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.
The purpose of this study was in response to the standard guidance used by doctors in the management of asymptomatic liver disease associated with fatty liver disease (NAFL) as nonalcoholic fatty liver disease (NAFLD) and the more serious nonalcoholic steatohepatitis (NASH).
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 diagnose it. It is standard practice not to screen for liver disease even when we know statistically that someone is at risk. When we didn't have the ability to screen, that made some sense, but now we do and that gets my goat.
As just one perspective on the problem, 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 were 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 that we know the disease is common with diabetes.
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, no drug therapy, and death by end stage liver disease. It is interesting statistically unless you happen to get on the wrong side of the line. Note in the chart below that it is also a leading killer of people supposedly in their prime of life. That should be a warning to all the under 40 crowd.
The Fatty Liver Foundation has launched 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). The SUNN Study was the pilot for that effort. The next step is SUNN-2 with a goal of screening 20,000 people
If you would like more information click the image below.
This fund will provide a mechanism for public and private funders to join together in common cause with the patient community. By joining together we can work with local communities in finding ways to engage this threat at the only truly effective level, that of the patient within the life that they lead and the reality of their community.
