When I was in elementary school I was diagnosed with juvenile rheumatoid arthritis. All things considered, the late 1990s were a great time to receive the diagnosis, with innovative new treatments – biologics like Enbrel and Remicade – coming to market. And indeed, these drugs worked wonders for me after more conventional treatments did not. If I had been born just ten years earlier, I would have spent my teens stiff and fatigued, not active and engaged.
The treatments were not inexpensive but I was fortunate; my family had good insurance coverage and my parents were able to pay the not insubstantial out-of-pocket costs. My mom remembers the promise my rheumatologist made at the time: new biologics coming to market would not only increase my future treatment options but also bring prices down.
Now, nearly twenty years later only one piece of that promise has come to fruition. The number of medications available has grown substantially. But prices remain high, higher than when the drugs were first approved. Even more frustratingly, the prices are opaque and inconsistent. For the past several years I’ve been treated with a biologic drug delivered by intravenous infusion, which occurs monthly in a doctor’s office or infusion clinic. In the past year, I’ve lived in three places, been covered by three different insurance companies, and had three different rheumatologists. Although my treatment has remained constant, its price has varied wildly.
In early 2016, I lived in Washington, D.C. and had insurance coverage through my employer. There, I received my infusions in my rheumatologist’s office. They charged my insurance $18,159 for the medication and infusion; my insurance negotiated the allowed charge to $6,154 and paid the claim after my responsibility.
This summer, I quit my job to travel before I began graduate school. Thanks to provisions of the Affordable Care Act, I was able to return to my parent’s insurance. I received my infusions in my new rheumatologist’s office in Colorado. They charged my insurance $7,037 for the medication and infusion; my insurance negotiated the allowed charge to $6,387 and paid the claim after my responsibility.
This fall, I began graduate school in Rhode Island, and have insurance from the university. I receive my infusions at the stand-alone infusion center with which my new rheumatologist is affiliated. They charged my insurance $33,810 for the medication and infusion; my insurance negotiated the charge to $28,062 and paid the claim after my responsibility.
I’m always nervous opening my insurance company’s Explanation of Benefits after an infusion, particularly when it’s the first infusion I’ve received with that coverage. While I know that the treatment has been pre-authorized thanks to the mountains of paperwork completed by me and my doctor, I’m nevertheless terrified that it has been denied, leaving me on the hook for a bill that far exceeds my savings account. But my first EOB in Rhode Island left me reeling for a different reason – why should the same drug, dose, and infusion process cost more than four times as much in Rhode Island than in Colorado or D.C.? Even if my personal out-of-pocket financial responsibility has been similar in each situation, I find it nauseating that my current insurance company is paying so much more than seems necessary.
Wading through the EOBs, the price difference appears to be entirely due to the infusion center’s charge for the drug, and my insurance company’s minimal discount on that price. There is a way around this – instead of having the infusion center’s pharmacy provide the drug, I can have the drug sent to the infusion center from a specialty pharmacy. While this would save my insurance company money (it would cost the plan $8,251 from a specialty pharmacy, instead of $27,472 from the infusion center) my financial responsibility would increase, because I’d have to pay a specialty drug copay that exists even after I’ve met my deductible and annual out-of-pocket max. Furthermore, coordinating delivery of the drug from the specialty pharmacy to the infusion center every month is a time-consuming endeavor: when I had a similar set-up to receive infusions during college, I spent two hours on the phone coordinating prior authorization, delivery, and receipt of the drug the week before every infusion. That’s a lot to ask of a patient who is losing money on the endeavor.
Still, I’m in the process of moving my prescription to the mail-order specialty pharmacy. But doing my part to help contain costs shouldn’t be this hard.
Rebecca Thorsness is a PhD student at the Brown University School of Public Health. She was also winner of the 2016 Costs Of Care Story Contest.