My evolving treatment plan
Last week I was supposed to receive my 8th of 12 immunotherapy infusions. The series of 12 over a year is intended to improve the odds of a recurrence of the melanoma. My oncologist told me and my reading confirmed that the 12-infusion course of treatment is standard for my diagnosis.
My insurance provider seemed to agree, as per their policy. The insurance company:
considers continuation of nivolumab (Opdivo) therapy medically necessary for … Adjuvant treatment of melanoma … for continued treatment (up to 12 months total) …
When the doctor‘s office sent me home infusion-less last week because the insurance had not approved the treatment, I was optimistic that it was an oversight and I would be back in the infusion room soon. Instead, on Christmas Eve afternoon the insurance website informed me that coverage was denied, with the word ‘Denied’ displayed in a festive red. The only positive aspect to this interaction was that a robocall didn’t also intone the news.
Expanding the summary line on the insurance website showed this brief and unhelpful explanation, with a promise of more info to come in the mail.
That letter did arrive but didn’t help clear things up. The physical letter was a word salad stating that I could only continue treatment if a scan indicated treatment was necessary — a scan that they wouldn’t approve in November.
The oncologist is working on my case — it’s in their best interest that I live — and I’m trying to stay calm as I allow the process to unfold: peer-to-peer communication between doctor and insurance company, probably an appeal, maybe some other action I’m not aware of.
Some junctures are clear in terms of my next steps. Schedule the appointment. Call the employee benefits team. File the claim. This time feels a bit murkier as I wait for the oncologist‘s auth team to fight my case.
I’m feeling a bit left out of my own treatment plan. My oncologist initiated it in April. The insurance company has mainly ok’d benefits. But with all of the twists and turns and negotiations in November and December, the plan doesn’t feel like mine at all anymore.
I’ve been a model patient, so it's especially painful to encounter roadblocks that seem arbitrary and run counter to medical counsel from my doctor. Perhaps my condition is not as serious as I’m building it up to be?
No, I don’t think that’s accurate. As one friend said when I described my first surgery to her: They really wanted that out of you.
Last summer I read a book by Jason Kander: Invisible Storm. In it he recounts his experience suffering from PTSD and how he spent years not believing he was worth receiving the care he needed. He ended up seeking and receiving help, and writing about it.
At that time I was coming to terms with not being able to work. I could no longer push through like I was accustomed to. I was uncomfortable with receiving support, especially financial. While my situation couldn’t be more different than Jason’s, reading his book helped me to believe that it’s okay to receive help.
Now I’m in a newer stage of my illness and treatment, a phase that’s not as clear as the “remove the tumor” phase. I understand that even medical professionals are not going to all coalesce around one path, which makes it even more important for me to summon courage to stay with and own my evolving treatment plan. I’m eager to see what the new year will bring and how I can work my situation.
Puta madres!!!!
Courage, friend.