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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send this to 10 people in 10 seconds or your wish will never come true

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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!