Good news from the Primary care docs treating fatty liver

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I have been helping several groups doing research on what is happening with liver disease patients and I have been surprised by a trend that I have noticed.  When a person first learns that they have a serious liver disease they reach out to Dr Google, our forum, and significantly to FaceBook support groups.  I don't have numerical data, but I interact with multiple forums that reach thousands of patients so I have a window into what the day to day is like.

A problem we have focused on is that it has been the standard of care not to screen for liver disease at the primary care level, in the absence of symptoms.  That means that the first time many people learn of their risk is being told that they have cirrhosis.  Much of our effort has been spent trying to illuminate this as an issue.  We are particularly concerned as the disease is showing up in younger people in the death rate statistics but we hadn't really seen movement in when people learn about the disease.

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I dream of Jeanie

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We hear a lot about the patient voice.  There is a focus on the patient experience but it often engages the symptoms and the physical struggle but rarely touches the psychological.

A young friend, Jeanie (not her real name), lost her battle but along the way helped me understand the process better. Her story is common but unique as well. I hope to pass along a small window into that aspect of being ill.

Illness is a common thing.  A part of life which we all learn about from a young age. Our sense of it is that it hurts but we expect we will be better and return to our normal lives.  Being diagnosed with a chronic illness is a very different experience. Grief is another process we learn young. People die and we grieve for them.  The onset of a chronic illness is the death of ourselves and we grieve that passing.  The person we once knew so well is gone.  The future that we imagined before us has become a journey through a very different world.  Grief for the death of a loved one is expected. Grief for the death of oneself is rarely acknowledged.

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How are digital diagnostics changing medicine

An overview of the state of the art by Fibronostics

5 Ways Digital Diagnostic Tools Are Changing Medicine

Imagine a tool that has the capability of accurately detecting disease and monitoring a patient’s health without the need for invasive, costly methods like X-rays and biopsies? Sounds impossible but this has become a reality in recent years.

As technology continues to evolve, it is no surprise that topics like digital diagnostics have become popular in the healthcare industry.

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What Are Digital Diagnostic Tools?

Digital diagnostic tools are becoming more and more popular among healthcare providers. Through this technology health evaluations can be done virtually and electronically, allowing even patients who are not physically in their healthcare provider’s office to be diagnosed or evaluated. This innovative technology is predicted to improve medical care for both patients and doctors.

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First NASH drug to report a successful phase 3 trial

It is very early and we don't know a lot yet but Intercept Pharmaceuticals has just released results of their Phase 3 test of Obeticholic Acid as a possible treatment for NASH.

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This is a major step for us as patients.  We all know the story.  The doc says sadly, "You have cirrhosis, I'm sorry we have no treatment".  This is a refrain we see retold thousands of times here at the Foundation and it is the path I have personally traveled. I've written that we are on the brink of a new day when we will have options.  This is the dawning of that day.

http://ir.interceptpharma.com/news-releases/news-release-details/intercept-announces-positive-topline-results-pivotal-phase-3

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Dying in your 40's, why are Americans choosing to do that?

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You may think dying of liver disease is for old people. According to the CDC it is the 4th leading cause of death for the 45-54 year olds.  In this analysis a low number is very bad. If you ignore poisoning (drug overdose), and suicide, it is the second leading cause exceeded only by its common partner heart disease.

We provide quite a bit of information about the silent killer that is liver disease but since the organ has few symptoms before it starts to die most people don't see themselves as being at risk.  Since you are on my newsletter list you probably know the disease for what it is.  I am writing this one in hopes that you might forward it to someone you care about that may not be aware of the risk that they face.  We frequently hear from young people with families who are suddenly diagnosed with cirrhosis.  That is a mostly preventable tragedy but understanding the risk is the first step.

I encourage you to share this with someone you know who might benefit from the information.

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When food is medicine, what makes a decent snack?

As a patient, I approach NAFLD and NASH with a food as medicine strategy. I believe in the idea that with a damaged organ making it work as little as possible is the only rational plan.

For now, let's assume that you are eating a liver friendly diet but what do you do for those in-between times.  A snack when you need something convenient.  We all know that vegetables, fruits and nuts make a great snack but are a challenge if you are not at home. We need something that is convenient, not messy, doesn't spoil, isn't bulky, doesn't require preparation, and most importantly is consistent with the food strategy.

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fructose, fatty liver, and insulin resistance

Fructose and fatty liver

Fructose is even more strongly linked to obesity and diabetes than glucose. From a nutritional standpoint, neither fructose nor glucose contains essential nutrients. As sweeteners, fructose is about 2.3 times as sweet as glucose so manufacturers love it. Yet fructose is particularly malevolent to human health compared to glucose due to its unique metabolism within the body.

Glucose and fructose metabolism differ in many significant ways. Whereas almost every cell in the body can use glucose for energy, no cell has the ability to use fructose. Once inside the body, only the liver can metabolize fructose. Where glucose can be dispersed throughout the body for use as energy, fructose is targeted like a guided missile to the liver. When you eat a large dose of sugar the liver is heavily burdened to manage it and when it is overloaded health is compromised.

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Can blood tests tell you anything about liver health?

As an experiment, let's say that you are a person who cares about your health.  Assume you know that liver disease is commonly asymptomatic or silent. It gives you no clue that it is dying until it is in bad shape.  As an advocate for your own health, can you look at your own medical history and decide how likely it is that you need in depth diagnosis for the silent killer of cirrhosis?

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There has been a lot of recent research on blood based screeners and the field is advancing rapidly.  It is still early and the broad practice of primary care medicine has not yet started using the best information available routinely.  However, we now know that we can look at something more than just whether AST and ALT are elevated as guides to advancing liver disease. It is important to understand that high levels of these tests indicate that a lot of liver damage is occurring.  What you want to know is are you at risk of being in that situation even though you have no symptoms.

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We are on the brink of a new kind of medicine

As patients we worry about today and will we be better or worse tomorrow so we barely glimpse the broader medical dynamic that is remaking the very concept of medical care.

There has never been a time like this in human history.  Between 1750 and 1850 medical knowledge doubled.  It doubled again by 1920.  By 2008 it was doubling in about 7.6 years and by 2004 it was about 3.4 years.  It is projected that by 2020 medical knowledge will double in 73 days.  It is inconceivable that our systems can deliver that knowledge to us in the form of treatments at a rapid pace like that but can you imagine what the great leaps might be that may be possible for us as patients.

If you have to be ill, this is a good time to be doing it.  Despite all the frustration, ineffectiveness, lethargy, and downright pigheadedness that can be the patient experience, help is on the way.

This a link to an article a good friend wrote.  I'll tempt you with a sample but it deserves reading in its entirety.

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  • There are 114,000 sick patients on the organ transplant list in the U.S., but about 8,000 people die every year waiting for the organs they need, according to data from the United Network for Organ Sharing.
  • Start-ups have invented new organ profusion machines to keep donor organs alive until surgery to reduce organ death and boost the number of organs available for transplant.
  • Scientists are using gene-editing techniques to make it possible to transplant pig kidneys in humans.
  • The Mayo Clinic in Jacksonville is doing stem cell research to develop ways to repair and regenerate damaged organs.
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We join with HTAA to promote liver health in the trucking industry

We are working with the Healthy Trucking Association of America, (HTAA) to help educate and support truckers at risk of liver disease.  It isn't commonly known that truckers have among the highest rates of diabetes and heart disease of any profession which means they also have a high risk of asymptomatic undiagnosed liver disease.  We will be doing a live radio broadcast about liver disease on  INTHECAB  radio at 4:00 PM CST February 6th.  This is internet radio so if you would like to listen click on the link at that time.  If you are a country music fan you may like the station even if you aren't a trucker.

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The $35 billion race to treat liver disease

  • The race is on in the pharmaceutical industry to develop drugs to treat a form of fatty liver disease called nonalcoholic steatohepatitis, also known as NASH.
  • Industry experts estimate the global market for these new drugs is $35 billion.
  • The U.S. is spending $5 billion annually in health-care costs related to the disease, which include chemotherapy, transplants, tests and hospitalizations, reports the Center for Disease Analysis.
  • The National Institutes of Health estimates as many as 12 percent of U.S. adults have this disease, or 30 million people.
  • In spite of the large U.S. patient population at risk, the CDC has not addressed the crisis, and there is no FDA-approved treatment available, experts point out.

    Even worse, signs of the disease are asymptomatic, so a person often is not diagnosed with NASH until it advances to a late stage, when cirrhosis begins to ravage the body.By that point the only option is a transplant to avert death. That's because physicians typically do not screen for fatty liver disease as part of the annual physical they give patients when they analyze for other life-threatening conditions, like heart disease, diabetes, breast and colon cancer.

    A fuller discussion can be found here.

    https://www.cnbc.com/2018/12/21/the-35-billion-race-for-a-cure-for-a-liver-disease-that-affects-millions.html

    This article was written by Lori Lannou, a friend, who is a senior editor for CNBC. I've summarized a little of it here but recommend the full article to you.

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I can take supplements for liver disease, right?

Superfood  -- Miracle Cure -- doctors don't want you to know -- fix your liver quick

Sound familiar? Have you ever responded to an ad for something to help your liver?  A few of you have as it is a multi-billion dollar business.  Most of us have taken something, mostly on the hope that it might help.  I'd like you to take a minute and examine the question critically of whether or not you can reasonably expect a benefit from products like that.

I want you to click on this picture and study it in a larger size for a minute or two

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A Gift of Hope

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I recently attended the 2018 meeting of the American Association for the Study of Liver Disease (AASLD). It is the key liver research association in the US.  It brings together the top researchers in the field with reports on their work.  Since there are no therapies for those of us who have liver disease, this is an important benchmark as we look at the state of research.

I'll discuss this more fully below but the short version is that we will get therapies for liver disease in the next 2 to 5 years.

The message in that, is that it is rational to have hope in the face of a diagnosis of serious disease which currently has no treatment.  I'm reminded of a stanza from a favorite poet, Kipling, in a piece called "IF".

If you can force your heart and nerve and sinew

       to do their turn long after they are gone,

And so hold on when there is nothing in you

      except the will that says to them Hold On.

For so many, holding on is hard to do when faced with the constant strain of chronic illness, but help is on the way. A few observations of the meeting and the state of liver research. This is a little long but it is a big subject, worth your time.

 

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Someone is killing our doctors, can we help?

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The suicide rate for doctors is double that of veterans.  The veteran death toll is a disgrace but you likely haven't heard about the docs.  Can we, as patients, help?

There is an increasing dismay in the liver disease community as more people are shocked to learn that they have cirrhosis. A common question within the community is why wasn't I told? How is it possible that my doctors didn't warn me? As this current of dissatisfaction grows there is a counter current in which medical care is being transformed into a process that commonly satisfies neither doctor nor patient. More dangerously it threatens to kill the soul of medical care and to drive out the best practitioners of the healing art.

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There is a tide in the affairs of men

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Hopefully you clicked on the picture to hear the very short quote from Shakespeare.  Sometimes I can't resist a bit of drama.

Since you have an interest in liver disease, I wanted to let you know that we have reached a real milestone in the development of the foundation.  We intend to help change the way liver disease, particularly NASH, is managed and to save the lives of millions who do not know today that they are at risk.

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Do you remember your first time?

There are some benefits to being an advocate.  Sometimes you get to be first. We just finished training and certifying our staff to do FibroScan tests.  As part of that I got to be the first one tested.  Getting to this point has been a long journey, about 9 months, so a birth of sorts though happily a painless one. Everyone shows off baby pictures, here is beauty for anyone who hasn't seen a FibroScan report. This is my new scan. Click on it if you'd like to see the full size view.

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Although this note is about our screening project, it is also an opportunity to reinforce our view that with lifestyle changes it can be possible to improve liver health, even for a cirrhosis patient. 

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Moments in Time - Can great things grow from a tiny idea?

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In every battle there are moments which mark the end of an era. They portend the beginning of something new and a time when tiny things can sprout and grow to a vast scale. We have just completed our installation and certification of our first FibroScan system for our liver screening project. We are alive and well in Texas City and a new day is dawning.

 

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The DOOMSDAY CLOCK can we believe the odds are really better for liver therapies?

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I recently wrote about my view that for the first time a cirrhosis patient could look forward to real medical therapies.  A few folks felt that I was planting false hopes and that such miracles weren't going to happen.  In light of that, I thought I might provide a broader view of the situation today.

Some of you are old enough to remember that not so long ago Hep C was unknown.  We called the illness non A non B hepatitis. Today we have a cure. A miracle perhaps but also a lesson.

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The DOOMSDAY CLOCK is running backward

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For cirrhosis patients there has always been a doomsday clock.  We all know that there are no treatments and only a transplant can save us.  Transplant is on the mind of a lot of us but what do the statistics say?

 

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Our young adults are dying, do you know why?

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OK, get ready. BORING government statistics coming. Sorry, but sometimes it is really important to know what is happening to our children.

Statistics from the CDC, from 1999 to 2016, annual U.S. mortality from cirrhosis increased by 65% from 20,661 to 34,174. Let that sink in for a minute. What if we chart the rate of change of various disease.  Not the number of patients but how it is changing.  Look at this chart for a minute. This shows how fast things are changing and those liver statistics are horrifying.

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