This isn’t an interview: Me to me.

(for those of you who would like to listen, rather than read, or just do both, I’ve recorded a reading of this entry )

My name is Rick Nash, just a few days ago i turned 31.

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 by 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 now remind you 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 prexisting 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 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 full time job with benefits. 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; 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 it’s own employees allowing them to bypass benefits, and their internal employee guidelines. 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 cause.

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. Which would limit my housing options, my ability to cover future medical costs, and any potential use of my economics degree.

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.

Ascites, 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 need to take them occasionally. Because if I failed to, and kept to them, 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 not only access, but 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 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 and 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.

https://krugman.blogs.nytimes.com/2011/06/03/ryancare-versus-obamacare/?_r=0

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.

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 in productivity while decreasing the reliance on (medical bill related) bankruptcy.

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

 

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This isn’t an interview: Me to me.

New things to come.

I’m going to do something positively terrifying.

Come March 14th not only will I know what’s going on with the Zepatier Treatment

But across all of my online dating profiles I will openly disclose that I have HCV along with pertinent information.

My virtual identities which I once held separate I’m going to link.
I don’t really know what will happen.
I don’t know how people will take it.
But we’ve all got our shit.

In addition to doing the ongoing dating series…

Next month The Five will be available to read in it’s first iteration in six parts. IMG_20160217_171707
It is an introspective look at the previous treatments’ failure and how to fail best.
(like Astronaut Chris Hadfield says “Visual Failings, not Defeat” )

New things to come.

Warehouse Doors and Bitter Pills

What brings us here, to these locked warehouse doors are the restrictions on access from insurers, and medicaid . High cost pharmaceuticals, and the changing of their discount policies. And the lack of effort by governors to approach discounts because of the pending TPP.

I’ve been talking a lot recently about these things and how we get to here.:

The Locked Warehouse Doors. 
Locked_warehouse_door
if you were denied Sovaldi, Harvoni, Viekira Pak, or any other new HCV med, if you had to go through lots of hurdles for treatment; I urge you to tweet/post about them with the hash tag: #LockedWarehouseDoor.

What Happened to My Support Path?
Sovaldi_bottle_My_support_Path
Gilead used to offer My Support Path to larger audience, but they’ve clamped down on the discount in hopes of allowing more patients access to their meds by pressuring insurance companies to loosen restrictions.

Medicaid’s Silenced Epidemic
Silenced
Medicaid’s inability to assist the needs of HCV patients in many states unless they have permanent liver damage and depreciating quality of life. These restrictions are in place even thought preventative treatment would cost half as much.

The Trans-Pacific Partnership
Trans Pacific Partnership
An agreement that could worsen the already steep drug prices we have, and limit the power of insurance companies/Government based Health Insurance like Medicaid to get discounts.

Medical Tourism as Bad Tourist Behavior
medical_tourism
And how Developed Countries are hurting themselves and LDCs(formerly third world) when patients mess with the supply of Live saving inelastic goods.

Warehouse Doors and Bitter Pills

Ch Ch Ch Changes

In the next few weeks HCVME.org will be re-vamping with some helpful healthcare guides.

In the meantime sit back, and enjoy my weird mixture of blogs and men. It’s my blog. It’s not about men, lets just be content with the content and read more into the context, so that it’s not conned text. Sometimes i’m awed by the odd. Perhaps my two cents would make more sense, if allowed to be read aloud.

But it’s perhaps you read what you read and most impotently you might be homophonic.

Ch Ch Ch Changes

May is National Hepatitis Awareness Month!

As May is coming up, I wanted to highlight the amazing changes that have happened in the past year when it comes to treatments and the bright future there is for those with Hepatitis C.

Of the daunting challenges to overcome, awareness can help address one of the largest ones.
The fact that the majority of those who have the illness will go unaware until they begin showing symptoms and by then permanent damage can already be done. 

Get Tested today!

TestingforHepC


IMGUR link for the infograph

May is National Hepatitis Awareness Month!

Google “googling the illness”

Last week I tried to upload a video, it didn’t work properly but here’s the gist of the first half in better detail:

Google has added a rather nifty little feature.

It now summarizes ailments and diseases using aggregated data.

It’s easy to understand why this can be a terrible idea, but considering 1 in 20 Google searches are medical related it’s not hard to understand why it was done.

For those of you not hip web-lingo, it’s a scraper. Scrapers copy content and aggregate data onto one platform, typically a website, however recently apps have become fantastic at using scrapers.

Let’s look at the 4/12/15 Google  high-quality image medical data for Hep C.

This has recently changed from sexual contact to spreads easily.

I can see a glaring issue without having to go much further. Under contagious its top listing says that it’s Mainly spread by sexual contact.

The main methods of transmission are in order: Intravenous Drug Use, Transfusion (in the USA prior to 1992, in Canada prior to 1990), and needle stick/Health care worker exposure.

This is the principle problem with scrapers. Even it grabs the data properly, Sexual intercourse using has the longest section when describing the transmission methods…why?

Because there is a lot of controversy around it. The most recent poll was done by the CDC in 2010, and the questions that were asked, were fairly direct. Even in other polls that have come out through the years, this issue always comes up:  The biggest section of the Hep C population consists of Intravenous, mostly illegal, drug users. It’s far less damning for someone to claim to have received it sexually than via drug use.

When studies have polled HCV patients directly, usually through a doctor, they find slightly better information, which is why we have such an interesting spread of information. They also have been examining the virus, to see how likely these claims could be. E.G. looking at the life of the virus outside the body, looking at how the HCV RNA in sperm is typically inert or non-existent. (it’s around 9% of the HCV infected male population that have it, and less than 20% of that 9% excrete enough for it to potentially be transferred) The less likely means of transmission as in order: Vertical Transfer: Mother to Child (it does not go father to child), Personal items (nail clippers, razors, etc..), Sexually can even further be broken down: Rough unprotected anal intercourse, rough unprotected vaginal intercourse, unprotected intercourse/rough intercourse. It is not simply by means of sexual contact, which is a much larger category.

Okay Google, now…let’s talk about how we correct this problem. There is a feedback button at the bottom for correcting mistakes.

But this is also terrible, because most of the time people who Google ailments and diseases are usually anything but experts. So the idea that an under/uninformed user is going to be able to use that feature is silly, at best. In fact, many who use this method, may reinforce what Google says by repeating their new-found knowledge to others who are under/uninformed.

The feedback method is used a lot by Wikipedia. And the correction method works for Wikipedia because often times authors/experts will correct the information using verifiable credentials.
But even still, Wikipedia’s accuracy is at the mercy of its users.

The other issue with this new presentation of information is the listing of sources. Google is borrowing the credibility of the top websites in its scraper. The Sources listing as “Mayo Clinic and others” uses a recognizable name to help a user view this information as accurate. Additionally there is no list, of what these sources area.

Ethically it should list sources, as “Sources” and not disclose any of them until the user checks the sources themselves.

While yes Google consulted with the Mayo Clinic, clearly not for that medical data, which is what makes this tool so useful. Not only would it allow Google a better idea as to how many of their users trust this quick medical information, but it would also allow Google to randomize the presentation of sources to encourage users to verify the medical information.

Why? Because if you see Mayo Clinic, 9GAG, WebMD and Top Ten medical facts about DISEASE YOU GOOGLED listed as sources, chances are you’ll look at the info with more scrutiny.
Since then, Google has changed the main transmission method  to “Spreads Easily.” Which, as a blood-born pathogen is far from the truth. Please Google Hep C, and help correct it. Also if you’re a medical professional, please help correct the information you know to be false. And please ask your Doc/Specialist(s) to help correct false information as well.

Please follow this guide

While there is a lot of medical information on the web at your fingertips, always tread with caution. Incorrect information, or half-cocked information should never be used for diagnosis. The internet can provide you with the questions you need to ask, the help of communities, and other resources to get help.

Misinformation for medical information is potentially deadly, and after all the internet is mostly a series of tubes.

Google “googling the illness”

Guideline to helping correct the google info Via Feedback

STEP 1

Step 1: select the feedback button at the bottom of the app.

STEP 2

Once you’ve selected the feed back button it’s time for Step 2.
Step 2: select the “contagious” category highlighted above.

STEP 3n4

Step 3: Once you select that category a “what’s wrong with this?” will prompt.
Please enter “Spreads via contaminated blood to blood contact”
Step 4: Select/click send!

step5

Once you’ve clicked send, this message will display confirming you submission! 
And Voila! within a few seconds you’ve just helped correct a major problem! There are two more sectors with the same issue however… there’s still more incorrect info.

common

So please put: “About 22k new cases per year, 3.2 million Chronically infected persons in the US.”

step 6

Under Treatments tab, 
The Prescription category :
“Simeprevir rarely used in US. Should be sofosbuvir/ledipasvir (Harvoni) or ombitasvir/paritaprevir/ritonavir + dasabuvir (Viekira Pak), with or without ribavirin”
And for Procedures:
Liver transplantation not common.
Guideline to helping correct the google info Via Feedback