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.