I didn’t always need my health insurance, I’ll admit. For most of my adult life, I didn’t have it. When I blew out my knee in a bouldering accident, got ACL surgery, and it subsequently got infected (and I almost died from sepsis), I relied on the hospital to lower my bill, and the rest was forgiven in seven years. It wasn’t until I went to graduate school that I got actual, real health insurance. I was 35 years-old.
And it wasn’t until I was diagnosed with rheumatoid arthritis that I began paying out of pocket (nearly $500 a month) for my Molina health insurance. Yes, I paid $6000 a year, and yes, they questioned my rheumatologist when we finally landed on the “cure” for my RA— an immunosuppressant that costs over $6000 for two doses without health insurance. My rheumy (as I call them) had to prove that they’d tried every other (cheaper) medication on the market, which they had. We started with the least expensive, and, side effect after side effect, went through pill after pill until my Humira was finally justified. Now that I’m in a new state and have a new insurance provider, I’m currently unable to get my medication because they want me to go through the whole process again.
There is no part of my life where I feel less in control, and more vulnerable, than my health, and that’s not because of my health, but because of health insurance companies.
It’s no secret that the United States has a terrible healthcare system, ranked last out of eleven of the richest countries in the world. I’ve known this since watching Michael Moore’s Sicko, released in 2007.
It wasn’t until last March that I was so profoundly effected by my health insurance company, when I woke up one morning and couldn’t walk. I was in such intense pain, like fire radiating down the backs of both my legs, that I immediately started sobbing and had to crawl to my bathroom. I lay in bed all morning, legs tucked into my chest, crying off and on. I had health insurance but I was freelancing and didn’t have a lot of money. I also had no idea what was happening. My lower back had been bothering me; I’d had a fall while working as a nanny the summer before, and had gone to the doctor for my back. She gave me a script for physical therapy.
I lay in bed for the entire day, popping ibuprofen, and the following day I sobbed as I eked my way down the stairs and drove to the local ER. They should have given me an MRI, but didn’t. For over $1000 out of my pocket, I got five percocet and was told to see my PCP. I was in so much pain that I could barely get up from the hospital bed, or walk to the bathroom. I had no idea where it was coming from, and it would take nearly a month to find out.
I got in to see a PCP (not mine, she was busy) the following week. Right away, she knew it was a spinal issue. I needed an MRI. My rheumatologist had also ordered an MRI because of intermittent hip pain I’d been having, just the previous week. That one was denied, and the two MRI orders snarled together, hooking onto each other and becoming one. The primary care doctor assured me that her MRI would be approved. They’d put a rush label on it, because this was an emergency.
My pain had shifted from the backs of both my legs and into my left leg. My foot and calf were numb to the touch, but also encased in a vice grip of pain. I didn’t know it then, but one of my lumbar discs had essentially exploded, sending it gooey center out into my spinal canal, up two levels, where it was pressing against my spinal cord. Two nerves extending down into my left leg were slowly being squeezed of life.
Over the course of the next three weeks, my pain increased, as did the numbness and weakness in my left leg. I couldn’t walk more than 50 feet and needed a cane. I had to navigate my stairs slowly, unable to count on my left leg for any support. I had work assignments piling up— I completed them the best I could, while laying in the only position I could tolerate, on my right side. The position hurt my neck, and I could only type for 30 minutes at a time.
Nearly every day, I called my health insurance company, trying to figure out why the MRI wasn’t being approved.
I talked to a different person each time, and had to explain the situation anew.
No, I wasn’t trying to get the hip MRI (ordered previously by my rheumatologist) approved. Didn’t they see the other one, ordered by the PCP, marked urgent?
Each day, the numbness and pain in my left leg got worse. I didn’t know then what was happening— that with each passing day my nerves were dying a slow death, their circulation choked off by the mass in my spine.
My PCP was as frustrated as me, and her nurses were also calling the insurance company nearly every other day. Meanwhile, I lost money because I couldn’t work at the pace I’d been going. I couldn’t work on my book, which had recently been returned to me by my editor. I was living in a city where I had no support and no community, and my mental health was suffering.
My PCP told me: if you feel any numbness is your groin, you need to go to the hospital right away. She was worried I’d develop Cauda equina, which is essentially a total loss of lower body nerve function, resulting in incontinence and possible paralysis.
If I had known that the insurance company would take nearly a month to approve the MRI, I’d have gone back to the emergency room and insisted on an MRI. Insurance companies can’t reject MRI orders when they come from an emergency room or hospital, which is why it’s also so heartbreaking that the hospital didn’t give me an MRI upon my first visit. It would have prevented so much.
Finally, after many tears and frustrating phone calls, my insurance approved the MRI. By mistake, the medical center gave me both my doctor’s MRI and the one ordered by the rheumatologist. I still owe them over $500 for that mistake.
Sitting in the MRI machine was absolute hell. Laying on my back was excruciating. But the MRI itself was a gift. It was promptly sent to a neurosurgeon’s office. When they saw it, I had an immediate appointment.
At the neurosurgeon’s office, the doctor pressed down on my left foot and, finding no resistance, insisted on immediate surgery. Three days later, they opened my spine.
“You poor thing,” my neurosurgeon said to me, when he realized I’d been living the way I had for a month. I hadn’t thought that about myself, because my pain and my situation hadn’t been validated by the health insurance company.
I will forever be grateful for my surgery. I hadn’t been able to walk for an entire month, and the day after my surgery I walked five blocks. It felt like an absolute miracle. Within several weeks, I was walking miles at a time. It was spring in Seattle. I was broke and recovering, but I will never forget those walks after my surgery— I felt like I was part of the world again. To feel the sun on my face, and smell all the flowers blooming, and simply to be able to walk at all. I was so grateful.
That said, the inaction of Molina has had lasting effects. My nerve still hasn’t fully recovered, and may never recover. I have intermittent pain in my left leg, as well as continuing weakness despite six months of physical therapy and strength training.
If I’d gotten my MRI within the first week, my nerve wouldn’t have been so damaged.
I am left asking myself: why did my insurance company get to make the final decision regarding the importance of my MRI, and not my doctors?
Why, when I’ve been taking a medication for nearly a year, does my new insurance company deny my access to it, simply because of its cost? Especially when the medication so drastically improves my quality of life?
And why is the medication so expensive to begin with?
I debated whether or not to write this post or tell this story, but I know I’m not the only one who’s gone through this, or will go through this. I’d love to hear your thoughts and experiences.
I'm sorry you are having such a tough time. For a very large number of people, our capitalist money-making machine we call health care is doing great harm. I have lived in developing countries with better care than here.
Some years ago, I had several surgeries, including brain surgery for a tumor and neck surgery right after. I had good health insurance. The bill totaled over $350,000. My share was $8.00. That's what health care can and should be.
I hope you recover well. DM me if I can do anything to help.
Yes. This. This is the aspect of American capitalism that may get me to expatriate.
Several years ago I broke my neck. It took two days fighting with Kaiser - a combination healthcare provider and insurance company - before I could even get an MRI to show it.
I have good reason to fear the healthcare industry will at some point kill me. This for-profit beast does it to thousands or maybe millions of people every year.
I feel so sorry for not only the victims but also the medical professionals whose lives are betrayed by this money stealing machine.