I’m excited to see how new medications help people around the world with cure rates for most new treatments around 90+% . And more treatments which use Protease and Polymerase inhibitors ( like Harvoni, V-Pak, Sovaldi, etc..) on their way.
So what happens when you’re not part of the 90+%?
When you’ve spent years of your life becoming familiar with health insurance, FDA studies, and in hospitals/clinics. When you grow up memorizing hallways, bizarre wallpaper, medical pamphlets and illustrated guides, all of this seems pretty normal.
I’ve pressed on past each failure, and usually each time they’ve found a more specific reason why it didn’t work.
I have failed five different treatments including Sovaldi Olysio and Harvoni, and recently I found out why.
I have (three) mutations which combine to prevent protease inhibitors from working properly.
Originally I was under the impression that I had the q80k polymorphism (it’s a weird mutation that can prevent protease inhibitors from working without a combo of meds) which is accurate, but not the cause. Newer tests were able to pinpoint why Harvoni did not work for me.
While failing one protease inhibitor does not mean another may fail, it does reduce the chance of success significantly.
The combination of mutations I have prevents Ledipasvir ( the NS5A part of Harvoni) and most protease inhibitors NS3 Â± NS5A from working as intended.
some common NS3/4a inhibitors are Olysio/Simeprevir, while NS5A Daclatasvir, Ledipasvir, etc...
So what happens now?
Nothing. Now that I know which drugs I cannot take, it means searching the web for any potential studies which are for Treatment experienced, f4 decompensated patients who cannot take protease inhibitors.
Why I say nothing, is because that’s presently what I’ve found. I’m certain that at some point they’ll find a new way to attack the virus but until then my life waits.
I’m uncertain how long I’ll live. Depending on my luck, I could have a few years still until transplant.
Transplant is an extension, the likelihood that my liver will decompensate within a year is about 50%, as I will re-infect it. I could push a few more years past that, but it’s hard to say. The data is also confusing, because the potential for a sample size for my age range is so low.
To say that this isn’t depressing would be absurd.
When a chilling reality like this hits i accept it, i embrace it, i understand it, and i forget it.
I accept that my health outlook is grim and will ultimately defeat me.
I embrace the problem and refuse to define myself by it.
I understand the precautions and limitations I face are guidelines, not rules (but seriously though, some are still rules).
I forget it, because the focus isn’t on it, my focus is on me.
To move forward i must turn inward and find small bits of motivation to press on.
Energy and persistence conquer all things.
also I cannot stress this enough: If you find out you have Hep C, know your genotype (and if you can, mutations) It can help make sure you take the right treatment.