I kind of lost it today. It has been a long, arduous month and I guess I only had exactly 31 days of patience in me. The beginning of the year is always a fun time for me (really any of your chronically ill friends, check on us, we are not okay). What is super fun about it is that, when insurance deductibles start over nothing is automatic. If you aren’t paying close attention there is a good chance things you’ve had on auto-pilot for the last 11 months have just completely broken. No warnings are given, if you are not proactive, you will not find out until you don’t have the medication you need, and trying to fix it from that point is like a clueless politician trying to help after a hurricane, paper towels are nice but my house is a fish tank.  

I have about six medications that have co-pay coupons, all of which have to be individually reapplied to their respective medications taking the co-pays down from $300-$600 (on $1200-$8000 meds) to $10, if you are thinking to yourself, that’s not right, you are correct and perhaps you’d like to vote for people in favor of Universal Healthcare. Somehow, each year no one knows how to get at least one of these coupons applied, this year it was two. In addition to that, one medication needed a prior authorization, and another a physician approval for refill. All told I have probably been on the phone with my pharmacy for three, maybe four hours in the last two weeks conservatively. 

Yesterday, I spent an hour on the phone with my insurance. All for a medication that I only knew was in danger of not being delivered because I looked, not because I was warned by anyone, or any system. The pharmacy has already sent my med packets without it. I have been working on this for TWO WEEKS and I missed the cutoff to have it included in my shipment. Now I am in danger of not having it suddenly for the first time in 5 years (I run out officially in 6 days). The things it says can happen if you stop taking it suddenly, are not great. Which may explain the franticness of my calls. After back and forth with the pharmacy, with my doctor, and with my insurance (for over an hour remember) today I was told this medication not only was denied, but not eligible for appeal or exception. I spent an hour talking to an insurance representative yesterday! She went through my policy with a fine tooth comb, and she told me, all I needed was the pre-authorization from my doctor. My doctor sends it, and within an hour it is denied. You can’t tell me that the representative didn’t know that this medication was going to be denied based on the new formulary my insurance has. I don’t blame her for my formulary, I don’t blame her for the fact this isn’t covered, that is above her pay grade. I am mad that there is no way she did not see after looking through all the things that we looked through yesterday the REASON this medication was suddenly being denied even though I had a current pre authorization on file and instead of telling me that it was denied, she said to ask for a new pre-authorization.   

This medication has been keeping my head from exploding off my body for the last 5 years, but I guess now I get to either have completely debilitating migraines again (as opposed to the only mostly debilitating ones I have now) or try a different form of the medication that my doctor already was pretty sure would not work for what I needed it to do. I am SO limited on the kinds of medications I can take, and this is just devastating. I hate that people who aren’t doctors can decide what I am allowed to have. I can’t even get it without the insurance because it is too expensive. I have a $10 co-pay card but those only work if the medication goes through insurance first. If I wanted to pay for this medication out of pocket it would be somewhere in the neighborhood of $8000 a month. Yes really. Again, the system is super broken and perhaps we could vote in ways that make this less easy for the medical complex to do? 

That is just one medication. I still have one medication that had its coupon applied and disaster averted in time for my monthly shipment. Yay! But, I know not to get too excited because the likelihood that it will apply automatically next month without me calling and having it applied manually is about 1000 to 1. The final medication has been refilled by my doctor but the pharmacy seems to think that it was canceled by him. I. GIVE. UP.  I am going to give them a week to figure this out, I am not in danger of not having it until my March shipment. I am hoping that somehow this problem works itself out but I foresee another half hour on the phone getting it fixed. It would be easy to blame the pharmacy, but this has been an issue at almost every pharmacy I have used. 

In addition to all of this, I have been prescribed Wegovy to help me lose weight in preparation for transplant. Do you think the pharmacy can get its hands on any? Do you think my insurance will cover any other type for any reason other than being diabetic? Sure won’t. Am I a literal tenth of a point from being diabetic and kind of hoping my pancreas craps out so I have a chance at getting this medication so I can get a heart? Disgustingly, yes. That is what it has come to, it would be beneficial to me to be diabetic. Insurance does not want to help us prevent things, it wants to help us march ever closer to the grave and play chicken with our plot. 

In the midst of all of this I am feeling pretty gross. Truly not well, mentally, nor physically. I am not super certain why but I have a feeling heart failure is a big part of it. On top of that it feels like I am doing everything I can to put off transplant, get the medication and services I need, literally fight people for what I need to live and every time I get close, the carrot is moved just a little further away. Guys, I am starting to think you can’t get the carrot. It’s really hard to stay motivated to “get better” when it is already so hard. Don’t admit that though, you don’t want anyone to think you don’t WANT a transplant or don’t WANT to get better. Don’t let anyone think you might not be compliant. I want it more than anything, I spend all my time TRYING to comply, but the bureaucracy is crushing, the roadblocks are everywhere, and I just want the damn carrot already.