Mental Anguish and Time Lost from One of the Lucky Ones
I first learned I had HCV in January 2015. I have probably had it for 36 years. It was only detected by chance after I began to be very tired and sensitive to alcohol.
My specialist advised me not to worry because it is quite curable with the latest DAAs. After a few tests, he told me I was very lucky because I had very little liver damage (F0 or F1). And this, despite a healthy appetite for beer and wine. Great! So it will be easy to treat, I asked? No, you are not sick enough for a treatment, he tells me.
... Oh, I see. Well, I think I see...
Since then, I reckon I have spent about three hours a day for the last 10 months learning about the disease, trying to work out if it is really safe to just wait, and trying to figure out how to obtain a cure. I work as a government researcher, and since my working hours are flexible, almost all of that time was time spent NOT doing my real job, but still getting paid for it.
Here is how I wasted my employer's time:
* learning about Hepatitis C,
* learning about treatments for Hepatitis C,
* reading about how different country's national health systems pay for HVC treatments,
* learning about the astronomical prices being charged by the pharmaceutical companies,
* learning a new meaning of the phrase "ware-housing",
* learning how in nearly every "advanced" country treatment is prioritised to F3 or F4 (which is entirely fair, given the prices, but how the heck do the pharmaceutical companies get away with it in the first place? how do governments *let* them get away with it in the first place?),
* reading dozens of horror stories about people who are denied treatment because they are not sick enough (if anyone ever calls this "ware-housing" again I will punch their lights out),
* scouring HCV patient support group web sites (hmmm, are they ALL funded by Big Pharma?),
* learning about drug patents,
* learning which countries have signed patent agreements with Gilead (hmmm, surely patents with Markush diagrams (i.e. chemical wildcards) can't be allowed?),
* learning which countries have NOT signed patent agreements with Gilead (hat's off to the Indian patent office!),
* learning about all the countries and organisations who are challenging Gilead's patents,
* learning about "voluntary licences",
* trying to work out if there might be a gastro-specialist in my country who will write a script for me (no hope so far),
* trying to work out how to nudge my next fibroscan results up a notch or two (no, no! don't even think about it!),
* trying to find out if a doctor's script in country A will be accepted in country B,
* trying to find out if manufacturer X in country Y will ship to country Z,
* starting to understand the evil consequences of "voluntary licences",
* learning about "compulsory licences" (there is still hope),
* trying to work out how long it might take to visit India and get a treatment there (shit, is it really true/allowed/enforceable to require doctors and pharmacies to provide Gilead with the names and addresses of patients being prescribed their product?),
* trying to figure out if I ever successfully obtain medication in India, will I be able to bring it back home or will I be breaking the law,
... And so it goes on... so many angles, so many what-ifs to think about.
... And then one day I found the FixHepC web site.
What a relief! There is still some sanity in this world. There is still hope. There is even a doctor on the opposite side of this planet who will see me on Skype, explain the options, write a prescription, and point me to a Buyers Club who will help me obtain the treatment. Finally, it is all so simple, so easy. Isn't this how every doctor-patient relationship should be?
* Trouble is, it seems like THERE IS CURRENTLY ONE DOCTOR FOR 150,000,000 PATIENTS?
But really,... I am actually very lucky because I am only F0/F1. I only went through ten months of fear and uncertainty. I only occasionally have mild fatigue, dizziness and forgetfulness that I could never explain before. I only occasionally feel stupid in meetings because my brain locks up. I only wasted three months of my employer's time. But no-one will notice the lost productivity. So why should I feel guilty about that? The chances of passing HCV disease to my partner or her family are really quite small, so why should I worry about that?
So really, ... I am one of the lucky ones. My story amounts to almost nothing compared to the shit that so many other people have to go through...
