Chronically On Hold.

(Other Possible Titles)

The Incredibly Uncaring World of Healthcare

Why My Mother Sold Her Kidney: To Buy My Medication (A Cautionary Tale)

In case you didn’t know, this is why the current debate over healthcare matters. To me anyway. Maybe not to you. If not, you’re a selfish bastard and I hope you step on a Lego.

I have been unwillingly thrust into the healthcare debate. I never cared much about insurance because I’ve always had it. It was never a concern because it never needed to be. I was sick, I went to the doctor, I paid my copay, I got well. This makes me privileged and fortunate. Very boring story, actually.

Then I had not one, but two premature babies. Not at the same time, three years apart. But still, very expensive business, prematurity. My daughter cost approximately $118,000. To think that women still give birth in fields and keep working with a fresh baby strapped to their backs. Cheaper, but even more terrible, I imagine.

That was our first introduction. It didn’t cost us that amount, of course, but there was a remainder owed for both babies and we eventually paid it off after we figured out exactly how much we owed to the hospital, and how much we owed to the radiologist, and how much we owed to the anesthesiologist, and how much we owed to the people that mopped the floors and changed the light bulbs. Because they all charge separately and bill separately. It keeps things nice and clean and simple, no? You are correct. No, it does not.

Moving forward, we got back to our lovely complacency with insurance and normal life with kids. An ER copay here and there for croup and stitches. Doctor’s visits and a tonsillectomy. My son needed allergy testing and my daughter had a lazy eye that needed fixing. Nothing extraordinary or devastating, just typical kid stuff that they don’t tell you about in the “Aren’t babies cute, don’t you want to have one?” brochure.

Until my daughter got very, very sick indeed, and was eventually diagnosed with Juvenile Idiopathic Arthritis. It’s just like adult rheumatoid arthritis, but cuter and more insulting because it’s for children. She went from being an athletic 9 year old to needing a wheelchair in a matter of weeks. Just to have her diagnosed, we ended up spending $10,000 out of pocket AFTER insurance last year. That was our 20%. You can do the math on that one. We are still paying it off, and will be for quite a while longer.

Fortunately, we live in a time of great medical advances for JIA. Biologics, (also known as TNF inhibitors) are fantastic medications that must be injected to suppress the overactive immune system and have large, bold warnings on the boxes, HAS BEEN SHOWN TO CAUSE LYMPHOMA AND OTHER CANCERS IN CERTAIN PATIENTS. They seem to be the best advancement that big pharma has been able to make, and they love to charge you for it. However, they work.

Ironically, it isn’t the doctor that gets to decide my daughter’s best course of treatment, even though he is highly specialized and does nothing but treat children with rheumatic disease after studying it for years and years. No, it is the insurance company. Some random Joe (Or Joan) Schmo, sitting behind a desk somewhere in Utah, gets to decide if they will pay for the treatment the doctor has prescribed. So, we start cheap. NSAIDS (Aleve). That doesn’t work, shockingly, because it’s a FUCKING AUTOIMMUNE DISEASE AND NOT A STRAINED MUSCLE FROM PLAYING TOO MUCH TENNIS. Onto steroids, which are a miracle, but left her Puffy, and Angry, and Hungry, which are my three least favorite of the seven dwarves. Next stop, methotrexate, which is the first injection that we tried. The only positive thing about it was that the needles were tiny insulin needles and the medication didn’t burn. But there was a risk of her hair falling out and she was nauseated and sleepy on injection day because methotrexate is chemo. So yes, I have tiny bottles of chemo in my medicine cabinet as we speak, if you need some.

Finally, she failed spectacularly enough, jumped through enough giant hula-hoops of fire, stayed in pain for months and months longer than necessary, and the insurance covered the Biologics which of course put her into remission in less than a month. Pain free in a month, no sign of autoimmune disease in her blood work, all for the low, low price of $3000 a week. A measly $12,0000 a month, and you, too can put your horrible life-threatening disease into remission. Luckily, our copay is $30, so yay for insurance (we will ignore the fact that you denied her this for months because of cost and just call you an asshole behind your back, but thank you very much for the medicine).

This month, my husband’s insurance changed. His company likes to switch it up every few years. They are a small company, and it makes sense. Unless you’re us. The new cards were due to arrive in 10-15 days, and in the meantime, we were instructed to pay full price for prescriptions and submit receipts for reimbursement.

Um, no. Our receipt would have been about as much as a year’s worth of mortgage payments, which, by the way, we don’t have. Also, her medication comes from a specialty pharmacy that is mail-order and has to be shipped every 28 days in a Styrofoam cooler like one of those “meat of the month” clubs. It’s super fancy, and very complicated.

So, my week has mostly been sitting on the phone on hold, listening to absolutely awful elevator music while I waited for someone to come back on the line and transfer me to someone else who can help me. The pharmacy, the insurance company, the doctor’s office. No one wants to change the baby’s diaper, so they just keep passing it around. They are all very nice, all very professional, all very sympathetic to my plight, but no one can really help me. And of course, just a reminder, they didn’t call me, I had to call them. I also had to be polite, and calm, and not freak out and start calling people names, because without my initiation and well-mannered banter, she straight up would not be able to get her medication.

I have a few concerns with how this all plays out here. First, I am college educated, articulate, and because I’m a teacher, I’m off for the summer. I have the time to sit on the phone, which I do, literally for hours. This is not my first trip to the rodeo. I know that I am the one and only advocate for my child. No one is going to call me up and say, “Would you like your daughter’s medication now?” In a world of chronic illness, the one who calls consistently gets the lady on the phone to transfer her to the actual pharmacist himself. His name is Rick. He’s very nice.

It’s all fine that I can do this, and continue to do this, but what if I wasn’t educated or literate, or articulate? What if I assumed that my child’s medication (or my medication) was going to just show up? What if I didn’t know how to play the game, run the system, do the deals? What do those people do?

Well, for one thing, their kids don’t get into remission as quickly as mine did, if they do at all. Shockingly, I’m not OK with that. Yes, my daughter is lucky to have me (I’m not bragging, I’m just realistic; I work my ass off to stay on top of her medical needs. It’s the ONLY thing I’m organized about). But every sick kid (or adult) should be just as lucky.

My second concern is that the new insurance company is now dangling the threat of not paying for her medication in front of me. It’s not them, it’s not me. It’s every insurance company, and every sick person who requires expensive medication.  No matter which company we had, they would do this.  They have to do an authorization. They’ve opened a case to contest the medication. The doctor has to call and justify why she needs it. It’s not a new prescription, he argues. She’s been on it for a year. They respond, “Have you tried the NSAIDS/steroids/methotrexate…they’re all so much more AFFORDABLE!?!?”

If she stops her injections suddenly, we are going into a place that I don’t want to go; a place where I sell my kidneys to pay for her medication because she can’t stop it abruptly without sending her immune system into chaos.  (I used to say, a place where I sell my body, but I’ve recently turned 40 and I think that my kidneys will get more on the black market than my body, quite frankly.)

Why, oh why, should you care about this? Maybe you don’t. Maybe you won’t ever have to. I certainly didn’t think that I would. I have a mother with a horrible brain tumor disease that causes paralysis, and a brother who has struggled with severe chronic pain for his entire adult life from an injury (not his fault) when he was a teenager, so I thought that I’d already been given my cup full of chronic pain and illness. Unfortunately, the bartender didn’t think I’d had enough and served me another.

Not many of us expect chronic illness or preexisting conditions to be a part of our lives. They sneak up on you like lice or the stomach flu. One minute you’re fine, then WHAM. Bugs and vomit everywhere.

Have you ever been desperately sick with a fever, and you’re cold but you’re sweating, and your skin is grey, and strangers move away from you on the sidewalk because you resemble Typhoid Mary, but you still had to go to work, come home, walk the dog, and make dinner, even though you were pretty sure you were dying? (Every mother reading this nods her head simultaneously). That’s what it’s like trying to navigate healthcare when you or someone you love has a chronic illness. You have to fight, but you’re bleeding out the entire time, and all you are offered is an Advil and an icepack, except you were stabbed, so it’s not really doing you any good.

When a life changing diagnosis happens, wouldn’t it be lovely for the pharmaceutical world, the medical community, insurance companies, and quite frankly, our own government, to throw you a teeny-tiny bone? “You’ll be sick and in pain on and off for the rest of your life. There’s no telling what your body will do from here, but it’s probably going to get worse. So, to make up for it, we are going to put your medication on automatic refill, and the doctor will call to check in on you monthly, and since you’ve been paying for private insurance for your entire adult life, everything is covered after you pay your predetermined copay. Also, here’s a condo on the beach and we paid for a daily cupcake and puppy delivery service.”

I know that seems excessive and a tad dramatic, and the puppy/cupcake scenario could get messy, but if the companies/white men in board rooms wearing expensive suits who dictate the fate of my child’s health could make just one part of this battle easy, it would be fantastic. I’ll take anything. Be it making appointments, getting treatment, filling prescriptions, or just not billing me separately for absolutely everything including the label on the bottle of poison that may or may not cure my child, that would be super. Or they could just stop putting cement boots on my feet and dropping me into the ocean to see if I can swim before they agree pay for my kid’s medicine. Let’s face it, that’s what happens when you make healthcare a “for profit” business. You get whacked by a cannoli when you get too expensive to keep on the books. (Random Godfather reference if you’re confused by the cannoli comment).

The only “freebie” we’ve gotten so far was from a company that makes Biologics (not the one she’s on, but a similar one). It was a small string bag that contained a superhero cape and a book about kids with arthritis. It also had rub on tattoos, I think.  It was very cute, but really I just wanted the medication that would make my daughter wake up without crying in pain every three hours. Instead of being adorable, how about just making the medication affordable and accessible so that kids don’t have to grow up with deformed joints and chronic pain that will affect every aspect of their lives? Instead of the cape?

I have a dream. It’s not as amazing as Dr. Martin Luther King’s, but here it is. I have a dream that I will make one phone call and get the medication that my highly qualified doctor prescribed for my daughter, and insurance will agree to pay for it without making me beg. I have a dream that I won’t have to argue with people who aren’t doctors about the need for the medication and the catastrophic ending that could be my daughter’s future if they refuse to pay for it. I have a dream that she won’t be denied coverage in the future because she was unfortunate enough to be dealt a bad hand of cards and ended up with a preexisting condition at the ripe old age of 9.

That’s it. When someone is sick, they should be able to get help. Easily, and without their mother having to threaten becoming a street walker or sell her body parts to pay for it. I am not as pretty as Anne Hathaway, and if I have to shave my head and have my teeth pulled to save her life, it’s not going to be as romantic as Les Mis made it look on the big screen.

Is that really too much to ask?