Michelle and Simon's story (US)
We are based in Indiana, in the Midwestern and Great Lakes region of the US.
andrew, age 7
Our family became directly impacted by inflated drug prices when our 8 year old son was diagnosed with Juvenile Rheumatoid Arthritis in January 2019. He was only 7 years old at the time. For a while he had been complaining about pain in his elbow - this soon got to the point where he would scream if it was touched. We realised something was wrong and took him to the doctor where he was quickly diagnosed.
After initial treatment which involved injections into the bone and a drug nicknamed ‘baby chemo’, his treatment was escalated to include a prescription of a drug called Humira.
When presenting the option of Humira, the doctor hesitated slightly as if to acknowledge that all treatment options were dependent upon insurance. It was a hesitancy we would hear time and time again as we began to make calls to find out what coverage and pricing would be available to our son.
It took three weeks between receiving the doctor’s prescription to receiving the actual medicine - a delay that was entirely due to drug pricing.
When the doctor prescribed this medicine, we had to wait for authorization from our insurance company for this particular treatment. Had enough steps been taken before it was prescribed? How serious (translation: how much pain) was the condition for our little boy to warrant this treatment? I remember the day I received the call from the doctor’s office saying “Congratulations, your son has been approved to receive Humira.” Like it was some special contest or something.
“I remember the day I received the call from the doctor’s office saying ‘Congratulations, your son has been approved to receive Humira.’ Like it was some special contest or something. ”
Shortly afterwards, I receive a phone call from a Specialty Pharmacy (because this drug only gets dispensed from a specialty pharmacy). I return their call and ask them the cost. They don’t know yet and put me on hold to ask my insurance company. When they return, I find out that our insurance hasn’t approved them for our plan and so they can’t give me a price. They refer me to another specialty pharmacy. I call them. They need the doctor to send them my son’s prescription. This process of back-and-forth pharmacy calls and waiting takes several days.
Finally I receive another phone call, again congratulating me on being approved through them to receive Humira for my son. I ask them what the cost is. The retail cost for Humira is $6,523.00 PER MONTH. They will have to call me back with my co-payment amount (i.e. the amount we will have to contribute before our insurance will foot the rest). They actually sound apprehensive on the phone and inform me that there are several discount cards and financial options that may be available to us. When they call back, we find out our co-pay is only $45. (Note: we have access to this discounted rate because we spend over $2000 per month for health insurance.)
While I’m thankful our payment has been reduced from over $6500 to $45 per month, I’m left with two questions.
The first one I asked the pharmacist: are there any complications with stopping this drug after long-term usage that we should be concerned about? Should my insurance change and we can no longer afford this medicine, will he be hurt? Can we afford to begin this treatment not knowing what’s in store financially in the next year or the next? What about when he ages out of our plan?
The second question I have: if I’m paying only $45 of a $6523 drug, who’s paying the difference?