When you think about how we, as a patient community, live day to day what do you think the top 5 concerns are for this broad and very diverse group of people?

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Me too, that's why this site is ad free and dedicated to patients. Give it a look at least.

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¿Por qué la población hispana en los Estados Unidos está siendo altamente afectada por la enfermedad de hígado graso no alcohólica (NAFLD)?

La prevalencia de la enfermedad de hígado graso no alcohólica (NAFLD), es una creciente pandemia afectando a millones de personas en el mundo. Actualmente en los Estados Unidos una de cada tres personas presenta la enfermedad, y desafortunadamente la mayoría no lo sabe.

La población hispana en los Estados Unidos es uno de los grupos principalmente afectados por esta enfermedad. La alta prevalencia de comorbilidades presentes en los hispanos como diabetes, obesidad, hipertensión, hiperlipidemia y enfermedades cardiovasculares son algunos de los principales factores de riesgo asociados con la prevalencia de NAFLD. Los hispanos son uno de los grupos que, si son diagnosticados, presentan estadios de la enfermedad más avanzados y en muchas ocasiones tienen un peor pronóstico.

CLICK HERE TO PARTICIPATE IN THE NAFLD/NASH CARE SURVEY

The patient community is very large, but a broad understanding of the challenges we face is lacking. In peer groups patients often express their opinions of the care they have received. Patient experiences cover the entire range from very good to very bad.

There are existing patient surveys but they are usually driven by academia. I thought it would be a useful and simple thing to capture a view of the patient experience from the patient perspective so it should be simple to get a large group of patients to engage. Seriously, what could make more sense than patients speaking up about their experiences?

We recently offered a flash survey to our members asking for their views on whether the term "fatty" included in the name of nonalcoholic fatty liver disease (NAFLD) was stigmatizing.  Here is a link to the results.

Results of the Flash Survey on Stigma in the name NAFLD

I am a member of a committee recommending possible name changes for NAFLD.  A key concern of some is that the word fatty is stigmatizing and should be dropped from the name.

This small survey asks the question of you, as a member of the patient community, what you think of this argument? The link below is to a 5 question survey of your views.  If we want to be heard we have to speak up.  Please help by answering these few questions about stigma.

STIGMA SURVEY SHOULD THE NAME OF NAFLD BE CHANGED

The CDC reports that over 80% of our people over 65 have two or more chronic health conditions. Big whoop you say, people have problems when they get old. No big deal.

Hold on there buckaroo. That really means poor health and those people mostly don't feel well. Why would you think that is normal? Do you think it is just fine to be unwell for more of your last years than is normal?

International NASH Day is a chance for us to focus attention on the silent epidemic of liver disease that is much deadlier than COVID, but most people don't even know its name. The problem is that it does its damage over decades so we don't notice that we are dying until it is very late in the disease. The statistic that should shock you is that it is the number 4 killer of people in their 40's and 50's. Some of the saddest stories are moms with young kids who wonder what will become of them when the doc says you have cirrhosis and I'm sorry we have no treatment.

Nature/Nurture what really leads to disease? How do we think about risk? Is the goal of individualized precision medicine achievable? Is biology destiny? Can I choose not to kill myself slowly?

These are among the deepest issues facing us as we consider how, as individuals, we choose to live our lives.  We never think day to day in these terms, but we are all a different oddly shaped bag of chemistry that somehow persists for a time.

I wonder who the last person to learn that they have cirrhosis following unrelated surgery will be? The problem of diagnosing liver disease during surgery must become a thing of the past. Routine screening and non-invasive testing is the key to eliminating this devastating situation.

Announcing The State of NAFLD/NASH Care in America Survey

This 2022 State of Care Survey is the inaugural annual survey to understand the state of care for NAFLD/NASH as experienced by patients. It will establish a baseline to monitor year-to-year changes in disease management progress. For more information, see the full press release here.

We are launching an important program soon and I will need your support.

The patient community is very large, but a broad understanding of the challenges we face is lacking. There are 100 million of us with liver disease and stories to tell but most are only recognized in the late stages of the disease. We believe that is wrong but a first step is to have the data. We don't have a national benchmark or tracking system to understand the problem broadly or to know if it is getting better or worse. That harms us as patients.

The Fatty Liver Foundation is undertaking a patient focused survey to gather baseline data that many people can use to support advocacy and measure change that will be an annual study of the broad patient population. This note is just to let you know this is coming soon.

When you think about your experiences with healthcare are you pleased?

• Have you ever felt that the medical industry wasn't interested in you?
• Have you struggled with vague symptoms that were mostly ignored?
• Do you think your condition should have been recognized earlier?\

Recent news reports have announced the successful transplantation of pig kidneys and a heart into humans. Similar work is being done to use pig livers in humans. A number of members have asked me about this swine parts business so this will be a bit of background and my thoughts about the future for this strategy.

In my last newsletter I commented that I was proud that one of the things we do is help people die. Members who have followed me for a while got it but I made some newer folks uncomfortable so as a way to start the new year I thought a look at real life might be useful.

Before Rosemary and I created the Fatty Liver Foundation I never gave much thought to the non-profit community.  We always contributed a token to some big name organization with lots of slick ads and thought little more about it. Rosemary would respond to food banks and a few other local groups from time to time but I couldn't be bothered.

God appears to have a strange sense of humor as I find myself in this "old man" stage of my life running one of the newer small non-profit patient support groups and I often think about how little I cared for the less fortunate among us as a younger man. I don't think I lacked empathy but I just didn't know what life was like for those who fall into the darkness of chronic illness and then retreat from the tumult of "normal" life.

A lot of research is published but not a lot is sponsored by and performed by patients themselves.  We are pleased to announce that our SUNN Study (Screening for Undiagnosed NAFLD and NASH) report has been published and the paper is now live on PLOS ONE, an international, peer-reviewed, open-access, online science publication. You can read it by clicking the link below.

Screening for undiagnosed non-alcoholic fatty liver disease (NAFLD) and non-alcoholic steatohepatitis (NASH): a population-based risk factor assessment using vibration controlled transient elastography (VCTE)

There are two big conferences in the world for people who deal with liver disease.  EASL is in Europe in the spring and AASLD is in the US in the fall. This is where the latest research is released, where the cutting edge of knowledge about the disease is shared, and where the future of liver medicine can be glimpsed.  It is a time for the superstars of the field to strut their stuff and be recognized by their peers and it is a window into the best of today and a glimpse of what we as patients can look to in the future.

We will follow this note with a more useful review of information we hope will be useful to you as patients, but I wanted to share a general perspective of what I see happening broadly.

This is just an update. Almost no one actually watches these little closing bell ceremonies but they are a nice part of our historical record. It was interesting to be mentioned on the big screen on Times Square for a half an hour. Here is a link to the event announcing the NAFLD Screening Fund.

https://youtu.be/KHYXuHCN4g0?t=112

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.