In my early days after diagnosis with MS, it seemed like I was always accidentally stumbling across strange and unbelievable drug situations that at the time felt like they were just too crazy to be true.

There was the time I found out that you could get crazy cheap Modafinil at Costco (spoiler: it ended up being too good to be true). Or the time I learned that even though cannabis wasn’t really my jam, CBD really did help my pain (emphasis on helped and not cured). Then that awesome time I learned that I had been grossly over-paying for my miracle walking drug Ampyra.

Funny. Nothing crazy has happened like that lately until today and I simply had to share. Coincidentally, this story also concerns the magical walking drug, Ampyra, that I recently discovered really does work for me.

I got a call from CVS Caremark Specialty pharmacy about my recent refill. There was some problem with the order. No worries! I would call the lovely folks at CVS Specialty Pharmacy and get this straightened out straight away.

When I started taking Ampyra, my insurance company was charging me $250/month for 60 pills. I wasn’t thrilled about that but when you tell me I can take a drug that will help my legs work a tiny bit better, I’d rather go without something frivolous and fashiony in order to fund that cost.

I felt incredibly fortunate that I had the ability to pay for it when I knew many who could use this drug wouldn’t be able to pay that kind of ridiculously high monthly cost. When I later learned about the wonders of drug companies and co-pay assistance, I assumed I wouldn’t qualify but somehow I did. Merely by having private employer-provided health insurance, Acorda co-pay assistance got my monthly cost down to $40/month. Wow! Thanks Acorda Pharaceuticals. That’s might nice of you. I promptly reallocated funds to my fancy handbag kitty.

But wait. There’s a little black rain cloud hanging over my head when it comes to Ampyra. Mylan couldn’t keep up with the demand for dalfampridine, the generic form of Ampyra so CVS Specialty was calling to let me know I would be getting a different generic from a different company and my cost would now be $50/month.

Wait. So now that’s not quite as bad as the $250/month I started out with but it was $10/month MORE than what I had paid for the Acorda branded Ampyra. I asked the helpful woman from CVS Caremark to tell me if that made sense to her. She agreed it seemed illogical to pay more for a generic. I asked her to run the cost for the branded drug for me, just for fun, since I still had the co-pay assistance on my side and I could save $10/month! I thought I was pretty damn brilliant.

“M’am I put your request through your insurance company and the branded drug came back with a monthly cost of $1,932.10. Acorda will give you $1000/month in co-pay assistance so your monthly charge will be $932.10,” said the ever-so-helpful CVS Specialty drug rep.

“Um, yeh, that’s crazy. I was getting this drug for $40 a month just two months ago. And YOU are my insurance company. My prescription drug coverage is through YOU, CVS Caremark,” said BBAD.

“No M’am, we are not the same company exactly, we’re a division of the same company. That part of the company determines what they will pay for the medication based on your coverage and then my part of the company distributes the drugs through the pharmacy division,” said helpful drug rep lady on the phone.

“Ok, so what you’re telling me is you have control over what you will pay, as my insurance company and then you pay YOURSELVES what you determine the fair amount is so you win no matter what but I lose $10/month unless I’m willing to pay $932.10 for a branded drug I was paying $40/month for a mere three months ago. Do I have that right?” I’m starting to think I’ve lost my mind here but CVS Specialty drug rep lady is not following my logic at all.

“Well, m’am, the other generic drug manufacturer doesn’t offer co-pay assistance and the insurance company is not willing to go lower than $50/month. Should I process your order? Shall I use the credit card we have on file then?”

My $50/month drug arrived today. Mylan isn’t making dalfampridine any more so I truly have no choice.

In the meantime, Acorda is suing Mylan for protection of their patent which is probably a futile effort in and of itself but suffice to say that should they win, I might go back to paying $40/month that is if they continue to offer co-pay assistance at all. I haven’t found online whether or not that case has been resolved but I’m guessing that since there is yet a third company now making the generic form of the drug, Acorda is probably shit out of luck.

But are they?

Actually, I think it’s us who are shit out of luck. Me and my fellow users of the magical walking drug are the ones held hostage by the whims of drug companies, insurance companies and specialty pharmacy companies (and yes, they are the same company) who are all in cahoots.

CVS Caremark can’t change the bullshit reality that they are working both ends of a very fucked up system to their own advantage. Or the reality that many employers go with their fucked up system, especially giant companies like the one that I work for, because they get the best rates from CVS Caremark which saves money for other giant companies that provide awesome health plan benefits to their employees because…well. It’s obvious by now that if you both determine the rates AND you get paid the rates you’ve determined you’re in a win-win situation. So that saves yet another giant company even more money. Right?

Right.

Anyway. I thought I’d save some of you the hassle of figuring this mess out for yourselves if you also happen to be on the miracle walking drug that is now available as a generic. You can thank me later.

You really can’t make this shit up.