Mario is free to use the now empty Hep C pipeline

Although, based on his history of drug use he's more inclined to die from eating the wrong mushroom than from Hep C, but I digress.

Since 2011, DAAs have been coming down the Hep C pipeline, until now. 2017 marked the year where announcements of new meds not only slowed its pace, but many were cancelled. Janssen, as of Sept. 2017 discontinued use of Olysio, a DAA which acted as part of a combination therapy, the only lone NS3/4 Protease inhibitor. Without a unique NS3/4 inhibitor, combination therapies will be more likely to include combination meds like Harvoni. Most meds target the NS5a or NS5b cleavage point, which means when a patient has RAVs which prevent that protease inhibitor from working at that cleavage point, it becomes harder to target the virus.

As Gilead and AbbVie continued to push on with newer iterations of their Hep C treatment meds, Merck abandoned two drugs which were currently in the Hep C Pipeline. At an 8 week price point of $26,400, Mavyret is dragging Gilead's Vosevi and Epclusa to push not for lower prices but shorter treatment durations to lower the price point to insurers. Merck's treatment is still standing at its 12 week price point of around $54,000 making competition with the Pan-genomic Mavyret almost impossible. Mavyret contains an NS 3/4 and an NS5a inhibitor, whereas Epclusa targets NS5a and NS5b cleavage points. These subtle differences have an impact on patient efficacy due to RAVs which affect these cleavage points.

The empty pipeline means that if a cure cannot be found within these combinations insurers decide, then patients may die. As with more 2 in 1 pills like Epclusa and Mavyret, it will become harder for patients to find individualized therapies.

How the Pharma War for Hep C could affect treatment outcomes.

Pharma drug wars these days make headlines for typically nefarious reasons.
More typically when Pharma companies are turned into pieces of an investment machine and no longer commit as much energy to research* and instead focus on paying their investors.

The Hep C drug market was blowing up from 2014 until 2016, 2017 saw some of the largest halts in manufacturing of treatments. But with an estimated five million Americans yet to be cured, it's not a lack of demand that does it. Janssen, as of Sept. 2017 discontinued use of Olysio, a DAA which acted as part of a combination therapy, one I took back in 2014.

Merck having finally rejoined the game, made headlines with its price cutting Zepatier. As Gilead and AbbVie continued to push on with newer iterations of their Hep C treatment meds, Merck abandoned two drugs which were currently in the Hep C Pipeline. At an 8 week price point of $26,400, Mavyret is dragging Gilead's Vosevi and Epclusa to push not for lower prices but shorter treatment durations to lower the price point to insurers.

The economic constraints which control these drug prices have little to do with consumer needs, they're based on acceptable prices by insurers. Which means that the lowest price to them, is what will reign. Without going into the complex nature of these kickbacks and relationships, the bottom-line is that insurers aren't picking the best meds for their patients.

Well at least they're FDA approved

Each of these combinations has a different efficacy based on that person's genotype and subtype, and while Epclusa and Mavyret are both touted as pan-genomic, they lack the core mechanisms to back up that claim. Having looked at Epclusa's Mechanisms, both of my doctors and myself were leery to go on it having failed Harvoni. When someone fails treatments they develop a type of resistant polymorphism, or RAVs. These RAVs make the claim of Pan-Genomic treatment impossible from the get go. RAVs often develop during a treatment, which causes a person to fail the treatment. The issue at hand is that shorter treatments more typically work for newly diagnosed and patients who haven't developed into F2 Fibrosis. But patients which more fibrosis run the risk of developing RAVs as they need longer treatment durations. This comes with a challenge when a doctor requests a 12 week round for a patient, and is approved for 8.

What this leads to is, exactly how I was approved: Off-Label approval. The doc can request the same meds as Off-label and have more control. The downside is that it requires a savvy doc and it is rarely extended. This means that people who need meds who don't have a solid relationship with their doc, or don't have a committed doc, they might not get the right treatment.

With insurance premiums on the rise, it's hard to say how many insurers will carry more than one option in the future.


Research* is primarily paid for via government grants, smaller labs usually do most of the leg work and are acquired by larger manufacturers who have both the means of production and sales channels, but seldom devote time or money to research of their own beyond required government tests.

Oh God

In 2011 I noticed a familiar feeling in my throat and a lightheadedness that comes from anemia.

We rushed to the ER. A line of people sat waiting while I turned pale on one of the few remaining chairs. My brows furrowed and struggled to hold back something deep in my stomach. "I need a bowl" I asked the nurse at the front. She would regret the speed at which she retrieved it. Moments later bowl in hand I began to projectile vomit all over the ER. a steady stream of red blood bounced into the bowl and onto the floor.

Suddenly I wasn't in line anymore.

I would proceed to lose more and more blood over the next few days as they fit me for a 16 gauge to transfuse some B+ blood. I had little idea how close to death I was. The upper endoscopy allowed them to tie off the multiple bleeding varices and days later I would have to end my third treatment. It was my second brush with death. My mother had always hoped that my experiences might bring me closer to God.

My uncle being a Reverend, Priest and Monk she thought that maybe I would be involved some way with the faith. But no matter how close I came to death, no matter what miracles, coincidences or events would occur, my faith wouldn't change.


To others with HCV, to my fellow dragonslayers,

When we are faced with our mortality we can choose to see things as they are. To abandon our perception, as best we can. For some that comes through faith. But it doesn't matter how you find it, it's the same understanding.

We are small, that the collective whole of us will always determine our fate. But it is that humility that allows us to grow. Because when we see ourselves as the very small things we are, we can seek the largeness of joining others. With others we can become truly larger than life. Faith provides us with a map to humility and strength through restraint. Some of us prefer to wander and blaze our own paths.

If you find yourself questioning your faith, it's nothing to worry. We're all still in the same place, find the path that helps you.

Do not burden yourself with the worry of abandoning your Creator, or adopting a new faith. Some may view this as a test of faith, others as proof there is no God.

They can't both be wrong, but they can both be right. Whatever conclusion you come to, the thing that matters is that you have a dragon to fight. And it demands your attention.

So take the shield that friends and family can offer, the sword from your doctor, and what courage you have and fight. Hope is for those who cannot fight themselves. You can, and you must.

A look inside me.

Well, what I used to be.

The images below are of my former liver, the damage of thirty years of Viral Hepatitis C (HCV).

The images are graphic, so please be warned now, they are unlike anything I have ever posted before.

These images are of me and as such I am the original owner and retain the rights to circulate the images as I see fit. If you would like to borrow the imagery, please ask.

In honor of National Donate Life month, This is why i needed a transplant liver.

This was my liver's limit.

This is what a healthy liver should ideally look like:

Resistance profile

This is why five treatments failed.
This is my HCV RAV list.

Zero

Not the ghost dog from Tim Burton's The Nightmare Before Christmas.
Although that is one of my favorite Disney movies.

The reason why it is one of my favorite movies is because Jack Skellington (the main character) struggles with not only his own identity, but that of the town's. He was trapped in Halloween Town until he followed Zero out into the woods.

He needed Zero to nudge him in the right direction.

Zero, helped him overcome the fog, even though it would ultimately crush him, he rose from the wrecked attempt to revitalize himself and his town.

He rose to ultimately find a new identity, separate from the darkness he found within himself. It was his failures that gave rise to his success and it all happened because of a Zero.

To understand why this antihero means so much to me, isn't so hard.

Monday, March 13th, 2017 I found out I have an undetectable viral load, in other words, a Zero.

I've followed my Zero before, and I've crashed, but now that I've risen from the graveyard so to speak (Shit, I left that part out, this is why I'd be a terrible narrator, anyway so Jack gets shot from the sky and ends up in a graveyard where he reflects on his failures and saves Christmas. Even though he kinda wrecked it in the first place, the point is that the graveyard is where he did it. Okay, back to the emotionally charged story of rebirth and all that.)

My Transplant gave me time to reflect, (Yea, I had one of those, I'll tell you about it sometime... It's a long story) it gave me a renewed energy to take on what I want from life.

Like Jack I'd resigned much of myself to the darkness, hope is always there but my last few months felt more like acceptance than hope.

My transplant changed that, but it didn't shake the underlying problem. I still had HCV. A little over six weeks prior to my Zero, I began a combination treatment of Sovaldi, Zepatier, and Ribavirin.

Now I'm here again, following my Zero into the night. I know you've probably been waiting for the happy ending but I'm sorry about how long this movie is, 86 minutes just isn't enough time.

I've put on thirty five pounds since December, It only took me a month after the transplant to start dating again, and for the most part I assume this is what normal feels like.

But this is where the rebirth thing changes.

Because I need your help.

You.
Specifically.

I wrote a lil bit about how the ACA saved my life, but it's more than that.


The proposed replacement will create brackets of insolvency. If you are sick, you will eventually find yourself facing exponential cost increases as time goes by.

Unless you happen to make over 250k per year.

If you find yourself in delinquent medical debt, the biggest benefit of the AHCA(the ACA replacement;) the Health Savings Account increases, suddenly become useless.

Last year my medical costs consumed ~35% of my income. This year, because of Medicare I'm looking at ~20%, next year I will no longer be on Medicare.


If the AHCA(the ACA replacement) passes I will see my healthcare costs rise to 50-60% of my annual income.

The reason for its variability is because with no mandate, insurance premiums will rise and the proposed tax credit doesn't even touch me because I barely make enough income to be taxed as it is.

It drops Medicaid eligibility to 100% of the poverty rate, its static tax credit doesn't lower premium costs for anyone who actively uses insurance. The 30% continuation fee creates no incentive to buy insurance because its threshold is too variable to have any form of consistent applicability.

If you make 18,400 and pay $59 per month for a bronze plan, that plan increases in price to $270. If you are 29, you can receive a $2,000 tax credit, at that income you'll max it out, assuming you have no other deductions or credits. The cost is comparatively $708(under the ACA) vs. $1240(under the AHCA) annually.

This also doesn't assume out of pockets that can max out under deductibles, which historically speaking increase when there are less payers and more risk per payer, nor the increases in premium pricing, nor the unusual requirements for maternity and abortion exclusion policies, ad nauseam.

(Why did I go with 18,400? Because that was my annual income whilst attending college, most articles focus on how this affects the elderly and the sick. And while it affects them absurdly more I wanted to show how it affects an average college kid as well. I didn't bother with gender because of a weird disparity: women use medical services more often than men although men tend to need more services than women over their lifetime. With that I'm going to assume that minimal bronze level care is all that's needed.)

Why average? Because healthy is rarer than having an illness or ailment.

The bill falls short of what it is"replacing" at its most effective point for the average young American.


As someone grows older it doesn't scale with any actuarial reality and instead uses ten year age brackets to increase that credit by $500 each time.


To make this more penalizing for being sick, the 30% continuation fee is based on your past level of care. So if someone had bronze care at $270, and another person had platinum care at $460 they would pay $81 or $131 respectively.

The bill also suggests that this amount is to be charged on a monthly basis transforming a penalty of a few hundred dollars to nearly a thousand dollars annually on the low end. That money no longer goes to pay for the system but rather instead to insurers for what I can only describe as faith-based economics. the only principle that could possibly support this is that we should trust an insurance company to lower prices now that they're making more profit. Certainly it's easy to see why I call this faith-based economics.

But here's where it gets really weird.


So how does that work when you fall at 101-136% of poverty. Because Medicaid will no longer be covered for the near poor under the AHCA. Will the states arbitrarily determine how that continuation fee is levied? Will they use their MCO(managed care organization) to determine that rate?

Because the bill fails to correctly qualify this there will be countless legal disputes attempting to resolve it.

As the bill stands now, there is an incentive to avoid the fee entirely if a person does not have insurance. Because the incentive of the continuation fee does not apply to them until they obtain coverage.

This means that it actually disincentivizes health insurance for those who are currently uninsured.



We can do better. Remind our representatives that we must do better.

Contact your Representative


Contact your Senator

Sequitur

My mind and heart are racing, but they'll be no winner.

Waiting for a phone call that will determine your life is nerve-racking.

I've been here before.
Too many times.

Every treatment is terribly exciting, because it could cure me. But based on my experience, it won't.

There is little I can do to help the process, little I can do to find out what's going on.

I suspect that the reason I don't get anxious in most things, is because I'm so focused on this. I've learned to calm my mind, and ease my heart.

But there are moments that bend me out of joint. I've waited for phone calls for years:

"I'm sorry."
"It can't be helped."
"They'll be another one."
"There always is."

The struggle is remembering that it's not me. It's something that happened to me.

In many ways my formative years developed around the notion that because of it, people treat me differently.

But I wish that were my only problem, because that I can deal with, I can affect.

But this.... I can't.

Information is my tool for success.
But it's a double-edged sword.
The more I know, the more I understand my limitations.

Every treatment means four chances.
But I've never been past my first chance.

To seize that feeling when I know my existence isn't burdensome. Was a flicker for brief moments in my life.

To say that depression follows right behind me doesn't give the stigma, the ailments, the fear a standing chance.

I grew up with this idea that I walk beside death. And he's been my least favorite friend this entire time.

But he's followed by something too.

What is harder to see is that hope, clarity, friendship and joy follow him.

Which means they're right here with me just as close as the others. But if I don't​ adjust my perspective, the angle makes them appear farther away, like a sideview mirror.

But they're here, I just have to remind myself.

They're always here.

This isn't an interview: Me to me.

My name is Rick Nash, as I write this, I am thirty years of age and soon I'll be one year older.

This birthday is special to me.

Because it is one I didn't expect to necessarily have.

When I was in summer of my seventh grade year, I was diagnosed with Hepatitis C ( HCV.) One of the key elements I took from that doctor's appointment was that I would need a transplant around 30, or die. And given the knowledge he had and the virility of my, to be later understood as, variant strain, a transplant would only extend my life a short period of time.

It was a prediction that I have fought against my entire life. Two months ago, I received a liver transplant. And presently I am on treatment for HCV, my viral load fell from 100 million to 33,000 at present following four days of treatment.

I am not yet out of the woods, but I'm better off than he predicted. Because he also believed that my state would be far more impacted by the virus.

I stay healthy otherwise, and a life of keeping myself that way has helped me survive. But by no means could I be writing this now without the support of others near and far.

So this isn't an interview, it's just a format to help isolate certain issues, but what are we talking about?

Presently we are in dire straits politically, and many don't understand just what the stakes are.

I'm talking about the ACA aka Obamacare.

First off, I want you to know that I am biased. After all without the ACA, I wouldn't be here. To make this more complicated I'm going to state that I'm a registered Republican, always have been. In fact, I come from a line of Republicans, my family has been here since Coolidge and I take pride in this.

So we're essentially talking about how the ACA/Obamacare saved my life.

You've had a preexisting condition your entire life, one that insurance companies actively prefer to deny treatment for, how has that impacted your life?

I've been aware of healthcare policies and health insurance since high school. I learned how to understand benefits from my mom, who has worked in HR for as long as I've been alive. My senior year in college I began looking for a job that would give me the benefits I needed. I focused more on benefits packages than compensation, because of the high costs I would pay otherwise.

My first failed treatment in 2008 showed me the price to lose insurance. That treatment would have cost me over $60,000 even having failed and stopped halfway through. I graduated in 2008, and like many others at the start of the recession, finding any decent paying job was a challenge.

When I graduated I realized that I would need to stay in school full-time until I could get a job to so as to not lose health insurance. So I enrolled in classes and worked 25-39 hours per week. When I found an available promotion, I seized it. I took a chance and began a second treatment, and while I was working 39 hours a week and making a living wage, in order to have benefits, I still went to school full-time.

I was lucky in that four months before I turned 25( my parents' insurance had a policy that allows students under 25 to be on their parents' plan) I managed to find a job with benefits.

That next year in 2011, I planned on starting treatment. With a solid job I could try the one that would eventually cure my mom. But a week before an esophageal bleeding episode would send me into the hospital, I was pink slipped. To make this more confusing, it would be recalled, and sent again twice.

After receiving my MELD Score of 14, I began to look for a new job. Thankfully my friends knew of an opening and I started later that year.

There was one problem. The company used a temp service to hire its own employees allowing them to bypass benefits. Using a temp agency like this is common, and lives in a legal gray zone. The temp agency can't exclusively cater to one company and/or be owned by the company.

Thankfully the ACA stepped in twofold: it extended my coverage until 26, and my preexisting condition was no longer a coverage concern.

That being said, the ACA was new and still very shaky, and insurance companies can retroactively deny coverage.

So I prepared myself for a potential situation wherein the ACA is repealed and my insurance retroactively kicks me off of it, using my preexisting condition as a reason.

What this meant for me is that I would need to use COBRA to extend coverage until I would start my new insurance in April. So for two months I would see nine hundred dollars a month fade away into nothing to insure my insurance would still carry me.

What would have happened without the ACA?

Without the ACA I would presently still be in debt from a six month coverage gap. Because as I would begin my new job, my left femur was injured in a car accident. While her insurance covered the losses, it was reimbursed months after the collision. I would not have been able to cover my medical bills, or any other incidentals. My HCV treatment without insurance was over $100,000 and the medical care otherwise meant I hit max out of pocket on a yearly basis.

Meaning I would have no choice but accumulate unpayable amounts of debt with the hope that bankruptcy could possibly save me. Thus limit my housing options, my ability to cover future medical costs, and any potential use of my economics degree. Essentially a recipe for homelessness.

Thankfully, the ACA does exist, so that didn't happen.

Those two parts of the ACA/Obamacare legislation were vital in your life, how else has it affected you?

After the third treatment failed at the end of 2012, my symptoms began to worsen.

Ascities, an extreme form of water retention, became an issue of vigilance. While I was prescribed a solution in the form of diuretics, I would only take them occasionally. Because if I took them regularly, my electrolyte imbalance was such that my legs would randomly spasm out of control.

I would find a method that would keep me moving and alleviate the issue: Balancing my electrolytes. While I couldn't control how my liver used them, I could make sure I was always consuming a specific amount.

The ACA required restaurants of a certain size to post nutritional information, and increased requirements on packaged foods. Without that, it would have been incredibly challenging to navigate.

The amount of magnesium, sodium, potassium, sugar, and water would change, and I learned how to understand each different pain and what it associated with. It took months to find that balance. Unfortunately, I was terminated at the end of 2013. While the termination was unlawful and discriminatory, fighting it wasn't an option. While I was legally disabled, disability would take time and would not be enough to cover the cost of health insurance. While it did allow MediCal/Medicaid, my treatment wouldn't have been covered under it at that time. So I worked as much as I could, enough to obtain insurance.

Wait, you were legally disabled, why didn't you have disability Medicare?

When you become disabled, it can take between two and three years until you can have access to Disability Medicare. I guess they hope that you die before you need it. Because, of all the laws and decisions I've read, I can't figure what their rationale is.

Without a job I was frantically familiarizing myself with Covered California.

Covered California is the California specific version of Healthcare.Gov, the ACA marketplace, there are a lot of mixed feelings about its pricing, where do you stand?

First off, the marketplace prices are set by private insurance companies. And because of this marketplace, smaller locally based hospital-insurance hybrids have been growing. The prices are still primarily controlled by two elements: the top four insurers, and the banks that are invested in these insurance companies.

Sounds like you're into conspiracy theories.

Technically, that's what this is, they're conspiring to control prices. We have no way to correct this market inequality besides government action.

The ACA allowed me access to insurance, and because my income was eligible for the credit I was able to purchase an affordable plan and keep my doctor.

It allowed me to postpone my death by a year as I zeroed out on my fourth treatment. The victory was short lived as I hit my out of pocket maximum, a four thousand dollar deductible and a week in the hospital after a run in with C.Diff at a diner. The treatment had failed and the virus was back in the millions.

Thankfully, I soon began a fifth treatment. The year ended and new insurance plans came up, the one I was on previously was shuffled a bit so they could legally increase the price.

The plan increased in price by about forty dollars per month, a 13% increase with few noticeable changes in benefits. While irritating and burdensome, it was still far better than the alternative. Each of these treatments combined cost me out of pocket only about $12,000. Which may sound absurd for an effective income of $18,000 per year but remember that without it, if I could even get the treatment, I would be out over $300,000 on treatments alone.
To date my cumulative bill to insurance total is approaching six million dollars.
TIL: I'm not a cheap date.

It was worth it though, you were cured, right?

No, the fifth treatment failed, and within a year my liver went from an average MELD of 20 to 30. I was steadily dying, and it was visible. To hide the jaundice I maintained a tan; however, by June the jaundice made me look more orange than anything else.

My treatment was postponed as I was no longer allowed treatment due to my high MELD score, and so I waited by my phone. I had been on the transplant list nearly three years by this point and only received two calls before September of last year.


Before I would be between hospitalizations near the end of the year, my Disability Medicare finally came in. While it is more expensive per month than my previous plan, I was able to have three weeks of hospital stays, a week of at-home nursing, and dozens of RXs taken care of for very manageable copays... Oh, also a liver transplant and subsequent medication.

It sounds like the ACA was the bridge before Medicare for you, was that always the plan?

No, no one means to be sick, I did everything in my power to live and utilize the tools I had access to. I didn't want to get to the point where I needed Medicare. But I can say this comparatively, having it is one of the most relieving insurance plans I've had.

So you're alive today because of the ACA and Medicare, how do you feel about the repeal and replace?

I'm interested to watch as the GOP replaces The ACA/Obamacare with The ACA/Obamacare or Ryancare.

Don't you mean Trumpcare?

No, Trump has nothing to do with helping anyone but himself, while I disagree with Paul D Ryan on most things, he is the congressman who will craft a replacement. He has been at the head of this opposition since the ACA came into being.

Like the Sanders v Cruz debate, the GOP wants to keep things vague, they don't stand for anything until the day they vote. Unless they author/co-author legislation. It's their M.O. because if you haven't taken a stance, citizens are less likely to be angry with your decision.

The new Right to Try legislation will most likely fuse into an Obamacare replacement.

We can change this, we can make sure we have a good healthcare system. Just call your local Congressperson and/or Senator and tell them what you like or don't like about the ACA/Obamacare.

A legal document must be read through and through, to understand it's gravity. I say gravity because it doesn't just affect its intended target, it affects everything around it. The ACA aka Obamacare is one of the most powerful pieces of legislation I have seen in my lifetime. It saves lives, improved lives, expanded Medicaid to millions and expanded potential millions of dollars in productivity while decreasing the reliance on (medical bill related) bankruptcy.

 After all, a healthy workforce earns more, spends more, and lives longer.

Salternatives

Damnit, who turned the electrolytes off?

The last week of September always seems to be a rough time in my life. Whether it's the end of a serious relationship, the catastrophic failing of treatment or simply my consistent return to a decompensated state, the time never seems to be so grand.

It's become such a theme in my life that I can't seem to kick the Green Day song until it feels like October again.

As a cirrhotic liver patient, a low sodium diet is routine and a relatively high protein diet helps me rebuild the muscle loss due to my decompensated state.

When the liver gets to a certain point, it stops giving a shit about this and demands more sodium. I started to notice a desire for salty foods unlike ever before but I really thought little of it. My body even began rejecting higher levels of protein, either by making it feel unappealing or forcing me to eject it from my system.

With all the other changes going on at the time it was hard to dissociate it with some kind of change in my system. As I had been moving living situations, my body began to get more and more tired. Eventually after a week of moving boxes and unboxing things it became crunch time in retrieving and wrapping up the old apartment. Unfortunately three days before we were supposed to vacate I had spent more time being exhausted than being of much use. Wednesday 9/28 was the last straw, halfway through the day I was brought over to my parent's house as I could hardly stand. There I was watched carefully as I began to grow more and more tired still. On Thursday morning I briefly felt better but as the day would go I began to get lethargic and my ability to stand was compromised due to balance issues. I went to urgent care as I had a terrible experience with the ER a month ago. After waiting for near an hour for some kind of answer from the attending physician my father and I left for the ER as they alone could quickly handle the situation. Traffic that night caused us to wait further but thankfully during our waiting my GI called me and she helped prep the ER for my arrival.

The pain became excruciating, I was in tears. My mother, who worked nearby, was able to help walk me through the check in process. With my doctor having prepped my entry and my visibly decaying jaundice, the pain alongside made the proceeding moments hazy to recall. As they began to gather the necessary information as to what was happening with me they began my IV. An intern introducing herself as such asked if I would be okay with her attempt at the IV. As my veins are like highways it's hard to miss, but it does happen. As it would this time, the second spot they chose was less desirable and the needle stick was also painful. The pain medication would ease this issue over the course of the next few days.

As they moved me to my room they tested the blood they'd drawn to get a better picture as to what was going on. As the night would go, the pain would come and go but my tiredness remained. My mother stayed with me the first night to assist with minor things as nurses and their aides were slow to respond during the evenings. The second night my friend stayed with me, it was unexpected, and he was extremely helpful and helped make my stay easier. By that Saturday we had come to find the culprits of My extreme exhaustion and pain. My sodium was dangerously low, my calcium was as well, and my ammonia was very high.

When sodium gets too low it can cause seizures and exhaustion, if it gets too low it could kill me.

My calcium being low only added to those elements, and ammonia being so high puts me at risk for serious brain damage and a potential coma.

The interesting phenomenon is that I do not seem to display the typical flapping that occurs with the hands of patients with Hepatic Encephalopathy.

They continued my liquid restriction(1200mls) to help prevent me from losing more salt. It was arguably one of the harder things to deal with as everything made me thirsty.

On Sunday night I had delayed my pain meds to return a phone call.

The result of the call and reaction left me stressed out and upset, the next day I was taken more seriously and the nurses and aides almost began to know me as I'd been there so long.

I am on the liver transplant list, and due to my presently high bilirubin my MELD score puts me near the top. Often I am second or third in line and as an alternative I am contacted for the potential transplant.

I got a call at 10:49pm from transplant

I explained to transplant that I was presently in the hospital, they said they'd need to speak with a nurse

and hear my charts over the phone or faxed, so I asked my nurse "to come here now to assist transplant for me so that they can determine if I'm in the condition to transfer over."

and explained that I need her now. 'immediately as this is a time sensitive matter'
(Normally a nurse leaves a direct line for me to contact them, she however did not feel the need to do so. Telling me she didn't have a phone.)

In the mean time I was talking with transplant about my options and when speaking with them I told them how slow the nurses/CNAs had been the last few times I've asked for anything they said to have me call them back when my nurse arrives.

At 10:51pm I had asked for any available nurse.

At 11:10pm I again explained the urgency of the situation and explained it once more

At 11:15pm a CNA came in and I explained the situation AGAIN, and said get me my nurse now.

At 11:19pm she moseys in.

I explain the situation to her, her response first was that of disbelief "transplant is calling so late at night?"

So I told her: yes, that is correct, called them back and handed her the phone

She read off the numbers to them and then passed me back over

And they explained that they'd need to transfer me hospitals now.

*Meanwhile my nurse wanders out*

Engrossed in the conversation I explained that they should begin the transplant procedures and I would contact my parents to make the decision.

As I am not in the emotional or psychological state to make this choice.

As I notice my nurse's absence, I message over that I need my nurse to begin transfer procedures

And the lady on the end of the call button messages me, "okay why don't you wait to tell her yourself"

So I tell her NO. THIS IS THEIR NUMBER. HAVE MY NURSE CALL THEM.

The Nurse or CNA on the call button begrudgingly wrote the number down.

I contacted my parents, and after about 15 min of deliberation both say no.

So I call transplant and cancel the request then call my nurse over the button

And explain we no longer need to go through with it. As it turns out this was unnecessary as She hadn't even started faxing over the paperwork. And then, and I asked for ice, explaining my last pink cup (500mls) she instead decided that I only have 300 mls left for the day instead of 500, refusing to get my last cup and reducing it based on her whimsy. I asked for my pain medication, and just cried from the entire experience. It's a tough call to take, and a horrid realization that as a transplant patient not only does someone need to die for me to have one, another person could die as a result of my taking that liver over them. It's something that goes through my head every time I get this call.
I took down notes using my call log as a time log to note who I talked to/when.

When I explained the situation to the nurses the next day, they took me seriously as I thumbed through the notes I'd taken that night. My nurses indicated to me that my nurse from the previous night did in fact have a direct line.

These facts made me feel like my nurse from the previous night didn't trust me and didn't take me seriously. So when every nurse I spoke with afterward showed a modicum of respect I was extremely thankful. Several nurses and doctors came in to help build a better system for dealing with transplant patients and took my criticisms to heart, from those conversations on I got along very well with most my nurses, as I normally do.

I was switched over to a normal diet with less protein. So my diet went from 1000mgs salt with 100g protein to 2000mgs salt with 60gs protein, in a 3,500 calorie diet.

Too much protein builds up ammonia, which causes hepatic encephalopathy in those with decompensated livers.

The sensitivity and pain remained, and as magnesium was fed into my IV, it burned so much that I required pain meds before and after it. My body's electrolytes were being forcibly rebalanced, and overall I had begun to feel better.

I could walk around and I began with small walks on my own around my room, eventually expanding my walking across the floor, to laps around the floor itself. Picking up saltines along the way. My docs worked with me to assesses how to manage the pain when I left the hospital and he suggested Tramadol.

Reluctantly I began taking this new pain med.

It took a few hours to release me from the hospital, but in that time I put in an order for delicious ramen soup from a local ramen house, as I needed to maintain my new sodium levels.

I drew a happy Halloween Nightmare Before Christmas message on my board as I left. With the IV out of my arm, I could see the full extent of the hematoma.

 

Home! Even when you've got highways for veins, people can still miss. I'm out of the hospital. My sodium and calcium levels were dangerously low. As a cirrhotic liver patient it's important to watch my electrolytes like a hawk. As my liver had a very sudden about face regarding it's sodium needs. Magnesium and potassium via IV burns, especially if the IV isn't a great stick to begin with. #HCVME #blood #electrolytes #liver #cirrhosis

A photo posted by Rick Nash (@defnotricknash) on Oct 5, 2016 at 4:47pm PDT

During all of this; my friends stepped up and took care of every last bit of the move. They made time in their busy schedules to stop by and stay with me for good lengths of time, all the while helping me when I was unable. To say that I am grateful for them is hardly enough, this experience has made me appreciate them that much more.

I'd noticed many friends reach out to me via social media, even the date that I had to reschedule checked up on me. Although this was not my first rodeo, I've never felt so failed by my own body, and by my nurses. I've learned a lot of depressing things at each hospital visit I've had but this one was by far the most stressful and emotionally challenging.


Life is not easy, but in moments of need, those who are close to you, can make you feel more humble and grateful than you'd ever thought possible.

Deviated September

Yesterday was my fourth blood test, in the last month. My bilirubin and INR have been at a levels worry some enough to postpone treatment.
(The cost of a treatment is more than the meds alone, this month I spent over $350 out-of-pocket costs and that's with insurance!)

With the help of my family and advocates I was able to negotiate better terms on the price I can bear. But all of this is contingent on my having my present insurance and that I'd ordered and received it before I switch insurance September first.

In one day I switch insurance plans, the present Gilead plan offers mysupportpath to be used twice.
This is my third Gilead treatment, so it's hard trying to lobby for support.

While I'm pushing to get the hold/stop order from my doc removed, I'm also moving. (Which when you have health concerns requires certain things.)

If the stop order isn't removed I will have to go through the hoops I just went through before getting access to treatment.

It's about time.

That's what I'm losing. I'm at a point where each week that my liver continues to degrade I get worse off.
The weeks I lose waiting for treatment aren't just the time now, it's less time later.



To savor every day that I have, that is all i can do.

Wait and C again

I've spent more time in my life, waiting and seeing, than much else. Over the years since I was eighteen, I've spent a little less than two years of my life on a treatment for Hep C.

I had been looking at Zepatier as a potential treatment, and had devised a method by which I would be able to take it. However Epclusa was approved by the FDA days afterward, so we moved forward with that.
I am presently awaiting the Epclusa Treatment. While I've managed to get it approved I happened upon yet another snag.

My liver blood panels weren't looking too good. My bilirubin had shot up to nine, and now rests around six while my INR has gone down to 1.9 (for reference, and INR of: .9-1.2 is average, while a bilirubin level of .3-1.9 is average.)

Until my liver function starts to improve, I am again waiting. In the mean time an MRI and another blood test hopefully will show progress enough to begin treatment.

Overall the treatments have taught me the power of resilience, humility, and patience.

As I see it, I've waited my memorable life for a cure, what's a few more weeks?

To those awaiting treatment, sometimes all your efforts may seem in vain.
Dig deep, just a speck of hope, let it grow by holding the hands that help you.
Know that you are not alone, that others can be your champion when you lack the strength.
We may at times come across a canyon too great, but together we can build a bridge.

Fun fact: Naomi Judd is a spokesperson for the American Liver Foundation

Also super stoked that the NoHep website launched and the movement is happening: Elimination of Viral Hepatitis by 2030, NoHep

Berning Up

Bernie Sanders is an amazing candidate trying to uphold his ideals against the establishment. He doesn't play political games and he talks only about the issues.

Wait, sorry I messed that up.

Oh wait, no I didn't, he messed that up.

This is why I found him appealing as a candidate. That his idealistic solutions had tangible form which will usher in an era of liberalism within government.
This is what I felt walking away from rallies.

But more recently, Bernie released details of his healthcare plan. Which sounds like a wonderful plan.

But let's really start to give a shit for a second and think about how actually impossible everything he wants to do is.

Of all the candidates Bernie will face the most opposition. Why? Because without the Millennial vote in tow his political power is moot.

"That's not true! Older people vote for Bernie!"
Sure, but by worse margins than the numbers of millennials who support Clinton.

Democrats: 77%-12% Bernie doesn't exactly hold the torch of millennial voting. As for Clinton among Democrats: 65%-30% isn't that far away.

While Independents and unaffiliated can vote in the Democratic primary, the purpose of super-delegates serves as a political counterweight to those votes. Which basically affords us a lovely moral for the whole family: Rigging a political game is only "cheating" when you're not winning.

If the political opposition is so terrible to work with that their own speaker resigns, Sanders will be handcuffed politically. But I haven't said anything we all already didn't know.

Before I flew up to Sacramento, to speak in favor of an item on the budget proposal allocating funding for HCV testing statewide, I read something i couldn't believe. 

In talking with other advocates for HIV/AIDs and Viral Hepatitis, I was disappointed to find not a Bernie supporter among them.
When I returned home I took a closer look at his healthcare plan. And I realized why. Bernie Sanders is ever the idealist, and as such he doesn't consider the communities affected by his decisions. His plan requires multiple radical changes that if done would result in years of healthcare chaos, and if no one de-funds it, it still will be incredibly inflexible and result in patients dying waiting for treatment.

Sanders espouses Medicare for all, a single payer plan. The type of plan that Sanders would likely install would be reminiscent of Canada.

His plan calls for a replacement of our existing insurance system to a single payer government insurance. But...Insurance companies no longer resemble the behemoths they did before the Affordable Care Act (ACA). Because of the ACA, many new insurers have grown out of medical groups and Managed Care Organizations (MCOs). Local medical groups can offer better rates with a better focus on care and since the insurance companies are built into the hospital the overhead feeds the hospital as well. It's not ideal, but it's more responsive, compassionate an patient centered than ANY insurance system we have ever had public access to. It is an adaptation of Kaiser's model, and it works (better than it did previously).

Not understanding the transitional needs of patients between insurance agencies means sidelining prescription drugs, and medical appointments. Making for additional hurdles to the often kafka-esque nightmare that is transitioning between MediCal/Medicaid and any other insurance.

The politicking insanity of Sanders after Clinton's Nancy Reagan comment:

Girl, look at The Body
It works out.
Sexy, I know it. 

Keep in mind that Sanders' position on HIV/AIDS was not revealed until that gaffe, and it was done so intentionally alongside his own personal comments against Clinton. As previously mentioned, his/his staff's disrespect towards the HIV/AIDS coalition orgs shows his true colors, but regardless I held my breath waiting for May 25th to see what he would do.

The plan he presented in March (in conjunction with politically attacking Clinton after she tried to play to legitimizing her political experience as a FLOTUS by making some very embellished statements regarding Nancy Reagan's role in HIV/AIDS History ) remained the same after Sanders rescheduled meeting on the 25th.

And then he decided to re-package it...

He presents the same stances over and over again, and has demonstrated a general disrespect for the HIV/AIDS community.

Having Hepatitis C, with the liver damage I do...if I have one day without my prescription medications there is a high likelihood I will end up in a hospital. I know of many others with Hep C who are stuck waiting to get sick enough for treatment who would find themselves in even worse situations due to paperwork backlogs.

Millions of Americans have Viral Hepatitis, and thousands of them will die every year regardless of race, creed, political affiliation or income.

JK!

It's absurd how much it resembles a microcosm of the systemic problems within each community it affects.
Which is why it's so important to understand every perspective on these matters. The solutions in San Diego, or Compton, or Los Gatos will all be different.
Because fighting these diseases needs social and emotional support tools as much as it does medical, insurance and pharma reform.

The bottom-line is that saying he stands for people with Hepatitis and HIV/AIDs when he ignores our needs and listens to what he wants to hear is disrespectful, and to do so with such a nonchalant attitude... he doesn't stand for me and he doesn't understand that.

In a millennial homage to a questionable DNC nominee:

Outta matches, maybe I'd be better of with a tinder date
heart dropped, shame no profile for this candidate.
Are all he has group photos? It's so hard to pick him out.
He'd appeal to our grizzly population posing with a trout.
What is this insane lack of respect?
I'm off balance, out of checks.
Am i missing something, out of conned text.
No. Just really about the gender, the sex.
I thought he was supposed to be the last of the Silent Generation.
And there's hard turns up ahead but less for the white Caucasian.
I had the privilege of privilege but it is one voice within a crowd.
and we all deserve equal time on the mic, so quiet down.
not to be silent but to listen to others,
because that's what sets us apart, besides our mothers.
When it comes up not down to these perspectives
He should understand the model: Respect, Give.


I can no longer endorse Bernie Sanders.

#Berntout


You can follow some of the more absurd web antics of the clash between Bernie's newest conspiracy theories and HIV/AIDs activist Peter Staley 

Sanders is a weak idealistic candidate who has little consideration for the communities he represents.

His narrative is the big picture: (Democratic socialist) Idealistic structures that he has mentally concocted over his decades in government can be applied to fix real world issues.

He presents his narrative to communities he meets with and then tells them how it applies to them. He does not consider the perspectives of the communities he is engaging.

That's why I'm not voting for Ron Pau...I mean Bernie Sanders.

#Loaners

In celebration and recognition of Hepatitis awareness month, I made an Art.

One of the most difficult parts of dealing with the daily challenges of hepatitis is the stigma. It is empathy which lends us better perspective, so I chose to celebrate the phrase "Walking a mile in someone else's shoes."

The shoes are worn and weathered by all who've dawned them.
The finish highlights the brittle weaknesses of the shoes, feeding the imagery of the near broken appearance. But thanks to its new exterior, the shoes are water tight and stable once more.
Reminding me that perspective is just as powerful a force for the one sharing their shoes as it is for the one receiving.

#SomeoneElsesShoes
#Loaners
San Diego Liver Life Walk is May 11 Join us !

JOIN THE THUNDERCLAP

Is the Titanic technically an icebreaker?

Before online dating, ice breakers were relatively impersonal. Online dating has given us the benefit of the profile. The idea that we know a little bit about the person before actually engaging conversation.

In late February I decided to openly display my HCV status on my dating profile.

Before doing so I took to Reddit for some critiques. Unsurprisingly the voices of strangers echoed the voices of my friends in the leeriness of posting that I have Hep C.

I am still petrified that they might be right.

At first I was surprised to see my interactions double, likes increased. I assumed it was in response to my honesty about my status.

In the messages or in conversation, it was easy to see when they read/understood that I have HCV. The tone changed, questions changed, and I became more of a curio than a person.

This doesn't always happen, but when it does it's nauseating. HCV listing did not affect my ability to get new numbers. It did lead to longer interactions and more time before the initial first date though. My profile will only be up for a few more months as the dating process is (emotionally at the least) exhausting. Listing my status means I tell every person I date regardless of how far it goes, and that's a lot of elevator speeches about HCV.

To those of you without HCV or similar Invisible Disability (ID) stigma, it is rare to see the reaction like this. To wear ID stigma so openly when you don't need to... doesn't  generally happen.

I came across critics who's response to my posting of my HCV status, was "duh, What did you expect?" Or advising against listing it as a whole.

HCV is kinda odd in this experience. In many ways it shares the same intimacy fears that HIV can have. But HCV's side effects don't really kick into gear until sometimes decades after infection.

One of the reasons I'm doing this is because I want my generation to know how prevalent this disease is.

I want people with Hep C to know they're not alone.

I want it to be uncomfortable, that's how we change and grow.
And to know that after two months of listing my status, my response rates haven't changed... makes me smile a lil bit.

Numbers and Birds for scale:
To give you a better picture of just how frequently I mean, in a collective 4 years (in between relationships from 22-30) I've gone on around 200 first dates, and around 40 second-fifth dates.
Normally within a month period (between all apps) 4-5 new numbers.

The thing is, I use the app differently because I'm not looking for NSA or casual sex and I'm not looking to settle down. I'm looking to meet new people, if we click like we should then that typically translates to friendship. Every so often there's some passionate romantic blur, and something bigger.

There is something beautiful in finite experiences.

Breaking the ice with HCV isn't all that advisable unless you're very comfortable with yourself and your knowledge of it. Icebergs can still sink a ship.

Provocative Statements

Pamela Anderson and Kim Kardashian.

NSFW?

It doesn't matter what good they may do, their most provocative activism comes via their own power as sex symbols. The reason for this is that their names are so associated with sex that it's impossible to claim that it isn't a factor in how they promote a product, service, make a political or artistic statement.

Both Pam and Kim recently revealed nude photos in solidarity with the community they represent.
Kim chose International Women's Day, while Pam chose Hepatitis C.

(selfies and Kim Kardashian's essay located at end)

Kim Kardashian has the ability to hit on a public nerve in a very real way, she must be provocative for her brand to keep growing.

I do not make the assumption that the person she presents is the person that she is.
It's a work face, it's just that her product/brand is Kim Kardashian.

Kim knew that posting the picture would create a public conversation, she was fully willing to step forward by doing the same thing so many other people do with a selfie.

She released an essay to elaborate further along with more photos. The essay's irony in the first  paragraphs doesn't frame the articulated argument she was intending. She fails to see that our assumed prejudices pervert our beliefs until we shift our perspective. 


The depth and measure of art is not in its existence, but in the response to its existence.
And the selfie is so art right now.

Thankfully, the gasps from of those with higher moral fiber were met with the clash of the stances within feminism. Giving more exposure on all sides...All the while still promoting Kim Kardashian.

(Seeing all the reactions to Kim Kardashian's tweet, got me curious about the psychology behind it, and unfortunately there are presently only two studies, one American (men only) and another Polish(all adults) on the selfie, and they focus on subject rather than the audience reception.)

Compare the response to another sex symbol who released a nude on Instagram(IG) in November.

Pam Anderson released the nude on IG in November  to predominately positive responses.
Both women captioned their respective photos, and every aspect of the art in the photo is undoubtedly their signature style.

Wait...a second....IG doesn't allow nudes.  

Pam used it as an opportunity to remark about  how unaffordable the treatment is for the majority of those affected by Hep C.

Pam immediately set the tone of her message and her announcement took fresh advantage from the fall's political rally against pharmaceutical price gouging.

Both used their artistic license to carve a talking point on a diverse problem allowing more mainstream exposure.

Advocates and activists used the exposure to highlight key arguments within their respective communities.

Fantastic commentaries ,
Critical receptions,
Mainstream exposure,
and advocacy 

Oh, and me...shit...she's effective.

Since this is art, measuring the reaction within the community is the measure of the art's success.
The difference in reaction is telling. Both communities have had major escalating upsets and changes in the last few years on a global scale, and both suffer from a lack of unification. Both are also shaped by their diverse composition and intersectionality.

The critiques and responses above exemplify how willing we are to accept nudity as an artistic statement. Not only in their points but in one distinct choice. Whether or not to re-share the image.

For all groups the rationale to use/not use the image is based on readership reception.

After all.... why am I not showcasing both images right now? Because it's unprofessional.

Scroll down, I put them at the bottom so you can still browse this shit at work.

What this reception shows is that sexualized marketing is acceptable when the subject isn't the artist.
The artist chose a provocative photo to declare a statement, and to remove that provocative photo from the statement and use another photo is sexual objectification. Because at that point the statement she made is devalued by filtering it but still profiting from it.... Nah, I'm sure it's just professionalism.
.
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...
....
...
..
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make a wish
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..
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send this to 10 people in 10 seconds or your wish will never come true

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..
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Please
Forgive my unprofessionalism 

Pam Anderson

Kim Kardashian

Kim Kardashian's Essay

Hey, guys. I wanted to write a post elaborating on my tweets last night. In all seriousness, I never understand why people get so bothered by what other people choose to do with their lives.

I don’t do drugs, I hardly drink, I’ve never committed a crime — and yet I’m a bad role model for being proud of my body?

It always seems to come back around to my sex tape. Yes, a sex tape that was made 13 years ago. 13 YEARS AGO. Literally that lonnng ago. And people still want to talk about it?!?!

I lived through the embarrassment and fear, and decided to say who cares, do better, move on. I shouldn’t have to constantly be on the defense, listing off my accomplishments just to prove that I am more than something that happened 13 years ago.

Let’s move on, already. I have.

I am empowered by my body. I am empowered by my sexuality. I am empowered by feeling comfortable in my skin. I am empowered by showing the world my flaws and not being afraid of what anyone is going to say about me. And I hope that through this platform I have been given, I can encourage the same empowerment for girls and women all over the world.

I am empowered by my husband, who is so accepting and supportive and who has given me a newfound confidence in myself. He allows me to be me and loves me unconditionally.

I feel so lucky to have grown up surrounded by strong, driven, independent women. The life lessons I’ve learned from my sisters, my mother and my grandmother, I will pass along to my daughter. I want her to be proud of who she is. I want her to be comfortable in her body. I don’t want her to grow up in a world where she is made to feel less-than for embracing everything it means to be a woman.

It’s 2016. The body-shaming and slut-shaming — it’s like, enough is enough. I will not live my life dictated by the issues you have with my sexuality. You be you and let me be me.

I am a mother. I am a wife, a sister, a daughter, an entrepreneur and I am allowed to be sexy.

#happyinternationalwomensday'

Some Things Considered

I am an outlier,

But I am happy.

Treatment to cure is every person with Hep C's goal. When things get closer to the end it can consume us to find the keys to the locked exit doors. Even in my early 20s I gave up hope when Int/Riba failed, I grasped at straws and took the treatment again with a higher dosage.

That grasping, failing, created my first RAV, I had a q80k polymorphism. Failing a treatment is not simply continuing to have HCV but it also bears the risk of creating mutations, RAVs. 

So after failing Int/Rib/Incivek, Sovaldi/Olysio, Harvoni... I now have three mutations, RAVs.

I am an outlier, but one or two RAVs is common among experienced patients.

Zepatier, the drug i've been waiting for had a contradiction I was worried about. While previously I was unsure my Child-Pugh score; I confirmed that it is only A. Which means it shouldn't be as hard to get access to the meds.
Daklinza/Sovaldi/Olysio/Riba is another contender.

(to make things even more complicated, the existence of RAVs from a previous treatment does not indicate that the treatment will or will not necessarily fail)

Well....fuck.  There isn't enough longitudinal data for my situation on these meds to make the best decision. Why? Because breakthrough medications often lack the studies their non-breakthrough partners have at date of FDA approval.  Breakthrough therapies are not about the results, they're about maximizing the amount of time the patent is most profitable.

Zepatier will undoubtedly change the conversation about Hep C meds due to its lower price point and high efficacy in smaller groups as well as across Genotype 1 and 4.  I fear that this low price point will drive a "consumer's" choice in treatment. 

(Insurance agencies, Healthcare groups and Pharma companies make the real choice between medications before you even see em... which means 1/3 of the people deciding  give a shit about the patient. Fucking Trident has more support from leading dentists.) 

There are many combinations of Hep C meds for many different cases, each one with different efficacies. (Sovaldi ranges from 84-96% depending on subtype.)

The best drug/therapy to treat should be set by relative efficacy, not by price.

That being said, my condition is stable, I don't seem to be getting worse, nor am I getting better. If I keep up the healthy changes I've been making I may be able to stay where I am for a few years yet.

The key now is choosing the best treatment, which means waiting for more data. Thankfully the EASL (aka the International Liver Conference) is coming up next month, so we should have more information in the coming months.

In the meantime later this month I'll be making a trip to Portland and Seattle. Making stops in San Francisco, and Sacramento.

If you're along the route, ping me! 

I Heart DP

Oh shit, look that's me in there.

There may be spoilers. Head's up.

JK there are totally spoilers. Deadpool Deadpool Deadpool!

Is he here? Wait sorry, wrong fictional, fourth wall breaking character.

I wouldn't normally talk about a movie, but this super...hero(?) is important.

His name is Wade Wilson Aka Deadpool. For those of you not familiar with the story, he's a dirty mercenary with a heart of silver or a metal similar to gold. He's an antihero.

He is known for narrating his own story and breaking the fourth wall. And his superpower of regeneration is from a treatment to cure his cancer. 

With his voice guiding an audience its easy for them to understand this harsh and brutal universe, but the characters within see him interacting with the audience and believe him to be insane. This detachment from his own universe, is a core component of the insanity brought on by his origin story.

If we were without the narration, we would see the world as he does and the movie is jarring, confusing and violent.

Deadpool is a super "hero" for those of us with Chronic Pain, Mental illness, and Cancer.

Deadpool must endure constant chronic pain, due to his ability constantly fighting his cancer. His weapon x treatment also made him a touch psychotic.

As a person with a terminal illness and chronic pain, I loved being able to relate the tragic experience of diagnosis, the health care challenges, and his humor in the hospital.

From reaction to diagnosis to when Wade argues with Vanessa about priorities and the next step. While she went trough every avenue at her disposal to grasp for straws. His idea of not wanting to bring someone into the "shitshow" hit home in a very real way. The movie helped me see how ridiculous an idea this is, because we all have shit in our lives, we all have hardship at unknown times. We have to regard it as an aspect of our lives rather than as defining our character. Because it's how we react that determines character.  

His sense of humor feels comforting to me because I know that humor. It's a weird self deprecating brink of madness that finds itself in those resilient enough. In a sense it's being jaded by living.

Now on an even more personal level...

The dead pool being a board where members bet against each other to die. The dead pool is a game to deal with the reality of the trauma of life so close to death...

Between a few friends, we call ourselves lifers. We each have diseases that can cause us to die early on, so naturally we're in a life race to see who can die the fastest. There's no betting though. Oh, and no cheating (unless it adds time to the clock). So, When they explained the dead pool, I peed a little in excitement.

The weapon x treatment that Wade went through to become Deadpool felt familiar. Not that level of pain or superpowers, but rather the drugs themselves. The weapon x serum was derived from Wolverine's healing factor and applied to Wade to alter his DNA to combat the cancer.

This is similar to modern DAAs, Genomics is the basis for Sovaldi, Harvoni, Vikera Pak, etc. However, unlike the Weapon X program, the treatment just targets non-structural proteins and like doesn't give you superpowers. So to see a "similar" method was exciting.

I felt like there was an area where they played it safe...

Deadpool also reflects a modern dilemma with healthcare. The movie only touched on the overwhelming amount of options and information available for cancer treatment. To be able to give a patient's view of the process and financial turmoil, would have been so impactful. With a spokesman like Deadpool, the ability to critically poke at it without being too serious is a powerful superhero advocate.


There are plenty of movies that do as good a job or better, but there none of those grossed over a hundred and thirty million on their opening weekend. So...

Watch it. Watch it again, while eating a Chimichanga.

Zepatier Part Ugh

I have spent the better part of this past month re-writing this post, and on March 11, i will find out much more.

Because I legitimately don't know how to properly convey my despair and disappointment and fear at what will soon unfold.

I had been eagerly awaiting the release of Zepatier,  the announcement last month was terribly exciting.

Zepatier is a Hep C drug that deals with NS5A resistance,has a very high success rate, and is almost half the price of the leading treatments Harvoni and Sovaldi.

It's amazing, and it has shown to work very well in other harder to treat cases.


The drug has one small hitch.

Well, i think it kinda sucks like... a lot.

The FDA/Merck released a contraindication for the drug for use with patients who with child pugh score B or C

"ZEPATIER is contraindicated in patients with moderate or severe hepaticimpairment (ChildPugh·B or C) due to the expected significantly increased grazoprevir plasmaconcentration and the increased risk of alanine aminotransferase (ALT)elevations" - 

The contraindication does have a rationale beneath it.

In 1% of cases ALT levels raised 5X within in the first 8 weeks, Clearly, an indicative factor of a problem.

Unless it isn't.

Which it isn't.

Most instances self corrected soon after:

" During clinical trials with ZEPATIER with or without ribavirin, regardless of treatment duration, 1% (12/1599) of subjects experienced elevations of ALT from normal levels to greater than 5 times the ULN, generally at or after treatment week 8 (mean onset time 10 weeks, range 6-12 weeks). These late ALT elevations were typically asymptomatic. Most late ALT elevations resolved with ongoing therapy with ZEPATIER or after completion of therapy [see Warnings and Precautions (5.1)]. The frequency of late ALT elevations was higher in subjects with higher grazoprevir plasma concentrations [see Drug Interactions (7.1) and Clinical Pharmacology (12.3)]. The incidence of late ALT elevations was not affected by treatment duration. Cirrhosis was not a risk factor for late ALT elevations."

In fact the contraindication seems odd considering the big new DAAs carried no such contraindication:
 Sovaldi 
Harvoni 
Daklinza 

Olysio 

"Initial analysis of Zepatier’s label showed comparatively fewer AE(Adverse Effects)s (29 vs 41 for Sovaldi). Liver cirrhosis, the only ImportantMedical Event (IME) listed on the label, is largely associated with HCV and notwith the drug. "

So... Now it's time to figure out how the hell I get this drug, because I suspect this will be my last treatment. success or failure.
Further research should show it's true efficacy, which i feel will reflect poorly on Zepatier if the drug is prioritized because of its price-point rather than it's efficacy.