Silent Epidemic: The Liver Disease NASH | Our Documentary Journey
by Anthony Villiotti
(Pittsburgh, PA, USA)
Documentary Back Story
This documentary is an outgrowth of my experience with nonalcoholic liver disease.
I was told in 2005 that I had a fatty liver. It didn't seem to be a big deal.
I was seeing my doctor on a regular basis for diabetes.
Occasionally he would mention the fatty liver condition but it remained low on my list of things to worry about.
Nine years later, in 2014, after some blood tests and an MRI he told me I had NASH (nonalcoholic steatohepatitis) and probably cirrhosis.
I had never heard of NASH and, while I had heard of cirrhosis, I always considered it to be a drinker's disease. Since I seldom drink
, I thought he had me mixed up with another patient. Unfortunately, that was not the case. Non-drinkers can get cirrhosis and I came to find out that it is a pretty frequent occurrence.
At that point I was referred to a liver specialist (hepatologist) and she confirmed the cirrhosis diagnosis.
My liver continued to deteriorate and in 2017 I was diagnosed with liver cancer.
At that point, I was placed on the liver transplant list and a year later received my transplant.My life had been saved by the transplant.
In talking with others and doing some research I discovered that I was the rule rather than the exception when it came to my knowledge of nonalcoholic liver disease.
Everyone associated cirrhosis with drinking. Further research disclosed that about 100 million Americans had a fatty liver and for 20-25% of them the condition advances to NASH.
So why hadn't anyone heard of this disease?
Documentary Idea Is Born
I felt I had an obligation to make people aware of the disease in hopes that they would not follow my path to a transplant.
My mission in life became making the public aware of this potentially life-threatening disease.
My first step was to form a non-profit (NASH kNOWledge www.nash-now.org) that would serve as the base from which I would undertake my mission.
We started developing educational materials that I wish had been available to me when I was first told I had a fatty liver.
As part of this exercise my wife and I thought we should record me talking about my experience. After all, people related better to a story than the cold recitation of facts.
Our idea was that we take our I-phones, record us talking about liver disease and then post the video on You Tube.
After thinking about it, we thought maybe we should talk to someone who knew something about film projects.
By happenstance, a member of our church owned a company that was involved with video production. We met with and described our project. He thought the subject matter was great and that is would be a service to the general public if we produced a documentary on the subject. He explained to us the steps that would be required and said he would develop an estimate of the cost.
So we wrote our story and provided it to a producer he had recommended.
The video producer then told us it would cost about $100,000 to produce an hour-long high quality documentary. We had nowhere near that kind of money so we set out to try to find the funding.
We approached local hospital systems thinking that they would have an interest in our story and would be concerned about this silent epidemic.
Most of the systems didn't even answer our inquiries, so the documentary seemed like it not advance past the idea stage.
Then our fortunes took an uptick.
My wife had dinner with the widow of my life-long best friend. In updating each other my wife mentioned that we were trying to produce the documentary but were having little success in getting the funding.
A week later our friend said she would donate $40,000 to us. This was a complete shocker.
We approached the video producer and told them we could only afford to spend $30,000 on the documentary and asked whether he could produce a product with that as the cap and, if not, whether there any other producers he would recommend. He came back and said he would do it for $30,000 but it would only be a half-hour and that we would have to change producers. So we went ahead with the project.
We had an introductory meeting in January 2018 and completed production in May 2018.
We showed the completed product to an invited audience in June 2018.
Subsequently it was shown on our local PBS station in Pittsburgh and also on Maryland Public Television.
We want to get a broader audience for this documentary, though, as we think the message of the danger of nonalcoholic liver disease needs to spread to the broadest possible audience.
We are not looking to make money from the documentary, just to spread the word.
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