What’s Good for the Back Isn’t Good for the Wallet: A Patient’s Story

By Caren Gussoff Sumption

The pains in my back and hip started in my mid-­twenties, but it wasn’t until my first plaque psoriasis outbreak at 35 ­­ both palms peeling off like a combination of a bad sunburn and dried airplane model glue ­­ that physicians could stop tossing theoreticals at me (Fibromyalgia! Lyme Disease! The fact that humans are inefficient bipeds!) and diagnose me with psoriatic arthritis. X­rays of my spine revealed an advanced case of ankylosing spondylitis, as well.  My rheumatologist went straight to TNF inhibitors; Enbrel, specifically, for no other specific reason than Amgen Pfizer offered a generous patient support plan which offered deep discounts to patients with private insurance, like me.

My first three injections of Enbrel were magical. I thought I was operating at a normal­-to-uncomfortable pain level ­­ it had all simply become noise I’d learned to live with, and bend around. But the medication had an almost instant effect, relieving at least 70% of my spinal pain, 40% of my hip pain, and soothing down my skin to the point where I could again hold a pen without fingers splitting open and bleeding.

And my co­pay? Barely thought about it. I didn’t have to: with the Enbrel Support Program, I didn’t even have a co­pay. Then, I went to the pharmacy (read: skipped, ran, even) to pick up dose four. The pharmacist smiled when she rang up the syringes. I owed, she said, over two thousand dollars. I am employed. In the tech industry. I make a nice salary, enough to be the primary breadwinner as my husband returns to school full­-time and support and provide care for my elderly father. But two thousand dollars had to be a misprint, a joke, a paperwork error, an oversight of some perfectly understandable sort.

I pulled out my cell phone. It wasn’t. My insurance company only paid 25% of the prescription, and in three doses had already burned through the quarterly allowance each patient is allotted on the patient support plan. My medication was two thousand dollars (and change) per dose.

I was devastated. I was terrified. My rheumatologist ran the numbers on other brands ­­ Humira, Simponi ­­ yielded the same running total. I called my insurance company. My rheumatologist called my insurance company. We argued. I cried. The manufacturers of Enbrel, as well as competing manufacturers, informed me they couldn’t help…unless I went off my insurance. Uninsured, I was a tax­ write off, and could qualify for free or low­priced medication. I was gobsmacked. I was insured. I worked. I was supposed to be able to take care of myself, afford the medications that not only helped my symptoms, but would stop my diseases’ progression and allow me to remain a productive, working person for longer.

My insurance company wanted me on the much­ cheaper disease­ modifying antirheumatics, old, first ­line medications since proved less than effective on their own for my conditions. In fact, my rheumatologist spent a free afternoon, on her own time, faxing my insurance company papers proving its inefficacy in my conditions.

Meanwhile, a week passed. Two. Three. I backslid. Off the medications, the inflammation that caused the pain and damage in my hip and spine returned. My hands peeled, joined this time by a spot on one knee and a patch inside my ear.

In week four, my insurance company countered by offering Remicade, an effective TNF blocker that is only available for IV­ delivery in a clinic ­­ a fine option, my rheumatologist agreed, but one that could not possibly be cheaper (than the medicines I injected myself), requiring the cost of a chair, office time, an IV nurse, and so on. Logical, right?

The logic creeped its way up the chain of command. Eventually (week six), someone with a corner office agreed. I was approved for Humira, two doses per month ­­ equivalent to my Enbrel dose ­­ at the rate my plan covered “specialty drugs.” This rate, along with manufacturer Abbot’s savings plan, would bring the drug back down to affordable levels. My only restriction was that I had to receive the Humira from their mail order pharmacy.

At this point, I would ride a unicycle naked in public if my insurance company required that for my medications. I am extraordinarily lucky to have a health care provider willing to go to bat for me to prove the value of my medicine to my insurance company ­­ because the value, to me, my life’s improved quality, is priceless.


Caren Gussoff Sumption was a contestant in the 2012 Costs of Care Essay Contest.

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