is held annually on the second Thursday in June. For additional information, visit the International NASH Day website.
International NASH Day and its logo are registered trademarks of Global Liver Institute.
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About Global Liver Institute
Global Liver Institute (GLI) is a patient-driven 501(c)3 nonprofit organization headquartered in Washington, DC, with offices in the EU and UK, founded in the belief that liver health must take its place on the global public health agenda commensurate with the prevalence and impact of liver disease and the importance of liver health to well-being. GLI promotes innovation, encourages collaboration, and supports the scaling of optimal approaches to improve research, care, and policy. By bringing together more than 200 community-based, national, and international organizations across its Councils, Campaigns, and events, GLI equips advocates to identify and solve the problems that matter to liver patients. Follow GLI on Twitter, Facebook, Instagram, LinkedIn, and YouTube. GLI is the global host of International NASH Day, held annually on the second Thursday in June.
Global Liver Institute Convenes Communities Around the Globe Today to Reverse the Growing Trend of Fatty Liver Disease
Washington, DC – June 8, 2022 – Global Liver Institute (GLI) calls attention to NASH by leading the 5th annual International NASH Day on June 9. The number of people with this advanced liver disease is expected to double by 2030, but #NASHday aims to prevent this growth. Join the movement to #StopNASHNow by listening in as 24 expert panelists from around the globe share the latest updates about the disease or adding to the conversation on social media (#NASHday). The movement permeates the globe through many locally-organized events to educate about, screen for, and prevent NASH.
NASH (nonalcoholic steatohepatitis) is a serious, progressive condition in which too much fat accumulates on the liver, leading to its inflammation and injury. It is the severe form of NAFLD (nonalcoholic fatty liver disease). Modern lifestyle and dietary patterns have contributed to increased prevalence of NASH and NAFLD around the world, and it is becoming the most common cause of liver disease. Given its widespread impact and the possibility of prevention in most cases of this disease, NASH emerges as a global health priority.
“With over a hundred million people worldwide already who have NASH and several times more in the earlier stages, people have reason to know about this progressive condition and what they can do today to combat it,” shared Donna R. Cryer, president and CEO of GLI. “Collective action is imperative to be certain that individuals in each community, no matter their background or environment, are informed and equipped to prevent fatty liver disease. The momentum that we build together today must advance and sustain the global fight against NASH.”
If you didn’t know, then now you know! Even though NASH is common, it remains relatively unknown, leaving much work to be done to increase public awareness. This year, GLI and its partners join with the theme to #StopNASHNow: Even as therapies for NASH are being developed, there are many steps that people and their doctors can take today to prevent, reverse, or slow the progression of fatty liver disease. For the 25% of adults already affected worldwide, it is due time for this life-changing knowledge.
An estimated 1 in 4 adults around the world already has NAFLD.
The prevalence of NAFLD is increasing among all global regions and among all ethnicities in parallel with diabetes and obesity.
NASH can progress to cirrhosis or liver cancer – which may necessitate a liver transplant.
“International NASH Day demonstrates the potential that is realized as all stakeholders in NASH come together worldwide,” said Jeff McIntyre, NASH Programs Director at GLI. “From in-person screenings in at-risk communities to educational materials in 16 languages to challenging conversations with researchers, providers, and patients – today the world joins to create meaningful solutions for patients at every stage of NAFLD and NASH.”
International NASH Day has garnered the endorsement of prominent organizations from around the globe: American Association for the Study of Liver Diseases (AASLD); Association of Black Gastroenterologists and Hepatologists (ABGH); Asociación Latinoamericana para el Estudio del Hígado (ALEH); Associazione Italiana Studio del Fegato (AISF); Asociación Mexicana de Hepatología (AMH); Asian Pacific Association for the Study of the Liver (APASL); Canadian Association for the Study of the Liver (CASL); Conference on Liver Disease in Africa (COLDA); European African Treatment Advocates Network (EATAN); European Fatty Liver Conference (EFLC); European Society for Paediatric Gastroenterology Hepatology and Nutrition (ESPGHAN); EU Patient-Centric Clinical Trial Platforms (EU-PEARL); Fondazione Epatocentro Ticino; Hepatology Society, Dhaka, Bangladesh; Hepatology Society of the Philippines (HSP); Indian National Association for the Study of the Liver (INASL); North American Society For Pediatric Gastroenterology, Hepatology & Nutrition (NASPGHAN); Sociedad Argentina de Hepatologia (SAHE);Turkish Association for the Study of the Liver (TASL); United European Gastroenterology (UEG); World Gastroenterology Organisation (WGO); and World Patients Alliance (WPA).
Support the NASH Day social media campaign using hashtags #NASHday #StopNASHNow. Please direct any additional questions to NASHDay@globalliver.org.
International NASH Day and its logo are registered trademarks of Global Liver Institute.
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About Global Liver Institute
Global Liver Institute (GLI) is a 501(c)3 nonprofit organization founded in the belief that liver health must take its place on the global public health agenda commensurate with the prevalence and impact of liver illness. GLI promotes innovation, encourages collaboration, and supports the scaling of optimal approaches to help eradicate liver diseases. Operating globally, GLI is committed to solving the problems that matter to liver patients and equipping advocates to improve the lives of individuals and families impacted by liver disease. Follow GLI on Twitter, Facebook, Instagram, LinkedIn, and YouTube. GLI is the global host of International NASH Day.
Did you know that the U.S. NASH Action Plan is the first and only national action plan created to address the growing epidemic of NASH?
In 2021, GLI NASH Council partners collaborated to draft this set of actionable recommendations for the full spectrum of stakeholders 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. Each critical intervention within this plan plays a vital role in elevating NASH to its rightful place on the national public health agenda commensurate with its prevalence and impact.
While there is still much work to be done to curtail the impact of fatty liver disease within our communities, we would like to celebrate recent wins: co-authoring an NCQA white paper outlining recommendations for increasing awareness and optimizing care for patients with NASH; GLI NASH Council member the American Heart Association issuing their first ever scientific statement on the correlation between NAFLD and CVD; and the release of GLI NASH Council member AACE Clinical Practice Guideline for the Diagnosis and Management of NAFLD in primary care and endocrinology clinical settings.
It is our goal, through the implementation of the U.S. NASH Action Plan, to engage stakeholders – foreign and domestic – and illustrate a sense of urgency in mobilizing their vast and varied resources to address the challenge of NAFLD and NASH. We invite you, again, to collaborate with us to establish action plans tailored to the needs of your countries and community
Donna R. Cryer, JD President & CEO Global Liver Institute
International NASH Day is on June 9, 2022!
International NASH Day annually advances the global movement to prevent and treat NASH. It is the premier collaboration of community leaders, healthcare providers, and industry, all informed by the patient voice. Across the globe there is an immediate need to relieve the heavy burden that NASH places on every community and important steps that everyone can take. It is time to #StopNASHNow.
This year, GLI is pleased to support grassroots efforts from around the globe that will raise awareness and promote diagnosis and care options in ways as unique as each community.
Managing a NASH diagnosis is challenging for any person to manage. A support system made of friends and family can foster a healthy social and emotional context for self-care, making it easier for patients to achieve their health and behavior goals.
“I have been living with NASH for several years now and have been very surprised at the lack of support and understanding from family members, friends and even the medical personnel. I try to be positive and not let it get me down but sometimes it does, and it is hard to maintain a fat free, sugar free low calorie diet when you are an emotional eater from a very young age and have been eating everything in sight for over 50 years. Food was my comfort in childhood and now the very thing that brings me comfort is killing me. My family loves me, but they don’t get it that I have to stay on this diet 24/7/365 for my life. When I fall off the wagon it is so hard for me to get back on it. I have never found the emotional support I needed. I want to do all I can while I can, but it would be so nice to have people to talk to and share with and lift each other up.” -Kate
Kate’s testimonial reminds us that you do not have to be a healthcare professional to provide assistance to your loved ones. Family members can provide essential emotional support to patients facing the stresses of caring for their illness.
NAFLD is an underdiagnosed and underrecognized condition that affects approximately 25% of adults worldwide. In April 2022, the American Heart Association issued their first ever scientific statement on the correlation between NAFLD and cardiovascular disease (CVD). The publication provides an overview of risk factors and pathology of NAFLD and its links to CVD. It also considers NAFLD an aggravating factor for CVD and additionally calls for an improved measure of CVD and liver disease risk stratification. Read More
AACE & AASLD Release New Clinical Guidelines for Management of NAFLD American Association of Clinical Endocrinology (AACE) Co-Chairs, guideline task force experts, Kenneth Cusi, MD, FACP, FACE, and Scott D. Isaacs, MD, FACP, FACE, has released the new AACE Clinical Practice Guideline for the Diagnosis and Management of NAFLD in Primary Care and Endocrinology Clinical Settings. This guideline was developed by the AACE and co-sponsored by the AASLD to provide evidence-based recommendations regarding the diagnosis and management of NAFLD and NASH to endocrinologists, primary care clinicians, health care professionals, and other stakeholders.
GLI Advancing the NASH Agenda
A Rallying Cry: Improving Coordinated Care for People With Nonalcoholic Steatohepatitis
NASH symptoms are often silent in early stages, making it difficult to diagnose. As a result, NASH patients can remain unaware of their condition or undiagnosed until it progresses to cause irreversible harm, requiring complex and costly treatment. A new white paper co-authored by Donna Cryer, GLI CEO and founder, entitled A Rallying Cry: Improving Coordinated Care for People With Nonalcoholic Steatohepatitis, summarizes a discussion by an expert roundtable convened by the National Committee for Quality Assurance (NCQA) and outlines recommendations for increasing awareness and optimizing care for patients with NASH.
Diet Changes When Young May Add a Decade to Your Life, Study Says
A new study suggests that life expectancy in the U.S. is shortening, in part, due to poor dietary choices. The Centers for Disease Control and Prevention reported in 2020 that life expectancy at birth in the U.S. declined by 1.5 years from 2019 to 2020. Contributing conditions included increases in diabetes, chronic liver disease and cirrhosis. “The good news is that lifestyle changes can make a big difference for those with liver issues,” says Jeff McIntyre, NASH Program Director at Global Liver Institute. Read about what changes you can make to lead a healthier and longer life.
Endocrinologists and NASH 70% of people with type II diabetes have NAFLD. With this in mind, endocrinologists can provide additional support to their patients with diabetes by bringing this risk to their attention and helping those patients avoid developing NASH. Luckily, many of the lifestyle interventions to manage diabetes are also effective for NAFLD. Donna Cryer, President and CEO of GLI, shared about this connection in an interview with touchENDOCRINOLOGY.
