Day 7, one week into treatment:
This morning after finishing my coffee, I headed to the medicine cabinet with a glass of water and took the seventh of eighty four pills. I will take one pill each day for the next seventy seven days. As I looked at the pill in my hand, I reflected on the fact that a branded pill chemically identical to this one is $1,100 here in the US. The single pill in my hand containing the very same lifesaving medications, vetted, lab tested, sourced from a top pharmaceutical manufacturer in India, through the REDEMPTION 3 Trials, was $19.
I thought about that for a moment. This entire course of lifesaving treatment costs pharmaceutical companies about $100 to make. The entire course of treatment had cost me US $1,600 ( US $19.04 per tablet). The math is simple. I paid 16 times the production cost for my treatment, a handsome figure of 1,600% over cost that would allow any manufacturer, wholesaler, and retailer along the supply chain to defray advertising, marketing, and distribution costs, and still make healthy margins, and deliver lifesaving medications at reasonable value to the customer.
What then makes $1,100, an eleven thousand percent markup, for the same medications delivered in a similarly sized pill, a “good value”? Nothing. Because at $1,100 per pill (for) me the medication might as well be on Pluto, or the other side of the moon.
There is no way I could possibly pay that price for a course of treatment from my own pocket, and my insurance company would not provide it to me until I was at deaths door – so effectively, for me it was unobtainable. Until I found Dr. Freeman, and through him the Redemption 3 trials, I was fucked, plain and simple.
So every morning since beginning treatment, I look at that pill with a sense of wonder that this is even possible, and with that feeling is a sense of gratitude, because how fortunate am I? Fortunate beyond words.
After waiting a year to see a specialist, and being denied treatment – I got scared. Really scared. They were going to give me something cheaper. Something that damages the liver during treatment, and that was ‘OK’ with them. Because at F3 (which is actually pretty bad), I still had enough healthy tissue to sustain some damage. And If that treatment had not worked, or maybe even if it had, I would have advanced to F4 and then Cirrhosis, at which point I would qualify for ‘the good stuff, the Rolls Royce treatment, which here in the US, only the wealthiest, and the sickest have any hope of receiving.
Scared came just after shocked, and disappointed. After that, I got angry, and anger let to action. I scoured Hep C forums for information, and saw some discussion of generics. Most of the information I found initially was useless, because it simply funneled me back into the Cirrhosis queue, but eventually I found Dr Freeman, and Fix Hep C, and Gregg Jeffrey’s blog, and Mike Galbraith’s email address,
Then it was down to choices, and that was frankly excruciating. Reaching out required me to go far outside of my comfort zone, my safe space, and take a chance on leveling with and relying upon strangers, people I didn’t know, and had no experience with.
I had hidden the presence of this disease since diagnosis, except at the very beginning, when I learned my friends would reflexively recoil and treat me like a leper. After that, I told no one. Those I had told, were led to believe that the awful interferon therapy had been successful. Its terrible to have to live a lie like that, but I had a family, a business, and friends, people that I loved – and I could not bear the thought, or stigma of living forever more as an ‘untouchable’. I had learned the hard way that when people know, they stop seeing you as a complete human being. You instantly become something else. Something less. There is always that unspoken distance, an unseen barrier. That is the loneliest feeling I have ever experienced – and it is not one I wanted ever to experience again.
But I reached out, first to Dr. Freeman who was unbelievably caring and present, and who answered all of my questions, and then to Mike Galbraith, who shared his experience with me, and who’s confidence, and recovery inspired me to move forward. That is how I came here.
Seven days in, I am experiencing some of the typical side effects one learns are associated with Sof/Led DAA treatment. The physical stuff (mild occasional headache, initial fatigue, brain fog, mild insomnia) is a cake walk compared to the chemo-like effects of Interferon. What was surprising, and unexpected was the eruption of emotion I experienced about three days in. I can only describe it as a kaleidoscopic emotional mix of everything imaginable, with an overlay of sullen irritability, which I tried to, but didn’t quite manage to keep to myself. Whether the emotional stuff is a side effect of the medication, or simply a decompression of long suppressed feelings of anger, anxiety, etc., I don’t know. Things have settled down though, and I’m grateful for that.
Physically, I’m feeling better. Not dramatically better, just… better. My eyes seem to be clearer, and a couple of odd patches on my skin are clearing as well.
Two week labs (bloods) will be drawn in seven or eight days. I used to dread blood tests, because there was never much good news. Whatever news is forthcoming, I will share in this thread.
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hmy: Why is that toilet seat not CLOSED!!!!
said, “It’s your (my) life on the line!”
