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My brain is split, I really hate that

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.

screening project poster


This was our first real opportunity to announce that Intercept has awarded us a grant to begin the first phase of our screening program aimed at finding people with liver disease before they have symptoms.  Here is a link to information about that plan.

All good.  Indeed, but coming back to the "real" world is kind of like a hangover.  The problem is that the drug trials that are required for treatments to be proven can't happen in the world as it exists today.  Even though liver disease is epidemic and threatens the lives of millions of people no one knows who they are.  The number of active patients who can be considered for participation in a clinical trial is tiny compared to the need.  So as someone who appreciates research I am so pleased, but as a patient I know that any treatment will be delayed by years because of the clinical trial problem. I try not to be angry about it though I fail at times.

The problem is that even though we know that there are millions of people who are slowly killing their livers, because it rarely has symptoms, we wait until it becomes a life threatening issue to act.  It is standard practice not to screen for liver disease even when we know statistically that someone is in danger.  When we didn't have the ability to screen that made sense, but now we do and that gets my goat.  It is what led to our championing of our screening program but we will need a lot of help to make a difference in any reasonable time frame.  Maybe we'll get it so stay tuned.

One quick example from the conference to show you just how bad it is.  Research has shown that up to 70% of people with type 2 diabetes have undiagnosed liver disease.  That is a shocking number since there are around 30 million of those folks. A company that does clinical trials reported that they had 35,000 patients in their database.  They asked how many had diabetes and it was 18,000. So how many also had a diagnosis of NASH.  What would you guess that number would be? Thousands surely given what we know of the disease. The answer 219. TWO HUNDRED NINETEEN!!!!! I knew it was a bad situation but that really depressed me.  That is the real world today.  A very large amount of disease cooking along and no effective outreach so no timely clinical trials and death by end stage liver disease. Interesting statistically unless you happen to get on the wrong side of the line.

Enough for now.  Split brain doesn't help.  I'm headed to Houston this week which is where we plan to put our pilot screening center so baby steps for now.  I'll let you know how it goes.