Have you guys ever watched that show Extreme Couponing? It shows people who are so good at working the coupon system that they are able to go to the store and buy like 40 bottles of mustard, 3 cases of toilet paper, and 50 lbs. of ground beef for like $1.25. I’m fascinated by these folks, because dude, I love a bargain, and also, I’m impressed when people know how to work a system to their advantage. It’s the lawyer in me, really. I mean, finding rules that allow us to get what we want is the main thing we lawyers do. Working the system is our skill set, and I admire anyone who also has that skill set.

I want you to keep that idea of extreme couponing and working a system in the back of your head as you read this long explainer of my health insurance’s drug coverage.

I think I’ve talked to you guys already about how my old insurance wouldn’t approve a PET scan for me, and how my oncologist’s office was going to be out-of-network starting in 2015, right? Well, now I’m on a new insurance plan, and they don’t even require preauthorization for PET scans, so now I can just have them when I need them, and my oncologist is in network and everything is sunshine and roses and I was singing the praises of my insurance.

Then I got my first insurance statement of the year, and discovered that the copay for the denosumab shot I get every month is $761.29. And for the fulvestrant shot I just started on, it’s $780.82. You read that right. Every month, my drug copays for just those two shots are over $1500, so, over 12 months, that’s over $18,000. For just two of the drugs I’m on. When I realized this, I emailed my doctor, because we’ve been having a conversation about a new drug he wants to start me on called palbociclib, but he’s been worried my copay will be insane. Neither of us realized the copay for the drugs I was already on was going to be just as insane. In the email I said, “That’s OK, I’m sure the kids will love living in our minivan.” I believe his reply was “WTF.”

Now, the way my insurance plan works is like this: you pay your premiums, and you pay copays for things, like, the copay for my PET scan was about $300, and the copay for the denosumab is $761. But once you hit the catastrophic maximum (also called an out-of-pocket maximum) for the year, they no longer charge you a copay for most things. For drugs you buy at your pharmacy, you still pay copays, and you probably still pay that $10-35 copay for doctor appointments. But for things like PET scans or radiation therapy, you’re done having to pay for them once you hit that catastrophic max.

Now, most people don’t hit their max, because most people aren’t having the quantity of expensive treatments I am. Until I got cancer, I wasn’t even sure what our catastrophic max was (it’s $6000 under our current plan for in-network providers) because we’d never even gotten close to it. For the rest of my life, though, we’ll easily hit that max every year, so it’s something I considered when shopping for an insurance plan. And before cancer, I also didn’t know what counted towards that max, or what would still cost me a copay after we hit the max. So, when I got that insurance statement saying “These drugs are gonna cost you $1500 a month” it’s fair to say that I freaked the fuck out.

Then I called my insurance company. I explained the situation and asked if I’d continue to have these copays once I hit my catastrophic max. And their answer was “Nope. As long as you’re getting that drug at your doctor’s office, you won’t have a copay anymore once you hit your max.” I was so relieved, I wanted to hug the nice customer service rep through the phone.

I emailed my oncologist and said “Stand down the panic, after I hit my max, I won’t have these copays anymore.” But by then, he’d already sounded the alarm around his clinic and his pharmacy guy called me to discuss the situation, and also what to do about the palbociclib. The pharmacy guy explained that for a lot of these drugs, there’s a coupon system (I told you we’d get back to coupons!) to help cover the costs of the copays.

See, it works like this: the drug companies realize that the copays for their fancy new name-brand, not-available-as-generic drugs are going to be sky-high, because the drugs are so expensive. That denosumab shot? My oncologist’s office bills my insurance over $6000 a shot. That’s why the copay is so high, it’s an insanely expensive drug. Now, the drug company wants me on that drug, because me on the drug makes them money, and me NOT on the drug means they make $0. So, the drug company is willing to eat the cost of my copay if it means I’ll be on the drug rather than not being on the drug, because they’re making so much money off the drug that losing the $760 of my copay only makes a tiny dent in their bottom line. Making $5200 off the drug instead of $6000 is still better than making $0, right?

So, the drug companies have coupons you can get to drop you copay to a much lower level. According to the nice pharmacy guy, for denosumab, the coupon would drop the copay to $25. You just print it off their website, and the doctor’s office handles the paperwork, and boom, your copay goes from $780 to $25. Some of them even have a “try it free” coupon, so your first dose is free.

Now, for the shots I get at my doctor’s office, I mean, it doesn’t really matter what the copay is, because once I hit my catastrophic max, it’ll be free to me anyway, and I was going to hit that max whether I had these copays or not. But here’s where it gets tricky: for drugs you buy at a pharmacy, you continue to have to pay a copay. And that new drug my doctor wants me to try, palbociclib? It’s a pill, not a shot. Which means I’ll need to buy it from a pharmacy, and the copay won’t fall under my catastrophic max. Palbociclib costs about $10,000 a month. Cue the terror.

Remember, though, that I’m a lawyer, and working a system is a skill set of mine. So I went on the drug manufacturer’s website, and low and behold, there’s a coupon on there that will drop my copay to $10 a month. And they also have a “try it free” coupon. BAM. That’s some pretty extreme couponing, don’t you think?

But here’s the real problem with this: I’m a lawyer, and I’m good at working a system, and I don’t work anymore, which means I have time to do some extreme copay couponing. Imagine if I didn’t have time for this. Imagine if I didn’t have the skill to figure out how to work the system. Imagine if my doctor didn’t have a nice pharmacy guy to figure all this stuff out for me. Imagine if I didn’t have good insurance with a fairly reasonable catastrophic max. I might forgo lifesaving drugs, because of money. I might die even sooner, because of money. Let that sink in for a minute.

Our system of healthcare financing is a disaster. And what makes me crazy is that systems are set up by people. They aren’t inevitable–we, as a society, make choices about how to pay for health care. Other societies have made different choices, based on different values, with very different outcomes. We don’t have to live in a world where people die because they can’t afford health care. We have chosen this system, and we can unchoose it. Or, we can continue to force patients and doctors to make health care choices based on money instead of science, and I can keep doing my extreme couponing to get the care I need.