With my last trip to the hospital I wasn't really sure how quickly I'd be able to start up my fifth treatment.Interestingly, the time I've waited for my jaundice to subside, and my bilirubin and INR to return to a stable level, was about the time required to approve me for the new treatment.
That's insanely quick. To help with some perspective these are my previous wait times for treatment: Number 1: Three months for healthcare approval, RX deliveries, and prep, after the treatment had been out for two years. Number 2: Three months for healthcare approval, RX deliveries after the treatment had been out for near four years. Number 3: Six months(technically eight months because of the denials/appeals) for healthcare approval, RX deliveries, and prep, after the treatment had been out nearly two years.
Number 4: Seven months for healthcare approval, RX deliveries, and prep( as well as transplant tests) as the treatment had been out for two weeks. (but each aspect had received FDA approval nine months and about a year prior)
Number 5: About a month for healthcare approval, RX deliveries, as the treatment had been out for about a month.
I'm very lucky to have an amazing GI, Transplant Doc, Advocates, and nursing teams in general.
I also want to be clear: none of this would have been this fast without the healthcare reform that has taken place in the last two years. In just what I've explained above, know that my first three treatments were through healthcare from the companies I worked for, while the last two, hail from healthcare through Covered California. This blog isn't about politics, and I'm not about to shift in that direction, this blog is about my journey through treatment. I simply wish to extend my thanks to those who have helped bring me here.
Oh yea! I mean, I guess I already said it and kinda ruined the big surprise...but yes! I have been approved for Harvoni and I will start next week. Harvoni is the lovely new treatment recently approved belonging to Gilead, the makers of Sovaldi.
I've had a handful of questions from people regarding the new treatment, so let's go through some FAQ!
Harvoni is a two in one pill, it's a similar to a combination of the treatment I was just on.
But won't that just produce the same result?
No! There are differences in the medication, the two drugs are made in synthesis to work with one another in a single dose.... It's like oil and vinegar, when they're poured in the correct balance they produce a lovely taste, but if the balance is off it doesn't have the same effect. (Technically Ledipasvir and Simeprevir target different nonstructural proteins, Simeprevir targets NS3 and NS4A while Ledipasvir targets NS5A, but at this point we're talking grades of vinegar in terms of comparison.)
Isn't Harvoni really expensive?
Yes, and no. As a single pill, it's very expensive, but it costs less than both Sovaldi and Olysio combine. A really big part of understanding the cost breakdowns of these new treatments is what are they relative to each treatment as a whole, and how they can be administered. Connie M. Welch did a great breakdown of this on her blog.
How long will you be on it?
I'll be on it for 24 weeks, provided my liver doesn't decompensate during that time. Average treatment is to range 8-24 weeks, depending upon a whole host of factors.
How did you get it so fast, didn't it just come out?
Yes, it came out in October, and there are a few factors in my favor. The first is that my doctors submitted the approval forms as soon as they were able to. The second is that I've already failed the predecessor( also having just done the requisite tests). And the third, while I have a horribly cirrhotic and nearly useless husk of a liver I'm otherwise healthy and young. What are the side effects?
Seeing that my liver isn't in great condition, It's roughly the same as before, photo-sensitivity, headaches, fatigue, nausea, dry skin. One of the more unforeseen things is the interactions with my diuretics, so that is sure to be interesting. Needless to say I'm very excited to start up the new treatment.
This interim month in yellow has helped me put things in perspective and come to terms with my internal conflicts. Reflection after a tragedy is important, I have a much better understanding of a more personal sadness than I ever thought I may encounter. I can't be kept down, be silenced by my own self, so I shall view myself accordingly. After all, The difference between re-silence and resilience is how you see the I inside resilience. I should be finishing up my treatment during Hepatitis Awareness Month, on May 7th.