When we look at the success of modern medicine and track the change in death rate for major diseases over time, a tragedy becomes clear. Since 1970, medicine has slowly been winning against all of the major killers except for one. The most glaring failure of medicine is clear in this chart from CDC records.
My story, like so many, is clearly mirrored in this chart. When I was told I had stage 4 cirrhosis in 2010, it was the first time I had ever heard of NAFLD/NASH. In the decades before that no doctor had ever talked with me about liver health and I don't believe any ever thought about my liver.
The thing that motivated me to start this foundation was the realization that it was standard of care for my doctors not to screen me for liver disease. It was a game of just wait until cirrhosis shows up and then we'll talk about end stage liver disease. I was appalled by that strategy. I felt the need to complain but I knew that as an individual I would be ignored. I started FLF to create the illusion that I was worth listening to as I represented the thousands of ignored liver patients. It started as a total con job as it was just me and Rosemary, but we were bold and nobody asked how many members we had.
A few years ago, a new standard of care document was produced by the AASLD which calls for screening and early detection. I like to think that we played a role in getting that to happen and I'm proud of that work. However, now we face an even bigger problem. Medicine at large is slow to react. If this revised model of patient care was being widely adopted, we would see a dramatic decline in these death numbers. So far, not so much.
The problem we face now is that the medical system is such a big enterprise with a vast number of competing needs. The GP's complain that they already have too many things to monitor and there is too much pressure on time to spend with patients on these kinds of chronic issues that aren't currently causing problems. In our system we really only care about critical issues. We are a disease treating model, not a disease prevention effort. The gastro docs are so engaged with scoping people that they don't want to deal with educating people about liver issues. The big money is in the procedures, not healthy living. Then, even if we could identify all of the people who really need specialty care, there are too few hepatologists to manage them.
For decades, liver disease was largely ignored, so we now have a system that is ill prepared to deal with the crisis of liver disease that we face today.
To be fair to the medical profession, we must recognize that this is a crisis of our own making. We live in a supersize me culture with food designed to massage our BLISS POINT rather than being nutritious, we are a society awash in alcohol, and we have become sedentary. What could possibly go wrong?
There is some progress being made. We now do have a drug, Rezdiffra, with others working through the FDA for treating our disease. More physicians will deal with it if given something to prescribe. That isn't really the solution we should be seeking. Prevention should be our goal, not drug treatment. We are finally going to have effective drugs for the disease, which is a blessing, but relying on those is a fools errand. We have to change our society if we are to blunt this epidemic.
The foundation has expanded our broader outreach to support efforts to find a better way. We have two impact projects, The Wellness League, and Sober Livers which reach beyond the concerns of drug development and focus on the needs of people who seek to live healthier lives and avoid liver disease.
The Wellness League Local Search Tool
Many people don't know what services are available to them in their local area. Finding those local resources in their local zip code is often a challenge. We are developing a tool to help with that. Just click on the link: enter your local zip-code in the form: to explore the services available to you in your area.
In June 2024 Sober Livers, a new groundbreaking organization for patients with alcohol use disorder and alcohol-related liver disease, launched with great success. Patients seeking support that only comes from those that have walked in the same shoes suddenly realize they are not alone.
We are seeking drugs that will speed up these processes and perhaps one day even directly attack the scar tissue, but even with drug support, it will be key to develop personal habits which support liver health. That always starts with diet. If you would like to know how we think about that subject, try this link :
Getting physicians to be more proactive about liver disease is one of our current campaigns. To that end, we need patient information. I know you may have taken this survey before and we thank you, but if you have, it is important that you do it again. Our goal is to track the changes in patient care over time. We need to know how it is going for you over time. The changes are important. How is treatment changing, are new therapies being prescribed, are patients being educated? These are just a few of the questions we are trying to answer.
We can't press the system to do better if we can't show them data that change is needed, so please join us by clicking the link and take the survey.
THE 2025 STATE OF STEATOTIC CARE SURVEY
If you would like to read the report from last year, here is a link to that one.
The State of Care 2024 Lay Report
Or you might find the poster presented at the 2024 conference for the American Association for Study of Liver Disease interesting.
