The Fatty Liver Foundation exists because I was not willing to be a well behaved member of the parade of misery that liver disease is becoming for our society. My bucket list includes not dying of liver disease. I do a review from time to time for all the new people. Hopefully it is of some benefit to the old timers, but lets step back and think about our goals.
Our society has committed self harm by adopting diet and lifestyles that are hazardous to your health. After world war 2 the scientists and engineers produced a cornucopia of discoveries and developments that have led to a modern world of abundance never before known. Along the way we became sedentary and adopted diets that are simply unhealthy. If you were doing a case study of our society you might be forgiven for making the argument that key goals were to create work for the healthcare system and to build a new diet industry to experiment with feeding strategies.
Our problems didn't come as a result of a plan, of course, we are living in a time of such rapid change that we have no tools with which to make a plan. We didn't plan to become obese and create a vast web of co-morbid diseases driven by food that we liked, that was plentiful, but was bad for our health. We have done that, however, and it happened so fast our knowledge and the systems that serve us simply couldn't respond in time.
Just an example, but there are doctors working today who were taught that fat in the liver was benign even though we know today that fatty liver induced disease will soon be the number one reason for liver transplant. The system hasn't been able to cope with the training demands as our knowledge about disease has exploded. Our food systems deliver vast quantities of food that tastes good but is known to be unhealthy. Our society, government, and industry are wedded to the current structure so poor health is assured.
You might be tempted to ask, OK smarty pants, so what does that have to do with the Foundation? I'm glad you asked, I might reply, in my best expert voice.
We know that lifestyle and proper nutrition does work to manage and prevent fatty liver and its co-morbid conditions. But it is very hard to change and society stacks the deck against being successful. We also need effective treatments, but none exist today. A lot of very talented people are working on developing tools to help us but we are trapped by the systems we have developed over the past several generations. We are faced with a classic Catch 22. In case you are too young to get that old reference, a Catch 22 is a problem that is impossible to solve because the rules are contradictory.
As liver disease patients we face such a situation today and if irony is your deal you will love this.
CATCH 22 - 1: There are no treatments for cirrhosis which is life threatening. Cirrhosis is most often asymptomatic, which means you have no clue it is coming. Your doctor knows that if liver disease is detected early it is quite manageable. The doctor, however, is not supposed to find out if your liver is going bad until there are symptoms even if there are ways that he could screen you.
CATCH 22 -2: Everyone knows that liver disease and its co-morbid companions will overwhelm our medical systems and cause a vast amount of suffering if it cannot be managed. The research industry is working very hard and developing many possible drugs to treat the disease. For a treatment to become available it has to be tested. It can only be tested on people with identified disease. Even though there are 10's of millions of potential trial candidates they cannot be identified because the industry cannot screen at risk people for disease. Therefore, the testing of needed treatments can't be done because there are not enough qualified patients.
CATCH 22 - 3: The technology exists in the form of a Fibroscan test which can take the first step in identifying people who have advancing risk of disease. It is fast and non-invasive. Sort of a no brainer kind of thing. There is great advocacy for "wellness" in society. Early detection is a mission statement you see all the time. But the catch, because doctors aren't supposed to screen for liver disease, no one wants to pay for screening that would contribute greatly to "wellness".
I was annoyed when I found out about this after my own journey through the diagnostic thicket and the foundation was born as our tiny way to break the back of the Catch 22 monster. Our solution, take the screening tools directly to the patient as a non-profit foundation and do it as a private pay or philanthropic project. Below is a link to an overview of the project. More detail is available on the website.
For me to not die of liver disease, I need the industry to discover treatments. Not enough patients? OK, I'll go find some. Simply put that is what we are about. We want to accelerate the drug testing cycle by assuring that there are enough patients for the trials that must be done. Feel free to add this to your bucket list if you wish and take some of your friends along for the ride.
Just because I was proud of her, here is an inspirational story about my mom's response to a diagnosis of terminal illness
I'm 91, it's my bucket list and I want to skydive
Her encouragement was one thing that led to the foundation before she passed away.