Adapting to Limitations: My Recent Adventures with Insurance and Remicade

March 8, 2017

by Joan Friedlander

I’ve been receiving Remicade infusions for treatment of Crohn’s Disease for over 10 years now. Until a year ago, I never had any issues with authorization and coverage, so when I received the first insurance denial I was shocked, especially since I had the authorization for the infusion at this facility in my possession. To compound things, I didn’t receive the denial until I had already received another infusion a couple of days prior. Now I was looking at double the potential liability!

I immediately called the insurance company. It took two calls with two different representatives to get the actual story.

Here’s what happened: My husband had recently gotten a new job, and therefore new insurance, a little over a month prior to the first “incident.” We were covered by a Blue Cross/Blue Shield (BCBS) PPO plan at his former job, too, so I had no inkling that there would be any change in what would be allowable. This new coverage requires that Remicade be sourced at a specialty pharmacy and, apparently, the facility is supposed to order it for me, the patient, to pick up and carry in to them.

The first representative I talked to said that the infusion center – which is in Arizona – should have received notification of this requirement a couple of months prior. Sure, that might be true if I’d been insured with them at that time, and an Arizona facility would even be on their radar, since they are a Massachusetts-based company. Regardless, let’s go back to the facts: the infusion center called for the authorization and received it, the Specialty Pharmacy requirement was not stipulated, nor was it included in the written authorization.

When I moved to another state a couple of months later, I ran into more difficulty with this new requirement. Despite my efforts to make sure the nurse assistant at my new gastroenteroligist’s office identified a facility that would source the Remicade from a specialty pharmacy, her assurances that she had done so turned out to be a lie.

Not only did I emphasize this requirement to the nurse assistant, I reconfirmed with the hospital staff when I was admitted that they had the authorization and that it was being sourced as required. It wasn’t until after the last drop was administered, that the nurse taking care of me told me that, oops, they used Remicade from their internal pharmacy. She then told me that the pharmacist said he would “take care of things.” It’s been 8 months and I still haven’t seen anything from that visit. I sure do hope they decided to eat crow. Not likely but we’ll see!

Back to the nurse assistant I went. Surprise, surprise, she had no memory I told her any of this. And, apparently, she didn’t bother to check my insurance coverage. She was finally able to identify a facility in the area that would accommodate the requirement. It turns out that the hospital where she sent me the first time wouldn’t.


When all this came down a year ago, in addition to contacting the insurance company, I asked my husband to contact his internal Human Resources representative to see if we could get some help. Fortunately, the guy was receptive and agreed to go to battle with the insurance company on our behalf. The first two claims went into the appeal process and a couple months later I received an update from BCBS. They were making an exception and covering those 2 infusions. Phew! Did I mention that the infusion center was charging $30,000 per visit? I’m pretty sure that’s way above the allowable amount, but to see those numbers is scary.

What a mess they have made. To save on costs, they’re making it the patient’s responsibility to pick up and carry. (Fortunately, the specialty pharmacy, Accredo, does deliver to the facility. I just have to participate in the order process.) Educating providers is sorely lacking. And, it seems that many hospitals and infusion facilities won’t accept this means of sourcing Remicade.

Through this experience, and a few other insurance coverage mishaps this past year, I have learned that the people we should be able to rely on to do their jobs are, apparently, so overwhelmed that we must be even more pro-active in when it comes to insurance, treatment and coverage. I wish it weren’t so. They’re paid to know about these things, we are not. Yet, these are the times we’re living in. We are the checks and balances.

What adventures with insurance have you had, and how have you resolved them?

Stay Connected

Sign up for updates straight to your inbox.