I need your help - what message should we, as patients, give to Congress about our real needs as liver disease victims?

[nash2]

The American Liver Foundation has asked me to be one of their delegates for what they call Hill Day. It is a day when we, as liver patients, go to Congress and meet with individual Congressmen to talk about the issues that our community faces. The ALF has a legislative agenda, such as supporting the HepC vaccine programs, which I will help with. However, I would like to know from this community what are the major issues you feel we face? If I get the chance I hope to be able to talk with them about more than the current legislative issues and to represent the needs that you see.

Just to start the conversation, I have two big issues that concern me.

1. I think it is a moral hazard that the policy of the medical community is not to screen for early liver problems. Too many learn they are in danger when they are told they have stage 4.

2. Our system is totally unfair to younger people who develop liver disease. The medical problem breaks them financially and grinds their entire families into poverty. Once a patient can no longer work and needs a lot of care their partner often pays the price and the system beggars too many with the outrageous prices for care.

So what are your concerns? I hope that many of you will take the time to comment. I will try to consolidate your views into something I can try to discuss with the lawmakers. I will report back to you how it goes.

It will be most helpful to me if you click on this link and comment in this thread but if you prefer to comment through some other method I will try to consolidate all sources. We don't, as patients, often get an opportunity to speak directly to lawmakers so I hope you support this effort.

Wayne

[Porphyriamaniac]

I'm not in America, I'm in the uk but I think there is a universal problem around fatty liver not being taken seriously enough in the first instance by gp/ family Dr, considering what it can potentially lead to if not treated or addressed properly. It seems to get dismissed as no big deal by most GP's.

[nash2 Partner in reply to Porphyriamaniac]

Hi Stacie

That is a giant problem for patients. It really is minimized and overlooked too often until it is basically a terminal condition. I really hate that and it is the main mission of the Fatty Liver Foundation to promote early screening of at risk but asymptomatic patients. It amazes me that it is the policy not to detect fibrosis early.

Thanks for your thoughts, it is a worldwide issue.

Wayne

[blairflair]

The first time i heard that i had a fatty liver problem was after i had a colonoscopy and the GI Dr mentioned NASH but gave me no information on how to treat it or no in depth information at all. I probably did not ask enough questions. He commented that i should lose some weight and that would help. Now i am looking for a Physician that specializes in liver problems. Physicians need to be proactive in getting information and treatment to patients with liver problems. This NASH2 site with Wayne has been a wealth of information and let's me know and understand symptoms I am having. Also the dietary info is very helpful. Thank you!