My infusion yesterday was mostly uneventful. My mom jokes that it is just us having a really long visit, making it more enjoyable than it should be. We watched mindless TV, laughing about Ina Garten as she “surprised” her husband with a birthday lunch that he dutifully drooled over before switching over to one of my guilty pleasures: Four Weddings on TLC. If you’re not familiar, it’s a show where four brides attend each other’s weddings and rank them; the one receiving the most points wins a surprise honeymoon. Watching them nitpick each other’s events is entertainment gold. But the best moment of the day had nothing to do with us: there was a patient there with his whole family who rang the gong after his infusion, indicating it was his last chemotherapy treatment. It made my day to be there for it.
Today, I finished my external review request for the Nebraska Department of Insurance. Now an independent doctor not beholden to my insurance company will decide whether it has to pay for the medication I’m on or not. I spent hours researching and writing before doing some heavy editing to make sure it didn’t sound like a missive. After the DOI receives the massive packet I’m mailing on Monday, I should have a decision within 45 days.
I almost let the external review thing go after the drug company agreed to pay for my Ocrevus. My insurance surprisingly paid for the infusion costs, which were much lower than estimated, so I didn’t feel the urgent need to appeal that I did before treatment. Funnily enough, what changed my mind was a discussion with someone who works for the insurance company.
We’ll call her Sarah. She phoned last week after several e-mails were sent back and forth with online representatives in my attempt to get the insurance company to pay for the shingles vaccine I had back in June. They denied coverage because I’m not 50, so I filled out a claim form and sent in all the documentation requested, but I never heard back from them. After getting different answers from different people, none of whom seemed to know what was going on, my frustration grew.
Sarah sensed it when my most recent e-mail crossed her desk and decided that talking over the phone would be more effective. The first thing she did was apologize that I even had to contact them about coverage in the first place, saying she truly understood because she also has MS, and we even see the same neurologist. What they need next is an appeal from my doctor’s office that Sarah offered to initiate saying that the shot was medically necessary, and if it is denied again, I’ll be writing yet another request for an external review. Sigh.
We had a good discussion about the challenges MS patients have in dealing with insurance companies. Sarah noticed there were no claims for MS medications in my file and asked if I was being treated. When I told her I was getting Ocrevus free of charge from the drug company, she paused, saying she didn’t know that was a possibility. We were no longer talking as a patient to an insurance representative, but instead as one patient to another. She said she wants to start on Ocrevus herself, but she has only been on one of the approved medications, Copaxone, which is failing her, and our policies require failure on two before Ocrevus is a possibility. While on Copaxone, she has had new lesions form, and she’ll be seeing our doctor soon to discuss the next steps. I can’t imagine the politics of requesting an external review from the insurance company you also work for, but I could tell she was thinking about it by the end of our conversation.
I let Sarah know that I had my external review request prepared, but I hadn’t sent it yet because of a few concerns. What if the reviewing doctor sides with the insurance company? Would the door to their paying for my medication be closed forever unless I tried two lesser medications first? She lowered her voice and told me that sending that request was the only way to possibly jump off of this merry-go-round and have Ocrevus covered without problems from here on. And if the request is denied, I’ll be no worse off and can go through the process again next year. With that, my decision was made.
Maybe Sarah and I will see each other someday in the doctor’s office. Today, I’m grateful that there’s someone on the inside who personally understands the frustrating barriers the insurance company puts in patients’ ways and is doing what she can to help them get the treatment they deserve.
During my infusion yesterday, I submitted final grades for my summer classes. I don’t feel as weak as I did after my last half dose, so my husband and I walked together this morning, and now that the external review request is finished, I plan to enjoy the week ahead before returning to work full time on the 27th. My birthday is next week, and many of the days hold fun plans with friends and family. I’ve never been one of those “it’s my birthday” types, but spending time with my people will be especially appreciated for this one after a year of big changes. There is much to celebrate.