Nobody talks about this part. The doctors don’t seem to be aware of it, your boss and coworkers certainly don’t get it, and you may not be able to delegate much of it to a trusted family member. It’s the administrativa of being unwell.
When you need a test or a treatment or a specialist, does your insurance cover it? You have to call, sit on hold, and ask. You might need a prior authorization you didn’t know about. Does your medication come from a specialty pharmacy? You’ll have to talk to your insurance company to get the contact info for their prescription benefits manager, and then you’ll have to call them to figure out which specialty pharmacy they work with.
Your copay may be in the hundreds of dollars per month, if you’re lucky. If you’re very lucky, the drug manufacturer may sponsor a copay assistance program, which subsidizes some or all of your out of pocket medication costs. Great! Now you get to make more calls to coordinate the copay assistance with the specialty pharmacy.
Time and Mental Energy
The frustrating thing about all this busywork is that you have to keep track of it when you have the least bandwidth for it. You’re already coping with a tough diagnosis and all the difficult, exhausting, and often painful symptoms that go with it, and on top of that, you now have to spend some of your little remaining energy on making sure all your providers, insurers, and pharmacies are coordinated.
These phone calls and recordkeeping tasks can take hours, if you’re even up to doing it. There are always a lot of details to organize and keep track of, which is annoying when you feel well and can be very difficult when you don’t feel well. Oftentimes, these tasks need to be done in a short timeframe, because you’re having symptoms and require a different medication or test. So you’re left trying to figure out if you need a prior authorization so your insurance will pay for a procedure you badly need, when you feel horrible.
Nobody Gets It
It feels ridiculous to complain about the busywork. It’s not a regular thing, and it’s not really that hard. But when you have to do it, it’s always at the worst possible time, and usually, it has to be you. The insurer or the pharmacy or the doctor’s office won’t talk to your family members or let them speak for you. (Well, you can arrange that, but it’s even more of an administrative project. You know, for your free time.) And you’re probably trying not to complain too much to your family anyway. They’ve heard it all before, they know you’re not well, and you don’t want to be that person who just complains about how badly they feel all the time. So you never even get to the administrative burden.
The Financial Piece
In the best case scenario, you have good insurance or Medicaid, so your out-of-pocket costs may not be too high. But if your insurance doesn’t pay for all the drugs and services you need, you may have even more headaches about how all your bills are going to get paid. You may have to buy mobility aids or home health equipment, or retrofit your home and car for wheelchair accessibility. All these expenses can add up to thousands of dollars.
For both a financial benefit and further complication, you can deduct many of your medical expenses on your taxes, but they have to add up to more than 10% of your adjusted gross income before you can take the deduction for your 2017 taxes. Next year, you’ll be able to deduct medical expenses over 7.5% of your adjusted gross income, thanks to the recent tax reform law, which may amount to both an additional few bucks to pay your other bills and yet another complicating factor to be aware of.
It’s frustrating and exhausting, this added busywork, even setting aside how expensive chronic health conditions can be. It can feel like extra homework for a class you didn’t choose to take. And anytime something changes, if you have new symptoms that require new medications or tests, or if your insurance changes, you have to do it all over again.