From Awareness to Action on Global Fatty Liver Day

From Awareness to Action on Global Fatty Liver Day

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From Awareness to Action on Global Fatty Liver Day

Global Liver Institute Unites the Field in Times of Name Changes and New Treatments

(Washington, DC – June 13, 2024) – Today marks the seventh annual Global Fatty Liver Day (formerly International NASH Day), led by Global Liver Institute (GLI) with the theme “Act Now, Screen Today.” This campaign underscores the crucial need for early identification and treatment of fatty liver disease to prevent its progression to chronic liver disease, cirrhosis, or cancer. 

Fatty liver disease is now estimated to affect 1 in 3 adults worldwide, and its prevalence is increasing. Fatty liver disease during childhood, once unheard of, is also on the rise. Early detection and timely intervention, whether through lifestyle changes or medical treatments, are essential in stopping and even reversing the progression of the disease. “Act Now, Screen Today” emphasizes that liver health is achievable, but action must begin immediately. Across the globe, partners are driving awareness and educational efforts and ensuring broader access to essential screenings and care.

Global Fatty Liver Day, observed annually on the second Thursday of June, is a rallying cry for collective action to address the growing prevalence of fatty liver disease, the most common liver disease worldwide. “Act Now, Screen Today” reminds everyone that liver health is within reach. Here are specific actions you can take today:

  • Take advantage of liver health screening events happening globally to get assessed for fatty liver disease or schedule a check-up with your doctor, especially if you are managing closely associated metabolic conditions like obesity or diabetes
  • Increase physical activity, as maintaining an active lifestyle can improve liver health
  • Learn about fatty liver disease and its risk factors to take proactive steps towards prevention and management yourself or learn more about the latest research and guidelines for your patients.

With a robust pipeline of pharmaceutical treatments that address diverse mechanisms of action in progress, it is important to identify individuals’ position within the progression of fatty liver disease so that they are poised to receive the most appropriate care possible. Notably, pharmaceutical treatments are available (for certain groups with advanced disease) in two countries, the United States (resmetirom) and India (saroglitazar).

“As a community, we stand at a critical time for the broader global health system to act now to support patients,” shares Donna R. Cryer, JD, Founder and CEO of GLI. “As pharmaceutical treatment options gain approval in different geographies, health payers and systems must listen to the call from global advocates and not place undue obstacles to care – whether that be required biopsy, ambiguous lifestyle requirements, or other hurdles – so that patients are able to access the care they require, no matter who or where they are.”

Recognizing the importance of early detection, a diverse range of partners, including healthcare providers, patient advocacy groups, and community organizations, have joined forces to “Act Now, Screen Today” and launch screening events around the world. From Chile to Nigeria to the Netherlands, the Philippines, and beyond, these events aim to raise awareness, provide education, and offer screening services to individuals at risk of fatty liver disease or the providers who care for them. Global Fatty Liver Day activities are driving positive change at the grassroots level.

“Global Fatty Liver Day is an urgent call-to-action to unite our global efforts to confront the scourge of fatty liver disease,” shares Cat Evans, Director of Program Operations at GLI. “We must act now. By working together, we have the power to create significant change in preventing and managing this pressing health issue through our collaborative efforts.”

Although the challenge of fatty liver disease to the well-being of communities around the globe is great, the power of locally-rooted, collective efforts can turn the tide towards positive change by heightening awareness, equipping people and their healthcare providers with prevention and management tools, expanding understanding of the disease through research, and protecting future liver health through effective policies.

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 Facebook, Instagram, LinkedIn, and YouTube, or visit www.globalliver.org. GLI is the host of Global Fatty Liver Day.

GLI Celebrates with PBC Patient Community upon U.S. FDA’s Approval of Second-Line Treatment

GLI Celebrates with PBC Patient Community upon U.S. FDA’s Approval of Second-Line Treatment

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GLI Celebrates with PBC Patient Community upon U.S. FDA’s Approval of Second-Line Treatment

(Washington, D.C. June 10, 2024) – Global Liver Institute (GLI) celebrates the decision of the U.S. Food and Drug Administration (FDA) to provide accelerated approval to elafibranor (Iqirvo®) to Ipsen (licensed from GENFIT) as a second-line option for patients diagnosed with the rare liver disease primary biliary cholangitis (PBC). 

PBC is a progressive disease that degrades bile ducts in the liver, which leads to bile buildup and liver damage that can require a liver transplant. The disease most commonly affects women between the ages of 40-60. It is estimated that about 1 in 1,000 women over the age of 40 are affected by PBC.

About 40 percent of PBC patients do not respond to first-line therapy, so elafibranor now offers a new option for a sizable portion of the patient population. Patients may benefit from effects noted during the studies like improved biochemical responses, normalized alkaline phosphatase (ALP) levels, and even reductions in pruritus. 

“The journey of drug development is challenging and complex, but it is through continued innovation that breakthroughs like these are achieved,” shared Kristin Hatcher, Program Director of Pediatric and Rare Liver Diseases at GLI. “For patients facing a progressive rare liver disease like PBC, the right treatment to slow down progression is essential – and this breakthrough offers hope for those who do not respond to what is on the market today. It’s about avoiding the uncertainties of a liver transplant and placing trust in therapies that truly make a difference for patients.”

GLI celebrates with the PBC community the increased hope and quality of life that this new option for treatment offers – as well as its potential to address other rare liver conditions like primary sclerosing cholangitis. We will continue to advocate for robust research and equitable access to treatments for all people with rare liver diseases.

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. GLI holds Platinum Transparency with Candid/GuideStar, is a member of the National Health Council, and serves as a Healthy People 2030 Champion. Follow GLI on Facebook, Instagram, LinkedIn, and YouTube or visit www.globalliver.org. Learn more about the Liver Health is Public Health program here.

Access to care takes center stage for liver disease patients – Liver Health Policy Update

Access to care takes center stage for liver disease patients – Liver Health Policy Update

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GLI responds to VA efforts to deny or delay access to NASH/MASH treatment while proactively pushing for Congress to advance policies that support access to comprehensive care for liver disease patients.


Join GLI in Supporting the LIVER Act!

GLI is thrilled to share that Representative Nydia Velázquez has reintroduced the Liver Illness, Visibility, Education and Research Act (LIVER Act). The bill was first introduced in 2018, in collaboration with GLI in its development. With rising rates of liver cancer, fatty liver disease and new opportunities to prevent and treat viral hepatitis, GLI believes the time is now for Congress to move the field forward and shift the conversation to shine a spotlight on liver cancer and liver health disparities. View GLI’s statement here. Join us by reaching out to your Member of the House of Representatives here!


GLI Pushes for Access to NASH/MASH Treatment for Veterans

GLI and 24 organizations sent a letter to the U.S. Department of Veterans Affairs expressing deep concern that the agency is advancing adverse Criteria for Use of a new medication to treat nonalcoholic ateatohepatitis (NASH), also known as metabolic dysfunction-associated ateatohepatitis (MASH), to include biopsy, contrary to the label from the Food and Drug Administration and clinical guidelines. Groups also expressed concern that the VA’s recommendation on lifestyle interventions will further delay access to care. The VA did not provide any information on the evidentiary basis for this decision, nor is it supported by existing clinical guidelines. The letter urged the VA to remove the VA Pharmacy Benefits Management Services and National Formulary Committee’s recommendation of biopsy as a Criteria for Use for any approved medication for NASH/MASH. Click here to view the letter. Click here to learn more about Beyond the Biopsy.


GLI Supports the Old Drugs New Cures Act!

Congressmen Don Davis (D-NC) and August Pfluger (R-TX) have introduced the Old Drugs New Cures Act, bipartisan legislation to improve access to lifesaving medications that disproportionately benefit low-income Americans who rely on Medicaid, the Children’s Health Insurance Program (CHIP), or Medicare Part D low-income subsidies (LIS). As GLI’s Donna R. Cryer, JD, points out, “reformulating existing drugs is an opportunity for innovation to address unmet needs in an efficient and timely manner.” New uses for existing drugs have long been supported by the rare disease community, for whom treatment options are highly limited. The bill remedies an interpretation of federal law that stifles research and development on reformulations of existing drugs for new uses, called the Medicaid line extension. The bill carves out an exemption for priority research drugs from the Medicaid line extension, allowing for a smoother path from drug development to patient access. View the press release here.


GLI Urges New York to Cover Obesity Drugs

GLI strongly supports Medicaid policies addressing the chronic disease of obesity that are based on sound science and support health equity. It is critical for state policies to recognize obesity as a serious and complex condition that is a risk factor for developing NASH/MASH. While we applaud the State of New York for providing access to medication treatment for obesity to NY state employees, we are concerned that the population currently lacking access to the full array of obesity treatments is the state’s Medicaid population. The disparity in coverage is stark and contrary to the state’s goals for health equity. Prevention not only saves live but would save money and hardship by addressing the personal and financial burden of obesity and related diseases and conditions for so many people and families. GLI sent a letter to the Governor asking that new obesity treatments no longer be excluded, and sent letters to the New York Senate and Assembly supporting legislation to provide comprehensive coverage for obesity care.


GLI Appeals to Biden Administration to Provide Comprehensive Care for Obesity

As part of a continuing strategy to provide access to comprehensive obesity care, 58 organizations urged the Biden Administration to add obesity into the category of complex, chronic disease states under the National Strategy on Hunger, Nutrition, and Health guidelines. GLI also urged the Biden Administration to provide Medicare Part D prescription drug coverage of obesity medications and expand the type of qualified healthcare and community providers and evidence-based community programs that can deliver intensive behavioral therapy (IBT) under Medicare Part B. Click here to view the letter signed by 58 organizations. Click here to send a letter!


Bipartisan Congressional Preventive Health and Wellness Caucus Launched! 

Congressman Vern Buchanan, Vice Chairman of the House Ways and Means Committee and Chairman of the Health Subcommittee, and Congresswoman Gwen Moore (D-WI) announced the launch of the bipartisan Congressional Preventive Health and Wellness Caucus. The caucus will work to bring awareness to the burgeoning obesity epidemic in the country and help promote and advance policy-centric solutions. Specifically, the bipartisan group will focus on the effects of prevention, Medical Research and Innovation (MRI), Food as Medicine (FAM), exercise, health disparities, coverage, stigma, and obesity on military readiness and physical fitness. In your advocacy, please join GLI in encouraging Members of the House of Representatives to join the caucus and support policies such as the Treat and Reduce Obesity Act providing comprehensive coverage for obesity treatment! Reach out to your Member of Congress here.


DOD Responds to GLI Outreach Supporting Obesity Care for the Armed Forces

GLI is proud to support decisive action by the U.S. Department of Defense to rectify systemic issues preventing individuals with obesity from accessing evidence-based treatments including behavioral therapy, AOMs, and bariatric surgery. GLI and other advocacy organizations sent a letter to DOD, available here. We are pleased to report that the return letter to the American Security Project from DOD stated that the Secretary agrees that obesity poses a threat to our national defense, supports our aims and purpose, and is reviewing our recommendations and suggestions in more detail.  We are encouraged by this response, which represents a huge step forward in improving medical care for our service members and veterans. It is important to note that neither overweight nor obesity are currently classified as chronic diseases in the Active Duty, which makes the Secretary’s decision to explore this recommendation critical to improved identification and treatment of these conditions. View the press coverage from Federal News Network, Military Times, and Daily Express.


GLI Applauds House Energy and Commerce Health Subcommittee Action on Telehealth

GLI has consistently supported access to telehealth as a key strategy for improving relationships between doctors and patients that allows patients to actively show doctors their medicine bottles, the environment in which they live, and even the contents of their refrigerators. Doing so allows doctors to better understand how to tailor a treatment plan around a patient’s real-world circumstances and thus improve treatment adherence. On May 16, the House Energy and Commerce (E&C) Subcommittee on Health held a markup on a series of substantial health-related proposals geared towards extending access to telehealth services, strengthening and preserving the Medicaid program, and encouraging innovation for pediatric rare diseases. 21 pieces of legislation were ultimately reported favorably, 18 of which had unanimous support. Notably, committee Democrats leveraged the markup’s discussions on telehealth legislation to urge their Republican colleagues to also reauthorize the soon-to-expire Affordable Connectivity Program (ACP).


Senate Holds Hearing on Food is Medicine 

On May 21, 2024, the Senate Health Education Labor and Pensions (HELP) Committee held a hearing on Feeding a Healthier America: Current Efforts and Potential Opportunities for Food is Medicine. Nutrition experts emphasized that providing nutritious meals to vulnerable populations can save lives and curb healthcare costs, a sentiment shared by GLI and the Liver Action Network. GLI continues to actively engage in efforts on Capitol Hill to support the Medical Nutrition Equity Act requiring insurers to cover critical medical food for patients. Share your support here!


GLI Supports NIH Funding to Address Deadliest Cancers

GLI and the Deadliest Cancers Coalition continue to support funding to address deadly liver cancers. GLI urges Congress to increase its appropriations to the NIH to $51.3 billion for the NIH’s base program budget level, including $7.93 billion for the NCI, as well as at least $1.5 billion for the Advanced Research Projects Agency for Health (ARPA-H).  GLI also supports report language that continues to hold NCI accountable for making progress on the goals and ideals of the Recalcitrant Cancer Research Act and asks that NCI develop a plan with specific actions to understand the causes and risk factors that are leading to recent increases in incidence of deadly cancers, especially liver cancer. GLI also supports Congressional efforts urging NCI to consider a multi-disciplinary workgroup to report on research focus areas for primary liver cancer, including cholangiocarcinoma, and looks forward to learning more about the RFI released for liver and pancreatic cancer in January 2023. Reports of unexplained increased incidence of deadly cancers such as liver cancer among the adolescent and young adult population require the NCI’s attention to develop a plan with specific actions to understand the causes and risk factors that are leading to these increases and potential interventions. Learn more about efforts urging NIH to address deadliest cancers here.


GLI Supports Full Funding to Support FDA’s Responsibilities to Patients and Consumers

The FDA is responsible for 80% of the food supply and 100% of drugs, medical devices, biologics, vaccines, veterinary food/medicine, dietary supplements, and cosmetics in the United States. Altogether, the agency oversees products and services that represent 20% of all consumer spending (more than $3.6 trillion). GLI is proud to join the Alliance for a Stronger FDA in calling for increased appropriations to support the FDA’s activities, particularly to improve the accuracy and efficiency of FDA’s medical product decisions, address rare disease and support medical nutrition. It is not an option for the FDA to be underfunded and under-resourced. The FDA’s ability to operate a modern, scientifically-based regulatory program must be continually strengthened. View more information about the resources needed to support FDA’s work here.


 

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The Quiet Threat of Fatty Liver in Lean Individuals

The Quiet Threat of Fatty Liver in Lean Individuals

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The Quiet Threat of Fatty Liver in Lean Individuals

Nonalcoholic fatty liver disease (NAFLD or more recently metabolic dysfunction-associated steatotic liver disease, MASLD) has long been associated with obesity, but researchers are beginning to look into the trend that a sizable portion of those with the disease actually has a “normal” or lean weight. Studies indicate that an estimated 40% of those with NAFLD patients are non-obese, and 20% are classified as “lean NAFLD.” This condition, known as lean NAFLD or non-obese NAFLD, is particularly prevalent in Asian and Asian-American communities. Understanding this phenomenon is crucial, as it challenges conventional notions of NAFLD in favor of a more nuanced view that warrants tailored approaches to management.

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Exploring Fatty Liver in Lean Individuals 

Although fatty liver disease has been on the rise over the last two decades, along with the increasing prevalence of obesity, it has also been observed that fatty liver disease is increasing among individuals with normal weight, defined as a body mass index (BMI) below 25 kg/m2 in Caucasians and below 23 kg/m2 in Asians. It is important to note that BMI is an imperfect measure of health and doesn’t account for ethnic and sex differences, so a more individualized approach for assessing disease status is needed. Approximately 10–20%  of individuals with NAFLD have lean NAFLD. Despite their lower BMI, these individuals may still have high body fat, particularly visceral fat, which accumulates deep within the abdomen and surrounds vital organs. While some visceral fat is essential for health, excessive amounts can pose a risk and contribute to the development of fatty liver disease. People with lean NAFLD typically have a smaller waist circumference and a more favorable metabolic profile characterized by lower levels of dyslipidemia, diabetes, hypertension, glycemia, and insulin resistance compared to obese individuals. Despite this advantageous phenotype, lean NAFLD patients may experience a worse outcome and faster disease progression.

Genetics, Lifestyle, and Environment 

No matter one’s weight, lifestyle factors such as diet, particularly high fructose and cholesterol intake, and low physical activity levels, contribute to the risk of developing NAFLD. Additionally, environmental factors such as air pollutants, and toxins related to landfills further exacerbate the condition. The interplay between genetics, lifestyle, and environment underscores the complexity of NAFLD development in lean individuals, including what type of lean NAFLD an individual may develop:

  • Type 1: Defined by visceral adiposity, when a person has extra fat around their organs, and insulin resistance, when one’s body has trouble using insulin, even if their weight is normal. This makes it harder for the body to adapt to changes in metabolism compared to people without these traits.
  • Type 2: Defined by monogenic diseases (controlled by one specific gene), which means that some lean people with NAFLD develop it due to their genetics. These genetic problems can directly lead to NAFLD. However, doctors might not think about these genetic causes when they diagnose lean individuals with NAFLD who don’t have extra fat around their organs. Instead, they might overlook this possibility and focus on other factors.

Genetic predisposition plays a significant role in the development of NAFLD in lean individuals. Specifically, a version of the PNPLA3 gene called the rs738409 variant is linked to NAFLD. Among Hispanics, this variant is more prevalent compared to the total population (46% vs. 33%) and increases the risk of fatty liver disease. 

Diagnosis and Management Strategies

Without the most common risk factors, it can be hard for someone lean and without diabetes (or their doctor) to realize they have fatty liver disease.  For lean individuals, specific diagnostic approaches, including, imaging techniques and liver function tests, might help you check. The current, diagnostic path is similar to traditional NAFLD including a general exam, blood tests, imaging tests, and sometimes a liver biopsy. Measuring your waist circumference might be a better way to assess your risk, as Dr. Hanouneh and Dr. Kirkpatrick, authors of Skinny Liver and Regenerative Health, noted in a recent episode of GLI LIVE. They explain that waist circumference reflects visceral adiposity, which is the most dangerous type of fat, and related to fatty liver disease. They advocate for treatment approaches focusing on enhancing overall fitness and reducing visceral fat through weight loss strategies. While promising drugs are being developed and tested for fatty liver disease, including lean individuals, many questions remain unanswered. Clinical trials are essential to determine how effective these potential treatments are for managing NAFLD in lean patients.

If you’re a lean individual, it’s important to pay attention to fatty liver disease. People in this category aren’t considered “high risk” and might discover the disease at later stages, which can lead to a worse outlook. Even with a lower BMI and a smaller waist circumference, some people may still have a higher risk of developing NAFLD due to genetics, lifestyle, and environment. As lean NAFLD gains recognition, it’s crucial to have personalized ways to diagnose and manage it. Further research is needed to understand the factors and communities most closely tied to this condition. For more info on NAFLD/NASH in lean individuals, check out Global Liver Institute’s patient guide.

OLD TERMS

NEW TERMS

FLD – Fatty Liver Disease

SLD – Steatotic Liver Disease 

NAFLD – Nonalcoholic Fatty Liver Disease 

  1. MASLD – Metabolic Dysfunction-Associated Liver Disease
  2. MetALD – MASLD + Increased alcohol consumption (MetALD)
NASH – Nonalcoholic Steatohepatitis

MASH – Metabolic Dysfunction-Associated Steatohepatitis 

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. GLI holds Platinum Transparency with Candid/GuideStar, is a member of the National Health Council, and serves as a Healthy People 2030 Champion. Follow GLI on Facebook, Instagram, LinkedIn, and YouTube or visit www.globalliver.org. Learn more about the Liver Health is Public Health program here.

Nourishing Insights into Pediatric Fatty Liver Disease

Nourishing Insights into Pediatric Fatty Liver Disease

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Nourishing Insights into Pediatric Fatty Liver Disease

Over the past decade, the prevalence of metabolic dysfunction-associated steatotic liver disease (MASLD, previously known as nonalcoholic fatty liver disease/NAFLD) in children has seen a concerning rise. Pediatric fatty liver disease is a serious liver disease that not only affects adults but also a concerning proportion of children. In fact, pediatric fatty liver disease affects nearly 10% of the general pediatric population. Furthermore, in children affected by obesity, fatty liver disease affects as many as 40%. Despite its growing prevalence, there still isn’t a definitive cure for fatty liver disease. However, ongoing research has illuminated the crucial role that nutrition plays in both the development and exacerbation of this condition. While the exact causes of NAFLD are multifaceted, research highlights various factors, including genetic predisposition, sedentary lifestyle, and notably, dietary composition.

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Unpacking the Power of Food: Carbohydrates, Fats, Fiber, and Proteins

Nutrient Type 

Subcategory 

Description Examples

Impact on MASLD/NAFLD

Carbohydrates 

Refined

Processed carbs with reduced nutritional value

White bread, white rice, processed foods

Increase risk 

Healthy

Unprocessed or minimally processed carbs retain nutritional value

Whole grains, vegetables, beans

Protective effects

Fructose 

Simple carbohydrate, overconsumption poses health risks to the liver

Sweetened beverages, processed foods

Increased risk

Fats 

Saturated

Dietary fats linked to various health conditions

Butter, cheese, red meats

Increase risk 

Unsaturated

Healthy dietary fats beneficial for heart health

Avocados, nuts, fish

Protective effects

Fiber 

Soluble  Attracts water, slows digestion, promotes fullness Beans, peas, nuts, fruits, vegetables Protective effects 
Insoluble  Speeds passage of food through the stomach, aids in weight management Whole grains, vegetables Protective effects 
Proteins  N/A Essential nutrients for body function and energy Meat, fish, eggs, lentils 

General role in energy provision 

Some pediatric specialists propose a discrepancy between our genetic makeup and the prevalence of highly processed and sugary foods in children’s diets. Surveys on nutrition indicate a stark transformation in kids’ eating habits over a generation, with ultra-processed foods comprising over 67 percent in recent years compared to minimal presence in the early 1980s. These dietary patterns are believed to induce hormonal fluctuations and other physiological strains. The overconsumption of fructose serves as an example, highlighting the risks of overconsumption in any form. Overnutrition, characterized by consuming too many calories, is a key factor in the development and progression of fatty liver disease, alongside dietary composition. Overnutrition often leads to obesity, which further increases the risk of fatty liver disease due to the accumulation of excess fat. Lifestyle interventions that promote weight loss through caloric restriction and dietary changes have shown effectiveness in managing fatty liver disease. Therefore, pediatric fatty liver disease patients should consider addressing the quantity of food being consumed as a disease management strategy.

Strategies for Management 

Early diagnosis of fatty liver disease in children is extremely important. Detecting the disease early can allow for lifestyle changes including healthier eating and increased physical activity which can reverse the condition completely. Additionally, early diagnosis enables healthcare providers to monitor the condition and its associated risk factors, reducing risks of associated co-occurring conditions, and thereby improving the overall health and quality of life of affected children in the long term.

Ongoing Efforts

While a definitive cure for pediatric fatty liver disease is yet to be found, ongoing efforts – including research, clinical trials, family education, and public health education programs – are being made to combat this condition. Given that obesity is a primary risk factor for fatty liver disease, which affects 40% of children with obesity, improving access to treatments can indirectly address pediatric fatty liver disease by helping individuals manage their weight effectively and reduce the progression and severity of the condition.

Understanding the intricate relationship between diet and liver health is crucial. By adopting an approach that emphasizes healthier nutrition choices and lifestyle changes, we can mitigate the risk of fatty liver disease and improve the overall health outcomes of our children. 

OLD TERMS

NEW TERMS

FLD – Fatty Liver Disease

SLD – Steatotic Liver Disease 

NAFLD – Nonalcoholic Fatty Liver Disease 

  1. MASLD – Metabolic Dysfunction-Associated Liver Disease
  2. MetALD – MASLD + Increased alcohol consumption (MetALD)
NASH – Nonalcoholic Steatohepatitis

MASH – Metabolic Dysfunction-Associated Steatohepatitis 

Biomarker identified for infants with alpha-1 antitrypsin deficiency –  Pediatric & Rare Liver Diseases News

Biomarker identified for infants with alpha-1 antitrypsin deficiency – Pediatric & Rare Liver Diseases News

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Research and innovation hub at the BARE Symposium in Stanford, CA 

The GLI Pediatric and Rare Liver Diseases team was thrilled to attend the BARE Symposium on May 10-11, 2024. It was a fantastic opportunity to connect with numerous researchers and patients at an engaging event that gathered experts from across the US to share innovations and research in biliary atresia. 

Jen Lau and Jordan Sarbaugh note that “BARE’s mission is to advance efforts in improving treatments and outcomes for biliary atresia. To do this, we facilitate collaboration between all stakeholders in the biliary atresia space – this includes patients, families, healthcare professionals, administrators, industry representatives, and other organizations that share our commitment of combating this rare pediatric liver disease. Witnessing the creation of this collaborative endeavor and the commitment devoted to it has, and will continue to, create truly extraordinary achievements.”

We look forward to the symposium already underway for 2025!

GLI + Liver Mommas At BARE 2024
BARE Presentation With Jen
BARE Endorsors Posters

 

New biomarker identified for infants affected by alpha-1 antitrypsin deficiency 

Researchers from Saint Louis University School of Medicine have identified biomarkers that can predict severe liver disease in high-risk infants with alpha-1 antitrypsin deficiency (AATD). This condition can range from mild to life-threatening, but for the first time, it’s now possible to determine which infants need life-saving intervention. This discovery paves the way for more targeted pediatric clinical trials, potentially accelerating the development of treatments.

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Mayo Clinic’s new strategy for -omics technology can facilitate personalized health plans for rare diseases

Mayo Clinic’s Center for Individualized Medicine has recently updated their groundbreaking “omics” technologies that affect their rare disease care. This approach integrates precision medicine into everyday clinical practice using genes and environmental exposures to create a personal medical roadmap. The technique may open the door to tailored medical interventions to each person’s unique biological makeup, which might improve overall outcomes and quality of life.

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Seladelpar shows significant improvements in pruritus and disease progression for PBC patients  

In a pivotal year for primary biliary cholangitis (PBC) drug development, seladelpar has emerged as a promising option by demonstrating significant advancements in disease management and pruritus reduction. Findings from the ASSURE study revealed that approximately 70% of patients reached the composite response endpoint without any serious adverse events reported. Dr. Cynthia Levy has also highlighted in an interview with HCP Live that this addressed a critical challenge in PBC treatment: A considerable portion of patients do not respond to initial or secondary therapies.


 

Progress in stromal cell therapy may alleviate symptoms and inflammation in PSC

The University of Birmingham, in collaboration with Orbsen Therapeutics Ltd., is spearheading the groundbreaking POLARISE trial to investigate the efficacy of stromal cell therapy in autoimmune diseases like primary sclerosing cholangitis (PSC). Stromal cells naturally resolve inflammation and injury, and initial patient reports of improved symptoms highlight the technique’s potential to advance chronic inflammatory disease treatments.

University Of Birmingham

 

Recognizing an ultra-rare occurrence in Alagille syndrome

A recent case report published in BMJ Case Reports highlighted a rare occurrence of hepatoblastoma in a toddler with Alagille syndrome and cirrhosis, shedding light on potential diagnostic challenges and treatment complexities in this patient population. While hepatocellular carcinoma is known to affect Alagille patients, hepatoblastoma in this context is exceedingly rare and the first few cases have just been reported. Despite its rarity, Alagille syndrome has garnered a growing network of advocates and resources aimed at improving the lives of those affected.


 

Council Member Highlight: Wilson Disease Association in Denmark! 

In May, Rhonda Rowland, vice president of the Wilson Disease Association and a valued member of our Pediatric and Rare Liver Diseases Council, attended the 2024 International Wilson Symposium. This event brought together over 20 patient advocacy groups from around the world, all united in their mission to establish an international agenda for Wilson disease.

“It was encouraging and hopeful to meet with, and hear scientific presentations from this global

network of doctors dedicated to Wilson disease,” said Rhonda Rowland. “Forming an international coalition of patient advocacy groups to support this commitment and help share information on advances and clinical trials can only improve the quality of life for those with this genetic disease.”

We are thrilled to highlight the incredible work being done by Rhonda and the Wilson Disease Association. Their dedication to advancing research and fostering international collaboration is truly inspiring. We are excited to work closely with them to support these initiatives and contribute to the global effort to improve the lives of those affected by Wilson disease.

Rhonda Rowlands (WDA In May)
Group In Denmark For WDA International Conference

 

For more information about the Pediatric and Rare Liver Diseases Council or to learn more about joining, please visit our webpage or email pedsrare@globalliver.org.

The Build-Up to Global Fatty Liver Day – Fatty Liver Disease News

The Build-Up to Global Fatty Liver Day – Fatty Liver Disease News

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June 13 is Global Fatty Liver Day

June 13 marks Global Fatty Liver Day, and the time to act is NOW! With conditions like obesity and diabetes increasing the risk for fatty liver disease, early screening is crucial to prevent serious complications like cirrhosis and liver cancer. By prioritizing early detection, we can ensure a healthier tomorrow.

Whether you’re hosting a screening, educational session, or fitness event, or simply attending one, we encourage everyone to join the awareness. Post a photo pointing to your watch or clock to emphasize the urgency—get screened and live healthier. Share your photos using our hashtag #ActNowScreenToday! Let’s take action today for a healthier future!

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Previewing Global Fatty Liver Day 2024 with MASH Patient Advocates

The build-up to Global Fatty Liver Day 2024 began with a special episode of MASH Tsunami featuring our VP of Liver Health Programs, Jeff McIntyre, alongside Roger Green, Louise Campbell, and Michael Betel. The discussion touched on the global state of fatty liver disease, patient access, and the importance of diagnostics, reflecting on this year’s theme: “Act Now, Screen Today.”

S5 E13 Global Fatty Liver Day 2024

 

Introducing the NASH Patient Assistance Fund: Apply Today!

The Assistance Fund is currently accepting applications for their new NASH Financial Assistance Program! The program provides financial assistance for prescription drug assistance (copays, deductibles, and coinsurance) on FDA-approved treatment, health insurance premiums, therapy administration costs, and treatment-related ground travel costs. Eligibility information is available on the program website (linked above) and applications can be submitted here!

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Liver-on-a-Chip: A Solution for Preventing Global Healthcare Crisis?

Obesity has become a global issue, significantly increasing the risk of metabolic-dysfunction associated steatotic liver disease (MASLD), also known as NAFLD. Dr. Michele Vacca’s research at the University of Cambridge focuses on understanding and targeting inflammation in MASLD’s progression to MASH (also known as NASH), highlighting BMP8B as a potential therapeutic target.


 

NAFLD in Shift Workers

A study of rotating shift workers revealed that 76.1% had NAFLD, but there was no significant impact on their motor and sensory nerve function. This highlights the high prevalence of NAFLD in shift workers without apparent nerve function impairment.


 

Obesity and MASLD: Is weight loss the (only) key to treat metabolic liver disease?

Lifestyle changes and bariatric surgery can help manage MASLD, but both have their challenges. New medications like resmetirom show promise by targeting both liver and metabolic issues, offering a more comprehensive treatment approach.


 

Upcoming Events

    We’re excited to announce that the GLI team will be present at these upcoming conferences:

    If you’re attending either of these conferences and would like to meet with us, please reach out to info@globalliver.org to schedule a meeting. We look forward to connecting with you!


     

    Deploying Solutions: How Can Veterans Manage Fatty Liver

    Deploying Solutions: How Can Veterans Manage Fatty Liver

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    Deploying Solutions: How Can Veterans Manage Fatty Liver

    Understanding Fatty Liver Disease

    Fatty liver disease includes a spectrum of liver conditions characterized by excess fat accumulation in the liver of individuals. It encompasses a range of conditions, from simple steatosis (fatty liver) to nonalcoholic steatohepatitis (NASH), as well as nonalcoholic fatty liver disease (NAFLD) which can progress to cirrhosis, liver failure, and hepatocellular carcinoma. Globally, more than 1 in 4 people are impacted by NAFLD, and of those, 1 in 5 will go on to develop the more advanced condition NASH.

    Contributing Factors to Fatty Liver Disease in Veterans

    Veterans are at an increased risk of developing NAFLD due to various factors, including:

    1. Military-related exposures: Exposure to environmental toxins and hazardous substances during deployments or service-related duties can contribute to liver damage.
    2. Lifestyle factors: High-calorie diets, limited access to nutritious foods during deployments, and irregular eating and sleeping patterns common among military personnel can exacerbate the risk of NAFLD.
    3. Co-occurring conditions: Veterans often face comorbidities such as obesity, diabetes, metabolic syndrome, mental health conditions, and substance use disorder, which are significant risk factors for NAFLD.

    The VHA’s Role in Addressing Fatty Liver Disease

    The VHA has recognized the growing burden of NAFLD among Veterans and has taken proactive measures to address this issue. These initiatives include:

    • Guidelines and protocols: According to Michael Fuchs, a recent guest on GLI’s weekly educational show, the VHA has developed and deployed guidelines for healthcare providers to screen, diagnose, and manage NAFLD among Veterans. This includes risk stratification and the establishment of specialized clinics for metabolic disorders.
    • Treatment advancements: Recent advancements in treatment options, including new drugs for NASH, have marked a significant shift in the VHA’s approach to liver health. These treatments offer hope for improved outcomes and quality of life for Veterans with NASH.
    • Collaborative efforts: Collaborations with organizations such as Global Liver Institute have helped fill gaps in resources and support tailored to Veterans’ needs. These partnerships aim to enhance awareness, access to care, and opportunities related to NAFLD.
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    Addressing Structural Inequities in Veteran Healthcare

    Policy changes are crucial to improving access to healthcare for Veterans with NAFLD. The development of comprehensive metabolic/NAFLD clinics across all VHA medical centers, as suggested by experts, would integrate multidisciplinary care, point-of-care evaluation, and access to clinical trials. These initiatives can ensure that NAFLD care and outcomes become key performance targets for all providers.

    Moreover, leveraging embedded electronic health record’s predictive algorithms, which help predict trends and patterns, can aid in identifying patients at risk for NAFLD in primary care clinics. Increasing access to diagnostic tools like transient elastography, an ultrasound-based non-invasive diagnostic tool, within the VHA healthcare system is essential to improving early detection and intervention.

    The Importance of Integrated Care and Early Intervention

    Integrated care models that include mental health support and treatment for substance use disorders are vital in managing NAFLD among Veterans. Mental health conditions, such as depression and substance use disorders, often coexist with NAFLD, emphasizing the need for comprehensive care strategies. Despite a recognized need, there is a noticeable gap in research on the impact of various mental health conditions on Veterans with cirrhosis, a group notably affected by higher rates of these concurring conditions. However, a recent study with an extensive group of Veterans diagnosed with cirrhosis indicated that mental health conditions were linked to higher all-cause mortality rates. However, consistent utilization of outpatient mental health services helped reduce this mortality risk, particularly among individuals with alcohol or substance use disorder. 

    Fatty liver disease, especially NAFLD, is a big health concern for Veterans, and the VHA is stepping up to help. They’re pushing for policy changes, teaming up with organizations, and trying out new care models to make healthcare more accessible and improve the lives of Veterans. Early intervention, comprehensive care, and patient-centered approaches are essential in ensuring the well-being and liver health of those who have served their country.

    OLD TERMS

    NEW TERMS

    FLD – Fatty Liver Disease

    SLD – Steatotic Liver Disease 

    NAFLD – Nonalcoholic Fatty Liver Disease 

    1. MASLD – Metabolic Dysfunction-Associated Liver Disease 
    1. MetALD – MASLD + Increased alcohol consumption (MetALD)

    NASH – Nonalcoholic Steatohepatitis

    MASH – Metabolic Dysfunction-Associated Liver Steatohepatitis 

    Uncovering the Effects Health Inequities Have on Cancer – Liver Cancer News

    Uncovering the Effects Health Inequities Have on Cancer – Liver Cancer News

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    Improvement within Clinical Trials

    Genentech/Roche is enhancing the accessibility of clinical trials by providing comprehensive patient support services. By tackling common barriers to participation – such as travel costs, distance, parking, childcare, conflicting work schedules, health literacy, site location, capabilities, expectations, and privacy concerns – they aim to make clinical trials more inclusive and representative.


     

    To Drive a Deeper Understanding of Cancer Disparities, American Cancer Society Launches Largest U.S. Population Study of Black Women

    The American Cancer Society (ACS) has launched the VOICES of Black Women study, the largest population study in the United States focusing on behavioral and environmental factors affecting cancer risk and outcomes in Black women. This long-term study will enroll over 100,000 Black women across 20 states and Washington, D.C., encompassing areas where more than 90% of Black women reside. The study aims to understand cancer development, identify risk factors, and improve survivorship and outcomes post-diagnosis through meaningful community partnerships to capture participants’ lived experiences.

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    Social Determinants of Health and the Availability of Cancer Clinical Trials in the United States

    The number of cancer clinical trials has significantly increased over the past decade, yet disparities in enrollment persist among minoritized and historically marginalized populations. Adverse social determinants of health (SDOH) and limited geographic availability of trials likely worsen this disparity. This study evaluated the association between county-level SDOH and cancer clinical trial availability in the United States, focusing on phase 2 and phase 3 interventional trials for the most common cancers from 2007 to 2022. Findings reveal that the most socially vulnerable counties were less likely to have any trial available, with availability worsening compared to the least socially vulnerable counties.


     

    New Report from American Cancer Society Shows Mortality for Preventable Cancers Among Native Hawaiian and Other Pacific Islanders in U.S. is 2-3 times as High as White People

    The American Cancer Society (ACS) has released a first-of-its-kind report, highlighting significant variations in cancer burden among Asian American, Native Hawaiian, and other Pacific Islander populations such as Chinese, Filipino, Korean, and Vietnamese individuals. The variations in cancer burden are attributed to a combination of factors, including immigration patterns, behavior, exposures in countries of origin, and social determinants of health. The report suggests tools to increase awareness and early detection in these communities and encourages lawmakers to support policies that enhance access to quality, culturally appropriate cancer care.


     

    San Antonio Oncologists Tackle Rising Rates of Cancer Deaths in Latinos

    Cancer is the leading cause of death for Latinos, accounting for 20% of all deaths. The University of Texas Health Science Center at San Antonio reported a projected 142% increase in cancer cases in the coming years. Despite advancements in cancer prevention, diagnosis, and treatment, disparities persist, with Latinos experiencing higher incidences of liver cancer and being twice as likely to die from cancer compared to other populations.

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    For more information about the Liver Cancers Council or to learn more about joining, please visit https://globalliver.org/liver-cancers-council/ or email cancer@globalliver.org

    GLI Celebrates with PBC Patient Community upon U.S. FDA’s Approval of Second-Line Treatment

    Global Liver Institute Applauds ​​U.S. Representative Nydia Velázquez’ Reintroduction of The Liver Illness, Visibility, Education and Research Act (LIVER Act)

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    Global Liver Institute Applauds ​​U.S. Representative Nydia Velázquez’ Reintroduction of The Liver Illness, Visibility, Education and Research Act (LIVER Act)

    (Washington, D.C., May 31, 2024) – Global Liver Institute applauds U.S. Representative Nydia Velázquez (D-NY) for reintroducing this vital legislation to improve the lives of all people impacted by liver disease. GLI was proud to collaborate in the development of The Liver Illness, Visibility, Education and Research Act (LIVER Act), first introduced in 2018. 

    “With rising rates of liver cancer, fatty liver disease and new opportunities to prevent and treat viral hepatitis, the time is now for Congress to Act,” shares Donna R. Cryer, Founder and CEO of GLI and 29-year liver transplant recipient. “Through Rep. Velazquez’ leadership, and her reintroduction of the LIVER Act in the U.S. House of Representatives, we can move the field forward and shift the conversation to shine a spotlight on liver cancer and liver health disparities.”

    The need for urgent Congressional action becomes evident when we consider that since 1980, the incidence of liver cancer in the United States has tripled, and death rates have nearly doubled. These concerns are further amplified when we consider the enduring racial and ethnic liver cancer health disparities that we have sought to eliminate for years, including:

    Liver cancer disparities reflect the interplay amongst many factors, including social determinants of health, behavior and genetics. Yet, according to the American Cancer Society, up to 70% of liver cancer cases could be prevented by increased uptake of hepatitis B vaccination, hepatitis C cures, and lifestyle management and development of treatments for fatty liver disease. 

    The LIVER Act rightfully acts as a crucial first step towards addressing many of these factors. With the reintroduction, we now need your help to urge other Members of Congress to cosponsor the bill, urge action within Congressional committees, and support their inclusion in other legislation. As we celebrate Hepatitis Awareness Month in May, and look forward to Global Fatty Liver Day on June 13, 2024, and Liver Cancer Awareness Month in October, we are excited to pledge GLI’s support to double the five-year survival rate for liver cancer.

    GLI urges liver advocates to reach out here to their Members of the House of Representatives to support this critical legislation!

    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. GLI holds Platinum Transparency with Candid/GuideStar, is a member of the National Health Council, and serves as a Healthy People 2030 Champion. Follow GLI on Facebook, Instagram, LinkedIn, and YouTube or visit www.globalliver.org. Learn more about the Liver Health is Public Health program here.