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
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.
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.
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!