If you care about liver disease, you should read this. We need you to care and help

Announcing The State of NAFLD/NASH Care in America Survey

This 2022 State of Care Survey is the inaugural annual survey to understand the state of care for NAFLD/NASH as experienced by patients. It will establish a baseline to monitor year-to-year changes in disease management progress. For more information, see the full press release here.

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I'm going to need your help soon, I hope you will participate

We are launching an important program soon and I will need your support.

The patient community is very large, but a broad understanding of the challenges we face is lacking. There are 100 million of us with liver disease and stories to tell but most are only recognized in the late stages of the disease. We believe that is wrong but a first step is to have the data. We don't have a national benchmark or tracking system to understand the problem broadly or to know if it is getting better or worse. That harms us as patients.

The Fatty Liver Foundation is undertaking a patient focused survey to gather baseline data that many people can use to support advocacy and measure change that will be an annual study of the broad patient population. This note is just to let you know this is coming soon.

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When you are dying slowly no one cares

When you think about your experiences with healthcare are you pleased?

  • Have you ever felt that the medical industry wasn't interested in you?
  • Have you struggled with vague symptoms that were mostly ignored?
  • Do you think your condition should have been recognized earlier?\
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Pig parts, can we afford to transplant pig livers? Should we?

Recent news reports have announced the successful transplantation of pig kidneys and a heart into humans. Similar work is being done to use pig livers in humans. A number of members have asked me about this swine parts business so this will be a bit of background and my thoughts about the future for this strategy.

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Liver Disease, a free pass on the toboggan ride to hell

In my last newsletter I commented that I was proud that one of the things we do is help people die. Members who have followed me for a while got it but I made some newer folks uncomfortable so as a way to start the new year I thought a look at real life might be useful.

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2021 another hellish year, searching for positives in the midst of disaster

Before Rosemary and I created the Fatty Liver Foundation I never gave much thought to the non-profit community.  We always contributed a token to some big name organization with lots of slick ads and thought little more about it. Rosemary would respond to food banks and a few other local groups from time to time but I couldn't be bothered.

God appears to have a strange sense of humor as I find myself in this "old man" stage of my life running one of the newer small non-profit patient support groups and I often think about how little I cared for the less fortunate among us as a younger man. I don't think I lacked empathy but I just didn't know what life was like for those who fall into the darkness of chronic illness and then retreat from the tumult of "normal" life.

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Our SUNN Study report has been published in the journal PLOS ONE

A lot of research is published but not a lot is sponsored by and performed by patients themselves.  We are pleased to announce that our SUNN Study (Screening for Undiagnosed NAFLD and NASH) report has been published and the paper is now live on PLOS ONE, an international, peer-reviewed, open-access, online science publication. You can read it by clicking the link below.

Screening for undiagnosed non-alcoholic fatty liver disease (NAFLD) and non-alcoholic steatohepatitis (NASH): a population-based risk factor assessment using vibration controlled transient elastography (VCTE)

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The Liver Meeting, A patient's view of the state of the art

There are two big conferences in the world for people who deal with liver disease.  EASL is in Europe in the spring and AASLD is in the US in the fall. This is where the latest research is released, where the cutting edge of knowledge about the disease is shared, and where the future of liver medicine can be glimpsed.  It is a time for the superstars of the field to strut their stuff and be recognized by their peers and it is a window into the best of today and a glimpse of what we as patients can look to in the future.

We will follow this note with a more useful review of information we hope will be useful to you as patients, but I wanted to share a general perspective of what I see happening broadly.

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Announcing the NAFLD Screening Fund on NASDAQ

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This is just an update. Almost no one actually watches these little closing bell ceremonies but they are a nice part of our historical record. It was interesting to be mentioned on the big screen on Times Square for a half an hour. Here is a link to the event announcing the NAFLD Screening Fund.

https://youtu.be/KHYXuHCN4g0?t=112

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Announcing the NAFLD Screening Fund

The Fatty Liver Foundation is launching a public private partnership fund with the long-term goal of screening a million asymptomatic, undiagnosed individuals a year for nonalcoholic fatty liver disease (NAFLD).

NAFLD and its serious advanced version nonalcoholic steatohepatitis (NASH) are epidemic but largely unknown to people. These diseases have subtle symptoms until late stage when they are diagnosed as cirrhosis. Most people know cirrhosis as a disease of alcoholism, and the end result of destruction of the liver is the same, but the cause is different. NAFLD is primarily a disease caused by food. It was unknown before calories became abundant and obesity became common.

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FIRST TIMES -- Do you remember yours?

A first time is often a turning point, a new direction or a different way.  They come in an infinite variety but must flower in their season. Click the First Time button for a 25 second snippet of great wisdom.

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COVID Booster - to jab or not to jab that is the question

I wrote about the danger of Delta while it was still just a problem for India.  Regular readers may recall my comment about it coming to your town.  We all know the tune for old folks and those with other illness at this point but it is important to understand that there is more to the story.  A booster is now available to some and I see questions about whether it is a good idea to get it.  I've had the booster but before I tell you my results lets step back and ask if the risks we face are the same with Delta as they were with our old chum Wuhan. A good measure is dying so a look at some case fatality rates might be fun.

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There is a new ELF in town, sorry no magic this time, but important anyway

ELF, cute little name but what does it mean to liver patients?

ELF was just approved as a blood test for fibrosis by the FDA and this is an important step in the efforts to develop better tools for diagnosing advanced liver disease and getting away from liver biopsy.

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The CDC talked to me like an adult, sadly I woke up, it was just a dream

I'm sympathetic to the challenge the CDC faces but I hate the way they dumb down their messages about this virus. By talking to us like we are 6th graders they just add to the confusion.  There are things you need to understand about this virus so that you can respond appropriately. See the summary notes below.

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Survey says...liver patients need to be identified to be more aware of their risks

Recently, we sent out a survey to our community to get an idea about COVID-19 vaccines and their impact among immunocompromised people with liver disease. We knew we were posing this survey to our community, which is likely more informed and focused on fatty liver disease, so these results should be considered in that context. Though we did not achieve statistical significance with any of our findings, thanks to you, we got over 100 responses and found some interesting, yet not completely surprising, insights. Click on the image below to see the top line results from the survey.

 

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Virus mutation factories, how might you become one of them?

Twenty million people with the liver disease NASH, or non-alcoholic steatohepatitis, are also more likely than the average person to be infected with the COVID Delta variant and suffer from long COVID. Many of these chronically ill will become variant factories increasing the risk of developing new and deadlier strains. We’re working hard to prevent that, aren't we?

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Medical care, I don't know whether I'm mad or sad, It is worse than I feared

I really want to be mad at someone, but who?

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You are here because you have an interest in health. Suppose you had a dangerous condition that takes a decade or two to develop but had no symptoms. Would it matter to you if no one told you?

Buzz off you say???  Life is like that you say, lots of things happen to people. There's nobody to blame. It's in the fine print on the back of the ticket. Life isn't fair and no one gets out alive. Don't waste the energy thinking it can be better?

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PPAR (say pee par) not a short putt, a potent liver disease drug

PPAR -- Peroxisome proliferator-activated receptor

Lanifibranor by Inventiva leads the way

Wayne, you must be crazy to think I'll read something that starts out like that!!!

Be calm, I promise, it will make sense and if liver disease interests you this will be worth your time.

Therapies for NAFLD/NASH have been an elusive target and recent history is littered with promising molecules that many thought were finally going to lead to treatments for our disease. This is not a trivial problem. People are dying and our weapons are coffee and vitamin E.

Don't get on me about lifestyle right now.  I know that tune but I also connect through our peer groups with thousands of people who need more than that and drugs will be part of a proper management of this disease if we can ever find something that works.

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MADRIGAL PRESENTS, Resmetirom a leader in NAFLD/NASH drug development

Becky Taub and Paul Friedman, the founders of Madrigal Pharmaceuticals, are heroes of mine.

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One good TERN-101 deserves another, comments about a NASH clinical trial

There has been a lot of disappointing news about NAFLD/NASH therapy research this past year.  I thought you might enjoy a look at some new data that is very encouraging. Terns Pharmaceutical just reported very positive 12 week results of the drug TERN-101. Below is a chart from their report about changes in results using a fairly new non-invasive test by Perspectum, the Liver MultiScan measuring a value called cT1 or corrected T1.  I'll explain it a bit later but for the moment just know that it is an indirect measure of fibrosis.  Click the image to see a larger view.  As a phase 2 study this is a small number of patients but the effect on their livers in only 12 weeks is among the best early data that we have seen.

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