First (and last?) Infusion

Tuesday I had my first Tysabri infusion. It went very well in that the nurse was good and I had no side effects. I feel no different than I did before. The thing about MS treatments, they don’t do anything to address present symptoms; they are designed to help lower the probability of an exacerbation in the future. But they might not. I guess it is better than nothing, but you actually have no way to know if it is helping.

The only problems I had during the visit were with check-in and check-out. We rode up in the elevator with an elderly couple, who were going to the same place we were. Of course we let them go first and even got the door for them. They seemed very kind, but at the window, man they were pokey. Apparently one of them was a new patient and I stood there for 18 minutes waiting to sign in (7 of those minutes were when Mrs. Pokey looked for her driver’s license.) Kara was seated and shot me two “incredulous” looks. I mean, I can understand a little slowness; I feel like an 80-year-old some days, but that was crazy slow.

The infusion center is at my neurologist’s office so I was familiar with the office. When I went to check out (2 ½ hours later) there was a back-up at the check-out desk. I’d never seen that before at this office. I was 6^th in line so I took a seat. After a few minutes of no movement I looked up and guess who was checking out? That is right. And they were there for a doctor’s visit, not a two-hour infusion. Why were they still there? Wait, dumb question. The desk was trying to schedule a follow-up appointment and had to repeat the information several (like six) times. I know it is insensitive to poke fun at old people, especially in a neurologist’s office. I was in no hurry nor really bothered. I was just was humored by it. At least I knew the date to avoid for my follow-up!

Unfortunately, the worst part of the day was ahead. When checking out I got ready to make my co-payment - $20, maybe $25.

“OK Mr. Hixon, that will be $1,040.”

I said nothing. I was in a stupor. Dollars? Seeing my look, she said, “Wait, it won’t be that much. The procedure is $5,200, but you only have to pay 20% of the “allowable” amount which is somewhere around $2,500. Oh, yeah, that is a lot better. Only $500. So lemme see, if I move my family to a pup tent and we hitchhike, and rob banks, maybe we can afford this. C’mon. It isn’t worth that, for my budget or anyone’s. Remember, you have no way of knowing if the treatment is even helping. The drug maker’s marginal cost is what? Eighteen cents?

I know my blog audience includes people that are rich, and people that are generous, or both, but I'm not soliciting, or accepting donations. I put the amounts only to give you a sense of either how jaw-dropping it was (or how cheap I am.) If Bill Gates told me he would pay for it, I still wouldn’t do it, not at $500 a pop. That is crazy. Let's see: An experimental treatment for me each month or feed Ghana? Hmmmm. I’m hoping that there is still some miscommunication within the complex insurance-reimbursement labyrinth but if not, I won’t continue the monthly therapy. It is that simple. I can to back to the shots for $35 a month.