To control her Crohn's disease, she needs drug infusions that cost thousands a year, for life

I sat in my gastroenterologist's office three weeks after a recent major surgery that involved removing 12 inches of my inflamed small intestine due to Crohn's disease. The autoimmune disorder is infamous for a laundry list of symptoms that include fatigue, weight loss, extreme abdominal pain, diarrhea, nausea, vomiting, and bowel obstructions that oftentimes lead to surgeries such as the one I had to have.

After that major flare, I wanted to know one thing: How can I prevent the need for future surgeries?

I wondered whether it involved changing my diet. Maybe exercising more? Or implementing other lifestyle changes such as abstaining from alcohol? But my GI looked at me plainly and said one word: Remicade.

He explained that it's a biologic, an infused drug that can help protect against the autoimmune disorder — more specifically, the inflammation caused by it.

"How long would I have to be on these infusions?" I asked.

My GI hesitated, shrugged, and begrudgingly told me: forever.

"And," he said, "You have to be compliant with the drug, meaning you can't skip doses or it won't work in the future."

>> READ MORE: Biologic drugs can be lifesavers. But their high cost can be life changing

I tried to get used to the idea of needing an intense infusion once every eight weeks for the rest of my life.

I was reluctant to accept the course of action, but all the doctors, including GIs, and surgeons, I spoke with continued to tell me that Remicade has been "a lifesaver" for some. The word "revolutionary" continued to come up in conversation. They said that biologics such as  Remicade and Humira are the future of treating such chronic illnesses as Crohn's disease and ulcerative colitis. But, they also warned me that these drugs are expensive, and told me that I'd have to have a financial plan in place so I wouldn't miss any infusions.

As a 27-year-old woman freshly out of graduate school, I was worried. Would the infusions hurt? And, more important, how am I going to pay for them?

In November, I received my first infusion. By now I've had four, and I'm happy to report that no, they don't hurt. In fact, the process involves a fairly painless visit to St. Joseph's Adult Infusion Center in Tampa, Fla., where most people in the waiting room are there for chemotherapy — a sobering observation.

Every eight weeks, I'm put in a private room where a friendly nurse starts an IV, draws blood, prepares me with medicines (Zofran for nausea, Benadryl in case of allergic reaction), and gives me all the ginger ale and packaged snacks I could ever want. My fiancé sits with me while we watch Bob Ross paint on the mounted television, or he'll hold my hand while I fall asleep as the medicine continues its slow drip into my veins. The beeping infusion machine usually wakes me up when it's all finished four hours later. The nurse bandages my right arm with the "good" vein, and we are set to leave and go on with our day. This is the easy part.

What's not so easy: the onslaught of medical bills, the confusing explanations of benefits, and the economic burden I now bear.

If I didn't have health insurance it would be far worse. I would owe about $23,000 for one single infusion.

But despite having a chronic, painful health condition, I consider myself lucky. I teach writing at the University of South Florida, where I enjoy good health insurance benefits. Even so, my cost per infusion is about $3,100 after adjustments.

At six infusions a year, that would come to about $18,600, half of my yearly salary as a visiting instructor. Fortunately, the policy I have now limits my out-of-pocket maximum to a few thousand dollars a year.

I get some help from Janssen, the pharmaceutical company that manufactures Remicade. Its Carepath Savings Program promises $20,000 a year to eligible patients who need the drug. That is, if you can figure out how to submit the precise documents Janssen requires. Submitting paperwork for the rebate was a meticulous and time-consuming process that only took more time away from my work and more energy than I'd care to give again, especially considering the fatigue I often face as a side effect of the disease.

During the week when I was first navigating the rebate process, I cried five times — once each weekday morning as I made calls to my insurance company and to Janssen, trying to decipher what exactly I had to do so that my rebate requests were not denied. Exasperated, I wondered how a person whose health is worse than mine, or whose time is more limited than mine, could possibly attack the hoops I was diligently, strategically, and patiently jumping through. The tears, I promise, came after I got off the phone.

No one tells you that not just any explanation of benefits will do. No one tells you that you need the itemized bill that includes the drug's non-brand name, infliximab, and that you can get this document only by calling your infusion center's financial line, requesting that itemized bill, and waiting for it to come by U.S. mail. No one tells you that you'll need an in-home scanner and access to a working computer in order to upload the required materials.

Luckily, I am relatively young, tech-savvy, and work in academia. I can wait on hold for 30 minutes at a time while I grade my students' work online from home. But how would I manage if I had young children to look after, or if I didn't have a good computer and WiFi connection?

The stress that I've accrued does not come only from having Crohn's, or getting infusions. Most of it comes from the mental load associated with the disease and route of treatment.  What will I do after my current job contract ends in two years? Should I even think about having children, knowing I could pass this burden on to them? (Crohn's has a genetic component.) And why is this necessary drug so expensive and hard to access?

If I ever lose insurance, will I take the risk of skipping infusions? Or will I dig myself deeper into debt, putting the treatments on credit in order to avoid future surgeries?

It makes me question the U.S. health-care system and its intentions. It makes me wonder why patients who need these drugs, and can't afford to not have them, must pay so much in money, time and emotion. It's these thoughts that keep me tossing and turning in bed at night.

At each infusion, I try to remain upbeat, present and thankful for my resiliency so far. I try to breathe deeply, knowing that I am doing the best I can to take care of myself. And I try, very hard, not to think about the inevitable bills that will soon greet me at my mailbox. At the infusion center, I mentally prepare, nonetheless, for the paperwork, for the calls, for the tasks ahead.

Annalise Mabe is a visiting instructor at the University of South Florida.