When Mike was first diagnosed with glioblastoma, the hardest part wasn’t watching him struggle with radiation effects, or lose his hair, or the constant battle to make every piece of information that concluded with its fatality invisible to the two of us. The hardest thing was getting him his medications.
Not dealing with insurance, they actually made that part of his treatment pretty easy. At first.
Each month I marched into the pharmacy with prescription in hand, ready to do battle. And before the skeptics out there ask, no, there were no refills. No, we could not plan on refills. Every month, a brand new prescription. This is because the dose of his chemotherapy was carefully attuned to his fluctuating body weight. If he lost too much weight, new dose. If he gained too much weight, new dose. If he his platelet levels dropped, new dose. If his white blood cell count spiked, new dose. I could not tell the pharmacy what his dose would be from one month to the next, even when it remained consistent for months at a time. And because of the protocol of the trial he was participating in, I couldn’t even GET a prescription until three days before he needed to start taking his chemo.
So every month, on a Monday, I went directly from his MRI and oncology appointment to the pharmacy, and I terrorized the pharmacy techs.
Here’s the thing, I wanted to believe it wasn’t their fault. I wanted to believe that every single one of them understood the gravity of their jobs, that they were doling out life and death to people. I always walked away believing the full extent of their training was a 15-minute video on how to use the point of sale system.
I explained each time, every fourth Monday at 12:45 pm (give or take a few minutes for traffic), that they needed to order this medication from the single factory that produced it so that it would be on the next delivery, and they needed to do it IMMEDIATELY. They would counter with a condescending explanation that there were hours before their shipment orders went out. I responded with a rehearsed list of protocols from the factory, in a different and earlier time zone, explaining that if they waited until the end of the day to order the medication, the factory would be closed, wouldn’t be able to receive the order until the next business day, and the medication wouldn’t arrive on time.
They promised it would arrive on time. Visibly annoyed, they shooed me away.
It almost never did. Month after month they fucked this up. This simple phone call to order the medication. Without fail, I called on Wednesday night, to ensure that when I arrived on Thursday morning the medication would be waiting. It almost never was.
Some months, they waited until after 3:30 pm to call, and the factory was closed. Some months, they waited until the next day. Sometimes, they ordered the wrong dose. One time they ordered his 250mg in 10mg pills, meaning he had to swallow fistful after fistful to achieve his dose. There was one horrible month that they dispensed his medication to another patient by mistake.
By this time, I was no longer somebody they could shoo away. By this time, I was a soldier marching into battle, prepared to use every weapon in my arsenal to ensure that the chemotherapy saving my husband’s life would appear at the time he needed it. I screamed. I guilt-tripped. I cried. I help up lines and inconvenienced other patients and customers. I demanded names and recorded ID numbers. I offered preemptive invitations to the funeral, promising a seat of honor at the graveside so all of us could see the incompetent idiot responsible for my husband’s death.
It wasn’t kind. It wasn’t patient. It wasn’t remotely chill. It was barbaric. There was a day when the pharmacist waited for me outside the shop, standing in her white cotton coat in a sleet storm, and stopped me on the way in to tell me not to make her techs try. I told her that the techs needed to stop screwing up my husband’s medication. She said she would talk to them. I said she’d had eight months to talk to them and they still couldn’t get it right. She scolded me and left me in the cold, and I although I felt bad for how sad they were, I couldn’t find it in myself to feel guilty. In those eight months, they had never gotten it right. Never. In eight months, my job was to fight for a medication not against insurance, not against availability, not against anything but the incompetence of the people between me and my husband’s chemotherapy.
I am not proud of myself, but I often asked myself if I would do the same, now, with the grace of hindsight.
This weekend I found out the answer- yes. Absolutely yes. Absolutely, I would do it again.
As you’re probably aware by now, it’s January. And if you’re an American, you’re also aware that the new year means all of the healthcare costs begin anew. You start fresh as you have to meet your deductible. You start from scratch scrabbling for coverage. All of it starts all over again, every January first.
Mike takes a lot of medicine, almost none of which is cheap. We have a five thousand dollar deductible on our insurance, and we have only once made it to February without meeting it. Usually, because Mike has an MRI- $2.5K a pop. This month we’re meeting it without an MRI.
In this month alone, we have already spent almost $4K on medication, more than half on a single prescription. So when the second prescription total came in at about $1200, I did what I did last year, I looked for options. Savings plans, coupons, you name it. And I found one. I waited for the discount card from the manufacturer to arrive in the mail, all while Mike’s supply of a medication that prevents seizures when used properly, but that CAUSES them (sometimes dramatically) if he misses a dose. The discount card arrived, bringing that $1200 down only to $600. “Only,” for a family of five currently on a single income, in a month with a guaranteed $5000 financial hit bearing down on us like a semi truck.
Mike, being a bit forgetful, didn’t pick it up when it arrived on Thursday, with one day of medication remaining. I, being exhausted and overwhelmed with my preparations for an international trip (with the time change, I’m going to assume I’m in Spain when this posts), I missed the pharmacy before it closed on Friday. So Saturday morning I started the day ready to get the medication he was now out of. Completely. We were reaching skipped doses.
For those of you in Chicagoland this will be old news, but there was a blizzard. A blizzard, coupled with a few children’s activities I had to bring the children to. Mike couldn’t drive, not without his anti-seizure medication, but the roads were getting worse and worse, and I kept getting delayed. I finally arrived at the pharmacy at 5:07pm, seven minutes after it closed.
Mike’s medication, potentially life-saving medication, was on one side of a locked grate, and I was on the other. I called another pharmacy. They couldn’t fill it because it’s a controlled substance (why the hell is a seizure medication a controlled substance?) they couldn’t transfer the prescription, that could only be done by somebody inside the closed pharmacy. He recommended I talk to a store manager about calling the pharmacy manager back, as they had only been gone about 15 minutes.
The store manager absolutely refused. No amount of begging or pleading could convince her even to ask. I left the store, my three children in two (sobbing hysterically at the sudden change of events), while I called and called and called and called and called Mike’s doctors, hoping any of the numbers would go through to a call center that might be able to page a doctor to send a new prescription into a different pharmacy. Two hours into that ordeal, I reached a fellow for a doctor who wasn’t even Mike’s prescribing physician. He immediately called in the prescription, which the pharmacist assured me was in stock, and I went to the other pharmacy to collect it.
But insurance wouldn’t cover it. They wouldn’t cover it because they’d already approved it at the other pharmacy, and couldn’t approve it elsewhere until the CLOSED pharmacy removed it from their accounts.
No matter how many times I explained to the pharmacy being closed WAS the problem, they repeated that it didn’t matter. They couldn’t approve it anywhere else. And with $1200 being what we paid AFTER INSURANCE (not with full coverage, but some pre-deductible), you can only imagine the cost without.
Another two hours went by while I first pleaded with insurance, then things turned a little ugly. I said unkind things, not personal, but unkind. I made a scene in a pharmacy. I wouldn’t be surprised if people I know saw me standing in the tampon aisle, incandescent with rage, fighting with the insurance rep, looking for any other options. And we did find one- Mike could be admitted to a hospital. In a hospital, a doctor could administer that medication from their supply, and it would be billed through the treatment plan rather than the prescription plan.
In my loudest, angriest also I bellowed that the insurance company MUST understand how much more it would cost THEM to cover a hospital admission than to cover medication, but it didn’t matter.
Eventually, the incredibly unlucky but happy fellow at one of the neurology practices that sees my husband struck on an idea. We would pay for two doses of the medication out of pocket, completely out of pocket, and he would call in a prescription for emergency rescue medication for the effects of withdrawal.
This was the SOLUTION.
Five hours after I missed a pharmacy closing by seven minutes, and by those seven minutes only because of a damn blizzard, I was prepared to spend hundreds of dollars on two pills, and whatever the cost might be for the additional prescription.
Standing at the desk for the fourth time in as many hours at a pharmacy that is not my own, I broke down a little. I explained how desperate I was to take care of this before leaving town in the morning, leaving for Europe. The pharmacist stopped ringing me up.
“If you’re the caregiver, and you’re leaving town in the morning, they HAVE to cover it. There’s a policy for patients and caregivers leaving the country who need critical meds. Hold on, I’ll call and see if I can get it though.”
For another half hour I waited, listening to his frustration with the insurance company in the distance. They refused, probably suspicious of the sudden change in the request. Nevermind that it was the truth.
He felt so bad about getting my hopes up that he dug through his own system to find some secret discount to apply to the prescription. Who knew that was even a thing? I returned home six hours after the first time I arrived at a pharmacy, with enough medication to get my husband through the night, and no further. First thing in the morning we had to collect the first prescription from the original pharmacy, and then swing past the second pharmacy to recover the insurance card I had left in my frustration and exhaustion.
So the happy ending, I suppose, is that Mike has the medication he needs to get through my absence.
But this story? This story is evidence that our healthcare system is suffering. It is broken. There are many, MANY more problems with the American health insurance clusterfuck than the lack of single payer healthcare. There are problems with every single level, every middle man, every policy. Every. Single. One. Our healthcare system is so much more broken than the sudden (if expected) burden of $5K in healthcare costs every January. It is so much more broken than the outrageous prices pharmaceutical companies are permitted to charge for their products. It is so much more broken than the incompetence of healthcare workers who aren’t given adequate training, whether they are pharmacy techs who won’t listen to the instructions for procuring the lifesaving medications they dispense, or the doctors who dismiss women’s pain. The whole system is so broken, so unfathomably broken, that fixing it will take a lot of ugliness.
People will lose their jobs. Lots and lots of people will lose their jobs. Without the number of middlemen involved, a lot of middlemen and accountants and HR reps and the cogs that keep machines that large moving will be out of work. It will be ugly.
But people are dying. People are dying because hospitals are clogged up with people who just need routine (if critical) medication. People are dying because they have to ration out insulin because they cannot afford the thousands of dollars in increases. People are dying because the availability of epipens to families that make the median American income is dropping off the map. They are dying because for-profit dialysis providers have convinced healthcare providers to discourage their patients from seeking a donation of a kidney from a family member. They are dying because some plans lump diagnoses with the words “uterus” or “ovaries” into the umbrella of “reproductive care” and refuse to cover it. They are dying because families have to work themselves to death to maintain their insurance for their children. They are dying because when your option is to die or to leave your family struggling in crippling debt when you die eventually, however many years away that might be. It’s easy to tell yourself that dying faster and not trying to live is better for your family than forcing them out of their home, and depriving them of any sense of security.
THIS is the healthcare system we live it, and I don’t give a shit if I hurt feelings.
Normally, I believe the phrase, “I’m sorry if your feelings are hurt,” is bullshit. It puts the blame on the person who is hurting, not the person who caused the pain. It rejects responsibility. It is a non-apology. (You listening, Kevin Hart?) But you know what?
I’m sorry if the pharmacy techs feelings were hurt. I’m sorry if the insurance rep’s feelings were hurt. But I’m NOT sorry for what I said. I’m NOT sorry for what I did.
I’m not sorry for making them feel so shitty about themselves they wanted to quit.
I hope they do quit. Because if everyone who worked for these companies quit, if EVERYONE who worked in the business of exploiting sick people out of their last nickel because they’re sick and they’re sad and they have children who need them, so they’ll do anything. They’ll do fucking anything to stay alive.
That’s what humans do. We fight to stay alive. Or we fight to keep our families safe. And our current healthcare system is holding people hostage, threatening their safety and their families and squeezing, squeezing, squeezing.
Once upon a time, a push-pollster called me to take a “poll” about Illinois politics. The whole thing was targeted to frighten voters away from voting for pro-healthcare politicians. They kept repeating propaganda about death panels, spewing disproven myths about British and Canadian healthcare systems. I took the poll, and at the end, I stopped the pollster from hanging up.
“I know that times are hard, and you need to work. I get it. You need a job, and you’re doing what you can to make ends meet. But dude, please listen, your job is lying to people and scaring them away from making their lives better. From making everyone’s lives better. You’re scaring them into hurting themselves so you can pay your bills. And I’m not saying that makes you a bad person, but there has to be something else you can do. There has to be another job out there that will pay you just over minimum wage where you’re not relying on hurting people, and undermining our democracy, and furthering the divides in our society. There have to be other jobs. Please think about finding one.”
He stammered a moment, thanked me for my time, and hung up.
I want to say that to every insurance rep. To every pharmacy tech who has to ring up a $630 epipen. To every doctor who has to listen to their patient decline treatment so their family won’t go broke watching them die.
Imagine if all of them stopped doing that. Imagine if in one month, every insurance company in the country was faced with tens of thousands of cases of pharmacy techs ringing up epipens as a 90¢ laxative, and thousands of doctors coding their patients’ care as a common cold. Imagine if the insurance companies were all so bogged down with paperwork they couldn’t even begin to catch up with everyone.
Imagine that massive act of civil disobedience. Imagine how many people would live that month.
Or imagine that in 2020, everybody registered to vote and voted ONLY for politicians who ran on a platform of universal healthcare. I’m happy to listen to a debate about single payer or public option, I’m happy to hear everyone in the know out about the pros and cons. But imagine what would happen if THAT was the debate in Congress. If it wasn’t whether or not people SHOULD die in poverty and illness, or what the best way was to fix it, and then FUCKING FIXED IT.
2020 is too long for a lot of sick people to wait. It’s too long for a lot of families who can’t somehow scrabble together $5K every January. (Mike, I love you for working so much overtime this month. I love you. I love you. And I think it sucks you have to do this.)
There are a lot of people who are going to die in the next two years, between today and when the next presidential inauguration happens. A lot of people who don’t have to die.
A lot of people will be bankrupt by then.
It’s going to be too late for a lot of people.
I would tell everyone who works in this system and has the power to illegally help people, fucking do it. Do crime. If all of you are out there doing it, saying FUCK YOU to the companies making billions of dollars a year on the back of terrified, sick, dying people, they would have to fix this a hell of a lot sooner.
I rarely quote Jason Mendoza of "The Good Place," but I want to quote him. I want to shrug my shoulders and sigh defeatedly, telling my crew, “Go do crime.”
I want to tell you all to do crime to save lives, to be like Batman or whatever, but instead, I’ll sigh and repeat what I say over and over and over. Call your reps. Call your senators.
Write to the clown in the White House, on the off chance he can read.
Demand a fix to this.
Demand we make it better.
Read more about our broken healthcare system here: Begging My Congressman For My Families Lives
Read my most recent post here: Next Year is its Own Resolution
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