About Me

My photo
Peginterferon-Ribavirin, Failed it twice. Incivek, Failed it. Sovaldi Olysio, failed it. Harvoni, failed it... Transplant Patient Zepatier and Sovaldi...we'll find out!

Monday, August 31, 2015

Caveat Emptor

It's almost as American as it is Roman. "Let the buyer beware."

In the US we advocate this a strange notion of preparation. So when it comes to healthcare, we've put ourselves in an awkward position.

I came across some inspiration from imgur 

Roamin' Phrases.
Welcome to the United States of America, land of the free, home of the brave.

Laws pay me no mind, I'm a freelancer in the cracks and crags, live with the hacks and hags of society.

The idea and principle that I navigate the labyrinth under the legalities means that I am temporarily live on the outskirts of the law.

I'd love to be protected, but the shield costs money I don't have. Tickets as if I'm going somewhere from different states, different counties.

Last notice! Papers pile high, on the table, gladly pay it all if I were able.

What's the law to those in the labyrinth? Here we chase freedom in hopes of scraps that fall from societies favor and become available to us.

In here, you watch your step, there's emergency care but you'd better have insurance. Make all checks payable to the feet that blot out the sun.

Insurance agencies at every corner down here, the world knows the labyrinth exists. Tens of millions live in it, they'd be blind to ignore it. Each agency employs us, telling us what to do and how to live if we want their pittance.

Money is free speech, money can travel the world to exotic accounts in the Caribbean, or the Alps.

Money holds thousands of insurance employees hostage as it demands more vacation hours.

Bills, from sneezes, lawsuits from companies claiming ownership of the breeze down here.

They already own all the hot air.
So we run after false profits, don't run in the labyrinth, you'll trip. A broken ankle will cost you an arm and a leg. "But I've got insurance" I told them. Apparently my network only extends to one doctor 30 miles away, my cell phone has better coverage.

But it needs to, it's got ads to sell me, and apps to sell me. Already paid for the hospital when it was built, that was for the pre-release, who knew there'd be hundreds of day one DLC?*

It's dark here, I wish we were outsiders, I wish we're the outliers.

Lines of string litter the floor, looking for the exit, ridiculous you can climb out anytime. These walls aren't that high.

Climb over the bodies that make up the surface, these walls are made by those before us.
The last of someone's sweat, blood, straw build the bricks of tomorrow.

Up there, the sun shines on monuments dedicated to the austerity of the posterior. A history that never was, made of legends men told to justify their lordship.

The labyrinth is the foundation of their pomp society. Seeds of knowledge drop from trees too large to cut down. The library's branches spread ever outward. Knowledge of my nudity does not protect me from the cold.

Awakened from my slumber by a solitary beep.
The IV is out of fluid, it's the second time this week.
More concerned about coverage of my cell network
Litigiously inspected every goddamn perk.
No mind, insurance, nine to five times as much.
Didn't realize my car would cost less than a crutch.
Didn't know it's Kaiser's face on the hundred thousand bill.
But when I first saw the thing, I passed out from the thrill.
Labyrinth obscure me as a number on a sheet.
Thirtieth time, in debt, someone will die this week.
Worked hard all my life, to move up someday.
The maze; a debtor's prison, as there's hell to pay.
This is my last straw, they'll be bricks no more.
It's time to be unburdened by Caveat Emptor.

*Pre-release or pre-purchasing in the video games industry refers to paying for the game before it comes out. Day One DLC refers to Downloadable Content which is available at an extra cost when the game is released. Day One DLC can consist of expansions to game-play, or can be what was prior-to-release assumed to be part of the content of the program itself. It's basically a really complicated Bait and Switch.

Wednesday, August 19, 2015

Inertia and Inhibitors

In the last year a great deal has changed for patients with Hep C. Multiple treatment options with minimal symptoms which take half as long or even less, a renewed focus on testing, and a healthcare overhaul have all been at the forefront.

We're also seeing a trend of high cost medication, with a round of treatment costing twice as much as the poverty rate for a family of four.

Medicaid clamped down to only approve the sickest of patients, many states requiring permanent liver damage before treatment can be an option.
States will begin to get better pricing when election season is done, but depending upon how the TPP goes, it could be better or worse.

Private insurers have similar policies, taking advantage of the discounts offered to patients and often denying coverage.

Cure rates for most treatments remain 90+% and more treatments which use Protease and Polymerase inhibitors are on their way. (Protease and Polymerase are two different approaches in destroying the virus, they combine to be far more effective than alone/with Ribavirin)
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, 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 was an accurate assumption until better tests were able to pinpoint why Harvoni did not work.

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 protease part of Harvoni) and most NS3/4a inhibitors from working as intended.

NS3/4a inhibitors = protease inhibitors= Olysio/Simeprevir, 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.

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 get me moving.

An object in motion will stay in motion.