My insurance company, the federal employee Blue Cross Blue Shielf plan aka FEP Blue, denied the drugs for my combination therapy. They’ll pay for doxil without even a preauthorization necessary, but they denied authorization for both of the immunotherapy drugs. We went with Avastin over the cabozatinib hoping they’d approve it, but they didn’t.
So, now we appeal. It took a week for FEP Blue to send me the denial letter for the trametinib, and because it’s an oral drug, I have to be the one to file the appeal, so we couldn’t get started on that process until this week. The Avastin appeal has to be filed by #bestdocever and he didn’t get the denial until this week either. Because it’s not like it’s important to get this information quickly when the patient has terminal cancer.
I’m very grateful to have the team at Avera in my corner right now. Their patient advocate has written tons of these appeal letters, so she’s helping out with the appeal process. She’s also appling to Genentech (maker of Avastin) and Novartis (maker of trametinib) on my behalf to seek support via their patient assistance programs. I’m hopeful we’ll be able to get them to help without me going through the charade of legally divorcing my husband so I fit under their income caps.
Here’s the thing. When I look at the data on this treatment approach, and I see that the 30% of patients who couldn’t get combination therapy are all dead, and that 93% of the patients who got combination therapy are alive? Yeah, I don’t just see numbers. I see people. I see my friends. I see Michelle and Jill and Holley and Carolyn and Sarita and Adrian and Ishuan and Jean and Vickie and Jody and Maria and and and…and I think “What if they lived long enough for combination therapy? Would they be alive right now?”
I’m not gonna lie, I’m pretty depressed right now. I’m putting on a brave face most of the time, but it’s not fatigue keeping me in bed right now. It’s a sense that I’m fighting an uphill battle to stay alive. And I can’t help thinking, if it’s this hard for me, an attorney who knows how to navigate systems and has the ability to demand the best treatments, what hope is there for the broader cancer community to stay alive? What hope is there for my friends who are too sick to fight their insurance companies?
When healthcare decisions are made based on costs and not on saving lives, this is the outcome. We see it happening all over the world, not just here in the US–talk to anyone in the UK about how NICE has made it impossible for them to get access to the cutting edge drugs that are standard of care in the US. But here the disparities between rich and poor, between savvy and unsavvy consumers, feel particularly cruel and despicable. It especially hurts when you realize that the annual cost of my drugs is about the same as one day of pay for an insurance company CEO.
Does all this make you angry? Does it make you want to help? Good. It SHOULD make you angry. It SHOULD make you want to help. Here’s what I need from you. I want you to share this blog post around social media. Post it on the FEP Blue Facebook page. Tweet it at @fepblue on Twitter. And use the hashtag #SaveBeth.
Tell them what you think of their decision to deny me the combination therapy that could keep me alive long enough to see The Boy start middle school. Tell them what you think of their business model that puts profits ahead of patient lives. Tell them that I’m not ready to die. Tell them that I deserve to live. Beg them for my life.