I finally read through this. Very well written and informative. I must say, this statement was very real, very much a part of what's going on now with it being so difficult to get approval of S&O: "For example, payers may be reluctant to allow for payment for both simeprevir and sofosbuvir based on the COSMOS trial when IFN-free regimens, offering similar safety and efficacy data, are under consideration for FDA approval in the near future."

All I know is that my "window" for waiting was closing fast. I needed to treat NOW - my doctor was certain of that. And I was lucky - my lucky stars keep shining. I am so grateful I had this opportunity, paid for almost entirely by my insurance. For those who are what my situation was, who are playing with fire to wait, even six months to a year, I'm just sad for them.

This country has got to do better - healthcare is a mess - IMHO.

got twisted up in my own verbosity - meant, "For those who are IN what my situation was...." too wordy anyway - what kind of garbled grammar is that - probably no one noticed. :)

My doctor will not prescribe off label. But I don't feel like I am playing with fire. I have had this disease for many years and manage to have a full life even with stage 4 cirrhosis. Please don't feel sad for me. That does not help my situation.

@Tulsa Gal, my doc won't prescribe it either. You will be doing the new meds Sovaldi/Ledispavir when approved?

@Cat. You are doing great & are going to be done in a few wks. Data from those of you getting off-label now is what a lot of the HCV community is waiting for. Ironic that by the time the SVR 24 data is in the FDA approval of S&L will be here. Be well & let's add your SVR stats to the Cosmos study!

In addition to being an exciting time in the advancement of HCV tx options it is also a confusing time for providers, payers & patients. Getting the right tx to the right people at the right time. To totally understand & tx everyone living with this disease there will be more specific targeting & off-label drugs won't go away but they won't become the norm ... at least not until add'l info is avail. I feel fortunate to have been able to receive the best healthcare anywhere in the World & yet still waiting for retreatment in about 4 mo. Right now I see docs prescribing "step" therapy where most patients have to try an older combo, primarily with Solvadi now, before getting the more expensive off-label. A lot of tx nave as well as tx experienced peeps doing IFN/riba/Sol for 12 wks & kicking dragon arse on it. Others doing Sol/riba & beating it back as well. I haven't come across a Solvadi based tx failure or anyone pulled off it posting yet. Very different from the old regimes. Yay!

Thank you Allabout. I appreciate all of the information that you provide. I have no choice but to wait for the new treatments. They will come soon and for that I am thankful.

I do want to step on my soap box for a minute and state that I find it insensitive for others who are fortunate enough to be on these newest treatments to make negative comments towards those of us who are not on them. That is not supportive and is quite hurtful.

I am stepping down now and wish everyone the best in these exciting times of HCV eradication.

We all want to be treated as soon as possible but sometimes the stars just don't line up; the right drugs, the finances, other personal and health issues.
That being said, for those that aren't in a position to start, even with cirrhosis, there is time. People with cirrhosis and HCV can live for 10 years before decompensation sets in.
I wish everyone waiting that your turn comes very soon!

WOW..

Tulsa, if it was me you are talking about, I apologize.

Tulsa - oh, I just saw your comment and I apologize again. It was me. I meant no harm or disrespect. Some people though are needing tx now - they are very sick. I guess "playing with fire" was not a good term to use, and neither was the word "sad." I only meant that I wish everyone who needs tx could get it. I don't know what else to say except okay, I will not feel sad for you.

Don't know what else to say. Feel like I'm walking on eggshells and have an idea what's going on.

Peace.

No harm done. All is good.

Thanks, Tulsa -- and thank you love.

I do realize how very fortunate I am that I have these meds, approved by insurance. And I know it can be frustrating for those still waiting. Sovaldi/Ledipasvir WILL be out soon, and I pray that insurance will cover everyone - I also hope that everyone HAS insurance!

My choice of words was less than optimal, Tulsa. I can see how you took it that way.

All good.

I meant "havhope" - was thinking about LoveEachOther.