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.

 

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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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NASH - Swiss Army Knife of Death

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1 A PATIENT'S VIEW OF THE NASH JOURNEY

When asked to write an article about the patient perspective, it was easy to say yes. Now, looking at this page it is a daunting task. As a cirrhosis patient and Chief Executive Officer (CEO) of the Fatty Liver Foundation, a patient advocacy group, I have my own personal story. My journey from thinking, I was perfectly healthy to facing a terminal illness is common enough but it does not represent what one might describe as the “patient journey.” Through the foundation, we interact with thousands of patients so I hope to provide here a broader glimpse into life as lived by patients.

When we consider patients as a general case in the USA, we see a population that is unwittingly choosing to be ill more often as they age and to die younger and with more difficulty than they expect. Nonalcoholic steatohepatitis (NASH), a disease that was undefined until 1980, has become a leading killer of middle age and older adults. A leading precursor, nonalcoholic fatty liver disease (NAFLD), is steadily increasing in all age groups.

TO READ THE PUBLISHED ARTICLE CLICK HERE


Where Can We Get Effective Diet Advice?

THE PROBLEM: The real liver experts don’t offer effective diet advice

(click here for a pdf with all the science references)

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.
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OUR GOAL: Design a diet strategy that minimizes the liver workload

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COVID infections, What diseases make you the most vulnerable, New data

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.

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Broadly, these are the elements of metabolic syndrome and fatty liver disease.

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Reflections, where do you find joy or what do you find awe inspiring?

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Through the Foundation, we interact with a lot of people in pain and going through very difficult fearful things. Stepping away from that part of life and thinking of the things that move us emotionally, if even for a brief time is of great value.

There are so many things to be moved by. Who isn't touched by a baby's laughter? Memories of better times and places have power. I enjoy seeing the rarity of mastery of something. Grace is power perfected. A fan or not, who could deny the artistry of Muhammad Ali in his prime? Do you remember watching Secretariat run? Simone Biles is a breathtaking gymnast. The duet from Lakme always bring tears to my eyes. You don't have to be a fan to appreciate how hard it is to do what Baryshnikov and Kennedy make effortless. Can you imagine what it is like to be able to compete in an Ironman Triathlon? The list is endless and very personal for each of us but worth reflecting on. What moves you?

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Grief when COVID stalks the land

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The death of loved ones and grieving are natural elements of our lives as humans and it is in our nature to experience grief very deeply. Every society has developed rituals and processes unique to itself to help each other deal with the emotions of loss. In the age of COVID we become untethered in that experience as nothing works like it is supposed to anymore.

From the vantage point of the Foundation we have watched COVID rip through our at risk population. They don't usually list liver disease in the statistics but since it is co-morbid with so many of the first tier killers we see it clearly sweeping through the community. With it comes a very different stage for grief to play out on regardless of the actual cause of death.

Grief visited us very personally this week. My wife's brother passed suddenly yesterday and my ex wife died today. The ripples of those events are quite different in this age of COVID from what we have known in the past.

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We the people with liver disease...

Dealing with agencies like the FDA can make you a little crazy. Lawyers and laws have turned life and death decision making into our version of the wailing wall. We come as supplicants to leave our prayers and we are told to stand silently while our fates are debated in secret. Sorry, this is long but important.

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People who suffer with advanced fatty liver disease, nonalcoholic steatohepatitis (NASH), find ourselves in that situation. About 100 million Americans have fatty liver disease (NAFLD) and about 20 million have its more dangerous advanced stages of NASH and there are no therapies. Most of the people who have the disease don’t know it yet as it is a very silent killer with few symptoms. The first drug to offer a useful therapy recently applied for a conditional approval. The FDA is supposed to consider the patient’s viewpoints but to date has not and recently cancelled the only public forum where patients would be able to be heard.

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Personal Best, I can run faster than a walking woman

I was jogging in a park near my home yesterday.  Actually, jogging may be too grand of a term. We have all seen mature folks jogging.  I secretly call it the old guy shuffle, but I say I go jogging.

I was doing well and I heard footsteps behind me.  No surprise, I get passed often so I stayed near the edge.  To my surprise a woman came along side me and bid me a cheery good morning. OK, nice friendly person, but she was WALKING!!!

To give me my due, she was a very fast walker but darn, I am jogging in my accustomed style.

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The FDA and my goat and obeticholic acid (OCA)

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I recently wrote about our concern that the FDA had reset the clock on OCA, obeticholic acid, which is the first potential treatment for advancing fibrosis due to NASH. The core of my objection is that it was done without patient input.  As patients, who face potential terminal illness with no therapies, the prospect of a breakthrough drug is of vital interest.

I hope to not be unfair to the FDA here as I have not seen the actual text of their notice to cancel the planned Adcom meeting and delay a decision on OCA. That said, my understanding is that they stated that based on the data the FDA has reviewed to date, the Agency has determined that the predicted benefit of OCA based on a surrogate histopathologic endpoint remains uncertain and does not sufficiently outweigh the potential risks to support accelerated approval for the treatment of patients with liver fibrosis due to NASH

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THE FDA HAS GOT MY GOAT

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Don't bother with this if you don't care about liver disease.

The FDA just punted on a decision about the Intercept drug obeticholic acid, or OCA.

It was anticipated that OCA would be the first drug therapy for advancing fibrosis due to NASH.  It was the first drug to meet the FDA defined surrogate endpoints, most importantly the reduction by one stage of fibrosis, in a phase 3 trial.

OCA had been given breakthrough drug status earlier as the first drug that provided benefit to fibrosis patients.

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NAFLD probably increases your risk if you get COVID

It is being reported that patients who have NAFLD are about twice as likely to have a more serious illness than patients who are obese but do not have NAFLD if infected with COVID.

NAFLD is more likely to result in serious symptoms than obesity without NAFLD. This distinction is important for proper risk stratification.

I know that when you read about the risk factors associated with COVID they rarely mention liver disease. There have been some early reports that essentially say that liver risk is limited.  In the early turmoil of a crisis like the COVID pandemic a lot of information is fragmented and based on very small samples.

A study has just been uploaded to a pre-release server which takes a much more effective look at the question of whether NAFLD should be considered to be a risk factor for hospitalization should you become infected. 

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Thinkin Bout Things, not COVID for a change, but salt

With a bit of time, even things like the COVID virus are accommodated by our fears and broader concerns bubble back up.  One of the challenges faced by a lot of people with serious chronic illness is that they are alone physically or emotionally.

As I think about these past weeks and staying at home I realize that I am so very fortunate. My wife Rosemary makes my days in isolation a joy rather than a burden but I see messages in our patient forums that break my heart from people who are literally dying deaths of despair.  If you are well enough, reach out to those you know who are lonely. Chronic illness is difficult enough without having to do it alone.

Click the picture below for a link to a bit of fun on the subject of introspection. Many of you are old enough to remember this but it may be meaningful to our younger folks as well. (The picture isn't related, I just like it)

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You have liver disease, what next under COVID

We are reaching the end of the beginning of the COVID pandemic. As society tries to return to some kind of normal the challenge is how, as an individual, to manage being a part of society if you have a medical issue.

If we look at some recent data from New York the issue is very clear.

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Clearly, about 96% of the deaths are people older than 45. We have to remember that anyone can get it, but while it is hazardous for mature adults, most younger people will be OK. What that actually means is that it takes about 40 years for a typical person to develop some kind of chronic illness which puts them at risk.

That is all very interesting, but as part of the "at risk" population how do we think about the near term future? There aren't many good models but it is probably wise to keep a perspective even in the face of horrific news every day.

 

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