The external review of my insurance company’s denial to cover Ocrevus came today. Despite my very best effort, the reviewer sided with the insurance company, saying there isn’t enough evidence that I have aggressive MS (a concept that doesn’t have a precise definition, by the way). There is no appeal beyond this one unless I want to file a lawsuit. I’m certainly not dismissing that idea at this point. These arbitrary policies aren’t going to change unless someone challenges them successfully. But my energy really needs to be saved for taking care of myself, and enough of my money already goes to covering medical expenses. For as long as I can work, I have a lifetime of out-of-pocket maximums to take for granted, $4,350 every year, to say nothing of the other related expenses that insurance doesn’t cover.
Disappointed doesn’t come close to covering how I feel. I’m frustrated and angry, bitterly so. Part of me would like to pick the most expensive medication on the company’s approved list just to make them pay for it. But I am stable and feeling relatively good on Ocrevus, and it comes without the terrible side effects of the other options. It also offers me the best hope of keeping disabling relapses and lesions at bay for the longest time. The drug company covered my first two half doses and will probably cover my next one, but what happens after that? I honestly don’t know.
I didn’t prescribe Ocrevus to myself. My neurologist–an MS expert–and I chose it together. My goal isn’t just to manage MS or slow it down a little; it’s to reach no evidence of disease activity (NEDA), and Ocrevus offers me the best chance of that. I don’t want to gently suggest that my MS take a break with a lesser medication. I don’t want to pet it or coddle it. I want to destroy it, and lacking a cure for it, go after it as aggressively as possible.
I’m still hopeful that this will work out somehow. The last thing people with chronic diseases should have to do is fight for coverage of the FDA-approved treatments their doctors prescribe. It’s doubly upsetting in this case because Ocrevus doesn’t cost more than the options on the insurance company’s preferred medications list. In fact, a study done in 2017 showed that starting a patient on Ocrevus instead of another approved medication can save insurance companies hundreds of thousands of dollars over the lifetime of a patient due to far slower disability progression. Shouldn’t slowing disability progression as much as possible be the goal of both the patient and the insurance company? All MS patients deserve immediate access to the medication that will bring them as close as possible to NEDA, including me.
I miss cigarettes on days like these.