National Hep C Advocacy Council,

[Deb_c430]

I saw this in another post, know nothing about it, but it looks interesting, we are always complaining no one hears us or sees us, this might be a postive step forward.

Hi there. I hear your frustration. Those of us who have been around for a decade or so, certainly can understand that. When I did my first treatment there was only a 10% chance of clearing and no PCR test available. They thought that if a person had normal ALT & AST they responded to treatment. What they know about treating hepatitis C has come a long way in the past 15 years. It's important to remember that treatment of hepatitis C is becoming very individualized. What works for one may not work for another. And there are lots of things to think about before deciding to treat.

And those of us who are active in advocacy work have been working on a national level. In fact the National Hepatitis C Advocacy Council, of which I am the secretary, has a bill in Congress with bi-partisan support. Perhaps we will have better luck pushing it along when we have a new administration. The bill can be seen here:

http://hepcnetwork.org/legislation.htm

So write to your legislators and ask them to support the bill. May 19th is World Hepatitis Awarness Day. Plan something for your town. Call the media and try to get a story in your local paper. There are many things a person can do.

Good luck with your treatment.

[Deb_c430]

I am not involved YET, I saw SusieQ post and I thought it was interesting.  So really she is the contact, I just truly believe we need to make our govt hear our voices.  

It is pretty comprehensive web site.

I am so sorry to hear what your husband has had to endure!  This is why I feel so strongly about doing things to make this all known!   There is so much information out there, so many charlalatons.  

We are trusting with our Docs, with  all the "new" approaches,  yet there are people out there who are only interested in ripping off the weak.

So I thank SusieQ for bring this to our attention,  For all of us, for my friends who endure this everyday, for folks like your husband who have already been through so much.

Call it riba rage or what ever you choose to, but  I have very strong feelings about trying to get help with this disease. Through the Proper Channels!  

Best of wishes

Let me know how your hubby is doing!   And to you for standing by him,   huge kudos!
I know it has been as hard for you!

Deb

[suz1222]

30 days ago my husband had a liver transplant due to hep C, they also ended up removing his pancreas. Unfortenately he is still in the hospital with complications. I am glad to hear that there is Advocacy Council out there. I commend you for being part of it and trying to make a difference. My husband had hep C for years and was told many years ago it would never bother him, (and I have many of the transplant survivors here at the Mayo Clinic Jacksonville say they were told the same thing.) From the onset of the first symtoms to the time of the transplant was one year.

I will definately try to get something in the newspaper in our area for May 19. Please give me ideas of what else I can do to help besides what I have read here.

[Deb_c430]

Yep I thought it was important, for people to see,    Very often we say no one knows we exist, Yet here is this.  

Continue to investigate and contact leg.

[Deb_c430]

Bumping this back up,   Think instead of trying to find easy fixes we need to work through govt and   people scientist and others who can fund a cure!