With drugs coming soon, I REALLY NEED YOUR HELP!!!!!!
In the 2022 survey only about 10% of the patients contacted bothered to help. We need to do better. Here are links.
OK Wayne, now pay attention, I get all kinds of ads and surveys and just plain crap. Why should I pay any attention to this one? You are a sweet guy but I am tired and don't want the aggravation.
Yeah, I get that. junk email sucks the joy out of much of my day. I can't fix that but some things can matter. We are trying to be one of those and need your support.
Oh I know you mean well. I know you are a patient yourself but what difference can it make?
Honestly, if only a few of us care enough to take the survey it won't make any difference at all. We all know that for many of us medical care isn't what it should be. They won't listen to me, but if we, as a patient group, speak that means something.
Stay with me for a few minutes and I'll explain one important problem.
Too many in the medical community are victims of the dreaded DUNNING-KRUGER syndrome. We need to help them but it takes all of our voices to make a difference.
When a person overestimates what they know about something it is known as a Dunning-Kruger. We see examples all the time. The doc who says your liver is fine, you are too young or too thin or your enzymes are too low. It is the quick dismissal of our concerns based upon very limited information but delivered with the certainty of an expert. The peak of the Dunning-Kruger is fondly known as Mt. Stupid and it particularly affects professionals who know a lot about something but over estimate the value of that for other questions when wearing their expert hat, or in this case their stethoscope.
To be fair, most physicians are taught very little about liver disease in med school and the standard view is that liver fat is not a problem. That is true, until it isn't, and by giving us the Dunning-Kruger, far too many patients are learning about their disease as advanced fibrosis.
Our survey is an annual snapshot of the experiences that patients have. The goal is to gather data to help educate everyone and to document the progress over time, particularly as useful drugs become available.
This is an important year to document. There are two potential therapies coming before FDA this year. Obetacholic acid from Intercept is scheduled for a hearing in June and Resmetirom from Madrigal is expected to be submitted for a hearing by FDA in coming weeks which would bring them up for possible approval later this year.
If patient care is important to you, you need to take 20 minutes and participate in our efforts to get better treatment for liver patients.