A blog post by Jackie

The United States healthcare system spends an estimate of $32 billion annually on the treatment of Non-alcoholic fatty liver disease (NAFLD). Despite these huge figures, not every person suffering from NAFLD is able to receive treatment due to the high medical cost as the state covers just a fraction of it. Although people take health coverage to pay for medical costs, a survey conducted in 2017 showed that 11.3% of adult Americans had no medical coverage and those that have, it is limited to a certain amount leading to patients of NAFLD to seek alternatives to cover the deficit. Sadly, this disease is silent with over 100,000,000 Americans living with fatty liver and are not aware of it.

Cost of Treatment for NAFLD

The annual cost of care for a NAFLD patient that has a private insurance poloicy is $7,804 and for new diagnosis is $3,789 - without treatment. Treatment cost for non-alcoholic fatty liver disease is very high according to a study presented at the International Liver Congress 2019 in Vienna. The annual cost of treating NAFLD has been approximated to range between $20,000 to $100,000 annually based on a study by a group of Israeli researchers. To meet these expenses, many have to rely on loans; however, it’s important to bear in mind that consumer debt is not the same as medical debt, as medical debt is not incurred voluntarily and does not involve credit extension.

We support health writers who wish to spread their work to a wider audience.  This article was submitted by Natalie Shae.

Note, the study cited in the article was very small with children under physician care but if you are a liver patient it is a cautionary note if you are considering CBD oil.  We are not aware of any research that would suggest using it more broadly but consult your doctor.

Liver Damage and CBD Oil

June 4, 2019 by Natalie Shae

The FDA has approved a CBD-based drug named Epidiolex®. The drug was researched and made by Greenwich Biosciences, and the company’s vice-president of U.S. professional relations, Alice Mead, has stated to the FDA that CBD is “potentially” a liver toxin. She said this during the FDA’s first public hearing on CBD oil on May 31, 2019.

What is CBD oil?

Cannabidiol oil is extracted from the hemp plant, which is in the same family as marijuana. Unlike THC in marijuana, CBD does not cause a “high” or chemical dependence. CBD that is extracted from the hemp plant is legal, but individual states have laws to regulate it.

Because CBD oil is not considered a drug, it can be a common additive in many products. This includes e-cigarettes (vape oil), lotions and various herbal supplements. It has also been shown to relieve symptoms of different disorders like epilepsy, anxiety and multiple sclerosis.

About one million Americans have cirrhosis and don't know it.  When they are told "You have cirrhosis, I'm sorry but we have no treatment", the future that they imagined lay before them dies.  It is, in a very real way, a death of self. 

We all know that we will one day die but we hold a sense of how we think or hope our future will unfold.  There is a continuity that flows with the preceding events in our lives as a single journey. If you have no warning, as so many liver disease patients do not, and your first information is that you have cirrhosis, a probably terminal illness, the self that you have known dies.  The life you thought you were living no longer exists and a new unbidden and unwanted future is before you and you must find a way to reconcile yourself with that new reality.

with all due apologies to Elizabeth Barrett Browning.

I love thee to the depth and breadth and height my soul can reach.

As a patient, the scale of the effort directed at liver disease that has been put on display at AASLD, EASL and the NASH Summit recently was striking. Not being a veteran goer to this kind of event it was all a bit overwhelming.  As an individual the scope of the activity is very difficult to wrap ones arms around.  Interestingly, there is a great sense of gratitude attached to the experience of observing all of the effort that is being directed toward solutions that might one day mean life or death for me as an individual. The scale of the events is too big for me to digest in a meaningful way but are a powerful testament to the contributions of the health community to the best of us as a society.

I love thee to the level of every day’s most quiet need.

The day to day burden of living with chronic disease, of which cirrhosis is but one, cannot be appreciated by those who are not unwell.  Even those in the profession see mostly the surface and would go quickly mad if they were to allow themselves to be sucked into the suffering of those they care for in any deeply personal way.

I just returned from the EASL meeting in Vienna. It is one of the two most important gatherings of liver researchers and industry conferences focused on liver disease.  For many years this was a modest affair.  There have always been plenty of ways for the liver to be harmed but there was not much that could be done so, like the liver, the event cooked along in the background.  When the cures for Hep C and HIV were developed everything changed.  When it became clear that liver disease could be cured and that something could be done about the very large disease load peculating through our generations the spotlight turned squarely toward liver function.

Our epidemiological studies have, for years, been showing the burden of disease building in society with our steadily advancing obesity and comorbid problems.  Most of the attention has been focused on diabetes, cancer, and heart disease because we had ways to at least try to deal with these health threats.  The liver, which is a comorbid participant in a wide variety of diseases, was largely ignored because there was nothing medicine could do about the typical liver diseases of NAFLD and NASH.  Even though a stage 4 NASH is 7 times more likely to kill you than diabetes, it remained mostly out of sight because of its lack of symptoms. 

However, today the times they are achangin!

When combined with their common comorbidities, NAFLD and NASH are the Swiss army knife of death.  Like the Swiss army knife, which has many functions, liver disease is a favored tool of the grim reaper because of the complex role it plays in the health of other organs.

As patients, we think about disease by organ system, largely because that is the way medicine investigates disease.  We know about diabetes, cancer, heart attacks, dementia, irritable bowel, just to name a few that we have a sense of.  We know cirrhosis because of alcohol and we may have heard about fatty liver but we have very little understanding of the vast interactions that are the responsibility of the liver.

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.

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.

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.

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.

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.

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

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.

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.

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?

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.

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.

transplanting-pig-kidneys-in-humans-and-other-ideas-to-solve-the-organ-shortage

• 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.

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.

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

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.

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.

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.