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.

Just the facts i guess

I was inspired to write this from a quote in a fellow advocate's blog.


It was a quote from the CDC, and not surprisingly...it doesn't make sense if read it more thoroughly.

"While anyone can get Hepatitis C, more than 75% of adults infected are baby boomers, people born from 1945 through 1965.....The reason that baby boomers have high rates of Hepatitis C is not completely understood. Most boomers are believed to have become infected in the 1970s and 1980s when rates of Hepatitis C were the highest. Since people with Hepatitis C can live for decades without symptoms, many baby boomers are unknowingly living with an infection they got many years ago.

 Hepatitis C is primarily spread through contact with blood from an infected person. Many baby boomers could have gotten infected from contaminated blood and blood products before widespread screening of the blood supply in 1992 and universal precautions were adopted. Others may have become infected from injecting drugs, even if only once in the past. Still, many baby boomers do not know how or when they were infected. "


The CDC needs to focus more on facts and less on speculative analysis. What I've underlined is what caught my eye as peculiar....

Because.. turns out Hepatitis C (HCV) wasn't ID'd until 1989.

Until then Non-A Non-B Hepatitis grouped a lot of patients together in a category they'd soon find to be far smaller when the types were made more clear. The only logic that the CDC could possibly follow would be to assume that every boomer who re-tested positive for HCV is only the tip of a then shrinking iceberg  so to speak.

Even with the boomer population slowly shrinking, the logic is still far from well formed.

With a little bit of understanding of demographics it's easy to see why baby-boomers are the largest group affected.

First reason: It's the biggest generation. Literally. (This website's kinda cool you can watch as generations impact population.)

While Millennials will outnumber boomers come 2020, Boomers have two advantages when it comes to determining diagnoses. Boomers have had more opportunities to be tested, and (if they have it) they've a higher probability of having lived with the virus for a while, so they have a higher likelihood of potential liver disease symptoms.

But it's more complex, even those numbers couldn't reach 75% of those who have it, so what else goes into that dramatic ratio?

Drugs.
Every generation has their drugs,  Millennials favor pills to injections, GenXers saw an influx of cocaine. And by the time they became adults cocaine was much more accessible.

And Boomers...love drugs, just like really love drugs.

At 21-39 Boomers had around a 30% participation rate, while Xers at the same age hit around 23%. A 7% difference is huge,  considering two more factors:
-Boomers are a much larger population, and
-"Controlled substances" didn't become a legal thing until the 70s.
Which means cannabis was not wholly part of that 30% for boomers, but it was when Xers answered the same question a few decades later.

RXs didn't become a major player in controlled substances until the 80's, which means Xers and Millennials had less exposure to HCV positive IDUs (Injection Drug Users).

Boomers also didn't just stop after the good ol' college try, they've increased the rate of drug overdose by 11 fold, and increased the incarceration rate for drug offenses similarly.


But sure, "..not completely understood..." let's go that way CDC, but drug habits aren't the only category where Boomers lead the way.

Prison.

With age comes...jail time for 1 in 37 Americans. Boomers, due mostly to the larger population, have the highest time served behind bars. Prison is a terrible environment in general, add a life threatening disease and it's even worse, and Baby Boomers are caught in the cross-hairs. Boomers have the largest incarceration rate of any generation at that same age group.
Yes, that is 1974-2001 data, which means it only taps into boomers prior to hitting 55 years of age. 

So what does HCV look like in prisons today?
in 2011/12 roughly 16% of  prisoners/people in jail reported having/had Hepatitis C.
Not 1 in 3 as the incarceration fact sheet explains.
 But that fact sheet is full of holes, as I've explained before.

Blood Tranfusion/Organ Transplant.
Boomers had decades of potential exposure through transfusion or transplant prior to 1992, while even the oldest Millennials were just leaving elementary school, and had less potential exposure to those means.

TL;DR Boomers are the largest generation, have the highest IDU and incarceration rates, and had the highest risk of exposure due to transplant/transfusion prior to 1992. Which is why they are, the generation most at risk for HCV.

Sure, CDC let's go with "...not completely understood..." CDC fact sheets are wholly wrong, they're just wrong enough.

The CDC has a responsibility to produce readily consumable fact sheets regarding disease, these sheets read more like poor advertising pamphlets than fact sheets.

Canada's CATIE has beautiful fact sheets with sources.
If you're a boomer these are just SOME of the biggest reasons why you should get tested.
The likelihood of transmission for boomers is pretty high among groups, and it's best to find out before cirrhosis hits. (trust me, advanced cirrhosis is a bummer, you don't want it if you can avoid it.)

By year's end there will be more than a dozen options for HCV treatment. If you find you're infected, find out your genotype and work with your doc to get treatment.

Cold compresses and hot soups

Every time I go under for an upper endoscopy there's always some type of clarity that happens the following day. I typically sleep so soundly, It's hard to describe, but it's a mental calm. A lot of the constant stresses aren't as intense. It's a nice pause, for what it is. While they test for RAVs and see what they can do for me, I wait and see.

The endoscopy gives me a chance to give my friends a view into some of what I have to do regularly. Nearly a dozen of my friends have been my driver for the upper endoscopy. They'll relay important information back to me, regarding any RXs I'll need or any suggestions the doc has. Since I have little memory of the event, I am completely reliant on whomever is my driver.

I used to think of it as a chore, but now I view it as an honor. Because it takes a deep level of trust to give someone that level insight into my life and the responsibility of taking care of me for a day.

I have yet to find a friend unable to take on this near half-day inconvenience. My girlfriend was my driver this time, and she relayed good news. No banding this time! Yes! Getting banded is not so bad when it's winter time and soups nice and hot...but it's pushing 90 Degrees Fahrenheit and soup just doesn't have the same draw that it does in the winter. ( When banding occurs, soft food diet restrictions can last a week or two.)

I've also learned that my acid reflux is worse than it used to be. So I've started avoiding foods 2-3 hours before bedtime, and sleeping in a reclined position.

Which was great last night...until I accidentally snapped my pinky toe.

What a useless toe; my toe caught on a chair, and well... it snapped out of place to a 45 degree angle off my foot. So I just popped it back in, it's pretty swollen and bruised. But as I see it, if my knee can withstand a car without breaking, my pinky toe can withstand a weak and cowardly chair. Thankfully, I've equipped my home with first-aid response kits and cold compresses. R.I.C.E. (Rest Ice Compression Elevation) every hour for 20 minutes or so has brought to wonder one thing about this experience overall. Why is Ice the second word in the RICE acronym? It seems like an odd choice, it always forces me to second guess if the I really stands for Ice.

Long story short, I now get to sleep in a weird V shape, while having to get up every 2-3 hours out of pain or having to pee. I can't help but laugh at my situation. It's not horrible, it's just terribly inconvenient and annoying. Which brings me to the point of all of this:


It's not so bad. While yes, at times I may not be able to walk because my legs have ballooned to look like overfilled sausage casings on the verge of bursting, or the muscles spasm out of control because I messed up my electrolyte balance. Or the increasing joint pain that makes my knees ache...I can walk mostly, I can move on my own power. And though I have times of incompetence, It's not so bad.

I may forget what's going on, become confused easily, have strange heartbeat patterns, my eyes will ache easier than they should, and I bruise like a person more than twice my age. My bone's are still strong, and while my back may ache from the liver pain, I stand up tall and enjoy what is here, because it's not so bad.


I could go on ad nauseam, but what I've seen is that there is good hidden within troubles. I've come to appreciate things that may seem strange to others, even this stupid toe injury. I can't help but laugh at my own misfortune. Seeing the good, has always helped me find hope in every hardship.

This is part of my mentality, why I refuse to give up, and do every treatment I can. I will do better, and with each step forward I will do best. Because I have not so easily resigned myself from this life. I shall live as best I can, as I can, because best is enough.

Risky Business.

Caitlyn Jenner. It's a name that will dominate the media for a few days and linger for the next few months. This isn't about where anyone stands on transgender lines, or how you feel about their decisions.

This post is about struggle. Each of us will have our own struggles, and to us they can seem monumental. For a four year old, tying a shoe is a struggle. For a twelve-year old it's navigating the often mean-spirited critiques of their peers.

Loss by Lycanium

I found out I had Hep C when I was in middle school. I didn't understand the necessity of obfuscation. I didn't realize that while many close to me, didn't think anything of it. Their parents would, and it was met with mixed response. I realized within a year that explaining to anyone my circumstance if they asked, wasn't wise. I lost some friends, I lost some teachers, and worst of all I lost myself. I ignored the problem, and actively tried not to deal with it. It became a turning point in friendships, and especially in relationships. Some friends would dial down their time spent with me, and slowly phase out of my life. Some people started being very busy. Their responses taught me caution and fear.

Thankfully those who know me, who love me, stand by me. But that does little to translate into the dating world. It's a lot of rejection, having to do with something I hold no real control over. It becomes a well timed conversation with a lot of hope of acceptance. To fight the disease in my liver, and the disease in my life is not a unique struggle.

Coming out into the open and being an advocate for HCV is a risk. Because as much as it hindered me in dating it also hinders professional growth. I quickly fall out of an interviewer's idea of 'fitness' within a minute of googling.

I identify with Caitlyn Jenner. While my struggles are different, the core of the fight is the same: intolerance, medical/physical changes, and misunderstanding. I see people talk about bravery and show photos of wounded veterans; when a photo of an inner-city special needs teacher, a firefighter, a phone customer service rep, who all have their own personal and unique versions of bravery, would do. This isn't about who is more brave. It's about sharing that story, and helping people who are going through struggle who have a hard time identifying with traditional popular stories of bravery.

What I have seen, and what I have experienced in disease and treatment has taught me well to value all forms of bravery. Marginalizing those struggles only makes their struggle that much harder.