Insurance Woes

Well, my friends, I tried not to write this post. I really did.

It’ll be okay, I kept telling myself, somehow, after my insurance denied coverage for the medication I want, Ocrevus. My MS nurse had told me to expect an initial denial, but it still stung to see it in black and white. The office filed an appeal on my behalf, and a swift second denial followed. A doctor in Pennsylvania who has never spoken to me or examined me declared on behalf of my insurance company: “There is no evidence that this patient has highly active disease that would support the use of [Ocrevus] as initial disease-modifying therapy.” Here, we disagree. I’ve had two debilitating relapses in less than six months, one permanently affecting my vision, the other leaving one side of my body weak. That doesn’t even take into account the flare-ups; the one I’m having now has my left hand and foot constantly tingling and numb. I’m terrified another relapse is looming.

It is my insurance company’s position that I should have to take at least two lesser oral or injectable medications first and fail on them–doing more permanent damage to my body–before I am eligible for any infusion therapy. Basically, they want me to get much worse before I can be given the most effective medication. I am still having trouble understanding why insurance companies are allowed to deny FDA-approved treatments. Decisions about the most appropriate medications should belong to doctors and patients, not insurance companies. More confusing is this sentence from Pennsylvania’s finest doctor for sale to big insurance: “[Ocrevus] is not more costly it is usually not more costly than alternative interventions.” That word salad is presented here exactly as it was poorly written in my denial, which shows how much time and care he spent on my case. Essentially, he’s admitting that the treatment I want is not more expensive than the other treatments, so I don’t understand or accept the road block.

I am waiting to hear back from my clinic to talk about appealing to the Nebraska Department of Insurance for an independent external review. I hope that will take care of the issue, but presently, I’m stuck in limbo, waiting to see if I can get my treatment one way or the other. It’s a terrible place to be. The drug company has yet to get back to me about whether I can qualify for free medication this year, and even if it does, that will require more time and paperwork, delaying treatment. In the long term, I want my insurance to cover it. There’s no good reason for it not to do so. Technically, I could get my first infusion one week from today when the waiting period following my vaccines is over, but it doesn’t look like that is going to happen, making me worry about getting it underway and adjusting before going back to work full time next month. Meanwhile, what effect is this stress having on my MS? Oh, the frustration.

7 thoughts on “Insurance Woes

  1. Erin I am so sorry for what you are dealing with the insurance companies. What I can say is that insurance here in the states is horrible and very corrupt. They all seem to be in it for the most money possible and forcing people to do other medications before they can take they want is one way for that. I really do not mean to be so negative, especially because of what you are dealing with I just really hate what insurance has become. I really hope things get better for you. One positive thing I will say is do not give up. You have to stand up to these people in order to get what you want and need. We always have to fight for our own health because no one else is going to..

    Liked by 1 person

    1. Thank you, Alyssa! It is frustrating and disappointing, but I do not give up. Ever. So they’ll be seeing me at the external review, where I’m confident in my case. Hopefully, Genentech will cover it for me in the meantime, with my insurance soon to follow. Fingers crossed!

      Liked by 1 person

      1. I am so happy to hear that you will not give up with this insurance issue! Honestly Erin that is the best attitude to have because it seems like these people try to keep us down! I wish you all the luck in the world and really wish there was more I could do to help!! Fingers and toes crossed sweetie!

        Liked by 1 person

  2. Susan Ely says:

    Do not give up on fighting the insurance company (I know you have the same one as I do)! They repeatedly denied something for me, which was thousands and thousands of dollars. It finally went to a third party along with a letter I wrote on my own behalf, and it was decided they had to cover my bill. If anyone can write a kick-ass letter, it’s you, my friend!

    Liked by 1 person

    1. Thank you, Susan! I’m so glad it was decided in your favor. I’m going to request the external review but hoping to be treated with assistance from the drug company in the meantime (been waiting all day for their call, which I’m beginning to fear isn’t coming). Before the appeal, I’m waiting for all the documents used to make the decision to deny me to arrive from the insurance company, which I had to request in writing last week. The whole system is designed to wear us down, isn’t it?


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