The Cost of Crohn’s

Last March, weeks after my 22nd birthday, I was diagnosed with Indeterminate IBD. Which is a fancy way of saying they couldn’t tell if it was Crohn’s or Ulcerative Colitis. The doctors were leaning Crohn’s, and it seems like people are more familiar with Crohn’s thanks to our disease representatives Pete Davidson and Hank Green, so I usually just say I have Crohn’s. I’ll spare the pretty details, but the highlights of my senior year of college included dropping from 135 to 108 pounds in 30 days (I’m 5’8), night sweats, and 10+ mandatory potty breaks a day. This all culminated in an 8 day emergency room trip to the hospital, where I looked my best (and still worked on CS assignments):

Enough about me, as I said I’m grateful that since that hospital trip the meds started and continue to work, and I’m not here to gather pity. Instead, I want to shine some light on the financial cost of a Crohn’s diagnosis like the fintech bro I am. As you might expect, medicine is by far the most costly component, so let’s talk about the various treatments. Steroids (typically Prednisone) are used for short term treatments during flare-ups. Mesalamine (sorta like aspirin but for your guts, its an NSAID) is used for milder cases. Then we’ve got the heavy hitting black label boys with all their serious side effects. There’s the immunomodulators (literally anti-cancer chemo drugs, the most common being 6-MP, azathioprine, and methotrexate) and the biologics (newest option with many still undergoing trial, with the most common being Remicade, Humira and Stelara).

I’ll be focusing on the cost of Remicade as that’s my own treatment and I’m familiar with the costs, but most of the biologics are similarly expensive. The other three treatment categories have generic options and are many orders of magnitude cheaper. Most of these biologics require either an in-person or at-home infusion (as in you get a needle up your arm and spend 2-3 hours hooked up to an IV) or subcutaneous injection (basically you stab yourself with a needle in the thigh or stomach). They also require semi frequent usage, Remicade will range from every 4-8 weeks, while Humira is every 1-2 weeks. This depends on the severity of your disease, for reference I’m on the maximum allowable dose of Remicade every 8 weeks.

Ok ok ok, enough context, you came here to see some cold hard numbers. My last infusion at a new clinic billed $17,200 to my (parents) insurance. And as I just said, that’s every 8 weeks. My infusion before that was at the IBD suite instead of the clinic, and they billed $40,000. Before that I was doing at-home infusions which billed $39,400. I need to get blood work done quite often as well, and that slew of tests runs $3854.

Let’s say I have a good year with no hospital visits or tests, just my usual Remicade every 8 weeks and we’ll say labs every 16. In one year, I’ll have 6.5 infusions and ~3 blood tests. Assuming all my infusions are in the clinic, my one year bill to insurance is a whopping $111,800. Wow. Could easily put 20% down on a house with that. And if my infusions were at-home? $256,100. Maybe a much nicer house, can I pocket that difference I’m saving my insurance company by going to the clinic? The real kicker is that I need this medicine my entire life to stay in remission, so by the time I’m 60 I will have racked up at a minimum $4,136,600 in bills. This isn’t even including the colonoscopies ($35,700 each) I’ll need every 2-5 years due to my higher risk for colon cancer or the odd flare-up induced emergency room visit ($107,860.00). Nor does it account the fact that 75% of those with Crohn’s will eventually require surgery.

I’m overstating these numbers a little. Everyone knows that hospitals inflate bills for insurance companies to pay them, and almost never does a person get stuck paying that whole amount. Not only that, but most biologics offer a savings program, like Janssen’s CarePath for Remicade which reduces your out of pocket cost (I believe down to 50/infusion). As for my parent’s insurance, I have a $1,000 out of pocket maximum which is the most I’ll have to pay each year. Even still, by the time I’m 60 that will have cost me $37,000. The scary thing isn’t the money, but it’s the reliance on health care. I’ll always have to prioritize jobs with good health care, and going an extended period of time without insurance is more or less impossible. I can only imagine how difficult this would be to navigate for someone without insurance. I’d also like to give a shoutout to my insurance company for taking weeks to approve my original Humira prescription, which while waiting for approval ultimately lead to my admittance to the hospital and emergency infusions of Remicade.

Let also acknowledge how lucky I am to have gotten my diagnosis while under my parent’s great insurance, and how grateful I am to have had 21 years of life before symptoms and a quick, effective response to treatment.

Donate to the Crohn’s and Colitis Foundation: https://www.crohnscolitisfoundation.org/donate