First, I’ve created an aggregated feed of Crohn’s disease on social media. Check it out!

My last post I talked about the resurgence of my Crohn’s disease. After three years of remission it’s suddenly returned and I’ve been dealing with the symptoms a couple of months now. After the usual period in which I just hope that it will go away, I finally made an appointment with the doc. My usual GI guy wasn’t available so I saw a nurse practitioner. In forty-five years I don’t think I’ve ever had someone sit down and talk to me about my Crohn’s as long and thoroughly as she did. I recommend going to nurse practitioners, because they will take the time to listen to you. My GI doc is a really nice guy, but he always seems like he’s in a rush to get out of the room.

Last night I was calculating how much Humira would cost. I came up with $8000 a year. But that’s not right. The direction of this post has changed since I started writing it. I emailed James Romeo, the agent that handles my supplemental Medicare insurance. He got back to me within the hour and walked me through the coverage and the dreaded “donut hole” in Medicare prescription coverage. I’ll try to explain that in a future post. I already had a pretty good handle on that, but our conversation revealed that I’d made a mistake when I was calculating the cost in my head. Hell, it would only cost around $4000 a year. Whoopee! James says it’s the most expensive medication he’s run across. Do I get a prize?

I suppose you could make the argument that the folks at AbbVie spent a lot of money on R&D to develop Humira and they need to get that back and make a profit. I’m not too worried about them, Humira sales grossed $14 billion last year. That’s with a ‘b’.

We have saved for retirement and I thought we were going to be in great shape financially, but that number could mean we wouldn’t be able to do all the things we’ve been looking forward to.

One of the things the NP said was  that continuing without more aggressive treatment might result in requiring surgery. When I think about it, from my standpoint surgery would be more cost effective than the drug. With the Medicare coverage that I have I could get to the deductible pretty fast. I could just roll the dice and hope that I didn’t have to have surgery too often. After all it hasn’t happened yet. Another argument was that I wouldn’t want to go on prednisone four or five times a year. Well I’ve needed prednisone only a handful of times in 45 years, maybe twice in the same year one time. Another temptation to just roll the dice.

Currently there is a class of drugs coming on the market called biosimilars which work like Humira and the other biologicals, but presumably would be less costly. But the bigger question is whether they work and what are the side effects.

Update on my condition

I reported in with an update for the doc, mentioning that I had pain and bloating, so now she want me to come in for a CT scan next week. Bah.