About Me

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

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!

Wednesday, June 10, 2015

Cold compresses and hot soups

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

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

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

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

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

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

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

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

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

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

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

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

Thursday, June 4, 2015

Risky Business.

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

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

Loss by Lycanium

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

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

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

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

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

Tuesday, June 2, 2015

They're gonna shove what down my throat?

Next Week I'll be under the knife so to speak. Every 4-6 months I go in for an outpatient surgery. There's not really a knife involved there is however a scope, some bands and other odd-looking tools. The procedure is called an Endoscopy.

The regular procedure started occupying my calendar after an incident in 2011. I felt weak, light headed, had unusual breath, stomach pain and black tarry stool. I pushed through it for five days before going to urgent care where they explained to me the severity of what was happening. I was bleeding internally through ruptured veins in my esophagus. Since there was a lot of blood in my stomach they used a Balloon Tamponade.

Balloon Tamponade

When I went in the first time, they used this incredibly painful contraption, made all the more painful thanks to the ambulance ride across town. I had the pleasure of watching the dried blood get pulled from my stomach through my nose for a few hours. They also gave me morphine, which just makes me feel like I'm on fire.

Since then, bleeds have happened half a dozen times, varying from catching it on my routine endoscopy, to a blood transfusion and trip to the ICU.

There are several versions of an endoscopy. What I will be doing next week is an Upper GI Endoscopy, which means they'll be looking at my esophagus down to the stomach entrance. It's a rather quick procedure typically taking a few minutes, longer when banding occurs. In the US we use anesthetic to minimize the discomfort and make the process faster. Some people will retch regardless,
I am unfortunately one of those people. When you've got a tube down your throat and you begin to retch, it becomes more likely to burst a vein.

But that's probably the best time to burst a vein, since the doc can fix it real quick.

The banding process is interesting. Essentially a rubber band ties off the bleeding vein, causing them to balloon and completely rupture. The residual blood is digested and reabsorbed.

If you happen to get banded, the throat becomes incredibly sensitive, and it's a soft food diet for a few days to a week. So if you suspect you've got varices have some pudding, soup, milk, juice, yogurt at the ready.

I also prep by shaving my face the day prior, while it's not necessary, it does help make sure they don't break your lips, or give ya some hardcore chaffing from the gag.

an example of an endoscopy gag

It can also be a pain in the neck, literally. The discomfort from an endoscopy typically sticks with me for four days to a week. If i get banded, it's a week to three depending upon the bleeders and how much i retched during the procedure.

Typically the discomfort goes away quickly, unless you retch a lot, then it sticks with you.

In addition to my procedure next week, i may find out a little more about the future of my treatment.