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A little RnR: Rage n Ribarvirin, Zeroes, and Denials.

In late January I began my sixth treatment for hepatitis C, my viral load was around a hundred million and I understood that a speedy treatment was necessary. Because if my HCV ravages my new liver the way it did my old one, I’ll be back where I was a few years ago.

New Liver, New Round of Treatment

I’ve got to act fast. Because of my recent liver transplant we had to take some things into consideration. So I started on a half dose of Ribavirin because Ribavirin impacts red blood cell counts. Within two weeks, I was at the full six pills per day.

A picture of an empty Sovaldi bottle and empty Zepatier blister packs. Much to my dismay, the Zepatier came in blister packs. Good ol’ Sovaldi however came in its bottle, same as before.

The Riba rage doesn’t make me angry like it does other people, it just makes me quicker to be emotional in general. The photosensitivity and headaches came and went, but in the last three weeks of treatment they plagued me like no other. It would randomly remind me of other treatments in that when I woke up in the morning I’d be nailed to my bed. But Sovaldi always had one really annoying side effect for me… hair thinning. Every shower, more and more of my hair would cling, wet, to the back of my neck. The older interferon treatments had messed with my skin and teeth, I felt misshapen in a way.

But I think the stress of attempting a 12 week extension onto my treatment added to it. When you’ve taken as many treatments as I have, insurance companies are leery. Thankfully I was able to zero out at 8 weeks. The downside to the 8 week marker is that because I’m treatment experienced and to be sure the treatment works, I need to go for a 24 week regimen.

I was met with a snag. My insurance approved Ribavirin, a drug I’ve taken three times prior. But the heavy hitters Sovaldi and Zepatier? Denied.

I’m used to denials, but this felt different. We appealed it once more. But, It was denied again.
I began consulting friends and outside organizations like Legal Aid. I started talking directly with the pharma companies as we applied for the last appeal before my treatment meds ran out.

Out of Meds and Waiting

That’s where I am now. Presently I’m awaiting the word from my secondary insurance, if they’ll deny it outright like before, or if they’ll cover it. And from my primary insurance, soon I’ll find out the news if I’ll need to use the last level of appeals… one which has no expedited process and can take months.

I’m not entirely angry, I’m more disappointed in our priorities with these policies. I don’t see a point in wasting anger on pitiful things. Anger might make me lose sight of how to fight this.

There are always more options. To insure that I could afford the meds in case the worst should happen I even set up a GoFundMe. Friends and family contributed what they could and as  things stand I’ll probably have to rely on it. It’s nowhere near the full amount but that’s not what matters. With so many people in this fight with me, we’ll find a way. I’ll be talking with my doctors to discuss the safety of resuming treatment following however long this break in treatment lasts. This break in treatment isn’t so frightening, because thankfully there are amazing people within our hep C community that can provide us with answers and support.

We are never alone.

Fight. Because it’s worth fighting for.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.