Terminal illness is a fate that awaits us all. We know not the pathways of our personal journey only that we will take one of those paths in a time not of our choosing.
I live in the land of the chronically ill. It is that time between health and end stage disease. The Foundation's niche is fatty liver disease but chronic illnesses of many kinds are passengers on the same train.
I deal with the newly diagnosed who are frightened and confused. I scheme ways to hold the devil back with stalwart warriors who fight for life. I comfort those for whom the journey is too hard and who are dying a death of despair. I walk with people who are triumphant after they receive liver transplants. I see the length and breadth and depth of this disease and as a society I see that we manage it badly.
I'm very frustrated by the way our society deals with chronic disease. In a rational world we would be engaged and supportive of these diseases. The prospect of managing long and painful dying should motivate us personally, since it is the destiny most of us will face, and as a public health challenge it is crushing. We focus instead on the next shiny object.
The current grave concern is the #coronavirus. As an example of a danger in our highly mobile societies and an example of things we know will happen, it deserves attention and a genuine response. The early estimated death rate for Wuhan is 2%. For comparison
SARS was 10%,
MERS was 34%,
swine flu was 0.02%,
seasonal flu is 0.01%.
We have to be serious about Wuhan, but lets think about #NASH, nonalcoholic steatohepatitis, and cirrhosis, our common fatty liver diseases. About a million people have cirrhosis and many don't know it yet. Absent a liver transplant the death rate is about 100%.
Do you see daily headlines about the NASH problem? Has the CDC moved to save those lives. Are celebrities pleading for you to be safe and take care of each other? Not so much.
If you have the disease, are doctors rushing to care for you; are support systems moving in to see that your needs are taken care of; will you be able to have comorbid problems carefully managed; do you think medications and treatments will be available to you without destroying your family financially?
For the un-rich, chronic illness in America is too frequently a bed of sorrow. Examples of the disservice we see are voluminous but imagine that you are un-rich and even with insurance you have lost your home to medical bills. (This is more common than you probably realize) Then imagine a system that will treat you in the ICU for life threatening infections from broken teeth. Dental problems are common with liver disease, but the system won't pay to fix the teeth to prevent the infection. There are many examples of this kind of short term thinking in our current system.
We give lip service to "wellness" but our systems don't really believe in it. Short term revenue wins the race over long term prevention.
I do believe in capitalism but in the current spectacle of political campaigns spending billions and the amazing capture of great wealth by a small percentage of us, I find myself conflicted. I fear that we have not taught our generations to care at all for their fellow travelers. Our system makes possible the acquisition of vast wealth but for those who don't catch the magic ring the long difficult dying is too frequently the only path and one whose burden is shared only by their family.
Is there a point where another's death is more important than another yacht or a home in Tuscany? Is it fair for society to ask that the most fortunate become their brother's keeper? Does society face a moral hazard when it serves the common man poorly as we see with our current system? I'm increasingly frustrated as I see the disease moving steadily to younger age groups. We seek to add a tiny voice of reason to the debate but since we don't sell things being a nonprofit sucks as a business model. It is, however, vastly rewarding on a personal level.