Wayne Eskridge published Non-invasive blood tests for liver disease - an update in Voices - our blog 2021-01-16 16:54:59 -0700
What is the situation with blood tests for fatty liver disease today?
The table above was produced by Fibronostics. We have followed the development of their program for a couple of years and they are supporters of the foundation. The thing that caught my attention back in 2018 was that their test, like the earlier Fibrosure was the result of artificial intelligence studies. A lot of AI is being done today but those two were early developers and I felt that this would be the future for us as patients. The downside, of course, is that tests like these are proprietary so the costs are higher so the question of who should use them is more complicated. For me, as a patient, I wish such tools had been available to me early on in my disease so that I might not have ended up as a cirrhotic.Read more
Wayne Eskridge published Thoughts at a hinge point in liver disease management in Voices - our blog 2020-12-24 13:13:43 -0700
Everyone writes uplifting letters this time of year. Personally Rosemary and I are doing well and our best hopes are for all of you as we speed toward the next chapter of our lives. The GRAND CONJUNCTION of Jupiter and Saturn reminded me of my youth and the AGE OF AQUARIUS. Something for those with a few minutes for a bit of nostalgia.
There are a lot of mixed currents in this section of the river of time that we find ourselves.
Wayne Eskridge published Rob, we don't know what stage your NASH is in Patient Stories 2020-12-11 14:38:45 -0700
This is a note to me from a member. I've put it here as I think it speaks to the challenges many of us face.
This is my first attempt to communicate with you directly. I will understand if you are unable to reply as I know you are very busy what with all you are involved with on behalf of all NASH patients. Thank you! Thank You! Thank You! I first came across Fatty Liver Foundation on January 6, 2020. I read your post and saved it, and read it again just now. Saying I was both shocked, stunned, and elated all at the same time does not begin to express all of my thoughts and feelings I experienced then, and in the subsequent months that have past by. I have continued to read and save your posts.Read more
Wayne Eskridge published The Fatty Liver Foundation and Fibronostics form a patient education partnership in Press 2020-12-07 12:14:00 -0700
FLF Launches a Patient Education Partnership to Expand Patient Outreach and Accelerate Early Identification of People with Undiagnosed Nonalcoholic Steatohepatitis
BOISE, ID; Dec 07, 2020 ― The Fatty Liver Foundation (FLF) announced today it is launching a new patient education partnership, in collaboration with Fibronostics, to meet the urgent need for early screening, identification, and intervention for people at-risk of developing nonalcoholic steatohepatitis. FLF and Fibronostics will work toward a shared mission of facilitating access to non-invasive tests that can help identify those at-risk of developing NASH as early as possible.
Non-alcoholic fatty liver disease (NAFLD) is an umbrella term that describes a spectrum of conditions ranging from non-alcoholic fatty liver to the more aggressive nonalcoholic steatohepatitis (NASH). NASH is a serious condition and can cause scarring of the liver, which leads to cirrhosis, as well as metabolic complications making it a unique medical condition requiring complex care. Comorbidities, such as metabolic syndrome, obesity and NASH, increase the risk factor and severity for patients with the COVID-19 virus.
Since NASH is asymptomatic until advanced disease, many patients are only identified at advanced stages. One of FLF’s core priorities is to educate people at-risk for NASH and facilitate access to early screening, diagnosis, and care that can save lives.Read more
Intercept and the associated logos are trademarks of Intercept Pharmaceuticals, Inc.
We’re excited to be joining wotj Intercept for the TRUTH About NASH roundtable discussion in Washington, DC. We’ve assembled a dynamic group of people who all touch this disease in diverse ways, and look forward to a robust conversation encompassing varying viewpoints. As NASH progresses to becoming the leading indication for liver transplants in the U.S., we believe cross-stakeholder discussions like this are imperative – not only to help identify barriers to care and gaps in knowledge, but also to begin to pave the road to potential solutions for this community.
We will be reviewing the findings from a new survey that takes a 360º look at NASH from the perspectives of healthcare professionals, diagnosed patients and the American public. We believe the survey will provide great stimuli for a discussion of some of the challenges facing people living with NASH.
This effort is part of our program to expand the discussion of liver disease and seek better solutions for patients and those who are asymptomatic but at risk.
Online tools can help you understand the risks of liver disease.
Only a doctor can diagnose a liver disease and it is complex, but if you, as a patient, are better informed your ability to understand the diagnosis and to ask the right questions will enable you to have a better dialog with your doctor. We off these screeners as a tool you can use to better prepare yourself to engage with your physician in diagnosis any potential illness.
The next level of screening test looks at specific lifestyle habits and general characteristics to provide a somewhat more refined probability of what your liver health is. Like the first screening this compares you to the general society so it is not a diagnostic test but can give you a sense of how high you risk might be and help you discuss your specific situation with your doctor.
Blood tests and screening calculators can't diagnose liver disease for you, but they can be useful to help you understand what your probability of having liver disease might be and may prompt you to consult your doctor even though you may still feel well.
More sophisticated online calculators are available which use readily available blood tests and physical characteristics. Nothing personal about you is recorded or becomes part of any record so this is just information for you as a patient to be better informed. Research has shown that the NFS and FIB-4 are useful to help rule out advanced disease. They can provide some guidance to help you think about it and suggest next steps. They don't prove anything about your diagnosis of possible disease, but they can be a guide to the next steps needed to arrive at a diagnosis.
From the tables below you can see how they are applied. They describe high and low cutoffs which have been shown to provide useful guidance about liver status. They are not not ideal but are a guide to suggest broadly how to view liver health and can help point the way to next steps. These are not yet commonly used by your primary care doctor but there is a movement underway to make these tests part of determining whether a patient should be quickly referred to a specialist even if there are no symptoms of liver disease.
If you find that you have a high probability of disease it would be wise to see your doctor. If indeterminate, you need more information. If your probability is low it is reasonable to be watchful but doesn't suggest that you need to see your doctor soon unless you have symptoms. Any information like this must be weighed in light of all of your other health data as no single snapshot can give you a definitive answer. We offer these to help you understand the general picture as you seek to learn your individual status. Remember advancing liver disease often has no symptoms.
Recent research has shown that these common blood tests combined with Fibroscan screening improves the accuracy of NASH staging. This is important information which comes from the STELLAR trials. Here is a quote and a link to the analysis.
Fibrosis-4 index followed by measurement of liver stiffness with vibration-controlled transient elastography or Enhanced Liver Fibrosis test maintained acceptable noninvasive performance in identifying advanced fibrosis due to nonalcoholic steatohepatitis while reducing the rate of indeterminate results, according to an analysis of the STELLAR trial outcomes.
Other, more sophisticated blood tests are being developed and we will add them here as they become available.
Wayne Eskridge published COVID vaccine distribution plan ignores NASH patients in Voices - our blog 2020-12-01 11:06:38 -0700
The CDC COVID-19 vaccine distribution plan likely ignores NASH patients
The CDC is working on a plan for distribution of the COVID-19 vaccines once they are approved. While I am sympathetic to how difficult the challenge is, I’m frustrated that their analysis mostly ignores liver disease patients with NASH. The ACIP COVID-19 Vaccines Work Group slide deck provides a look at how the government is planning the distribution of these critical vaccines.
The strategy which affects the patient community in particular is called 1C. This group would get vaccines after healthcare workers, long term care residents, and essential workers. The proposed 1C group would be defined as over 65 or someone with a high-risk medical condition. Since that designation covers well over 100 million people one might think of it as “the rest of the population”. When you consider that the healthcare and essential workers groups are estimated to be 21 and 87 million the proposed “high-risk” groups are fairly far down the priority list.
Wayne Eskridge published CDC knowledge of liver disease incidence with COVID is inadequate in Voices - our blog 2020-11-23 10:48:55 -0700
Early stage liver disease has been mostly ignored by the medical community leading to diagnosis too late to be helpful even in normal times. In the age of COVID it can be deadly. When you look at what conditions the CDC lists as increasing your risk of serious illness you see the list below.
(NOTE, no liver disease mentioned)
(Might the fact that no one bothers to track most liver disease effectively have anything to do with that?)
- Chronic kidney disease
- COPD (chronic obstructive pulmonary disease)
- Heart conditions, such as heart failure, coronary artery disease, or cardiomyopathies
- Immunocompromised state (weakened immune system) from solid organ transplant
- Obesity (body mass index [BMI] of 30 kg/m2 or higher but < 40 kg/m2)
- Severe Obesity (BMI ≥ 40 kg/m2)
- Sickle cell disease
- Type 2 diabetes mellitus
Wayne Eskridge published Terri's Journey -- Battling liver cancer caused by NASH in Patient Stories 2020-11-12 15:44:12 -0700
I haven’t posted a personal update in a while and so here you go.
First, before I begin, I’m doing really well right now. I still get tired easily. I still have minimal energy to exert. I still take naps during the day. But I’m doing good.
As a reminder…in August I had a procedure done to remove a cancerous tumor from my liver. The cancer is called HCC, or Hepatocellular Carcinoma. It is a cancer that originates in the liver. This is the third tumor I’ve been diagnosed with.
The procedure I had was a Microwave Ablation. I did have to go under general anesthesia. The Interventional Radiology Doctor who did the procedure used one probe that he inserted through my abdomen into my liver. He moved it 3 times around the tumor to get clean perimeters. The total amount of current through the probe was 16 minutes. And yes, it is a microwave current. Just like you heat up your food. Gross, huh.Read more
Wayne Eskridge published Non-invasive testing info at AASLD in Voices - our blog 2020-11-09 08:50:33 -0700
The medical society that guides the treatment of patients is the American Association for the Study of Liver Disease (AASLD) their annual meeting is this week and it is virtual with a lot of first time patient access. This is the first time patients have been welcomed so if the state of the art of liver research interests you, here is a link. Join Us!
I am particularly excited by an event that has generally gone unrecognized but it is tremendously important to the patient community. They just don't know it yet.
Madrigal Pharmaceuticals is a small drug developer. They have been quietly doing their work while the pharmaceutical giants get most of the attention. They have been allowed by the FDA to conduct a phase 3 trial of their drug Resmetirom, called Maestro-NAFLD, without requiring a biopsy.
Wayne Eskridge published NASH - Swiss Army Knife of Death in Voices - our blog 2020-10-29 10:31:26 -0600
ARE YOU A PATIENT LIVING WITH NAFLD/NASH OR HEALTHCARE PROFESSIONAL CARING FOR NAFLD/NASH PATIENTS?
Welcome to Fatty Liver Foundation’s LIVER (Live Interactive Virtual Education and Review) Webinar Series. This four-part webinar series will deliver the latest research and medical information, including lifestyle/diet, testing and treatment, to people living with non-alcoholic fatty liver disease (NAFLD) and non-alcoholic steatohepatitis (NASH) and their medical providers. Our goal is to keep the patient community up-to-date on medical research and to build an archive of the important historical evolution of the field.
Join us for part-two of this webinar series on October 28, 2020 at 12:00 pm EDT hosted by Wayne Eskridge, our Co-Founder and CEO, along with Dr. Neeraj Mistry, our Chief Medical Officer, and a panel of leading clinicians and experts featuring Drs. Manal Abdelmalek, Amreen Dinani, and Arun Sanyal who will review and discuss highlights from the 6th Paris NASH Meeting 2020 and answer your questions.
12:00 pm – 12:10 pm
WELCOME AND INTRODUCTION
Host – Wayne Eskridge, Fatty Liver Foundation
Moderator – Neeraj Mistry, MD, MPH, Fatty Liver Foundation
12:10 pm – 12:30 pm
SESSION 1: LIFESTYLE AND DIET
New Data on Lifestyle and Dietary Interventions in NAFLD/NASH Management
Presenter – Amreen Dinani, MD, Icahn School of Medicine at Mount Sinai
Q&A – Neeraj Mistry, MD, MPH
12:30 pm – 12:50 pm
SESSION 2: TESTING
Advances in Non-Invasive Biomarkers for Diagnosis and Monitoring of NAFLD/NASH
Presenter – Arun Sanyal, MD, Virginia Commonwealth University School of Medicine
Q&A – Neeraj Mistry, MD, MPH
12:50 pm – 01:10 pm
SESSION 3: TREATMENT
Update on Investigational Drugs and Therapeutic Targets for NAFLD/NASH
Presenter – Manal Abdelmalek, MD, MPH, Duke University
Q&A – Neeraj Mistry, MD, MPH
01:10 pm – 01:15 pm
REFLECTIONS AND TAKEAWAY POINTS
*Subject to change. This educational program is supported by grants from Intercept Pharmaceuticals, Madrigal Pharmaceuticals, and NetNoggin. Fatty Liver Foundation maintains editorial control and independence over the educational program content.
Wayne Eskridge published Gabriella Wan joins the Fatty Liver Foundation in Press 2020-10-12 15:41:00 -0600
BOISE, IDAHO (October 13, 2020) — Fatty Liver Foundation today announced the appointment of Gabriella A. Wan as Executive Assistant and Program Coordinator effective October 9, 2020. Gabriella will provide administrative support of the CEO’s office and program coordination of the executive leadership team.
Gabriella joins the Fatty Liver Foundation from Georgetown University Department of Global Health where she served as Research Assistant with a focus on health economics and financing. She previously served as Administrative Assistant at Georgetown University Graduate School of Arts and Sciences where she provided administrative support to the Deans’ Offices.
Gabriella received a Bachelor of Science in Global Health and a Master of Science in Global Health from Georgetown University. She also participated in the School for International Training (SIT) Honors Program where she engaged in field-based global health programs in Washington, DC, Vietnam, South Africa, and Argentina.
“We are thrilled to welcome Gabriella to the team,” said Wayne Eskridge, Co-Founder and CEO of Fatty Liver Foundation. “Her new role is essential for supporting the growth of our operations and programs as well as advancing our mission to identify and educate people who are at-risk for NAFLD/NASH or living with NASH.”
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THE PROBLEM: The real liver experts don’t offer effective diet advice
Currently, the experts who treat liver disease, (the specialists of AASLD), do not officially recommend any specific diet for liver health. The reason is because there are not enough well-designed dietary clinical trials focused specifically on the liver to give the organ experts confidence to make official dietary recommendations. This creates a serious dilemma. As patients we don’t have that luxury. We must make choices. We must live every day making food decisions and hope that our diet is a healthy one even if the experts can’t help us. No wonder we see endless variety in dietary advice and “experts” of all persuasions.Read more
OUR GOAL: Design a diet strategy that minimizes the liver workload
THE PROBLEM: The liver experts don’t offer effective diet advice
Currently, the experts who treat liver disease (AASLD), recommend no specific diet for liver health. There are not enough well-designed clinical trials focused specifically on the liver to give the organ experts confidence to make official dietary recommendations. This creates a serious dilemma. As patients we don’t have that luxury. We must make choices. We must live every day making food decisions and hope that our diet is a healthy one even if the experts can’t help us. No wonder we see endless variety in dietary advice and “experts” of all persuasions.
THE GOAL: Design a diet strategy that minimizes the liver workload
The Fatty Liver Foundation recommends a diet high in oleic acid (omega 9) unsaturated fat (30%), primarily from extra virgin oil, low in saturated and trans fats (7%), with a omega 3 and 6 fatty acids approximately equal (8% each). Protein is about 20% of calories and carbohydrates are primarily in the form of fruits, non-starchy vegetables, and whole grains (27%). Simple carbs, such as sugars and refined grains, are minimized. The goal for salt intake is about 70% of the USDA recommendation. Processed foods and red and processed meats are avoided. (see this pdf for the research supporting this strategy)
Nonalcoholic fatty liver disease (NAFLD) affects approximately one third of adults in the United States and is the most common cause of chronic liver disease worldwide. About 20% of patients develop the more serious steatohepatitis (NASH) which is becoming epidemic as a result of the rising rates of obesity and metabolic disease. Emerging data suggest weight loss of greater than 10% of body weight is beneficial in resolving steatosis and reversing fibrosis due to NASH.
The liver disease specialists don’t have enough proof that they are willing to endorse a specific diet, so keep that in mind as you listen to the sales pitches. There are thousands of claims about food. Here we are trying to give you the most complete picture that we can, but just remember, if someone is selling you something, they have an agenda and real evidence is hard to get.
As patients where do we look for dietary guidance?
We understand the challenge for science to provide specific and verifiable data, but as patients we still have to live each day and we make decisions about our diet by making use of whatever information is available to us. We also must live within the cultural and food availability situations that we find ourselves.
It is very difficult to do effective random, blinded, controlled trials (RCTs) of the diets of humans. There are myriad ethical and cultural concerns with human experimentation and the human diet is vastly complex within different cultures and practices. In our role as the voice of the patient, we believe that a position of offering very limited guidance is inadequate so we are providing this information as a patient resource for those who seek to understand the components of diet and available research which we believe offers a coherent view from which to make decisions about diet. The goal of our lifestyle strategy is not to diet but to adopt habits that are fundamentally healthy long term and probably contribute to a healthier liver and a better life.
Making the best choices we can with the information we have
A lifestyle that is fundamentally healthy is built on a vast series of small choices made each day over a lifetime. It is a pattern of behavior based upon choices which are, on average, neutral to healthy while minimizing ingesting things that compromise function. There is no one size fits all solution. Human metabolism is quite robust and is able to accept a wide range of inputs and to use them to sustain bodily functions.
In our role as a supporter of people concerned about liver health, our goal is to support a lifestyle which minimizes the work that the liver must do to sustain our lives. Conceptually, when any of the parallel processes taking place within a liver cell is either oversupplied with or denied those dietary elements that it needs to maintain a stable response we have failed in that goal. In making decisions about food, the goal is stability of function, stability of supply, and minimizing toxins. A sick liver benefits from a strategy of making it do as little work as possible.
Talk to your doctor
All patients should discuss dietary strategies with their doctor. This information cannot substitute for guidance by your physician. This material provides research-based information that will help you better understand your doctor’s advice but cannot be relied upon for personal health decisions. Information is critical to help plan and implement a strategy to adopt lifestyle change but there is no single solution to decisions about diet and this information is therefore incomplete and may well be proven to be incorrect as research is performed in the future. This discussion provides information from a health perspective broadly which can inform choices about what constitutes a liver supportive diet. A broader benefit is that this approach provides a holistic regimen which benefits many co-morbid conditions such as diabetes and cardiovascular health as well. In many ways, what is good for the liver is beneficial for the body as a whole.
It is important to remember that your doctor may have little nutrition education. We rely on them, but many are unprepared to really help us with diet decisions. Current medical education does not provide much focus on the issues of diet. This paper contains references to research which we have relied upon in developing it so you may be able to use it to engage your physician in the science argument about various aspects of diets. The material presented is not exhaustive or necessarily authoritative but is a coherent way to approach the lifestyle challenge.
Wayne Eskridge published COVID not the only game in town in Patient Stories 2020-09-19 19:03:38 -0600
As I write this I see the covid numbers are rising again. I hear people in denial, it could never happen to them. Today I have something equally life threatening to write about. It is not about Covid. It’s about ANOTHER little recognized epidemic. I lived it. I will be very happy if this resonates with just one person.
Here’s my story.
Christmas Eve 2013, I was feeling pretty proud of myself. I was on my way to a healthier life. Earlier in the year I joined my local YMCA. I exercised 6 days a week. I was eating healthy and watching calories. All in an effort to lose weight. I had been overweight since I was a child. Smaller clothes was just a small part of why after 30 years I was losing weight. Feeling good was a great reason but what gave me real motivation was the fact I wanted to be a living kidney donor for a family member. I had lost 96 pounds in 7 months. Then I woke up with what I thought was the flu. By evening I thought I was doing better. When I got sick and vomited up a huge amount of red blood. I found myself in my local ER where I was literally bleeding to death with no clue why. I was taken to the back where I was still very much awake and scared to death.Read more
Wayne Eskridge published COVID infections, What diseases make you the most vulnerable, New data in Voices - our blog 2020-09-19 11:44:39 -0600
Comorbid conditions increase the risk of being infected with COVID. We hear that all the time but what does it really mean? A study was just released that provides some very important insights. Here is a chart showing the odds ratio, that is a measure of the relative risk compared to a healthy person. Look closely. This is important. Note that NASH is over 14.
Broadly, these are the elements of metabolic syndrome and fatty liver disease.Read more
Did you know that 20,000,000 Americans don't know they have asymptomatic liver disease?
Did you know that disease called COVID-19 is caused by the virus SARS-CoV-2?
Did you know that COVID-19 or SARS-2 is more dangerous to society than SARS-1.0 which hit in 2003 and killed 9.6% of those infected?
Did you know that if you have advancing fatty liver disease without any symptoms your risk of death from SARS-2 is higher than average?
I have some concern about writing this. When we face a crisis, panic and reactions driven by fear can do great harm. I do not wish to contribute to that, however, as an advocate for people faced with chronic illness, such as liver disease, I feel compelled to inform my community about the details.Read more
Fatty Liver Foundation organizer
As a liver disease patient my goal is to help others understand, manage, or prevent the disease