My Last Hospital-Administered Skyrizi Infusion

$320-per-minute infusion in progress (it takes just over an hour).

What does one wear to a $20,000-a-dose drug infusion? At least one person suggested a tiara and evening gown.

Arriving at the hospital

One Skyrizi intravenous infusion dose is 600mg, or 2.1164 .21164 ounces. At $20,000 per dose that’s $9,450 $943,333 per ounce.

CORRECTION: my math was off by a factor of 10. Via JO 753 in a comment below:

“There are 28.3 gramz per ounse. 600 milligramz iz .6 gramz, so an ounse iz 47 dosez. Thats 943,333$ an ounse.

No wonder they can run commercialz for this stuff all day.”

The Queen on her throne.

For comparison, gold is $2,051 per ounce, as of this writing. So Skyrizi retails at more than four fourty-six times the cost of pure gold.

I could have saved so much money if I’d gotten infused with pure gold instead of Skyrizi.

Since starting my Crohn’s disease adventure I’ve learned that basically no one pays the retail price of these drugs. Instead, an insurer pays a fraction, and the rest is written off by the pharmaceutical company and hospital so they can claim they’re “charities” and avoid taxes.

Mmmm, money.

It would be like if I charged $150,000 for my $150 Drawings. Customers would still pay $150 and I’d set up a “financial assistance program” to generously cover the rest. Then I’d mark a net loss of $149,850 per drawing, which I could write off my taxes if I made enough to pay big taxes in the first place, but I don’t because I stay just below the poverty line so I can continue qualifying for Medicaid which pays for my Skyrizi.

Hospital money is fake.

That’s the difference between someone who buys a cheap tiara and fake movie-prop money off Amazon, and someone who is actually rich.

My friend Minette, who took these photos, thought a shot of my back was important.

Anyway that’s it for my hospital-administered Skyrizi infusions. My next $20,000 dose will be a 360 mg/2.4 mL “single-dose prefilled cartridge with on-body injector”. That’s $15,748 $157,222 per ounce, equivalent to about 7.68 76.8 ounces of gold.

$157,222 per ounce
$2,051 per ounce

Gold is looking like a real bargain right now.

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Professional Patient

But what happens when, due to a serious chronic and debilitating illness or injury, we are no longer able to conform or obey because our illnesses direct our lives?  What happens when our ability to consume is hampered because we no longer have an income?

Here, in the face of serious and disabling illness or injury, the coercive reality of our station is writ large: the new role to which we will conform is that of a professional patient; we will consume medical goods and services whether we want to or not and whether they improve or further damage our health or not; and we will obey this mandate or, without means to supply ourselves with food, shelter or the necessities of life, we will be left to die.  This is the foundation and essence of the disability-based benefits structure and it is very real indeed.  As a seriously ill Crohn’s patient, this is my current (and likely future) station and I am furious about it.  Recognizing my immense vulnerability as a disabled person I am also saddened that it has come to this, horrified that I will be unable to stop it, and terrified for my future.

Cannabis Refugee

After writing yesterday about Crohnomics, a friend pointed me to the article excerpted above. Its author maintained the old radical feminist Femonade blog until she got more interested in writing about being a “Disaffected Crohn’s Patient, Cannabis Refugee, Attorney” and medical-industrial resister. Unlike the author, I do not think immunosuppressant drug infusions “give you AIDS“, and lately I strive to avoid the words “patriarchy” and “capitalist.” I nonetheless find her writings compelling and insightful.

The thought of being a medical patient for life, leashed to the hospital, costing “the system” many times what I will ever earn, has been a blow to my self-esteem. Have I become a mere parasite?  NO! Quite the opposite.

“Professional patient” sums up my new life since my Crohn’s diagnosis. Thus far I have been more than willing to “submit to painful, stressful, dehumanizing and even dangerous medical testing and examinations; impersonal bureaucratic evaluations and determinations about your condition; and usually, to accept treatment.” Apparently, this is how I contribute to the economy. Not by being actually productive in any way (the arts, while being a crucial part of society, never paid well despite my productivity) but by being a reason doctors, nurses, medical technicians, pharmaceutical salespeople, researchers, scientists, patent lawyers and others have jobs. Without patients there would be no medical-industrial complex. Without a medical-industrial complex, there would be no treatment of expensive infusions, and no accompanying hope my Crohn’s disease might go into remission so I could someday be able to eat real food again.

Crohn’s sucks, but at least I have a “job.”

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Crohnomics

I was prescribed a “biologic” drug to treat the moderate-to-severe Crohn’s disease I was diagnosed with in December. It is called Skyrizi and it costs about $20,000 a dose.

My prescribed regimen includes hospital-administered infusions every 4 weeks for 3 months, followed by home dosing via patented (ugh) “on-body injector” device every 8 weeks. Assuming 8 doses in 2024 (I got my first infusion January 5), at the 2023 price of $19,734.61 per dose, my insurance will be paying $167,876.88. I hope they’ve negotiated a better price; assuming a generous 50% discount the total would come to $78,938.44.

That is many times what I earn annually.

Now, I could try to earn more. Being a famous cancelled artist doesn’t pay much, but I have low expenses; for the last several years I have qualified for Medicaid, which, in Illinois, is by far the best insurance I have ever had. If I earned more, I would lose my Medicaid, have to shell out for private insurance premiums and deductibles, and get stuck with hefty co-pays on my absurdly expensive Crohn’s treatments. I would lose money; I can’t afford to earn more.

“Working for a living” is often called “reality.” I work for a living, modest as it is. But do I really? What’s going to ensure I keep living (if it works) is a drug that costs about $150,000 a year, every year, forever. So I am now a big net drain on the economy, and in light of this my earnings feel ridiculously performative: “Income Theater.” 

I will continue to “earn” (LOL) so I can have things like clothes and food and bike parts, electricity and water and heat and garbage collection, art supplies and maybe (maybe!) even occasional travel. Medicaid doesn’t pay for those. I’m pretty sure qualifying for Medicaid means I also qualify for SNAP (aka food stamps), which I’ve never applied for. I have some pride; I can afford food, if not health insurance. But food is getting more expensive, and pride seems absurd now that the State is paying nearly ten times my annual income on a drug friends tell me is advertised on television (no wonder it costs so much! Spots on SNL aren’t cheap).

I could also claim Crohn’s as a disability, which would give me a tax credit. Nice!

I must say I am now treated better by the local hospital system than ever before in my life. My appointments are scheduled swiftly; I have a responsive Nurse Practitioner overseeing my treatment, plus a “nurse navigator” to help with odds and ends, plus a “nurse ambassador” from AbbVie Pharmaceuticals, in case there’s any problem with home delivery of my medication in the future, or if I use the device incorrectly. In the past, the local hospital has been absolute shit to me. But now I’m a $150,000-a-year income stream, and doors open everywhere. 

If my symptoms improve, I will continue taking Skyrizi for the rest of my life or until it “poops out.” Biologic drug efficacy can last a few years, or over a decade, by which time some new expensive treatment will be on the IBD scene, or society will have collapsed.

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Theocronomics

One notable thing about the Bible, from the Old Testament, is that sins are transferrable. Just as debt is transferrable in an economy. So the Bible establishes a…Sin Economy.

“…in the death of Christ the “guilt” of sin is transferred to Christ from believers.  Though we are all “guilty” as sinners before God; we can rest and trust that Christ took upon himself the guilt of those who trust in him.” – source

In the Old Testament, Abraham is to sacrifice his son Isaac, but then God opens the first Sin Bank, and accepts a goat in his stead. Exodus and Leviticus are practically financial tables listing the sin value of goats, sheep, and pigeons. Then there’s the annual scapegoat, in which the sins of the tribe are transferred to the goat, which God accepts as payment; the goat “redeems” them, or their sins, or something; the goat is an abstract, transferrable currency.

With the advent of goats as redeemable currency, sin/debt is transferrable. The sin economy expands like crazy, as animals redeem human sin debts. You can have way more sin when you don’t have to pay for your own. Sure, there is some cost to keeping/herding goats, but it’s mostly “externalities” – it’s goats and Nature bearing those costs, more than humans. Humans mostly service the institution.

Goats, sheep, and turtledoves are Old testament commodity money, but the New Testament creates fiat currency in Jesus. The Bank of Jesus relies entirely on faith, and the sin economy expands yet again.

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Introducing Hundred Dollar Drawings!

Notice: This has been popular! New orders temporarily suspended while I work on backlog. I’ll offer Hundred Dollar Drawings again soon.

example of $100 drawing
Example of a $100 drawing

$100: Tell Nina what to draw* and she’ll draw it. It could be as vague as a word (“quadruped,” “equinox”) or more specific (“a cat driving a car,” “a sun and moon shaking hands”) or even more specific (“a tabby cat driving a convertible sportscar over a cardboard box,” “a sun and moon shaking hands over planet Earth, sky behind them half night and half day”). Nina will email you a photo of the finished drawing, and post it on her blog and social media.

*Specify drawing in Paypal checkout

 

+ $25: We’ll ship you the original art. Sizes will vary but it will be on 8.5 x 11″ or smaller paper.

 

+ $100: I will also make a “Making-of” video of the drawing, such as the above.

 

Example of cleaned-up, reproduction-ready PNG file
Example of cleaned-up, reproduction-ready PNG file

+ $100: Drawing cleaned-up and reproduction-ready for ANY USE YOU WANT!

 

FAQ

Q: What if I don’t like my drawing?
A: Too bad, sorry.

Q: Can you submit a sketch and let me comment for revisions?
A: No. If you want revisions, commission another $100 drawing, and a third, fourth, etc. You can get 10 $100 drawings for less than my usual professional rate.

Q: Can I use the drawing as a commercial logo for my business?
A: Yes.

Q: Can I use the drawing for advertising or other commercial purposes?
A: Yes, anything you want.

Q: Isn’t that crazy cheap for commercial art?
A: Yes. But some of these drawings are also non-commercial. It’s all less stress for me, and I don’t care what happens to the image after I draw it. (Actually I do care – the more it’s used, the better.)

Q: What about copyright?
A: Like most of my work this is Free Culture. There’s effectively no copyright to license or buy. You can do whatever you want with the art you commission, but it’s non-exclusive. I will be posting it on my blog and social media.

Q: What if I want exclusive rights?
A: Then you’ll have to pay more than $100 – same as most professional commercial art of this caliber. Shoot me an email to discuss.

Q: What if Nina finds my drawing instructions abhorrent?
A: I will refund your money and not do the drawing. Or I’ll keep the money and willfully misinterpret your request. That might be more interesting.

Q: Can you do a caricature if I send you a photo?
A: Not very well, but I’ll try. I am not a caricaturist so likenesses not guaranteed to be recognizable or remotely able to fulfill hopes and dreams.

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