The Cost of Crohn’s Disease (Year One)

The spring semester of my second year of law school, I had the worst abdominal pain of my life. I’d been having similar issues on-and-off for the past year or so, including dramatic weight loss caused by the uncontrollable urge to vomit every time I ate. Multiple visits to student health services yielded nothing but instructions to take antacids.

One weekend in February, though, the pain that had been mostly tolerable became unbearable. I assumed I had a stomach bug (it was going around campus!), but when Monday rolled around and I still couldn’t eat or move, I went to student health services once again. They gave me fluids, observed me, and, after a few hours had passed and I hadn’t improved, put me in a cab and sent me to the ER.

I didn’t leave the hospital for nearly a week. At the ER, an X-Ray and an MRI showed that my appendix and intestines were severely inflamed, and I was admitted and put on IV antibiotics, steroids, and fluids while the doctors tried to figure out what was wrong with me. One CT scan, one colonoscopy, and countless episodes of SVU later, I was diagnosed with Crohn’s disease, a type of chronic inflammatory bowel disease that causes symptoms in the GI tract and beyond.

The grand total for this five-day hospital stay was 13,246.53.

This sum included: four nights in the hospital; consultations with surgeons, hospitalists, and gastroenterologists; IV steroids and fluids; one MRI, one CT Scan, one X-Ray, and one Colonoscopy. Of the $13,246.53 billed to me, once insurance paid what they allowed, $1,094 came out of my $1,800 deductible and $1,745 went towards my $3,600 coinsurance maximum.

You want to talk insurance? Let’s talk insurance. My insurance coverage is a combination of my school’s mandatory, basic insurance ($930/year) and my mother’s insurance (at the time, she paid $2,300/year to add me to her work plan). The school’s insurance covers basic services at student health services with no co-pay, but prescriptions aren’t covered. My mother’s insurance is a great and flexible PPO. But with my 26th birthday this month, I was just kicked off my mother’s insurance, and so I had to decide if I want to be insured primarily through the school ($3,038/year) or keep basic services with the school ($930/year) and pay for COBRA through my mom’s insurance ($410.06/month, including dental). Through COBRA, I can continue my coverage for up to 18 months. Ultimately, I decided to go with COBRA, since my doctor is not affiliated with the school and so my visits with him would be capped at three for the year, or I’d have to pay out of pocket ($$$) for those visits.

Since my diagnosis at the beginning of the year, I’ve had two more hospital stays (12 days in total, for which I was billed $56,932, $73 of which went towards my deductible and $1,854 of which went towards my coinsurance maximum), along with several office visits ($160 in co-pays). I switched doctors and medications along the way, and have had half-a-dozen MRIs, a few more CT scans, and a drain put in my abdomen through a non-surgical procedure. At the moment, I’m taking a pretty aggressive medication called Remicade (It’s made with mouse antibodies! Modern medicine.), which has worked well on me for the past few months. It’s delivered by infusion every 2 months, and costs $4,000 per infusion. I’ll likely stay on this medication for several years if it continues to work, or, if it stops working (which is somewhat likely), will go on equally expensive peer medications. Interestingly, all these medications are technically biologics, not regular drugs, so they likely won’t go generic as quickly or as cheaply as normal medication. I also take a daily medication called Imuran that costs $20 for one month’s supply.

Before I was diagnosed with Crohn’s disease, I (somewhat shamefully) didn’t pay much attention to my health insurance numbers. I rarely visited the doctor, and the random flu shot or pap smear could easily be handled by student health services. Insurance plans are definitely now more in the front of my mind as I consider future employment. I have a severe pre-existing condition, and, once I graduate, my insurance coverage and costs and my salary will be important in ways I hadn’t anticipated before I decided to attend law school. I’m so incredibly lucky to have supportive parents who have done a lot of the financial heavy lifting since I was diagnosed, but I can’t be dependent on them forever.

I wish I could say I have a plan for how I’m going to keep paying my medical expenses once I’m unable to be on COBRA anymore, but at the moment I’m just concentrating on getting through classes and learning to live with this challenging illness.

 

The author is in law school. 

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16 Comments / Post A Comment

Heckyes (#1,162)

I’m also on Remicade, yay! I’m on excellent insurance right now (thanks mom, at least until I turn 26), but I’ve been uninsured before. I’ve been on these expensive biological meds while uninsured, largely through the generosity(?) of the pharmaceutical companies. Most really expensive meds have some kind of patient assistance payment or rebate plan, where if you are poor and/or uninsured, they’ll waive the fees for the meds entirely or almost entirely. For Remicade, the program is called Remistart and will pay for your infusions for up to a year. You just need to fill out a couple of forms. Perhaps you could look into it to maybe bring down your huge medical expenses a little bit?

@Heckyes Remicade is going generic soon. Technically, it’ll be a different med (I was on Remicade till I got allergic to it – Remicade is delightful) but it may work for you AND be cheaper! BTW I’m on Enbrel and I love but I have Psoriatic arthritis.

If you get bumped from your mother’s plan because of your age (“becoming an ineligible dependent”), you should be eligible for 36 months of COBRA, not 18.

ghechr (#596)

I had a crazy experience when I was in law school! I ended up with gallstone pancreatitis and I was in the hospital for 3 weeks. The total bills neared $100,000 when it was all said and done. THANK GOD I had medical insurance. Granted, it was “disaster insurance” with a $5000 deductible but $5000 looks way better than 100 grand. I’m lucky that the pancreatitis was a “one off” and not indicative of a long term problem so no future pre-existing condition bullshit do deal with. The health care/medical insurance industry is so jacked up here. I wonder if/what will change when the affordable care act kicks in?

Stina (#686)

Post COBRA world suggestions: Since you are insured through COBRA you haven’t had a break in your insurance coverage so you are actually not automatically excluded from being accepted for an individual insurance policy. Granted the price you are quoted might be out of your reach but it is still worth a try. There is also the PCIP pool plan for people with pre-existing conditions.

See here for more options for your state and for information on the PCIP: http://finder.healthcare.gov/

Have you made contact with a Crohn’s disease group? Most disease advocacy groups have information on how to be/stay insured.

Hope this helps.

@Stina The thing about the PCIP pool plans, however, is that some of them (all of them? Many of them? I haven’t checked) require you to be without insurance altogether for 6 months before you’re eligible for the pool. No exceptions- believe me, I looked for every loophole I could. So, in theory, they’re a great idea, but in practice, if you can’t afford to self-insure for 6 months, it’s not all that helpful.

I was diagnosed with rheumatoid arthritis at about 15 and have failed off most of the available drugs, including Remicaide, in the decade or so since. I’m currently using Rituxin, which runs about 100K/year for four infusions. My suggestion is this, if you can withstand a gap in madical care (or use the Remistart option mentioned by Heckyes): See if your state is running any type of “bridge plan” to help with transitioning it’s inhabitants who are chronically ill to the Affordable Care Act. For instance, New York has one that is offered to those with certain diseases who have been without health insurance for 6 months prior to applying. I pay about $400/month, have no deductible, a $20 office visit copay and very low copays (if any) for most prescription drugs. It has saved me from going bankrupt, and is totally worth taking the time to investigate.

@Katherine Carl@facebook Alot of those are going or are generic drugs. Because the drug is so tiny, the generics are slightly different – one may work for you!

aetataureate (#1,310)

Oh my gosh. Thank you for sharing this story, and also aces to everyone who’s already giving great suggestions.

meghanelizabeth (#2,328)

Thanks for writing this. I have a loved one who also has some GI issues and is now on Remicade. We’re Canadian, so all the hospital stays and doctor’s consultations have been fine, but this person requires a double dose of Remicade every 4 weeks, rather than every 8, and being 4x the standard amount, whatever plan he started out on doesn’t want to cover it anymore. It’s $5000 a pop and I’m not entirely sure what, if any, permanent solution he and his parents an drug company have come up with as yet. I very sincerely hope this treatment continues to work for you and that you’re able to navigate the best course through all this insurance co-pay etc. business.

Thank you for sharing your story. I don’t have Crones, I have Psoriatic Arthritis with IBS. I can’t eat anymore – what happens when I eat is so horrible that I just have no apetite anymore. Chronic illness sucks, keep your head up :)

AS@twitter (#2,331)

I also have Crohn’s disease. The initial diagnosis took place over a year. I was first diagnosed with stress and IBS. I was then relatively disease free until a flare that lasted about 5 months. I ended up having a bowel resection that involved hospital stay on and off for 3 months and cost near $200,000 all up. I didn’t pay a cent really, but it’s unbelievable.

Now that I am in remission I have decided not to be on maintenance therapy. It has been 7 years and I would have had to take medication every day for that 7 years had I chosen to continue to be on medication – this would have been too great a burden for me – not just financially.

@AS@twitter May I ask why it would have been too great a burden? I have a few chronic conditions but no experience with this class of medications. Are there pretty harsh side effects? –Someone honestly clueless.

brittsays (#2,332)

Thank you for writing this! I’m lucky that I live in Canada and was diagnosed when I was still covered by my dad’s health insurance, but now that I’m no longer covered there, it’s a game of trying to figure out how to pay for Remicade. Luckily, there’s a decent program in my province that helps to cover the costs. But I always worry about when luck will run out. Anyway, Crohn’s sucks and it always good to see someone actually talking about it.

Thanks for posting this! I, too, had huge bills after my bowel resection—insurance did not cover it all and it was wicked expensive AND I had good teachers’ insurance… Paid it off monthly from 2006 on. I wrote this book I’d love to send you all! Maybe just send me $5 for postage ;) it is called “Living With Crohn’s & Colitis: A Comprehensive Naturopathic Guide for Complete Digestive Wellness,” and the tips and medical advice are free! The “drugs” are plant-based and pro-biotics and don’t cost much! Good luck with school and health and healing…I know it sounds stupid, but try to get lots if sleep (yeah, law school , I forgot ;)

bltaug3 (#501)

I just got diagnosed a few months ago, and I feel like I had the same conversation last week. I never thought about my insurance plan, and until now copays and stuff was no big deal. Now I’m coming to realize how crappy our healthcare system is, and even with the standard employer-provided insurance, medical bills sure can add up…it was never really something I had to budget for until now.

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