About Me

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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, December 28, 2015


New years is coming. 
Stay Positive.
Just not HCV positive.

This year I will take my speckled axe and embrace the negative space.

I wish you all a glorious new year.

Hepatitis C you next year.

Friday, December 18, 2015

But, Why is it purple?

     I woke up to notice an unusual cough and a foul taste in my mouth. I proceeded to walk myself to the bathroom where upon I discovered a color I didn't think could come from a person. The alarming color I saw was a dark purple with chunks of all different types of foods that I'd eaten all day. I presume that it was possible that it may have been something that I ate, so I proceeded to go through all the different foods that I'd eaten that day in my head. Whatever the potential culprit was, I slowly drank some water and sat upright as I awaited the next round. I was aware that this was not finished.

     The color, the smell, the taste, everything about it seemed unusual. And at 4 AM this is something I needed to keep an eye on. As the morning crept forward I would again find myself face to face with a porcelain halo. I proceeded to dump even more of a purple - now what appeared to be dark red into the bowl. At this point I was certain somewhere inside me... I was bleeding. I have tasted blood that'd been drying in my stomach before I have tasted fresh blood from the back of my throat but this taste this chemical popcorn taste was unlike anything ever that I had willingly consumed. From there I cleaned myself up yet again and sat on my bed waiting for one last thing to make sure. The curious thing about an internal bleed in your GI tract is that there are two areas you can watch: your mouth and your butt so now I was merely waiting for the moment to pass so to speak. Upon inspection I found absolutely nothing unusual, and it was at this point I proceeded to make some phone calls and be on my way to ER.

     While waiting for my dad I sat upon the steps to my home. The cool breeze coming up from the canyon, my arm gently resting on the handrail so that if something may happen perhaps I may lean on it for support. My stomach burning from the inside out and a plastic bag in my hand. Prepared for the worst, a towel over my shoulder waited to clean up any unwanted messes. After a moment I was on my way. There was nothing unusual about the ride except for me vomiting along the way. Thankfully, I had my plastic bag! When we arrived to the ER I handed it off to my father, he proceeded to attempt to give it to the ER nurse which was entertaining to say the least. The next part is a touch hazy as within perhaps an hour of my stay in the ER I was under mild sedation. A 20 gauge needle in my hand was a sobering reminder of the potential impending problems. (A needle gauge between 18-22, is used in case of blood transfusion)

            Thankfully my nursing staff was quick and very accommodating throughout the entire process. It was smooth and easy, it's one of the things I prefer about Sharp Healthcare. My nurses were fantastic and made the entire experience significantly more bearable.

       While in the ER I proceeded to vomit a few more times before they rolled me upstairs to the ICU. Most nurses are kind of confused when they first see me on the ICU floor because typically speaking to someone on the ICU well ummm...is practically dead. There are number of reasons why the ICU is typically where I end up going, one of them has to do with conscious sedation and the other with the fact that my status may change within a moment. When the new doctor came in prior to the procedure to introduce himself we went over the basics of the procedure's complications, and a little bit of my own patient history. He was very surprised at both the number of treatments I've failed, my outstanding health otherwise and my age. Saying " I'm not going to lie, you are very unlucky."


The procedure kept getting pushed back, so hours went by where I refused pain meds because of the impending fentanyl required to scope me. So when he came in and said "Long time no see." Well, I couldn't help but respond a lil sassy as i said "Yup." I'm not certain exactly what happened after that because at this point everything kind of gets really fuzzy. Fentanyl will do that to you. The procedure I had was unlike my typical endoscopy. This was something a little bit deeper it's called a gastroendoduandoscopy.
If you thinking to yourself what the fuck is that? Then perfect we're on the same page. Let's break it down...
Gastro: Stomach
Endo: Esophagus
Duadno: Duodenum (it's an area after the stomach, prior to the intestines)
-oscopy: inspection by scope.

      After the procedure in my state of delirium I was greeted by my friends. I apparently was quick to adorn myself with the title "Two Socks" and co-opted them into my newly formed band.

My surgical team, doctors and nurses were on point. My GI doc did a fantastic procedure and didn't bruise my lips. (If you go in for an endoscopy, wear Chapstick, you're basically gonna make out with Legos for ten minutes.)

The scope revealed no real threatening abnormalities.

The bleed had been caused by irritation and some scraping in my stomach.

I have little recollection what happened after the procedure, I remember flashes of a car ride, constant requests by me for Tajima Ramen, and suddenly being home.

While there was no major issue (unless you count the lack of Tajima Ramen), the entire debacle was exhausting to say the least.

I'll have a follow up in a few weeks, from there we'll determine when treatment should occur.

I'm going to use this whole shitty experience to highlight one incredibly valuable lesson I've learned to value greatly. 

Besides my HCV, I am healthy and fit. It's paramount that when you live with any disease you must mitigate comorbidity (multiple diseases/medical issues) by minimizing your risks. Physical and mental fitness are your friends :)

This wasn't a cake-walk getting to this point, it's hard and it's a little maddening and it took months. Every day, every moment is its own unique struggle. I look at one hurdle, isolate it, and take it down at my leisure. My first three weeks were a constant struggle as I combated the daily one to two hour muscle spasms. But once I built up the muscle and began to better fight my atrophy, it slowly became easier. I would vomit once a week from simpler work outs... my point is that it's not easy, but do it anyway, find what works for you and....


Sunday, December 6, 2015

And So It Is.

This will probably be my most personal blog to date.

I have been lost in exploration lately.

Rather, I should say I wander, not simply that I am lost.

This blog has been an unforeseen gift to me, allowing me to look back at my thoughts years ago, and understand where I've come from. To better understand my mistakes, and to live better than I have. I have learned to strengthen the bonds near me, and now I should seek the same connection with others. I value every bond I share, and if I am to truly know myself I must share more personal moments with friends.

If I have not extended a hand to you yet, I implore you to seek me out. Because I appreciate you as a friend and I want to experience something you truly love with you. A place or thing that represents who you are, your happy place, if you will.

In the same spirit, I have a few weeks remaining on my Disneyland pass, (basically the 15th of December), and I want to share my happy place with you. So that I may know and experience my favorite place with you. I realize I may never go again after this. There are a lot of factors involved with this reality, the price increase is part of it, but there is another hurdle.

For the last 4 years, I have had a steadily rising cumulative probably of death. To say I'm beating the odds isn't entirely true, I'm simply very fortunate. As I presently stand, without any treatment my probability of death reaches about 94% by this time next year. 

Including the odds of a successful treatment my outlook improves dramatically. Even if the treatment fails it could extend my gambling habit for another two years, as previous treatments have extended my stay. There's a lot I cannot account for but with the odds I can see, there is about a 9% chance that I become terminally ill this next year and will not make it past 2017. It is something I have taken months to really accept, but I have to learn to let go, and accept what I cannot change. I would rather focus on the hope of success, but I cannot ignore the parts I dislike, I must understand them, and accept them.

This isn't some weird dying request or whatever, the odds of me living and getting cured are pretty great as far as I'm concerned. I simply have reached a point in my life, where I cannot abide weak bonds. If I am to grow, I must humble myself to learn from and better understand every soul around me.

On another incredibly personal subject, I am a Deistic Religious Scientist. And the last few months have affected me deeply on a spiritual level. I don't talk about my faith, mostly because there isn't a lot to talk about. Religion has always fascinated me, the tenants, mysteries and what amounts to articles of faith. My faith compels me to understand all forms of belief, and to understand my friends through their faith. It's an aspect of my faith I regrettably stopped paying attention to after my first treatment.

I will also take a small bit of time to explain my faith, so that you may know me better. Most people do not know of either aspect of my faith, since they are incredibly obscure and I so rarely talk about them.

In essence it is a "belief" in a unity of all things through God. That God is within everything and everything is God's will. Good is infinite and an inherent quality that can be understood and accomplished with prayer, meditation, and/or acceptance. There is a universal harmony, a balance, that every moment is complete and perfect within itself and the law of cause and effect is always in motion. That immortality is achieved through our very existence, because life moves in perpetuity. I believe in the mystic concept of a Cosmic Christ, not a person, rather a universal presence, an image of God present in all creation. That it is a God-like consciousness that was and is present in all Prophets and enlightened people who use this in a positive evolution of society, mankind and/or personally.

As a Deist, I find the form of religious science to be my truth. I am compelled to understand the bonds of faith that exist within my friends, so that I may better understand them and my own faith.

As a Deist, I find validity and wonder within all forms of faith. Because the core understanding within Deism is simply a belief in God, the personal relationship of a religion is up to the Deist as an individual.

It is ever present in my life, I don't usually talk about it because I'm actually always talking about it. It is my way of life. I do not invoke the name of God when it's implied so frequently. As a gesture of gratitude to my faith, the symbol of my will bears resemblance to the symbol of Religious Science

Left: Symbol of unity from Religious Science.
Right: V of Acceptance and Struggle: HCVME

HCVME is the manifestation of my will to become more than I am, to better connect with others and to be open about my challenges so that I may better understand theirs. So that through the power of empathy and perspective we can overcome the social hurdles that face Invisible Disabilities. 

The name HC<ME (HCVME) is also intended to evoke the iconic HE>i, which is a shorthand for John 3:30 "He must become greater and greater.  I must become less and less." But instead flipping the idea on its head implying  1 John 5:4 "Because everyone who is born from God conquers the universe; and this is the victory that conquers the universe - our faith."

If you are a new friend, or someone I've yet to meet Email me: Canythingbutaverage@gmail.com

And of course, if you need to talk to someone about Hepatitis C(HCV) and you're not sure where to turn I'll do everything I can to help.

Wednesday, November 4, 2015

The Transplants

I received the call at 8:39 PM

I was expecting a call from my parents when the phone rang. When I saw it was from a restricted number, I started off apologizing saying "Yea, I meant to call you back sooner, sorry about that." A little confused, the man asked my name.

I was playing Sid Meier's Civilization 5 with a friend at the time, a very mellow video game. The man began after he confirmed who I was, "Hello Rick Nash, I'm calling to tell you that you have a liver offer." My eyes became transfixed on the wall as he explained to me the details. I was jarred from my seat standing, as if that would help with understanding. He explained all of my options very clearly, I could take the liver, or not and it would not affect my standing for a transplant. There was one hiccup:
It was a high risk liver with HCV.

I told him that I'd call him back with an answer. I had to act fast, an hour was all the time that could be spared. I spoke with my parents and friends to work it out.

In my present state, my MELD score is in the high teens, which means I'm not in an immediate danger. However given my proclivity for the ER, I seem to find myself in life threatening situations every so often. And if I were to be hospitalized it would likely result in my needing a liver.

With that in mind, taking the liver offer becomes a pre-emptive strike approach. If I take the liver it would take a year for my body to get used to it. By that time I will decompensate and be worse off than I am now. And I may also be unable to take the new treatment(s) in 2016 while I'd recover. This pre-emptive strike is more about risk mitigation than anything else.

Besides the affect of my end stage liver disease, I'm otherwise healthy. I'm young and there is little information on recovery following a treatment for young patients (let alone with MELD scores). I could potentially live for a few more years as I am, before needing a transplant. And there are two upcoming treatments which deal with my scenario and trials I could participate in.

When laid out in front of me, the decision was clear. I'm in it for the long haul.

After weighing the options, I called him back and told him I will pass on the liver offer.

When I signed up for the liver transplant program two years ago, I hadn't yet realized just how suddenly these kinds of things are. 
A liver offer has a very limited amount of time to stay viable,
and I have to be ready at a moment's notice to be at that center when the time comes. Which also means I need to have my phone near me at all times.
In the end it I feel it was a potentially worse short run decision with better long run results.

Friday, October 16, 2015

Shattered for Good.

Recent events in my life have done something amazing and in common theme with my life are presently bittersweet.

The realization was due to some heavy introspection...

I was deeply depressed after Sovaldi/Olysio failed, but I didn't realize how long that depression would last.

After I left the hospital in September 2014, I was a shell of myself, trying desperately to figure out my life. And while I found motivation to keep moving forward, persistence though pain is not the same as living. Daily tasks become hard-fought and over the months I found myself unable to do more than a task at a time. I was scattered and constantly procrastinating.

The remedies to revive me, didn't work as they had in the past, and until the Harvoni treatment was guaranteed I was degrading into a recluse.

But the reason I couldn't pick up my bootstraps is something even further back. When I left the school district, I lost that part of my identity. I put my focus into treatment entirely, and slowly dropped most of the things I loved to do. I had decided that my only goal was to be cured.

I had put all of my emotional energy into being cured, leaving little for myself and others.
Which was a terrible decision.

While I would grow closer to my friends through the roller-coaster of life, I put everything including myself away. As my treatment began, I found support from from friends and especially my girlfriend at the time. She is inspirational to me, and I became the advocate I am today in large part because of her. After the first zero I was elated, this was the first time I had this success. My goal was accomplished! So I started to get involved even more with advocacy, my team raising thousands of dollars over the years now. I wanted to transition from working with kids, to working with technology and kids, and began to look at the idea of graduate schools. I became even closer with friends and family.

But in September of 2014, it hit the wall. I had foolishly used my illness as an excuse to myself not to push myself further. I'd never truly resolved the questions in my mind, the despair that came with the wind getting knocked out of me from the failure of Sovaldi. My mind, and the spaces I would inhabit would become cluttered, slowly.

So I would go through my Harvoni treatment, sure that it would work, when I saw the zero I was hesitant to be but still excited. The failure brought me back to square one.

I found simple tasks daunting. I would rarely move throughout the day. My room, everywhere I lived was symbolic of my state of mind. Tasks were harder, not only because of my mental barriers, but because things were literally hard to find. The idea of walking to I became lethargic and gained a lot of weight. I felt like every day would be my last, which isn't as magical as it sounds, because the implication to myself was that i would rather die than be responsible for my actions. The medications I would constantly balance wouldn't help my state of mind, paranoid and confused I had degraded to my lowest point.

After a long phone call, my heart sunk. I realized how pathetic I'd been, how fearful, how absurd the methods of my madness had become. I couldn't live like this anymore. Shattered, I finally understood how I'd been sabotaging myself.

All the things I'd wanted to do over the past year, suddenly seemed possible. The idea of leaving the house wasn't frightening and tiring. I reorganized my priorities, and began to de-clutter.

I use memory anchors to compensate for my slowly degrading memory and brain fog. It's an embodied object for your mind. Every memory is attached using different senses... it's like when you smell something familiar and it reminds you of something. Certain types of cigarette smoke remind me of when my grandmother would smoke on the patio and convince five year old me to get in some kind of trouble to drive my dad crazy.

As I de-cluttered, memories came flooding back. I had covered my anchored objects in a room filled with trivial trash and dirty clothes. My windows were dark to keep out the light, because while on treatment my photo-sensitivity went up, but I would continue to use it as an excuse to keep the room dark. The bamboo, Devil's Ivy and Peace Lilies, slowly began to die. I opened up my room to light, and as I type here now, instead of a dark brown curtain, I see palm trees, and a cloudy sky. I have regained a level of focus and excitement I haven't known for years.

Having my eyes just recently opened, I see so much more, and will see more to come.
The worry, the fear I had is gone.
I can actually say, that I'm no longer depressed.
I have a treatment coming up in January, but it's no longer the focal point of my life.
So now, as the great Ben Franklin did, I wake up and I ask myself
"What good shall I do today?"

Monday, October 5, 2015

Hope is not a four letter word


We've been seeing DAAs like Sovaldi come out lots of labs, but we're about to witness the rest of the big companies throw their hat into the ring. Gilead's use of the Warehouse of Hep C (HCV) patients has led to historic profits for Gilead. Johnson and Johnson's Olysio tapped into the market, and Bristol Myers Squibb's new Daklinza (daclatasvir) are filling the gaps Gilead's Sovaldi left.

And soon Merck is about to throw down one of the most virally specific DAAs around. The new combination treatment will be able to cure even cases previously failed due to RAVs (mutations).

Why am i stoked?
Because it may be my sixth treatment.
So what makes it different?

Well first off two/three phases have been done with higher efficacy than Harvoni.
C-Edge and C-Salvage.
C-Edge is similar to most DAA studies, it's efficacy is unsurprisingly high.
C-Salvage as the name implies is specific not only to people who failed interfereon/ribavirin, but also failed a DAA like Sovaldi/Harvoni/V-Pak. It's going after people with NS3 and NS5A variants like myself.

The C-Salvage study has the best results i have seen for someone in my situation.

Previous treatments I've been on had an 84-86% success rate when it came down to my genotype, and cirrhosis. Usually being even lower for decompensated liver patients, however it still positively impacts MELD, so it's not all a waste.

The C-Salvage boasts an unbelievably high success rate: 96.2%

The new drugs names: grazoprevir and elbasvir.

So damn catchy, aren't they?

Annnd it's slotted to be FDA approved during the early first quarter of 2016.
Annnd the new grazoprevir and elbasvir treatments could be as low as 16 weeks instead of 24.

Troubles: The study doesn't specifically mention which variations, as those may/may not have an impact on success. So in this aspect it's kinda a crapshoot, because until later this year we won't have clear enough data to say that it will or will not be successful for my specific variations.

Troubles: Price, with the way Hep C meds are presently being marketed it would not be surprising to see a hundred thousand dollar price tag. Merck will also probably offer a massive discount program similar to Gilead's MySupportPath.

And this thing... keep an eye on the TPP...

The Trans Pacific Partnership. As i highlighted in a series of blog posts regarding why Medicaid is waiting until people are dying to cure them, the TPP will play a large role in how insurance agencies, Managed Care Organizations, Pharmaceutical costs(and carve outs) are going to be set over the next few years. 

With the TPP disclosure coming out soon, and congress to debate it, this will undoubtedly play a role in access to Merck's new meds, and the prices it offers consumers and insurance agencies.

C-Edge Study:
C-Salvage Study:

Friday, September 25, 2015

The gray area of ADA protections.

In 2006, an ADA case regarding Hep C helped set the tone as a reminder of just how gray ADA protections can be for Hep C.

EEOC V. Heartway

A woman worked in the kitchen of a senior's nursing home, upon cutting her hand it was revealed that she had Hep C. She was sent home requiring a doctor's note for clearance, when she attempted to return she was subsequently fired. The manager complained of the risks of exposure citing a potential mass exodus if this was made public.
His claim was that she was fired because she lied about having Hep C on her application.

The case would prove the manager's actions as illegal and her claim that she was fired as a result of Hep C was upheld.

The case also expanded on where Hep C fits within ADA protection. Hep C itself is not a disability, it's protected under the "Regarded as" interpretation. "Regarded as" is basically the idea that if the manager assumes it's a disability, it's a disability.

This is also incredibly hard to prove, unless like in this case the employer decides to say something akin to: “you having Hepatitis C, you will not work in our kitchen." It makes these cases slightly more clear.

I've disclosed my Hep C several times to employers with mixed results.

In 2010 I worked for a school, my supervisor was new to the field and was never given the training she was supposed to be given. Having worked in this field for six years at the time we began to butt heads.

I was looking into starting the Incivek treatment at the time, and explained that I have Hep C and went over how that may affect my ability to work. I asked for several days off/less hours on those days so that I could go to my tests and doctor's appointments. She explained that she would get back to me on that.

I was not prepared for what happened next. She scheduled mandatory staff meetings and events for the days I requested. She presented me with a new schedule of hours, switching me from working 10-6:30 to 6:00AM-9:00AM, 1:30PM-6:30PM. She began to make the essential functions of my job practically impossible to do. She'd made comments to the effect of questioning my ability to work due to my needing so much time off, stating I could barely get the work done during the time I had.

Her aim was to get me to leave, or fire me for poor performance. With the help of a fledgling union I was able to delay most of her evaluations and help determine when the meetings would be. She began to pit the staff against me, and I saw two options ahead of me.

If I fought this, the ADA protections are too vague, and I could've spent thousands of dollars and years in litigation.

So instead I did something different.

I explained to the staff that I had Hep C, and an upcoming potential treatment and did a q and a. The staff was understanding and compassionate. However, the stress from the situation would already leave its mark as I unknowingly began to lose blood internally. I was hospitalized for an esophageal bleed, when I returned to work I was pink slipped. The pink slip had nothing to do with everything that had happened, it was downsizing. It was the wakeup call I needed to leave the school. I continued working at other schools within the district, and doing tech support full time.

I would love to say that this is the end of my frustration with my employers and Hep C. While doing tech support my managers and co-workers were supportive and kind, the same can be said for the seven other schools I've worked at.

Years later I worked at an elementary school. I didn't need to disclose my Hep C to my supervisor, she already knew of it from friends of mine who worked for her in the past. I was unaware that she had no intention of allowing me to gain permanent status. She constantly pushed for me to take days off if I were sick or not feeling well. It was during my employment with her that I was diagnosed with Hepatic Encephalopathy and Ascities. Due to my worsening ascities it became hard to walk or move at times, I also struggled on several essential duties, but due to the Encephalopathy I was unable to explain it. Because to me, everything was accurate, I didn't understand that when out of balance I would be unable to properly do basic math consistently. Lactulose would correct this, and before I was terminated I was successful in this task. With medication, the issues were no longer a problem. In early December I had an impromptu evaluation, and despite my meeting of each goal, I was let go.

The reason I say that she had no intention of allowing me to gain permanent status is because she already had someone chosen for the position. Someone who was unqualified for it at the time, her intent was to hire that person when I was terminated because by then she would be qualified.

In this scenario, there was no intent to replace me due to my disabled status, however it was utilized as part of the reason I was eventually terminated. At the time I understood that I could request reasonable accommodation even at the late date of that final review.

However, I also understood that while that would allow me to continue working for her, I had little interest in reliving the adventure which had happened a few years ago.

During the first work situation with Hep C, it would have been hard to prove that Hep C was the defining factor, despite it's clear use as a means to attempt to terminate me.

The second situation gave me the ADA protection I needed, but would have been stressful and I would have had to fight my supervisor for the rest of my employment there. And by this time my decompensated liver severely limited my work options.

While there are protections under the ADA for Hep C, they're hard to apply because of the nature of discrimination. Until the disease worsens or treatment begins, Hep C often falls under the "Regarded as" category. This makes it very hard to determine if there are no statements or actions that directly point to Hep C.

You can't be fired for having Hep C, but the question of being fired for excessive absences as a result of Hep C is up to a jury to decide. EEOC v. AT&T

Most people with Hep C who seek treatment often find a looming financial burden of large medical debt associated with treatment. Many with Hep C are presently forced to wait until the disease worsens to even be able to get that treatment, so while waiting their need for medical care increases.

While the EEOC can help someone fight a case like this, dealing with a case, treatment, and attempting to work so that they maintain insurance/income can be a monumental task.

So what can anyone do to help?

Help stop the stigma, correct people when they talk about Hep C as some kind of monster. (as we said at the school I worked at: "Be an upstander, not a bystander."

Support organizations like the AASLD(they write the recommendations for everything liver related) and NVHR(they help pass Hepatitis related legislation).

Vote for candidates who make it a priority to stand for patients' rights.

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.

Thursday, July 30, 2015

The Locked Warehouse Doors

Before Viekira Pak, Sovaldi, and Harvoni...

There was Incivek (telaprevir) the $83,509 Drug

When it came out it was heralded as a wonder drug, because it nearly doubled the (SVR)cure rate of HCV meds at the time.

It cured my mother, but while she was on it she had multiple transfusions and her anemia was controlled by ProCrit (a red-blood cell boosting drug). It was later found out to have been a direct contributor to several deaths, and thousands who took it were left with permanent skin damage regardless of success of treatment or not.

When the drug was pulled from the market, there was a feeling in the HCV community. When a cure with rates that good is pulled, even if it carries a black-box(may cause death) label from the FDA, some would risk it.

I nearly died while on it due to my anemia and bursting esophageal varices. From that point on, like many F4 patients I was barred from using Interferon for new treatments.

The term warehousing became popularized with HCV patients. In 2013 Sovaldi and Viekira Pak were undergoing trials and it was believed by many that there would be a host of new drugs being released within a few years (referring to 2014/2015)

The existing treatments' side effects were troublesome, and the results were poor in late 2012 after Incivek became taboo. Patients who could have taken those treatments opted not to because when your options are to feel terrible for 48 weeks and 50% chance, or wait a year or two for a 12-24 week treatment with a 90%+ chance...it's not hard to see the appeal. Especially when you consider that majority of the deferring patients would have been in the F0-F2 category, which has minimal symptoms.

Now, back to 2015. Sovaldi, Harvoni, Viekira Pak and other partner medications like Olysio and Daclatasvir have been released. Every Pharmaceutical is throwing in their hat. Merck is even entering the all oral ring early next year with a grazoprevir elbasvir combo similar to Harvoni. Drug makers are ensuring that each of the drugs targets specific genotypes, and it's not purely scientific. In doing so it allows them to rush the FDA approval process for what's called "Breakthrough therapy" designation. The result is a whole lot of new HCV drugs that treat lots of genotypes of HCV.

Which means that all of those HCV patients can get treatment, right?
Not quite. Because at it would turn out these companies are using Incivek's pricing model.

Let's talk business for a second what makes that price point? The price won't always be as high as it is now. In a few years the drugs will lose their patent's exclusivity 

Usually this means that the drug needs to profit as much as it can within the first five years before generics can start being licensed. Patents still protect a drug from copycats for 20 years from date of filing. So they'll still make large profits until the patent expires.

The Research and Development (RnD), litigation from patent trolling, and acquisitions are also costs to bear in mind. Acquisitions can cost hundreds of millions to billions of dollars. Most Manufacturers acquire smaller labs who are/were producing HCV meds. After that, it's direct injections of capital for RnD expansion until its market ready. Then the lab gets to use the distribution methods, sales channels and brand recognition of a major name. Make no mistake, they're making billions off these deals, but they're also billion dollar risks.

With lots of high priced drugs on the market, both AbbVie (Viekira Pak maker) and Gilead(Sovaldi/Harvoni maker) offered direct to discounts to consumers. AbbVie started to patent troll Gilead in attempt to slow down the impending juggernaut Harvoni. Insurers and Medicaid/Medicare had to figure out a way to handle the tidal wave of some of the largest groups of HCV patients warehoused. The restrictions are now at such a point where those patients still warehoused now find the door locked by health insurance restrictions.

This is the Locked Warehouse Door.

The reality of new HCV patients is one of the locked warehouse door. For those who await treatment, either existing or pending treatments, they must wait for the bureaucracy of the key. Hopefully by then the price of that key becomes affordable.

In an effort to help categorize the different Tweets regarding HCV, consider using the hashtag: #LockedWarehouseDoor when tweeting about health insurance or Medicaid restrictions and high-cost HCV Meds. Help remind pharmaceutical companies, insurance companies and lawmakers that the "warehouse" of HCV patients are dying to get out.

if you were denied Sovaldi, Harvoni, Viekira Pak, or any other new HCV med, if you had to go through lots of hurdles for treatment; I urge you to tweet about them with the hashtag: #LockedWarehouseDoor.

Tuesday, July 28, 2015

Today is World Hepatitis Day.

Over 400 million people around the world suffer from a form of Viral Hepatitis. In the United States Over 36,000 people die every year from liver disease.

Around the world over 4,000 people die every day from Viral Hepatitis.

It's known as the silent epidemic, because for years it hides, not displaying any symptoms.

I spend a lot of time talking about Hepatitis C, because it's been eating away at my body since I was born.

But this post is different. It's mostly about the other two major forms of Hepatitis.

Both Hepatitis A and B have vaccines. While Hepatitis A is unlikely to kill you it will make you sick...for months. Hepatitis A can run its course and rarely develops into anything worse. In an otherwise healthy adult Hepatitis A will be like the worst flu you've ever had. In a person with a compromised immune system, it can be life-threatening.

Hepatitis A is transmitted typically via the fecal-oral route. Like C. Diff and other forms of food poisoning you'll get it from (feces)tainted food or water.

Hepatitis B usually develops into a chronic illness. Like Hep C it is a silent killer often slowly destroying the liver. There are treatments for Hep B, but since there is a vaccine, focus is more on prevention than treatment. Like Hep C(HCV) there is no cure, while someone with HCV can be cured by clearing the virus through Sustained Viral Response, this is not the case for Hep B.

When someone is diagnosed with Chronic Hep B it is (for now) a life sentence. Treatment for it often is required as a daily pill to prevent the viral load from increasing and causing more damage.

This year the WHO announced its first ever treatment guidelines for Hep B.

If a person with Chronic Hep B or Chronic Hep C is exposed to Hep A, the effects can be crippling.

Hep A and B vaccinations are available for infants, and can be taken at any time/age and still be effective.

Every year we move leaps and bounds toward better prevention methods, better testing and better treatment options for all forms of Viral Hepatitis.

World Hepatitis Day is about taking preventative measures against Viral Hepatitis, getting tested, and getting treatment.

I am a person with Hepatitis C Genotype 1a Q80k Polymorphism with a decompensated stage two liver.
I was put into the stage four category two years ago.

One year mortality rates

As this chart shows, my odds get slimmer ever year. I'm lucky though.

This year I have an ~89% chance of complete liver failure. If a new treatment option does not appear by the fall, I would not be surprised to need a transplant come winter.

A transplant for individuals with HCV or HBV is not a cure. It's far from it. When the transplant takes, I will re-infect that new liver.

My odds after that do not exist.

Because there isn't a large enough sample size who have done this at such a young age. I've heard estimates of 10-15 years, as I'll likely re-infect the new liver soon after it takes.

Oh! Hello there! Still reading?

Wondering where that 400 million comes from? Well If you look at CDC data it'll point to WHO, if you look at WHO fact sheets it either doesn't say or points to the WHO, The Lancet, or CDC data...So i did some digging. (The Lancet article is about deaths, not in total)

400 million people have Viral Hepatitis which comes from about 240 million for HBV, and 130-150 Million for HCV.

Plus or minus 10 million is a silly think to throw out there when their own fact sheets would have them add up to 370-390 million.

240 million is actually a ten year old low-ball estimate.
The number is based off something called an empirical Bayesian hierarchical model. The number was about 223 million back in 1990, but a 2005 estimate had the number at that 240 we see today. 

They just haven't updated fact sheets to respond to the increase, and i have yet to come across new data. While i lack the knowledge to employ the model it's reasonable to assume millions more for HBV.

So what about HCV? that crazy range of 130-150 million people? The numbers are all over the place estimates go as high as 180 million.

Hopefully we'll see a study soon with application of the model so that we can have a more accurate picture.

So I'm sad to say that 400 million is probably a conservative estimate.

Sunday, July 26, 2015

Jaundice, HCV, and Me.

I haven't spent much time on here talking about myself lately. I've been wrapped up looking for more information regarding insurance, and trying to analyze the political climate and new concerns about HCV.

So I'll be posting or presenting a handful of potentially peculiar posts until my next doctor's appointment in August. Because It's time I get you up to speed. On moments, with friends, because they're important. Because they help me better understand how I approach this physical and emotional battering ram, with small and subtle gestures.
This past weekend, we had installed a new bulb in the kitchen. It's a bright white bulb, the light had been malfunctioning for a while. Since most of the bulbs in the rooms are soft white and shades of yellow, things appear their actual color.

Most of our lights are soft white or yellow intentionally.
My bilirubin has been bizarrely high since I graduated high school. I've always had a shade of yellow to my skin and dull eye whites. I've learned to obscure it with color, lighting and getting a little tan.

My brief experience with extreme jaundice confirmed what I assumed would be the case.
Call me.. Golden-eye.
I stick out. Especially as the jaundice also extends to the whites of my eyes. Normally now my eyes have a hazy yellow instead of a typical white sheen. When the jaundice is bad, it's jarring.

When they see it most people can tell I'm probably sick, but it's hard to understand. As it's the only characteristic they see and besides that, I appear healthy.

I was in the kitchen when a friend of mine noticed my jaundice from a few feet away. Concerned, he asked me about it. It's something I can't see without a mirror. It's something I can't tell because I see things with a slightly yellow wash. A camera is best, a selfie under a white light with my eyes wide open will tell me how jaundice my eyes are. I can compare it to something I know to be white.

Fear, anxiety rushed into me within a second. I'd have to go back to the hospital. I'd be there for a while, and this could happen at any moment.

It was a sobering realization, that any day, I could wake up look in the mirror and say "Shit. Where the hell are my Go-Bag, Keys and Wallet?"

As much sadness as it brings me, as much fear as it brings me, dwelling on hang ups slows down my response. A response that's crucial and could involve whether I live to make it to the hospital or freeze up and delay timely medical assistance.

For a moment I stuttered, I realized I'd forgotten to take my meds that day. I downed them quickly and I took the photos under two different white lights, compared them to white objects. I was normal, well for me anyway. It was simply the case that my friend had never seen the more pale part of my farmer's tan  under the bright white light.

I'm rather relieved that this was the case. But I realize that it is very likely that I will become more and more jaundice as I approach the need for a transplant.

But I guess it's good to know that at least I'd have survived The Battle of Bunker Hill. So I got that going for me, which is nice.

The Battle of Bunker hill is where the phrase "Don't shoot until you see the whites of their eyes." came from.

Monday, July 20, 2015

Who cares about the TPP anyway?

Since I was diagnosed with Hep C (HCV) when I was 13...
I ignored the problem, grew detached and depressed.
At 18...I fought the problem, the idea that I was sick, that I could live a normal life.

At 22...I lost.
At 23...I lost, I thought the key was to improve myself, to focus inwards.
At 26...I lost, I became more honest, more humble and focused on helping others.
At 28...I lost, I put my heart into text and hope that my growing disabilities would not hamper my new found advocacy.
At 29...I lost, I have never been more inspired by those around me than ever before. I have never been more hopeful and afraid of the amazing potential we now possess.

With all of the new meds, what should I be afraid of?

Myself. I am not even 30, and I have end stage liver disease. I should rephrase myself, this is what I am afraid of:  anyone getting to F4 cirrhosis for no reason.

I am already too late. For those coming close, who are denied treatment for the thousands upon thousands of people who could be cured but will not be.

Present restrictions of new HCV meds will force people on Medicaid to wait until they have irreparable damage before they even have access in nearly a dozen states.

Normally states would attempt to grab discounts from the pharmaceuticals to give more people access to the meds they need. In fact the ACA gives the states better leverage to do just that.

So what's the deal?

Even Carve-out options right now are being held in reserve...why?

Joseph Stiglitz has been critical of the deal for it's expansions of 'Big Pharma' patents.

States can't lobby for decent rates right now, because pharmaceutical companies can hold out and wait for the results of the TPP.
If the TPP is successful it will create a very different atmosphere for pharmaceutical companies.
Presently states use their Medicaid groups to get discounts. This works by a simple principle: The more people in your healthcare group, the better discounts you can ask for.

There are hundreds of healthcare groups in the US. The biggest groups, like Medicaid, can ask for the best discount. The TPP will allow for stronger and longer patents, limiting access to generics. Which means Medicaid will have to coax discounts of brand name pharmaceuticals more often and for longer periods of time.
This alone will mean less effective discounts, higher medical costs, and higher insurance premiums.
Let's not forget about the hundreds of millions of people who will be trying to do the same thing Medicaid is doing...at the same time.

The biggest groups get the discounts.

Japan has a nationalized healthcare system with a population of around 125 million people.
Canada has a nationalized healthcare system with a population of around 35 million people.
Millions more live in New Zealand, Singapore, Australia, Peru, Mexico, Brunei, Vietnam, Malaysia, and Chile.

Each group would have to compete with each other for discounts, which means every single group gets less of a discount. Which means more restrictions, and less access.

The loss of bargaining power would healthcare prices in every country to rise. Including countries who aren't members of the TPP.

We hoot and holler about Gilead making billions over the past year with new HCV meds...but that's nothing compared to what all pharmaceuticals will make if the TPP passes.

We don't just lose money. We don't just lose Jobs.
The TPP will indirectly hasten the deaths of hundreds of thousands of people with Hepatitis C.

Thursday, July 2, 2015

Medicaid Barriers to New HCV Meds like Sovaldi

We have the power to end Hepatitis C in my lifetime. And yet...here we are.
When someone gets diagnosed with Hepatitis C (HCV), they don't all react in a similar fashion, we are a hodge-podge of strangers who have one thing in common.

Some turn to faith, Some discard religion, others ignore the growing problem, and many still have no idea. There are so many different ways we're spread, but we all agree on something.

Treatment early prevents the problem from surfacing.

So the ACA won and is here to stay, the supreme court ruled in favor 6-3....but what did we win?

Presently certain medical groups have combined forces with government red tape, stopping access to a cure for millions.
In order to truly go into the depth of this issue I need to stress certain facts and logic.

Hepatitis C is an epidemic of potentially horrific trouble, in a modern society it can travel  undetected. Poor policy presents potential population problems.

Drug use like this is uncommon, he is a modern shitty Typhoid Mary of sorts.

The key is early detection, early "cure" (Sustained Viral Response).
  • It follows that the early someone is cured, the less likely they are to accidentally spread the virus.
  • It follows that the earlier someone is cured the less likely they are to see their quality of life diminish.
  • It follows that the earlier someone is cured the more likely they will be healthier overall, allowing them to be more productive in the workforce.
  • It follows that a child whose parent has HCV, or vice versa will not have to bear the strenuous financial burdens that come with advanced liver disease alongside the emotional hardships. 

Remember that a disease infects an individual but affects a family.
When disease affects families, millions of families, it impacts the nation.

and now we have the power, the technology to cure (SVR) over a hundred million people of HCV.

Cure rates are in the 90% range, from new Direct Acting Antiviral (DAAs). We're familiar with the names: Sovaldi, Veikira Pak, Olysio, Harvoni, etc. (and more are in the pipeline from big guns like Merck and Johnson & Johnson)

It's why the World Health Organization has been so vocal about HCV recently. It's why we've seen more news about HCV float to mainstream in the past two years than in the previous ten. It's why the CDC has been building up their Know More Hepatitis campaign.
It's Hope for over a hundred million people worldwide. In the US our chronic hepatitis C population is around 2.7-3.9 million people.

For reference San Diego County has a population of 3.2 million people, Same as Phoenix Arizona. There are more people with HCV than the entire population of the state of Mississippi, Iowa, Connecticut, Utah or Nevada.

There are many options regarding HCV treatment, and certain treatments will have better "cure"(SVR) rates than others for different genotypes.

The longer someone is infected with HCV the more damage it will do, the longer the treatment takes, the less likely the cure rate.

Lets look at Metavir scores, as it's a common liver metric.
Medicaid reimbursement criteria for sofosbuvir (Sovaldi) based on documented level of liver fibrosis stage required for reimbursement.

As a person with F4 cirrhosis I took 24 weeks of Harvoni, and could have possibly been extended because I am the rare case of failure.

Someone with F2/F3 can often take 12 weeks.

Someone with F0 can often take 8 weeks.

Medicaid is the government sponsored healthcare in the US for those making 138% of the federal poverty level or lower.
Which is about $16,242 for a single person, or $33,465 for a family of four.

Medicaid is presently placing restrictions on access to HCV meds: in the form of requirements and testing.

A decent liver panel and Fibrosis scan can tell a doc what they need to know. Biopsies and other function tests are often not necessary for F0 patients.
What is happening in Medicaid is the restriction of access to cures that will best fit their genotype, by requiring you to have a certain level of damage, and pay for the unnecessary tests in the mean time.
At those limits of about $16,242 and $33,465, people can see a max out of pocket of $812 and $1,673 respectively.
But as people in Medicaid rise above the 150% of the Federal Poverty level (FPL) the costs become nearly unmanageable. as they'll quickly hit the out of pocket maximum, and when your take home is at ~$1,400 income per month, $1,059 over one or two months is hard.

Wait. Go back to that picture.
F4 cirrhosis is borderline liver transplant.
Those four states require permanent liver damage before they treat you.

It's even more troublesome for people at 100%-138% federal poverty level, If they are presently uninsured, and subsequently diagnosed, and then require Medicare. They could see costs in the tens of thousands for the test alone if they were to take them.

Presently different states can impact how fast a person hits that max out of pocket. For those of you unfamiliar with the nuances of Medicaid there are laws in nearly half of the states called carve-out or carve-in laws. The fundamental difference is that Carve-out has a larger rebate, and thus costs less to both the patient and taxpayers. Carve-in is more intricate offering more options by using the Medicaid Managed Care Organization of the patient's choice. This often results in allowing the insurer to select the methods and restrictions on medications, as well as create a faster operating network to minimize delays in coverage. It's higher price-point benefits the Insurers, and costs marginally more.

The ACA helped expand coverage via Medicaid.

So what can we do?

Well the ACA's advancements will continue growing in the existing US healthcare market, and Insurers will become more open to its use once the tax policies are ironed out by some future law. Presently the ACA's Medicaid expansion has given Managed Care Organizations better tools for price reduction.

But there's a whole 'nother aspect of the price point.

Hep C (HCV) would likely benefit by being carved-out, however it does not have a high degree of outreach or education, and it has lots of expensive options. Many combinations of different RXs and drugs which vary by genotype.
To make it more shitty, it is cheaper overall for everyone if the treatment is offered earlier, before serious liver damage.

But since we're dealing with politicians arguing bottom lines...
Let's forget that apparently we're not dealing with the Silent Epidemic (HCV) fast enough, the quality of life lost, the loss of work-hours, the pareto loss
(pareto loss is an overall shrinkage in market capacity), The affect it has on a family unit, and the potential 10% job loss due to the stigma

AIDs felt this frustration over a decade ago, when looking at Carve-outs because of increasing costs. 

A carve out policy for HCV is more likely to positively impact HCV, so long as Medicaid focuses on comprehensive care for HCV patients. (and governors are looking at it just a few months ago.)
The case for the now larger pool of Medicaid recipients would be able to help ensure better discounts than five years ago. (South Carolina started one yesterday! July 1, 2015)
But as we see with Medicaid's current restrictions on HCV care and the gratuitous testing requirements, the bottom line is where it counts.


Presently, HCV information and advocacy is growing, the stronger we are linked together the better we can help each other.

When my liver became decompensated and I entered the transplant list, I saw the world through comprehensive care for the first time, prior to this I had elements of compressive care offered to me, but not required. When HCV comes into your life, the future can be cloudy, comprehensive care can help this. Depression, Anxiety, Fatigue, to Stress, the stigma and nature of HCV combine with chronic hepatitis, can show early on in ways you don't notice at first.

It's hard to see behind unopened doors. There is need for therapy beyond groups and our ever growing online communities, I hope that within the next few years we can see the landscape changing.

Thursday, June 25, 2015


Why King V Burwell matters for people with Hep C.

First some context,

The ACA has done many things, from preexisting conditions, extension of benefits for young people (under 26), required labeling at restaurants of a certain size, a healthcare marketplace with an exchange that's consistent, and properly taxing what was before sheltered income for those making over 200,000 per year/have Cadillac plans.

There is one more, and this was the lynch-pin in the court case. it was whether or not the subsidies would be issued to states who did not create their own exchanges.

An interesting problem is that the many of the largest groups of subsidy recipients happen to be in states without exchanges. A problem if King V Burwell went the other way.
with King v Burwell a 6-3 it means that more cases which bare similarity will be less likely come up to the supreme court. 
The Majority Opinion of the court helps millions maintain health insurance. Every year thousands more Americans find out they have Hep C, a disease which needs medical attention, care and insurance. 
The other day I wrote about barriers. one of the big barriers when a person knows they have it, is paying for the care/treatment. 

Insurance helps reduce the cost dramatically, and those with insurance are more likely not only to get treated, but to better manage their health than someone without insurance.
My testing and treatment, using Covered California cost to date around ten thousand dollars.
That is because it hot max out of pocket of $ 4,000 last year, and I'm on track to do it again.
If I did not have Covered California I would likely be on Medicare due to my meager income, and without the ACA's expansion, I'd still be waiting another 20 months, because I'm disabled it takes 24 months of being permanently disabled to receive Medicare. wait...WHAT? 24 MONTHS?

So..because they're permanently disabled, and more than likely require health services, the government has to wait two years, to give them healthcare.
The exchanges prevent issues like this by reducing the cost of insurance, and subsidizing those who are having trouble paying for insurance.

For those of you Nay sayers against the ACA: the ACA will reduce medical costs overall by increasing buying competition through insurers. Since you don't directly pay (only co-pay) most hospitals, you're not he consumer of healthcare, you are the end-user.
This means that more money is spent in other sectors, money that would have mostly gone into overhead and left circulation.
It will reduce the number of bankruptcies as I talked about last blog. medical bills are getting paid, preventative care is more common, both of which reduce the overall medical debt which leads to medical bankruptcies.
Over one million Americans filed for medical-bill related personal bankruptcy in 2013.While bankruptcy numbers won't be in for three or four years which show the early effects of the ACA/Obamacare, bills are down and cost reduction is improving.
Bankruptcy costs society millions of dollars every year, sick workers are less productive, and more money is removed from circulation. For the Nay sayers, here's the financial cents.

The ACA has room for improvement but as it stands it expands healthcare to those who need it. It helps protect individuals and society by lowering costs. and it keeps more people productive, happy, and healthier.

Wednesday, June 24, 2015

We need slacktivists

These are most of the barriers to treatment.
  • Awareness of the illness
  • Financial costs
  • Occupational difficulties
  • Social stigma
  • Psychiatric illness
  • MISCONCEPTION: Asymptomatic disease vs. symptomatic treatment contrast

Remember when people got irritated and the idea of raising awareness not doing shit?

Well here with Hep C (HCV), raising awareness through testing is the biggest barrier.

Raising awareness about how HCV works and treating others with compassion can lower the stigma.

Raising awareness for the financial costs has create a surge of lawsuits and governments demanding fair prices for over a hundred million people worldwide.

Raising awareness is prompting the US government to start to critically look beyond costs.

This is the area where YOU CAN make a difference with awareness.

We need slacktivism, we need clicktivists.


The walls we build.

There are a lot of barriers to Hepatitis C (HCV) treatment.

Let's break 'em down, so we can break through 'em.

1. The biggest is awareness of the virus. Most of those infected with HCV don't know they have it.

2. The second is non-adherence. Basically patients don't meet up with specialists, cut corners and avoid tests. Typically it's only two or three tests at any given time, but it can be as high as seven if there is enough liver degradation.

3. Financial hurdles: this is a lot more complicated, in 2013  medical debt was the number one source of bankruptcy in the US. 2013 also saw the major roll outs of the ACA aka Obamacare. since then medical debt has fallen and medical costs have also gone down on average. In 2015 we can see the benefits of having most of the country insured.

New players: With the rise of the insured, drug companies and insurance companies are fighting to hold on to patients. finical support is becoming a regular part of both sector's products.

The scary part about this, is how realistic they are: services being rendered to 200-500% of poverty level. They're well aware of high medical costs, and a poverty level that is absolutely absurd.

Despite its decline, medical costs will be a large hurdle.

4. There is also something to be said for the combination of non-adherence and financial hurdles:

In 2008-2013 i had over 90 sick days used for medical related absences. most of which were planned for tests, treatments or appointments. I was nearly let go twice due to my excessive absences. I was saved by a law called FMLA.

About spring 2011 I ran out of paid sick days, which meant that every sick day was on my own dime. Which meant smaller pay checks to pay bigger bills.

To this day half my medical costs equal about half of my income.

5. Stigma: People don't like getting treatment because it means they probably need to tell someone about the problem. I've always been of the notion that a few coworkers of mine should know, just in case something happens. But many others i know, tell no one they work with. And often fear being shamed and judged by their coworkers. Or worse being targeted and being pressured to quit, or being fired for some other reason.

6. Psychiatric illness:

Yes, there's something wrong and while many with HCV suffer from irritability to severe depression. There is assistance in the form of all manner of therapy and counseling. This has its own hurdles.

7. Aegrescit Medendo:

"The cure is often worse than the illness itself." HCV has had a really weird last decade.

HCV is known as a silent killer, because often those who have it, aren't aware until it's already causing cirrhosis. Which means that for the bulk of people with HCV, they're going to have minimal side effects for the first few decades of its infection (oh, it's still destroying your liver, it's just being a ninja about it).

And up until 2013, side effects from treatment were horrible! So why would someone be inclined to make that switch until it rear's its ugly head. I mean besides their kids, loved ones, friends, and naturally their own life.

This hurdle is no longer the case.

From 2013 onward the (DAAs especially) treatments are relatively asymptomatic, and often only either emphasize or improve the patient's own symptoms.

Friday, June 19, 2015

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?

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.


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.

Thursday, June 18, 2015

Package from down under!

Awww yes! I just got an amazing care package from a friend and fellow hep c advocate! Awww yes Thank you for the TimTams Grace!