Quick Update

My oncologist met with a physician from my insurance company, known as a “peer to peer” review. And they denied coverage for my chemo right then and there before he was even off the phone. “It’s experimental. We don’t cover experimental treatments.” He’s filing an appeal but I’m not hopeful.

On the one hand, I sort of see why it was denied: this treatment is experimental. But on the other hand, as I’ve said all along, there is no established treatment for this disease. So even if they gave me aspirin, it would be considered experimental. (Okay, granted, aspirin is a little cheaper than chemo.)

Also, what’s the deal. They’ve been covering it for over four years. What’s changed? Not my disease, not the medication. It was just as experimental then. But now all of sudden they won’t cover it.

I called my insurance company to get in touch with a case manager. I had spoken with one in the past, but when I called her number, it was disconnected, so I’m assuming she moved on. I got connected with another nurse and explained the situation. Her initial statement was, “Well, we can’t override the doctors if they deny treatment.”

Duh, really?

I told her I was looking for guidance in appealing the denial. She said to just wait until I received the letter from the insurance company; it would have the information to appeal on it.

So. That was a waste of a phone call.

And she was wrong. The denial letter didn’t have information on how to appeal. But I’ll let my doctor handle that for now.

My next chemo is supposed to be in two days. I messaged the doc a few nights ago and said I suppose I should cancel that. I also asked if he’d heard anything about the appeal. He didn’t specifically answer about the appeal but said, yes, cancel the appointment for this week. I asked him if there was a Plan B in the works. He said Plan B was going back on Velcade.

So that’s weird to me. I was on Velcade initially for six months starting in December 2020. It was effective, but then the neuropathy in my feet set it. I just assumed that when my insurance said “no” to treatment, they meant ALL treatment. I mean, Velcade is experimental for this disease too! Apparently, they’re perfectly fine with my receiving treatment that causes intolerable side effects but not one that’s just as effective without neuropathy. Okay then. Just more evidence that they’re really not in the business of helping, and, hey, what’s a little suffering among their customers. Nah, I’m not bitter. (Is this where I insert a tasteless ‘Luigi’ joke?)

Now I will say that when I was on Velcade before, I do not believe I was using the ice gloves and booties on my hands and feet. And I may not have been on alpha lipoic acid. Also, I’m guessing I will only be on it monthly instead of weekly as I was when I first started. So maybe with those three changes on board, I won’t have neuropathy?? Time will tell. Or maybe I have to start with Velcade again, and if I get neuropathy, the insurance will let me switch back to Kyprolis? Shit. I don’t know. I have an appointment with the oncologist in April so I will ask him then. But for now, I told him I’ll just wait until I hear from him before I’m back in the infusion chair. No idea when that will be.