hepcat, I'm quite certain bago is on 12 weeks ifn/riba/7977. I think she was originally going to do the trial you linked to but for some reason it didn't pan out. I don't remember the story; my mind's like a sieve these days.

http://www.dailystrength.org/c/Hepatitis_C/forum/14525735-new-cure-no-more-interferon/page-2

Post #17

Thanks for the update on Bago you guys! I'm glad she's moving right along with her trial. That's what I get for not checking in more often these days.... I miss a lot!.

Love to all,
Kelly

I was in the clinical trials back when you took Inf shots 3 times a week + riba (and relapsed). But I know I was so eager to be cured I didn't spend any time being analytical and considering these paragraphs from the Kansas City newspaper article

Often there is very limited safety data available going into the kind of clinical trial the Starkeys joined, Carome said.

And the interests of patients may not come first.

Too many people go in thinking, (A clinical trial) is going to benefit me. Most people have that misconception.

But theres a difference between treatment and research. The primary goal of research isnt to benefit the individual but to advance the science. You are subordinate to research needs.

But patients can be desperate. They may have run out of treatment options or money.

As I'm often stupidly said, we all take non-trial drugs that have no long term studies, and I wonder if my head will fall off in 5 years from my 30 weeks of Victrelis. I took Vioxx for years for arthritis (and it worked better than any other drug I ever took), but it killed people

Drugs, during trials or when in general release, are risky business

But so is disease, so individually we need to determine the risk of the disease versus the risk of the drugs.

joe

Joe, that's such a good point.

Vioxx was FDA approved. Then they discover it kills folks? So how are we to know which drugs won't harm us years to come? You made a very good point. Just because Victrelis & Telaprevir are FDA approved might mean very little in the end.

We have the disease. We know what it does to the body. It's a personal decision to live with it or not. But most folks who have had HCV for 20 or 30 years know, time does take its toll. Yeah, it's a slow moving disease. But we're now at the point where cirrhosis & liver cancer are very real threats.

Thanks for sharing your thoughts.