I know what it is to be unwell, but I need you to think about this result from our State of Care Survey. Only 16% of you reported feeling like you got enough information from your doctors.
We need you to participate. I see pleas all the time in the patient forums for information. Many of you are seeking help but do you participate in efforts to improve things?
Not so much.
Think about this for a minute. Nothing gets better if no one tries to make it better. That survey went out to about 20,000 liver patients. Only 713 bothered to answer. And who were they do you suppose? Over 70% were educated white women. Now, I have nothing against educated white women, but when I talk to people who make decisions about care or who put up the money to do things and they ask me who we represent it really sucks to have to tell them that the people who seem to care are mostly educated white women.
I know the rest of you are out there. I see men begging for information. I see every race hoping to find relief so I have to wonder why you don't help?
We will soon be publishing the 2023 version of this annual survey. I'm hoping the community will be more interested in helping this year.
My fear is that the only people who will read this are educated white women. If that is you, we are glad to have your support and maybe you could encourage some of the other patients you know to engage a little bit. We all know that the only people who get anything are those who ask, or for those of us who are dying maybe we demand, but sitting alone and just feeling bad doesn't help.
If you would like to revisit the report, here is a link to it. Click the picture.
Thank you for your support. Also please forward this to anyone you know who might be interested.