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. 

I will burn this village down to save it

Remember the movie Primary Colors? I’m sure a lot of folks have been thinking about it this election season, since it was based on Bill Clinton’s 1992 campaign–but don’t worry, this isn’t a political post. I’m thinking of the scene where Kathy Bates’ character tells the candidate and his wife that if they try to expose their opponent’s dirty secrets, she’ll expose theirs. And then she says, “Yes–I will burn this village down to save it.” Because that’s what I’m about to do to my cancer.

My latest brain MRI results are finally in, and I’m up to 7 teensy brain mets, from the 2 on the last scan. They’re still super tiny so #bestdocever is cool with us going on the vacation we’ve been planning forever, and rescanning when I get back. In other exciting news, my PET last week also showed progression–liver tumor growing, iliac tumor lighting up again, arm tumor lighting up brighter, and a lymph gland that briefly caused a scare that it might be a pulmonary embolism but thank goodness it’s just more cancer. 

So, goodbye Afinitor/Exemestane, and thank you for the giant mouth sores, the mood swings from hell, and the 5 lbs I gained in 7 weeks. At least you didn’t make my toenails fall off and give me extreme fatigue? Now it’s time to get serious. I’m going nuclear on this cancer shit. 

The plan is to biopsy a tumor, send it off for both genomic and proteomic testing, and then we go on our 3-week vacation, while taking something to tide me over until I get back (#bestdocever is still figuring out which drug that’ll be, but he promised it’ll be a gentle one so I can enjoy the vacation). Then I go see some doctors in Sioux Falls and they tell me what kind of craaaaaaazy ass combination therapy to take. They like to combine 3-4 different kinds of drugs, like a CDK 4/6 inhibitor and an immunotherapy drug and an mTOR inhibitor and chemo, like, all at once. The idea is that you have to target multiple pathways all at once, because if you just target one, it uses other pathways to just go right on growing. But if you target different pathways all at once, the cancer can’t figure out how to keep growing and it dies. This is how Hodgkins went from death sentence to usually cured–combination therapy, motherfuckers!

Then I fly home, and #bestdocever gives me the drugs and I feel like crap for several months, in the hopes that I’m one of the 93% of heavily-pretreated MBC patients who respond to this crazy badass insanity combination therapy in their ongoing study. Yes you read that right, only 7% of patients, all of whom were heavily pretreated, progressed while on the full combination therapy. Because I’m done with going from drug to drug to drug watching each one fail me in a matter of weeks or months. That leads to a 33 month median survival, which is some straight up bullshit. The standard of care isn’t working, so it’s time to abandon it and try something else.

I’m expecting this to be a pretty toxic regimen. The patients in those initial Hodgkins trials got horribly sick on the VAMP protocol. People asked Vince DeVita if his patients even spoke to him after he put them through that. But you know what he says now? “Yes, they do–and they send me pictures of their grandchildren.”

Oh yes, I will burn this village down to save it.