#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.

The gray area of ADA protections.

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

EEOC V. Heartway

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

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

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

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

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

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

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

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

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

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

So instead I did something different.

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

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

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

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

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

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

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

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

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

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

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

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

So what can anyone do to help?

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

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

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

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.

#hepaware

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.