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.


Author: Nina Paley

Animator. Director. Artist. Scapegoat.

10 thoughts on “Crohnomics”

  1. Wow, Nina. Not a great way to end, nor start a year. What an absolute poop.

    Here’s thinking of you. Appreciating you, and what you have -and are still -offering as an artist. Remember: to me you’re the second most famous female casualty of the gender wars. Second only to JK Rowling herself. When you “got canceled” my ears pricked right up. Canaries and Coal Mines, and all that.

    Stay warm.


    A Fan

  2. And here I thought my $5k/bottle for my Rinvoq was bad. I likely qualify for medicaid kyself but living in Texas I’ve been afraid to see what that covers. Without my insurance my meds for my autoimmune disorder is about $10,000 per month. Crazy. Either way, hope you start feeling better! Enjoying Heterodorks ????????????????

  3. Medicaid and foodstamp-eligibility, how does that happen to America’s best-loved unknown cartoonist. And unable to afford to earn more, a perverse incentive. You’ve been colliding with the stick-end of crony capitalism for years, from copyright to deplatforming, but there are the benefits that keep the system continuing, like receiving a hilariously overpriced medication. If the Syzygy drug works for you, at least for once taxpayers get their money’s worth.

    Godspeed. Thanks for updating us to know you’re getting treatment.

  4. Hi Nina, I listen to your thoughtful and hilarious podcast with Corinna, and admire you both a lot.

    I’m very sorry about your Crohn’s diagnosis, what shit luck! I’m based in New Zealand which has a strained but functional public health system…the US system sounds grifty, inadequate, and wasteful. Poor citizens like you are always one health problem away from financial ruin. It’s stupid and cruel.

    So please let me uselessly cuss, shake my first at the heavens and stamp my heels from afar on your behalf.

    Much sympathy

  5. Dear Nina,
    I honestly am so sorry, not in a pitying way. because you don’t need that, I know you are a warrior. However, I hate these types of sicknesses. You, know they say trauma isn’t a cause of these things, and I know young people who have chrohns, but I do know a lot of people who have complex trauma have autoimmune disorders including Chrohns.
    I was just straight up poor as a teen mother, I got on Medicaid about that time. Medicaid was the best medical insurance I ever had. I have not had true Health Insurance in many years because I can’t afford a plan with less than a 15k deductible on marketplace (we are in the working lower middle class). This is another area of this country that is insanity.
    All that said, I am grateful you have what you need right now and that hospitals are treating you nicely – because that common decency is relieving at least. I hope the side effects go away and you have way less pain and trouble from Chrohns.

  6. I stay in a job for which I am ridiculously overqualified so I can live in a house and have insurance to treat my two autoimmunes and other medical issues. I don’t get time or have money to make much art, which is what I trained to do and all I want to do. One of us has not been able to find work since the pandemic.

    I get this economics. Biologics were down the road for me if my DMARD treatment hasn’t worked. It doesn’t for most people, but it’s cheap, so it’s how they started me.

    This system is broken in so many ways. I hope the patented high-end drug at least works for you. We need you.

  7. You needed a friend to point out the Skyrizi commercials? I can’t escape them myself, whenever I watch anything on TV… daytime, primetime, nighttime, talk shows, game shows, sports… they’re non-stop. None of them mention how much the stuff costs, though.
    Who comes up with the names of those medications, anyway? Rizi in the sky with diamonds? At least that one doesn’t sound like the name of a cartoon villain or an alien planet in a bad sci-fi movie, like some of them do.

  8. That’s an insane amount of money! I wonder if the company that makes it will ever decide they’ve recouped their development costs enough to lower the price. :-/

    I have the usual techie corporate-subsidized (somewhat) insurance, so that’s helpful. But when my mom needed health care for some time – including a bunch of medications – in winter 2022/2023 (and still needs meds), I’m SO glad she was dead poor, because “medi/medi” (Medicare/MediCAL) picked up everything. I wouldn’t say the medical system treated her especially wonderfully, but it was a lot better than it could have been.

    I’m glad the system is working for you at the moment; and here’s hoping that you won’t end up having to pay much for this crazy medication!

    – Tim

  9. As a Canadian with government medical coverage, you got me going on this topic, and I’ll ramble through a few thoughts on the matter. It doesn’t appear to be perfect, but generally I’ve observed our socialized medical system to work pretty well in the nearly 55 years I’ve been here since leaving the USA. It appears this one is covered, but people need to jump through a lot of hoops and fail in other treatments first. We’re allegedly about to have dental coverage added in a rollout this year, some of us presently eligible, but we haven’t received any of the documentation we have been told we’d have received by now, and eligibility is based upon income or lack thereof. What is hard for us to understand is that the eligibility point is the “low income” of under $90,000 for a household, and we own our home and everything in it debt free and live a good middle class lifestyle having never seen half that! It’s a very unbalanced world out there. Of course we wish you well and wellness and send you our appreciation and blessings from LalaLand in Victoria. ??

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