If you’ve been following me on Twitter, then you’ll know already that the Blue Cross Blue Shield Federal Employee Program denied my appeal of their denial of my combination therapy. Again the reason for the denial is that in metastatic breast cancer, these drugs aren’t standard of care, so they consider them “investigational/experimental.”

Here’s where the problem lies: I don’t have regular breast cancer. I have neuroendocrine breast cancer. Neuroendocrine breast cancer is very rare–about 20 reported cases per year in the US–and there is no diagnostic code for it in the insurance billing systems. There is no standard of care for neuroendocrine breast cancer because it’s so rare. Let me say that again, because this is important: there is no standard of care for my rare cancer. Literally every treatment for it is investigational/experimental.

My cancer didn’t respond to any of the standard treatments for regular ER/PR+ breast cancer, not one of them. The only thing it’s responded to is chemo and even then, it’s been hit and miss. Now we have genomic testing that shows that I have genetic mutations (NF1, BRAF, MET) that have drugs to match them, drugs that have a chance of effectively targeting my cancer and keeping it from killing me so quickly.

But because my rare cancer doesn’t have a code in the insurance billing system, because it’s coded as just breast cancer, my insurance company has refused to pay for the drugs, calling them investigational/experimental and not standard of care. Which is exactly what every other treatment for my cancer is: investigational/experimental and not standard of care.

So basically, my claim has been murdered by bureaucratic crap. The only thing I can do at this point is appeal to the US Office of Personnel Management (because it’s a federal employee plan) and ask them to overturn the denial. This would require a hearing, which means I’d need a lawyer. And in the meantime, I still don’t have the drugs.

This brings us to our current efforts to get me these drugs: applying for patient support programs with the drug manufacturers, Novartis and Genentech. The patient advocate at Avera Cancer Institute has helped me apply for both. Now, Genentech (maker of Avastin) has a pretty good program and we’re hoping to qualify under their income cap after they consider things like child care costs and medical expenses. Novartis (maker of Mekinist) has a lower income cap than Genentech and I’m not sure I’ll qualify without divorcing the husband I love so that I become, on paper, a single mom of two kids living on my disability pension and SSI. 

On top of the obvious emotional nature of getting a divorce when you’re happily married just to try to stay alive, a divorce would cause financial upheaval for us–my husband is currently on my insurance plan, so he would have to get new insurance through his workplace, whose plans aren’t as good as mine, and this would be an added cost for our family. In addition, his survivor benefits upon my death will be impacted unless we carefully word our divorce decree. Again, we’d need a lawyer to handle all this for us, which is another cost. And a divorce takes time; you can’t just go to court tomorrow and walk out of there divorced. Time is not something that I can waste.

So, if Novartis doesn’t approve us under the program, we’re also considering buying drugs in Canada. I haven’t researched any of this yet but old folks have been doing it for years, so why not me? We’re only 2 hours from the border. Or, maybe we do a GoFundMe, because in 2016 that’s how we’re all financing our healthcare apparently.

There’s a question that needs asking: why are these drugs so expensive? Genentech’s parent company, Roche, had a net income of about $9 billion last year. Novartis’s net income in 2015 was $17 billion, up $7 billion over over its 2014 figures. Meanwhile, patients are dying because they can’t access these companies’ drugs without bankrupting their families. Or divorcing the husband they love.

As I’ve said, I’m still hopeful that Genentech and Novartis will come through for us without putting us through a divorce we don’t want. And above all, I want to express how grateful to everyone, from the folks messaging me and tweeting at me with words of support, to the amazing patient advocate at Avera, to my team of doctors. All of this effort to try to save my life leaves me speechless. There aren’t words to describe what you all mean to me.

I promise to keep you all posted about how everything goes down. I’m hoping to have a quick response from Novartis and Genentech and I’ll be sure to let you know when I hear from them. Until then, keep tweeting encouraging notes to both companies, using the #SaveBeth hashtag. We need them on my side right now. Be kind to them, and hopefully they’ll be kind to me!