We Regret To Tell You That This Service Is Not Covered

After a careful review of the documentation, read the letter from Moda Health, we regret to tell you that this service is not covered.

I stared at the letter in disbelief. Reading the sentence again, the strength drained from my hand and my breathing stopped. I felt like someone had just casually dropped a live grenade in my lap and kept walking.

My insurance was denying my Remicade coverage.

It was August 9, 2016, eleven days since my first Remicade infusion. My bowels had finally begun slowing in the last few days—I was “only” having five to seven bouts of diarrhea a day, down from twelve to twenty over the past few months. I knew Remicade was responsible for the improvement because there had been no other changes in my meds or diet.

For the first time in months, something was finally working for the ulcerative colitis flare that had put me in the hospital and threatened my life. Now I was back home, and my second Remicade infusion was scheduled for the day after tomorrow. I needed a series of three infusions close together to get me all-the-way started on the drug.

As I held the letter from Moda, I took a deep breath, coaxing the air in, blood pounding in my ears. I’d seen the bill for my first Remicade infusion, the one I’d been given in the hospital. The cost to Moda had been in the ballpark of four thousand dollars. If the next one wasn’t covered and I went through with it anyway, I would be charged at least four thousand dollars out of pocket for just this next single infusion.

Quickly doing the math—I’d need at least six infusions a year, maybe twelve—Remicade would cost me twenty-four to forty-eight thousand dollars per year.

The plan medication coverage guidelines require that you be treated with Humira before using Remicade, said the letter from Moda. Therefore, the requested medication does not meet medical necessity criteria.

Humira was the main alternative drug to Remicade. Apparently, Moda had wanted me to try Humira before Remicade, which no one had told me in the hospital when I’d opted for Remicade. Moda now wanted me to backpedal and start over with the other drug.

But my doctors had told me Remicade was more likely to work in a case like mine, which was known as a “rescue” case. I needed to be rescued from my severe, dangerous flare, which had rendered me frighteningly underweight. The longer it took to find the right drug for me, the more time passed with my colon inflamed, and each day that passed was another day of risk.

The thought of switching drugs and delaying my healing gave me a bottomless feeling, like toppling off a high balance beam without a net.

My thoughts raced as I held Moda’s letter. How could my doctors not have seen this coming? In the hospital, they’d told me it was my choice between Remicade or Humira. Had no one thought to look into the insurance?

If you do not agree with this decision, you may file a first level appeal with Moda Health, the letter said. If your claim is urgent, you may ask for an expedited (fast) appeal…We will respond to an urgent appeal within 24 hours when possible.

It was after nine p.m. and too late to call Moda today. I texted my family my worry, saying I’d make the call first thing in the morning.

I slept poorly. I was still on prednisone, a leftover drug I’d been on all summer before knowing I’d need Remicade. That drug, plus the new stress about Remicade, kept me up till 4 a.m.

The letter was a stark reminder of the precariousness of my situation. I’d resisted going on Remicade for weeks, and yet now that I was on it I was afraid to go back off it. I had been making so much progress.

I was distraught at the way the letter had instantly destroyed my peace of mind. In the past week, I’d been feeling a new, deep sense of calm, an inner balance I’d never before experienced. It came from gratitude for no longer being in constant pain, a new appreciation of life, and my discovery of mindfulness practices that were calming my chronic anxiety. I had hoped my anxiety might disappear for good.

But now, with the letter, I saw that my new balance had occurred within a vacuum, a safe little pocket apart from real life. The letter had yanked back the curtain, and my anxiety had quickly returned.

Lying awake, my mind raced through all the possibilities for my future. I was totally at the mercy of Moda’s discretion. If an appeal didn’t work, and I went off Remicade now, what if I could never go back on it? In the hospital, doctors had warned about going off Remicade—going off can cause your body to develop antibodies to it, which makes it unsafe to use in the future.

And if I tried Humira, how much time would I lose? How many additional weeks of flaring and lost income from not being able to work?

And then, if Humira didn’t work and Remicade was no longer an option, would I need surgery sooner than we had thought? Perhaps in the next month? Would surgery be safe for me when I was still so severely underweight?

Was I going to lose my colon because Moda had denied me Remicade?

As I lay in bed wrestling with these thoughts, I became newly aware of my own frailty. The letter brought to mind the many seen and unseen forces working constantly to keep me safe. I was utterly dependent—not just on my caregivers, but on the entire American health care system. Removing just one piece could do me in. There were so many pieces that could be removed: my husband Ron’s support, Ron’s own health, my access to health care, the pharmaceutical industry’s production of the drugs I needed, Moda’s willingness to pay.

On top of my fear was the anguish and anger I always felt when my own setbacks made me aware of how much worse the situation would be for the millions of Americans without health insurance. I felt their presence, the unseen others who were sick like me but didn’t have a way to pay for all the treatments I’d been getting. It was such crushing injustice. I was being denied a drug that millions wouldn’t have access to in the first place.

At times like this, I felt intimately connected to all the other sick people, all of us alone and yet together, lying awake with similar fears in similar separate, dark rooms.

A few hours later, I stepped on the scale, my usual morning ritual these days, while Ron made me breakfast downstairs. My weight was up to one hundred and four, my latest uptick as I inched toward safety. I prayed that those upticks could continue uninterrupted.

I was still too weak to do much except lie on our guest bed, which had become my nest since I’d come home from the hospital. Nervously, I ate my food off the tray Ron brought and waited for my doctor’s office and Moda to open.

My plan was to enlist my gastroenterologist, Dr. L, in helping me file an expedited appeal. I would likely spend hours on the phone and computer today, waiting on hold, getting transferred, waiting some more, researching how to write the appeal letter, and getting it ready to mail. My heart sank at the thought. I wished I’d had more time to build up my inner reservoir of strength before tackling life’s stressors again.

At last, Dr. L’s office opened. Taking a deep breath, I dialed the number.

To my surprise, when I described the letter to a member of Dr. L’s team, she knew about it already. “We got a copy of it, too,” she said. “Dr. L has already initiated the appeal process. We think there’s a good chance they’ll approve it for you, but just in case, let’s reschedule your second infusion.”

“Oh!” I gasped. “So—I don’t have to write an appeal letter?”

“No, Dr. L is already writing one. It should go out today. This happens sometimes, but you have a strong case, so we don’t think they’ll deny it.”

Stunned at the sudden change in my fortune, I worked with her to move my second infusion back a few days. She said the move shouldn’t affect Remicade’s overall success. I thanked her several times and hung up.

I had unexpectedly finished my task.

I felt hope and a bit of awe. I might be off the hook. After all my fears last night, this crisis might be nothing after all.

I lay back, exhausted and grateful. But then I felt a new surge of anger rise to accompany my relief.

Yes, I might be off the hook. But what if I didn’t have health care—what would have happened to me then? Without Dr. L, how could I possibly have navigated this setback? I was in no state to spend hours on the phone and writing a letter. I needed to rest.

How would most people even have survived this summer without health care, or afforded to pick their lives back up after a month’s worth of hospital bills? In someone else’s shoes, would I have died at thirty-seven because I couldn’t afford my long stay in the hospital?

So far, every time I’d fallen down, the system had managed to catch me back up in its ragged safety net. But each time, I was keenly aware of those who weren’t being caught.

By evening, I got a call from Dr. L’s office: my Remicade had already been approved by Moda. I, for one, could continue along my healing path, at least for now.