I OWE HOW MUCH??

As much as dealing with insurance raises my blood pressure, the prices set by pharmaceutical companies makes my blood boil.

Let’s take a look at what I receive in my infusions. The med is called GammaGard and it is an immunoglobulin. What is that exactly? It is antibodies, collected from the plasma of healthy people. There are always rumors on the CIDP Facebook page that there is a shortage or will be a shortage. So far, I have not experienced this. It makes me very nervous to think that suddenly it might not be available. The plan was always that my IVig infusions were a gateway to an oral medicine, so getting me to that point is what we are trying to do. More on that in a bit.

Because Gammagard is an immunoglobulin and CIPD is a rare disease, I have a feeling big pharm puts a high price on it just because they can. Not including my 4 day loading dose when I was diagnosed at Rush, I have been receiving infusions every 3 weeks for 20 months. According to my statements from the local hospital, my 2 day visit is roughly billed out at $35,000 each time. I have racked up $945,000 to date. This is where the love part of love/ hate with insurance comes in. Each time I come in and the insurance is billed $35,000 my copay is $110. Which still adds up to quite a bit of money over time but seems do-able compared to full price. So, the stories I see of people’s insurance companies suddenly not covering their IVig completely freak me out. And furthermore, $35,000 seems like a crazy amount.

My dad had IPF, which required a stupid expensive pill that he never could have afforded if not for a foundation we applied to that covers meds like that for people who can’t afford it. He was a retired farmer who lived simply. But why is the pill so expensive to begin with? A 60-day supply runs almost $13,000. Who comes up with these prices?

I started on Azathioprine back in the spring of 2022. It is an immunosuppressant. People who have had an organ transplant take it. It keeps your body from attacking the organ, or in my case, attacking itself. I needed to have bloodwork done every two weeks to monitor my liver enzymes, as this drug can elevate them. We slowly increased my dosage, working towards a goal that would allow me to slowly be weaned off the infusions. As we upped the dosage, I started to have side effects. My enzymes were becoming elevated, and I was nauseous a good part of the day. Lost some weight over that one. It was decided to switch me to another one. There are only about 3 or 4 to chose from so I was hoping this 2^nd one would work. It is called Cellcept and I have been on it about 6 months now, at the optimal dosage. My bloodwork is all coming back fine so I think we have a winner. I am taking 2000mg of it a day and a 3-month supply costs me $60. If I look at the receipt and see what it really costs as opposed to my copay, it is around $2600. Again, why so expensive?

We haven’t discussed my Rush bill yet. That didn’t arrive until several months after my admittance there. I was not looking forward to it. The day it appeared as a notification in MyChart was not a good day. My total bill for my 4 days stay there came to $74,263. My portion was slightly under $15,000. My heart sank when I saw that. How were we going to pay that? My husband has a good job, but I was just part-time at barely over minimum wage. We did not have a ton of money left over at the end of the month.  We basically just sat and stewed over this new predicament. Miraculously, about a month or so later, the bill was adjusted and cut in half, being absorbed by the insurance company. I have no idea why and I was not going to question it.  It is a sad day though when you are happy to have a $7,400 bill instead of twice that.

I will see my neurologist in March, and we will talk about spacing out my infusions to every 4 weeks and see how that goes. I am not sure if it then will go to 5 or at what point I can stop them totally because the Cellcept will keep me on an even keel. Remission is also not unheard of with this disease. That would be nice.

Regardless, the day I can stop spending my days in the infusion center is one I look forward to.