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.Read more
There are some benefits to being an advocate. Sometimes you get to be first. We just finished training and certifying our staff to do FibroScan tests. As part of that I got to be the first one tested. Getting to this point has been a long journey, about 9 months, so a birth of sorts though happily a painless one. Everyone shows off baby pictures, here is beauty for anyone who hasn't seen a FibroScan report. This is my new scan. Click on it if you'd like to see the full size view.
Although this note is about our screening project, it is also an opportunity to reinforce our view that with lifestyle changes it can be possible to improve liver health, even for a cirrhosis patient.Read more
I just returned from a conference called the NASH Summit. It is a gathering of about 200 of the top liver researchers and scientists in the world. Small but very much cutting edge. I must say that as a cirrhosis patient I am so encouraged, perhaps verging on rapture, at the progress being made to develop treatments for liver disease. (I'll get some guff for that kind of language but understand that as patients we know there is no medical help for us today)
I go to these meetings and I am always so encouraged by what I see there. This was the first conference where we have presented a poster of our progress which was fun. We usually are audience not part of the show. Here is a link if you would like to see it.
An ironic curse with the clear implication that 'uninteresting times', of peace and tranquillity, are more life-enhancing than interesting ones. Another cautionary message is 'be careful what you wish for', and yet another 'fools rush in where wise men never go'.
Cliche man is here apparently, but the old warnings aren't necessarily wrong. I want to let you know that the foundation has entered an 'interesting time'
We have been greatly honored with support and now it is time for us to stop talking and start dancing. Intercept Pharmaceuticals has agreed to provide the first funding for our screening program and we plan to open our first pilot facility in Houston in the summer. For those who have joined us recently, we advocate building 400 screening centers across the US and to screen 1 million people a year who are at risk for liver disease from the large co-morbid (people with multiple diseases) population.
When I think about screening for liver disease I often find that tune from My Fair Lady, "Why Can't A Woman Be More Like A Man" running through my mind.
It is an odd mental tick I suppose. One of my favorite musicals connecting to a potentially terminal illness, but the challenge we face as liver patients would largely vanish if only a liver was more like a breast.
OK, I stretch the analogy a bit here but consider how cancer is managed. We search diligently for cancer and while there are significant differences between cirrhosis and breast cancer the statistics are interesting. There are around 40,000 deaths annually from each disease, but we search out the tiniest incidence of breast cancer that we can find and manage it aggressively but we ignore liver disease until it presents serious symptoms. Think about that for just a moment. Why would we test breasts regularly but intentionally ignore early liver disease?
- Overview of the project
- The purpose is to develop the analysis of the operating funding needs for the Fatty Liver Screening Project
- The key value to industry participants is that a key goal of the project is to identify a large number of asymptomatic and undiagnosed patients who have fibrotic liver disease and have been educated about clinical trial participation.
Your relationship with your doctor is perhaps the most intimate human relationship beyond that of your family and those you love. It is one we hope that we can trust with our lives. We need to have and to trust that intimacy but does the system encourage that? Might the honestly held goals of your physician to protect you be overwhelmed by the bargains that society makes? I wonder what we should think if it is the official policy of the patient care system to avoid telling you of an advancing disease before you actually get sick?
Imagine for a moment that the man of the link below, is your physician, who may well be singing your life with his words.
That was a change of pace but expresses rather well the message in this article.
We live in a world where technology has sped past our ability to incorporate it in our society. Since the focus of the Foundation is liver disease I'll talk about that specifically but this is happening in multiple areas. Those of us who have been diagnosed with disease are engaged with the management of our problems and coping with our symptoms. But imagine if it was possible to know that your liver was being damaged before it made you sick. Suppose it was possible to avoid spending years in pain if you could get an early warning and avoid having a fatal disease. Would that be a good thing? Would a warning cause you to actually do something about it?
When I think about that I'm reminded of other early warning strategies like mammography and colonoscopy that are just routine, with the goal of keeping us healthy. These are evidence that we believe in wellness, except perhaps in the case of liver disease. You might be surprised to learn that 100 million of us have liver disease. Of course, "Only" 20 million have progressed to a point of some concern and only one million are in serious danger but don't yet have symptoms so why worry.
THE PROBLEM: We now have non-invasive tests that can identify people with fibrosis, but who have no symptoms, before they become ill. Good idea? Yes indeed. Is that what we do? Not so much. It is the official guideline not to screen for liver disease, even though we can. Instead, your physician is supposed to tell you to lose weight and send you on your way. That is killing you softly while waiting until you get sick so there will be symptoms to treat. Is this the kind of support you want to get?
This is a classical moral hazard. The people who you trust to keep you alive do not benefit from you staying well. Our system rewards others for your suffering so providing funding for wellness isn't really in the interest of the established organizations. As a business model, we pay for procedures not success which ultimately works to the disadvantage of society.
The central problem is that the issue is obesity. Our society has become fundamentally unhealthy and efforts to educate have had little success. We have a torrent of advertising about weight loss and experts of all kinds pushing products but it is largely a failure as we continue to get fatter as a society.
OK, a policy not to screen makes some sense, since people don't solve their obesity problem, even though their docs suggest it. Why spend money to screen people if nothing changes? That is valid, but is there a group that would benefit from early screening? The Foundation supports a screening program for diabetic and pre-diabetic patients as they are already engaged in dealing with health questions. The reason to start there is that recent studies have shown that up to 70% of type 2 diabetic patients have undiagnosed liver fibrosis. By starting a screening program with motivated people it can be built out and eventually support the entire at risk community.
The obvious question is, since a diabetic diet is similar to a liver friendly diet, what difference does it make? Most diabetic patients fail to lose the weight they need to in part because they rely on insulin to manage their blood sugar. This provides an easier path than relying on diet and exercise alone. A nice discussion of the diabetic problem is in this review from Harvard.
So what is different about a liver friendly diet and the standard diabetic diet? When you make things easy for the liver you automatically have made life easier for the pancreas. The difference between the two diets is that for the liver the Foundation concentrates on omega 9 as the primary dietary fat and seeks to manage the omega fatty acid ratio by lowering omega 6 and increasing omega 3. Beyond that the advice of being mostly plant based is very similar.
The message to avoid the co-morbidity associated with liver disease, when presented to a health conscious diabetic, has a better opportunity to take root than discussing just another diet plan. The report produced by the Fibroscan system that we propose to deploy is more motivating than a blood test and can catalyze needed behavioral changes.
If you are obese, diabetic, have concerns about your liver, have not been tested for Hepatitis C, or are a caregiver for someone with any of these concerns but don't have easy access to information or testing this program will be of interest to you. The target group is the 40 million or so co-morbid diabetes/NAFLD/NASH patients. Up to 70% of type 2 diabetics have undiagnosed liver disease. Liver fibrosis is about 4 times as likely to be fatal as is diabetes. This patient group is our initial target for screening.
Detail follows, but the goals of the project in broad terms are these:
- PHASE 1 CONCEPT MODEL
- Assume 15 temporary locations 50 weeks per year
- Over a two year cycle we expect to produce these results
- 16,000,000 individual contacts
- 165,000 Fibroscans performed
- 84,000 potential medical referrals
- 150,000 foundation members who opt in to receiving clinical trial info
- Build the system out in units of 15 to a total of 400.
The long term goal is to have 400 testing locations seeing 1,000,000 patients a year. Consider this summary of the risk of dying because of a few of these diseases. Note that fibrosis is about 7 times as likely to kill you as diabetes yet most fibrosis is undiagnosed.
If you really would like to find out if your liver is a concern you may be surprised to learn that it is the official policy of the medical standards of practice boards not to screen for liver disease. Unless you are already sick insurance probably won't pay for the test and even worse there aren't very many testing systems available. Currently the only economical tool for screening is Fibroscan but unless you are fortunate to live in the right place it may be hard to find one.
We are glad you asked!
The Fatty Liver Foundation has championed a nationwide program to provide liver screening services in cooperation with Intercept Pharmaceuticals and Echosens, the manufacturer of Fibroscan, to make it possible for people who have a concern for their liver health to get an inexpensive scan. Since insurance doesn't normally cover screening for people who aren't sick yet it will be on a private pay basis but as a nonprofit foundation we believe we can deliver the service at a price that is affordable.
You can help us build this system by becoming a member of the foundation and making a tax deductible gift.
If you have any doubts about whether you want this test even if you aren't sick, watch this video from Harvard Medical. Remember Fatty Liver disease can be managed if you start early. Waiting until you are sick usually means you will die young. There is no treatment once a liver reaches cirrhosis and it is common for that to happen without symptoms. If you are or have been obese you may be at risk. There are many liver diseases but fatty liver can be managed if caught early.