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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Leapfrog liver disease funding, a proposal for a better way

We all know the issues. Too much disease, no treatments, a looming health crisis made worse by the pandemic. We are here on International NASH day and it seems like an apt time to wonder if there might be a better way.  If you haven't registered for the event I invite you to do so by clicking on the image below, but I also invite you to think about the future of research and how we as patients can support a better way.

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COVID mutations, vaccines, chronic disease -- things you need to know

Infection rates and vaccine failures - some points to ponder

We have been seeing the headlines about the COVID tragedy in India as hospitals turn patients away and the nation runs out of oxygen as people are literally dying in line waiting to refill oxygen tanks. India faces a historic crisis and you probably imagine the densely packed cities and poverty are the cause. But wait, what about the REST OF THE STORY?

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ARGH not another webinar, too many I know but this may help you

I remember Google before it became mostly an advertising farm.  To be able to get to information easily was magic. Today no matter where you go it is a parade of ads and cleverly designed hustles. Like search, now that video is so easy to do, the webinar world has exploded with ads. Since we don't sell anything and our only interest is having you not die of liver disease, getting past all the noise so that you might consider joining us is a real challenge.

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I can see clearly now, the patient journey through liver land

I can see clearly now (I love this)

click here for a bit of fun

but click on the image to register

Our upcoming webinar is Wednesday the 28th at 12:00 EST. If you are a patient or care about what patients have to say you should register.

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COVID mutations, you need to care about this

There are issues with the COVID virus and its mutations that are important if you have comorbidities and you can't get the information from headlines. As you re-engage with society a little information can help you decide what you will do.

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We have all seen these picture of the coronavirus with all the spikes sticking out of the surface. The virus is really a remarkable construction. We all know that the molecules of life can change or mutate which can alter the way the various elements can react to their environment. The spikes of the corona virus are its key to infection. If one of them connects with an appropriate cell in a host it can attach and infect that cell. An important fact is that conceptually, all of those spikes could be different. In practice they are not but each could harbor a mutation and in the case with COVID we are seeing mutations that make it even more infectious. A short summary of what we know. Keep in mind that things are changing fast.

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Intention to diagnose - does your doc intend to diagnose NAFLD?

In the doctor/patient relationship there is a physician process which is called the "intention to diagnose". That may seem odd, but diagnosis requires a deliberate action by the doctor. You may be more familiar with the idea of the "intention to treat". You may have heard the argument that there is no value in identifying a condition if it can't be fixed and in that case there is no intention to treat so no intention to diagnose.

As a liver disease patient you may have learned about your condition when you were fairly advanced. Why does that happen? Is it a lack of the intention to diagnose, a failure of diagnosis, inadequate tools or training, or is something else happening? We are hosting a webinar on Wednesday the 17th at 12:00 Eastern.  We will be discussing non-invasive testing with a couple of experts, Dr Mona Munteanu and Dr Stephen Harrison, and we will talk about the diagnosis problem and the several tools available for detection and monitoring

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Non-invasive screening and genomics in NAFLD

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CLICK HERE TO WATCH A RECORDING OF THE WEBINAR

We have had a series of webinars about the disease and cutting edge research.  Now we would like to focus on the future for the patient.  Covid wrecked our plans for SUNN-2, the next step in our plan to eventually screen 1,000,000 patients a year for liver disease, but with vaccines we can begin to think about that future.

I'd like to invite you to a webinar where we will look to the future and some of the tools that are going to help us in our battle with the noncommunicable diseases that have become the scourge of our time. Let me challenge you to step back from COVID for a couple of minutes and think about health more broadly. One small step is to attend this webinar.

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Damned Liver, How do I monitor thee?

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I finally got a chance to get the COVID vaccine. As a guy with chronological superiority (fancy talk for I'm older than most) and a high risk category with NASH/cirrhosis this is a big deal.

I keep seeing comments from NASH patients who say they are not going to get the vaccine. That is a risky strategy.  I understand the concern but even beyond the risk of dying from COVID, I personally am concerned about the long Covid symptoms that are being reported. Think about that.  You are dealing with issues now.  As a compromised patient, even if you survive infection, might the odds of lingering problems on top of what you already have be greater. That possibility concerns me and is part of why I want the vaccine.

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Got NASH? Johns Hopkins needs your help

We are partnering with Johns Hopkins on a COVID-19 project vital to patients with NAFLD/NASH. As you know, we have been critical of the vaccine developers and the CDC for not engaging patients with liver disease. We want to know what to expect from this vaccine and the only way to find out is to do the testing.

We are pleased to announce a clinical trial for patients with diagnosed liver disease. It is very important that we as patients support this effort. It means having several blood tests but we are used to that and most importantly we can find out just how well the vaccine protects us. The link to sign up is below. I urge you to participate.

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DUMMY, you never say what you think on the internet

The times we live in can make discussion difficult. So much of what we see in the news every day is inflammatory and negative emotion stalks the land. I recently wrote about the importance of getting the COVID vaccine and I was not kind in my view of people who advise others not to be vaccinated. I got a bit of criticism for expressing my opinion. Knowledge can sometimes get past emotional responses so fair warning. I'm going to teach a small class here in how this virus and the vaccine really work. Stay with me, it is a really interesting story and matters to your health.
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We have all seen these picture of the coronavirus with all the spikes sticking out of the surface. Interesting as an art project but that image only hints at what is going on. In this explanation we are going to dive into what really happens. Don't worry, life is infinitely complex but you can understand this.

Lets look first at those spike proteins. Calling them spikes makes a headline that editors like but they are really more like ugly little mushrooms.
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Afraid of the COVID Vaccine? No No, You need this information

I keep hearing from people who have decided not to get vaccinated or who are fearful of the vaccine and don't know what to do.

I don't know if I can express how sad that makes me for those people and their families or how profoundly angry I am at people who promote fear about the vaccine without evidence.

CLICK HERE TO WATCH A RECORDING OF THE WEBINAR

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Non-invasive blood tests for liver disease - an update

What is the situation with blood tests for fatty liver disease today?

NON-INVASIVE BLOOD TESTS SOME EXAMPLES

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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.

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Thoughts at a hinge point in liver disease management

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.

 

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COVID vaccine distribution plan ignores NASH patients

The CDC COVID-19 vaccine distribution plan likely ignores NASH patients

The CDC is working on a plan for distribution of the COVID-19[1] 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.

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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.

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CDC knowledge of liver disease incidence with COVID is inadequate

 
 

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?)

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Non-invasive testing info at AASLD

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!

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https://tlmdx.aasld.org/

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.

 

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