January Chores of the Chronically Ill

I was talking with a friend at work the other day about the insurance plans offered by our employer.  He is on the FlexPay plan; I have been on the High Deductible plan.  He has a card, loaded with X amount of dollars for the year; I expect to be kicked in the teeth paying for the full deductible ($4,500 in our case) but with everything in network covered after that, storing up in an HSA in the meanwhile to minimize some of the teeth-kickage.  He was explaining to me that he had bumped up his coverage a bit to $1,000.  I was immediately confused and asked for clarification whether that amount was supposed to last a month.  He clarified that the amount was going to last him the whole year.

That blew my mind completely.  I know that a higher percent of the health-related expense is covered on the get-go with the FlexPay plan, where insurance covers like 90-95% of in-network, but you pay the rest out of the FlexPay card or some such thing, whereas mine only covers 80% at the start.  But, still.  My major medication, the one that I go in for routine maintenance every eight weeks for, is $8,000 a dose.  That means at MINIMUM, I am $1,000 for a single week.  And that is NOT including doctors' appointments, my ostomy supplies, other prescriptions, routine checkups, or, God forbid, getting into an accident or coming down with pneumonia.

I...I don't understand that world where you could spend ONLY $1,000 on health, not even counting over the counter Tylenol.  I cannot relate.  There's no way to wrap my head around that; it's so entirely foreign.  The amount that he has for the full year I spend in less than I week to stay functioning.  My brain is sputtering trying to articulate my confusion.  It makes no sense.  Does not compute.

You may notice at the end of every year that even though the holidays are coming up, it is VERY busy.  On the one hand, yes, we're in cold and flu season, which means that people might be sick and therefore at the doctor's office--duh, I know.  However, the other mitigating factor is that those who know their deductible is hit for the year are trying to get services squared away before it restarts in January, to put off that pain for as long as possible, OR people how have been hoarding their FlexPay money for emergencies want to use it up before it goes away with the year roll-over.  This means that eye exams, dental care, and any other system or specialists that could be put off is now inundated with appointments, naturally while staff is requesting time off to be with their families for the holidays.  This means a LOT of back-to-back appointments, extended waits in the waiting room, and a long line at the hospital lab.  Happens every year.

And then January hits.  Even if you stayed on the same insurance, there's a new insurance card and revised forms to fill out the next time that you go to the pharmacy or the doctor's office.  Long waits happen for different reasons as the staff work to juggle the influx of paperwork and run out of clipboards for the waiting area.

If you're chronically ill, you learn to expect this.  Every appointment for the first couple months, you arrive a little early with your insurance card and ID already out to hand over, even in the places that know you on a first-name basis.  I had my first round of Entyvio (my 8K medication) last week.  Before that, I had already reached out to my insurance and my doctor's office to ensure that they had my new insurance card, just to be sure I didn't need to be pre-determined again because two digits changed on the card.  In fact, knowing that change was coming, I even called my insurance to ask if the pre-determination was tied to the individual or the member ID (they told me individual, but I was glad to be proactive because I was pre-determined again anyway).  But I know I have to be proactive like this, every January.  There's a list of chores that have to be done to ready my health billing for the new year.

1. Settle all of the paperwork for the insurance re-up with my employer and confirm that HSA deposits are flowing correctly into my HSA account for the new year.
2. Ensure that my doctor's office has my new insurance card PRIOR to the first Entyvio infusion--no one wants to be on the hook for $8,000 if they don't have to be
3. Call the co-pay assistance program through the manufacture of Entyvio to ensure I'm still enrolled in that program--more information on that here
4. I confirm that my ostomy supplies also have the updated insurance information, since those orders contribute to my deductible (each order between $300-$500), and I do this mostly online, ordering 3 months of supplies at a time
5. After my experience mid-year last year, I will need to get an appointment with an ostomy nurse to update my prescription for ostomy supplies, otherwise they might be denied by insurance and thus my order is also placed on hold, my order for important medical supplies
6. I figure in an extra ten to fifteen minutes for the first appointment with every provider for the year to write the same pieces of information, my consent to billing, and my HIPAA forms for each one; sometimes I'll call ahead for these forms to have them beforehand
7. Always, again, have my insurance card and ID ready for every appointment in the first three months of the year

Usually by the time that March hits, I don't have to expect any new paperwork and we have also come close to, if not hitting already, our deductible.  That's normal for us.  

One year, a little while back, Andy came down with something, I don't even remember what.  We had to pick up a prescription for him at Walgreens.  It took an extra couple of minutes because he had to update his insurance information--it was September, and he hadn't yet needed to update his insurance information in their system.  I was thoroughly disgusted, simultaneously happy for the marker of his good health but still entirely perplexed and envious that he hadn't any reason to have already done this by that point in the year.  It's a perspective I just don't understand.  He didn't understand the January ritual.  

Caring for Melvin is another set of tasks that need to be addressed in the January ritual of preparing for the new year of medical costs.  Caring for my ostomy requires its own specialist and own set of supplies, adding to my already full slate of pieces that needed tending to at the beginning of the year.  It's a facet of so many Americans' lives that we just don't talk about.  I recognize that my reality of dealing with the billing department of my various care providers is an entirely foreign experience to someone, just as even the idea of only spending $1,000 for the whole year is entirely foreign to me.  We've talked to a few friends of ours overseas about how much we expect to spend on health every year and especially what we could spend on health out of pocket without insurance, and it's an entirely bonkers idea to them (more on that here).  

Why do we accept this is okay?  When did this all become normal?  Why in the world do we actually think healthcare costs this much?  

[Insert your own favorite rage gif here--I couldn't decide.]

The short answer for me is that I will die otherwise, waste away at the very least.  I can't choose to boycott the medications I need to keep me going.  There's so much hidden maintenance to that maintenance--it's hard not to just give up, and some people do stop fighting, eating the cost or not pushing for a second opinion because the emotional effort of wading through the swamp of logistics is just too much.  And it's tough.

But in the meanwhile, I'm patiently checking things off the list, sorting my new pre-determination letter in one pile, reviewing the first of many Explanation of Benefits for the new year in my email inbox, already verbally confirmed I'm in my co-pay assistance program still, and intending to send a scanned update of my insurance card to my ostomy supply service within the next couple of days.  Got to keep fighting for my own health, one battle at a time.