Announcing the NAFLD Screening Fund

The Fatty Liver Foundation is launching a public private partnership fund with the long-term goal of screening a million asymptomatic, undiagnosed individuals a year for nonalcoholic fatty liver disease (NAFLD).

NAFLD and its serious advanced version nonalcoholic steatohepatitis (NASH) are epidemic but largely unknown to people. These diseases have subtle symptoms until late stage when they are diagnosed as cirrhosis. Most people know cirrhosis as a disease of alcoholism, and the end result of destruction of the liver is the same, but the cause is different. NAFLD is primarily a disease caused by food. It was unknown before calories became abundant and obesity became common.

There are a lot of pre-pandemic statistics. As you think about this issue remember that changes due to COVID-19 have increased the problem dramatically though we aren't certain how much.  We know that our society has gained millions of pounds of fat and that will be a powerful driver of chronic disease. Let's look at how bad it was in the good old days. You may think of liver disease as a disease of the old but it is the 4th leading cause of death for people in their prime of around 50. As we have gotten fatter that age has gotten younger.

Medicine has been a modern miracle. So many things we take for granted are magical compared to most of human history. Just one benchmark says it all. Historically about half of all children died before puberty. Today we are shocked when young people die because it is uncommon.

A challenge is how to put this in context. Medical care has continually improved, and the management of disease just gets better each year.  An interesting measure is to chart the rate of improvement for various diseases.  How fast is medicine defeating cancer, heart disease, infectious diseases, or liver disease for example? We can track the death rate for various broad conditions to see how we are doing over time.

Of all the statistics I see this is the one that truly shocks me. The death rate for everything else has improved since 1970 but the rate of liver death has exploded. This helps explain the earlier chart as this silent killer stalks ever younger people. That maverick line shooting up is the changing death rate from liver disease.

A fair question might be does anyone know about this? There are groups who do. Some medical specialties, a few elements of public health, most payers, some drug developers, various patient groups, for example are concerned but broadly the problem is not recognized as the crisis that it is. The fundamental barriers are that the disease is mostly silent for decades and we have no medicine to treat it. The first time many patients learn of NAFLD is when their doctor also tells them, "I'm sorry but we have no treatment".

So how do we solve this? Clearly it will take a lot of money. Should we have insurance companies do it? How about the drug developers or the doctors perhaps? Maybe Congress will step in?  How about making the patients pay for it or make it an employer responsibility? It is the nature of really big problems that there is no one who will step forward. Even though we can see the tragedies coming no one can see themselves being the change.

From the patient perspective this situation cannot be neglected any longer. We cannot allow early death from preventable chronic lifestyle disease to become the norm. As stewards of ourselves and our families we must not accept the coming of a time when a young person says, "I'm glad I don't have fatty liver yet". Declining health from preventable disease cannot become the expectation of our people.

The only solution we see as patient advocates is that we must provide a way for the many players in this drama to join forces. This will take a lot of money and that pool of funds does exist but is fragmented and unfocused. As a trusted voice of the community FLF is launching the NAFLD Screening Fund. This will provide a mechanism for public and private funders to join together in common cause with the patient community. By joining together we can work with local communities in finding ways to engage this threat at the only truly effective level, that of the patient within the life that they lead and the reality of their community.

If you would like to join us in this effort, click the image below for more information.


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