The Cost of Chronic Illness

In 2019 I thought I’d keep track of the cost of chronic illness, or at least mine, for a year. Keep in mind this year I was pretty stable AND I’ve gone a whole year without an ER visit and anaphylaxis. Winning!! The last time I went a whole year without an ER visit was when I was in high school. My doctors and I are all thrilled about this.

It’s important to know that I have really good health insurance through my employer. I will fight tooth and nail to keep working so I can keep my insurance. My insurance is generally very good about covering whatever I need. They’ve pushed back on a few things, including iron infusions this year, but nothing that was critical. Unfortunately, this year they changed how they were billing some of my more expensive medications and that has increased my actual out of pocket expenses this year. (I barely squeaked in hitting my out-of-pocket maximum and had it cover my new BiPAP machine. Whew.) In past years, with basically the same treatment plan, I hit it in May. And next year my out-of-pocket maximum is going up by almost $1000. Which means, unless something drastically changes, I won’t hit it next year. It’s hard not to hit my out-of-pocket max–I really love having my insurance cover everything at 100%. 🙂

Medical Bills

Any guesses what my doctors billed out? 

$295,000. For a year. To keep me stable. $225,000 was prescriptions. Painful, right? 

It was a cheap year too. No procedures or surgeries in 2019. (In 2018 it was about $400,000.)

My actual out of pocket expenses were around $5,000. Some of that was covered thanks to prescription co-pay assistance programs put on by the different drug companies that make my medications. Plus whatever over-the-counter medications or supplies I bought that didn’t go through insurance.

I don’t know what the answer is for health care in the US, but I have no idea how people with chronic illnesses who are under or uninsured are expected to be productive, healthy members of society.

Anyway, back to the numbers for a “normal” year where my doctors consider me stable. Remember, stable means not getting worse. I still regularly have reactions to whatever my body wants to react to. 

Other Costs

I thought it would be interesting to keep track of how much medication I took and how much effort I had to put into staying as healthy as I can. 

Benadryl is the biggest rescue medicine I use. Whenever I start having a reaction, I take 50mg (2, 25mg pills) of medication. So 318 really reflects 159 doses. Fortunately, we found a new-to-me mast cell stabilizer that is helping (Ketotifen) and since starting it in September I have needed less Benadryl. Which is good, because there is a concern that frequent use of Benadryl can lead to dementia. Goody.

The same counting thing happens with Tylenol. I usually take 2, 500 mg pills, so it’s really 127 doses.

I keep a list of all the medications I’m on or use as needed. We added a few this year. I’m now on 28. Sigh. We’ve tried to take me off some of them. It didn’t work out. 

For fun, here’s a photo of all the pill bottles from all my medications this year. This doesn’t include all the immunoglobulin vials from my weekly infusions (that just seemed excessive to keep, hahaha).

In my doctor’s appointments numbers, I include the weekly infusion treatments that I do at home. 

It’s exhausting trying to keep everything scheduled and straight in my calendar. I also included the time and energy for phone calls and emails between me and my doctors and the insurance company to be part of the cost of chronic illness. Chronic illness takes so much effort and work to manage. Nothing ever is easy and takes multiple contacts to arrange, approve, finalize, or confirm. It’s a massive energy cost.

But It’s All Worth It

Good news is that all of this resulted in:

• 0 ER visits
• 0 hospital stays
• 0 events of anaphylaxis
• 0 chest infections
• 1 minor cold that I got over in a few days
• 1 week of prednisone (that’s a normal course for a significant reaction)

Those are some excellent stats. It makes all the above-listed cost of chronic illness and the overwhelming amounts of medication and time feel worth it.