The NASH Education ProgramTM
Improving together the medical learning about NASH to better address its causes and consequences, and serve patients.
As a recognized leader in the NASH field, the endowment fund has a responsibility for being proactive in NASH disease awareness.
The NASH Education ProgramTM defines and drives initiatives in collaboration with an independent scientific committee² composed of four international key opinion leaders, well-known and respected in the field, with a footprint in both hepatic and metabolic diseases, and a strong presence in the United States as well as in Europe.
The objective of this public health initiative is to place the practitioner and the patient at the heart of tomorrow's awareness and education actions. It aims at producing essential and relevant scientific and medical knowledge, and at disseminating it towards targeted audiences:
- All physician specialties, going beyond hepato-gastroenterology, i.e. including diabetologists, endocrinologists, obesity specialists, cardiologists, OB-GYN and general practitioners who will all have a key role to play in the clinical management of NASH patients;
- Patients and their families, but also individuals at risk, who all need to understand causes, mechanisms and consequences of the disease, to fully appreciate the importance of an early diagnosis and a treatment well-suited to their condition.
Through this approach, The NASH Education ProgramTM creates opportunities to increase awareness through relevant and impactful education actions. It is obviously open to all key stakeholders in the NASH space who are committed to improving NASH patient care.
Videos from The NASH Education ProgramTM
* NASH: A Major Public Health Issue & Growing Concern
Learn about the vital role of the liver in the body, as well as about NASH, or non-alcoholic steatohepatitis. You will see the progression of the disease from a healthy liver to a liver with steatosis and necro-inflammation, the driving force of the disease, leading to fibrosis and ultimately to life-threatening outcomes such as cirrhosis or liver cancer – both requiring a liver transplant – or cardiovascular disease.
* Why Early Diagnosis is Important
Learn why NASH is becoming a significant economic and societal issue globally. With its high prevalence and the recent FDA approval of Rezdiffra, there is now a treatment option for adults with noncirrhotic NASH/MASH with moderate to advanced liver fibrosis, alongside diet and exercise. Healthcare system expenses related to NASH are expected to grow, making early diagnosis a critical challenge. This emphasizes the need for simple, cost-effective, and non-invasive solutions in NASH management.
* Biopsy: The Gold Standard for Diagnosis
Learn about biopsy, the current gold standard to diagnose NASH in individuals at risk, and the most complete diagnostic solution allowing clinicians to study key characteristics of the disease. Also learn why it is not considered an ideal solution and needs complementary diagnostic tools: mainly due to its low availability, invasiveness and cost.
* What is NASH?
Stephen A. Harrison, MD, Medical Director of Pinnacle Clinical Research, San Antonio, introduces us to NAFLD (Non Alcoholic Fatty Liver Disease), and more specifically NASH (Non-alcoholic Steatohepatitis). He explains the definition of the disease, as well as its characteristics & the risks induced by its progression. He also highlights how the disease is related to the double epidemic of obesity and diabetes.
* Who is at Risk?
Mary E. Rinella, MD (Associate Professor of Medicine, Northwestern University Feinberg School of Medicine, Chicago) describes who are the patients at risk of developing NAFLD and NASH, as well as the link between NASH and cardiovascular events, the ultimate consequences of the disease, and the importance of a multidisciplinary approach to be successful in the fight against NASH.
* Improving Access to NASH Diagnosis
Arun J. Sanyal , MD (Virginia Commonwealth University Medical Center, Richmond) explains that NASH is under diagnosed because a biopsy is usually necessary to confirm diagnosis. Because NASH is a silent disease and most patients are asymptomatic until late stages of the disease, it is crucial that a new, easy-to-use, accessible non-invasive diagnostic tool becomes available soon.
* How to Resolve NASH
Kenneth Cusi, MD (Chief of the Division of Endocrinology, Diabetes and Metabolism at the University of Florida, Gainesville) explains how beneficial weight loss is for NASH patients. But most people struggle to lose weight, and more importantly keep it off. Therefore, because of the prevalence of NASH and its rapid progression, increasing awareness around NASH could help to better manage patients, but that new treatments remain a priority.
* NASH: The Future
Vlad Ratziu, MD (Professor of Hepatology at the Pitié-Salpêtrière Hospital, Paris) explains that resolving NASH (inflammation and ballooning), the underlying cause of cirrhosis, is a recommended endpoint for clinical trials. He tells us more about the key requirements for an anti-NASH drug, especially the importance of safety and tolerability on top of efficacy.
research update - long term study on diet and liver health shows fibrosis can resolve
Clinical trials are important. We support them because they are the only way to get treatments that work. I recently took 5 members of my family to Dr. Rohit Loomba's, a world renown liver specialist, lab at the University of California San Diego where we participated in a study seeking a genetic basis for familial liver disease. The goal is the find out what role DNA plays in the development of liver disease. If you are interested in learning more, click on the link below. If your family seems to have liver disease you might check it out. UCSD NAFLD Research Center familial cirrhosis study
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HEP C - Financial Assistance Through Healthwell
IF YOU HAVE HEP C YOU MAY BE ABLE TO FIND FINANCIAL HELP HERE.
The HealthWell Foundation is a leading non-profit dedicated to improving access to care for America’s underinsured. When health insurance is not enough, we fill the gap by assisting with copays, premiums, deductibles and out-of-pocket expenses. In 2016, we awarded more than $169.8 million in grants through our Disease Funds, and since 2004 we have helped more than 320,000 patients afford essential treatments and medications. HealthWell is recognized as one of America’s most efficient charities — 100 percent of every dollar donated goes directly to patient grants and services.
We provide financial assistance to help with:
- Prescription copays
- Health insurance premiums, deductibles and coinsurance
- Pediatric treatment costs
- Travel costs
Is cirrhosis a death sentence?
I recently attended the meeting of the AASLD, the American Association for the Study of Liver Disease, which is a group of world leaders in research into liver disease. I was very encouraged by what I heard there and I've been wondering how to explain that to the community dealing with disease.
Fatty liver has mostly been dismissed as a medical problem because it was often benign and even if it wasn't there was no treatment anyway so dealing with it was a matter of waiting until some organ showed symptoms and try to deal with those until you die. Many doctors today leave their patients with that feeling of hopelessness with the phrase, I'm sorry but we have no treatment.
There are two very important points that I want to make. First, it isn't correct to say there is no treatment. Diet and lifestyle have been well proven to be treatments and there is a lot of information on our website about diets. If you want to review, here is a link
http://www.fattyliverfoundation.org/diet_compare
More importantly, we live in a very fortunate time because medical knowledge is advancing at a torrid pace. I've struggled to put that into perspective and decided to relate a discussion I had with Dr Peter Traber, the CEO of Galectin Therapeutics, one of the companies researching liver disease treatment.
Dr Traber is also the author of the blog, LiverLine, which I suggest you read. It is excellent. He was relating the changes in health care over his career. His example was Hepatitis C. When he began his career the virus was unknown. Over the course of several decades it was discovered and even though it was very difficult a cure was developed and now we can defeat that disease. His observation of the state of liver disease research is that we are now on the brink of developing real treatments for liver disease. Even a veteran researchers like him is impressed by the speed and quality of the work being done on liver disease today.
There are over 400 drugs being actively evaluated and only a few will turn out to be of value but the research community is confident that they now know enough to be sure that we will get useful therapies in the next several years. The message for current patients is that for now diet and exercise are your only friends but help is on the way so a hopeful attitude is also part of the therapy.
Interested in Clinical Trials?
We can help
Want to know more about clinical trials? Here are some short videos from our partner Antidote.
FOR MORE INFORMATION AND LINKS TO TRIALS CLICK HERE
If you have diabetes and are overweight, you can have silent liver disease too
Learn about fatty liver disease and NASH, and see if you may qualify for a clinical trial.
About NASH
If you have diabetes or struggle with your weight, you may have fatty liver disease. A severe form of fatty liver disease, called nonalcoholic steatohepatitis (NASH), often has no symptoms but can cause significant damage to your liver if not diagnosed early.
About the Clinical Trial
The MK-3655 Clinical Trial is evaluating the safety and effectiveness of MK-3655, an investigational medication for people with NASH. This trial will test MK-3655 compared to placebo. A placebo looks like the study medication but contains no active ingredient.
You may be able to participate if you: *
- Are a male or postmenopausal female, 18 to 80 years of age [in Japan: 20 to 80 years of age]
- Have NASH confirmed by a liver biopsy
- Do not have type 2 diabetes OR have type 2 diabetes that is well controlled by diet or a stable dose of diabetes medication
- Have had a stable weight for at least 3 months
If you qualify and decide to participate:
- Your liver and your overall health will be monitored closely by an experienced study team
- You will receive the investigational medication and study-related doctor visits at no charge
- The information gathered may help advance medical knowledge about NASH and may improve patient care in the future
- Participation is voluntary and you are free to withdraw from the study at any time. Your privacy will be maintained throughout the clinical trial
To learn more, including the possible risks and benefits of participation, visit NASH3655Study.com.
For a copy of this information, you can download this flyer.
*There may be additional requirements to participate. The study doctor can provide you with more information. Additional potential risks and benefits will be fully described to you by your study team.
I have to get a new goat
There are so many things about the way we deal with health in general and liver disease specifically that get my goat that the poor thing has the blind staggers from all of the abuse.
Our society has become a case study in death by excess. We have too much food, too much leisure, too much convenience, too much marketing, too much image manipulation, too much feckless government, too much misinformation, too much profiteering. I should stop as I've probably already said too much.
Our focus here may seem too limited to justify sweeping comments like this. It paints me as a wild eyed crazy man for some. In my defense, my perspective comes from the very un-glamorous view from the liver. Since there have been no treatments for the most common cause of liver failure and death, the glamor diseases like diabetes, heart failure, cancer, various genetic problems, and so on get the attention. The problem, in its simplest form is that the liver is like an abused but uncomplaining spouse who lives under constant threat but perseveres in silence. Our body is bio-chemically very complex and could not exist without the quiet workhorse that is the liver going about its 500 or more jobs.
Think of that. A liver cell that is about one fifth as wide as a human hair is constantly involved directly or indirectly in 500 different functions and you will suffer some health consequence if any of them are not done. This also explains why we have no treatments. It is so complex that we simply have not had the ability to act against a problem without doing harm somewhere else. I'll expand on this in a future article but for now just keep it in mind as you think about liver disease.
I'm optimistic that a new goat will have a better chance. There is a tremendous pressure for more and better patient advocacy and it is happening when medicine is simply exploding with innovation and discovery. We have a vast array of current problems to deal with but I am convinced that we are on the brink of a golden age for medicine and patients. Our biggest challenge will be taking what we know and delivering it in a useful way to the population as a whole. A key to that will be patients who are engaged in their own care and who actively participate as their own advocates. It will not always be pretty but the future is bright in spite of the great confusion within the government right how.
An update on my cirrhosis, it was stage 4, now stage 3
The foundation was spawned out of my personal journey through undiagnosis, misdiagnosis, and finally a stage 4 NASH so I've chronicled my journey through our website. I just completed a checkup at the transplant center and now that we are two years into my treatment plan I am starting to get enough data that might be helpful.
I do have some very encouraging results to report. In 2015 I had an MRI elastography which reported my liver stiffness as 4.8 kPa. Their scale shows that to be a stage 3 moving into full cirrhosis which they start at 5.0 kPA. My biopsy called it cirrhosis and I also had a fibroscan that year which read as 21.5. Anything above 12 is considered to be cirrhosis. A long way around to say I really do have a liver in trouble even though I have never had a symptom of any kind. Go figure.
Support the Fatty Liver Foundation become a sponsor
There are many ways to support the efforts of the Fatty Liver Foundation. General purpose donations are welcome from anyone concerned about public health in general or liver disease specifically. At the program level, we invite sponsorship in the following ways:
The Platinum level sponsor has provided a contribution to the Foundation of at least $200,000. Platinum sponsors may fund a mobile screening system or other project of interest and may be featured prominently with logos and other information in all of our media efforts promoting their support for public health.
The Gold level sponsor has provided a contribution to the Foundation of at least $100,000. Gold sponsors have the opportunity to direct their contributions to particular projects in partnership with the Foundation. While the screening project is our most visible patient outreach program but there are many needs within the obesity, fatty liver, and cirrhosis challenged patients that benefit from efforts surrounding the screening events.
The Silver level sponsor is anyone who has provided a contribution to the Foundation of at least $50,000. Silver level sponsors are honored on our sponsorship webpage with their logo and a link to their webpage for more information.
The Bronze level sponsor is anyone who has provided a contribution to the Foundation of at least $10,000. They are honored on our sponsorship webpage with their logo in recognition of their contributions.
Blue ribbon level contributions are all those less than $10,000. They are honored on our sponsorship webpage with their logo in recognition of their contributions.
Whatever level of support you can give is greatly appreciated and will be used to maximize benefit for current and future patients of liver disease and the complications of obesity which is at the heart of most fatty liver disease.
The beast in my belly: Living with a chronic liver disease
On the morning of December 23, 2010, after having my gall bladder removed, I was shown a picture of my liver and told I had a stage 4 liver cirrhosis. It was a powerful and frightening moment – one that is seared into my memory. And one that began more than a half-decade of tests, misdiagnoses, and, eventually, lifestyle changes.
I was astonished that morning to learn that my case was pretty typical. Cirrhosis, the final stage of liver disease leading to liver failure, is commonly reached without any warning symptoms. I remember very clearly my doctor’s words: “I’m sorry, but we have nothing to offer. There is no treatment.” My vision of my liver was that of a deadly beast that would kill me. Being told that losing weight and exercising could help didn’t inspire.
You can read the article in the Stanford Medicine Blog Scope here
http://scopeblog.stanford.edu/2016/12/20/the-beast-in-my-belly-living-with-a-chronic-liver-disease/
Read moreAbout Fatty Liver, NAFLD, NASH & Cirrhosis
If you want to really understand Fatty Liver Disease, spend some time watching the videos below. They present a great deal of information, but if knowledge is your goal, this is a great place to start.
Part of dealing with liver disease is to understand it. In order to help you, we are working with Armando Hasudungan who produces superb short videos to explain complex medical subjects. We use them throughout the site to help you understand your body and specifically your liver. The first video gives you a view of the liver overall and the following ones focus on details.
So how does what I eat cause me problems?
OK, but how does Cirrhosis happen?
So what is cirrhosis that is the one that scares me.
I suppose the next question is what are the signs and symptoms and management of liver disease.
Darn, so how bad can it be really?
Causes part 1
Causes part 2
If you would like to explore the science behind the diets click on this link.