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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!

Friday, January 26, 2018

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.

Thursday, January 25, 2018

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.

Friday, September 8, 2017

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.

Monday, April 24, 2017

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:

Friday, March 31, 2017

Tuesday, March 14, 2017


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.


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

Friday, March 10, 2017


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.