Insurance Blues

April 25, 2014 at 8:45 pm (Uncategorized) (, )

I have some good news. And I have some bad news.

Let’s start with the positive. A couple of weeks ago the sarcoidosis guru I travel to see in Ohio told me something I haven’t heard for many years in Chronic Town. He said, “I think I have something that will help you.” In visits past, he’s offered me emergency stopgaps—treatments that might stop my sarcoidosis from getting worse but that come with side effects that are often just about as debilitating as the disease itself. These are crisis remedies, usually implemented when I’ve completely fallen apart healthwise, not potential cures.

What he was proposing this time sounded different. It’s a medication called Acthar. (My 10-year old son Andrew thinks that sounds like a Star Wars planet.) It was actually the first treatment ever devised for sarcoidosis, back in 1952. It never got much use, though, because just six years after Acthar’s debut, prednisone was released, and prednisone was quite a lot cheaper than Acthar (plus you can take it in pill form rather than having to inject yourself with it). The sarcoidosis guru has recently been trying Acthar for his patients with stubborn cases of neurosarcoidosis, and he’s seen positive—very positive—results, with far fewer side effects than with treatments like predisone, Cytoxan, Rituxan, methotrexate, Cellcept, IVIG, or Remicade. He thought that if I responded well after three months on Acthar, I should be able to stop my monthly doses of Cytoxan—my chemotherapy with maybe the most unpleasant side effects—and if all goes as planned, eliminate my other drugs one by one. The guru wouldn’t make any promises. He was clear about this. But it’s the first time I’ve dared to even think the word “cure” for nearly a decade.

I have to pause here. Typing that word “cure” caused my heart literally to flutter. A life without sarcoidosis is something I haven’t let myself imagine in years. Hoping for a cure has been too painful. I’ve been let down too many times. It’s better to keep my focus on the two inches of rocky road directly under my feet, rather than let my eyes wander to distant, mythical lands where concepts like “cure” bloom like meadows of mountain wildflowers. I’ve also given up on hoping for a life without side effects from the deadly cocktails of treatments I rely on now to keep my sarcoidosis barely in check. These range from the annoying (weight gain) to the life-altering (horrendous fatigue and monthly bouts of nausea and vomiting) to the frightening (risk of deadly infections) to the lethal (heightened risks of bladder cancer and lymphoma.)

This is all very encouraging news. For a few days, I went around feeling a little breathless. I started dwelling amongst the tenuous blooms of hope. I let my gaze stray far beyond the road beneath me.

Then my health plan got involved. It refused to cover the Acthar. It doesn’t matter that Acthar is FDA-approved for sarcoidosis. It doesn’t matter that if the Acther does what we hope, I’d be able to get off my five current expensive treatments that together cost well over $80,000 a month, saving the State of Montana (we’re covered through my husband Jay’s job) easily $50,000 a month. What matters to the plan is that Acthar is expensive. So they said, “No.” It’s actually hard-wired into the fine print of our prescription drug coverage. (My lawyer-husband waded through it all, but it distills down to a depressingly simple equation: Acthar=No.)

The fight isn’t over. There’s a process for getting a “plan exception” for the Acthar. Jay, thinks we can do this, that it might take time—time during which I’ll have to stay on monthly chemotherapy—but that eventually we’ll prevail. I’m not so sure. I am caught between hope and doubt, between good news and bad. I don’t know exactly what to feel, other than angry. I’m back to staring at the ground right in front of me. And maybe that’s where you need to be when it’s time to prepare for war.

Have you ever been caught between hope and doubt, between the view of your feet and the long view? How have you survived?

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