Lucky…

In today’s episode of “Whatever Doesn’t Kill You Makes You Stronger”: Insurance + PBM vs. Me

I’ve learned that a lot of people don’t actually know what a PBM is. It stands for Pharmacy Benefits Manager—the middleman between insurance companies and patients that’s supposed to keep drug prices low (spoiler: they don’t) and make private insurance more affordable. It’s a multi-billion-dollar industry that neither produces nor sells a product. Instead, PBMs exist as red-tape gatekeepers with minimal government oversight. They’re also known to make life with a chronic illness significantly harder.

I recently moved 1.5 hours away from my rheumatologist to help care for my mom, who is struggling with COPD. If you know my history, you’ll remember that I lost my dad in the early stages of COVID. He died alone, and I will never let that happen to my mom.
That said, I planned to keep my rheumatologist because my ultimate goal is to return to the Philadelphia area eventually. Driving to her after work (I still work in the Philly area) was no problem… until I got sick.

I’m now on a medical sabbatical—a type of leave where I receive significantly reduced pay but keep my retirement and full medical benefits. In my opinion, the benefits outweighed the financial hit. When I got sick on September 1, I had no idea what I was up against. Honestly, I’m still not 100% sure, but I’m working hard to figure it out.

What I have learned is that my body has developed antibodies to my current biologic, making it essentially useless. Recent tests show inflammation not only in my joints but in some internal organs as well. RA is running through my body like the Christmas Express Train—just without the hot chocolate and the dancing waiters. It is, however, trampling everything in its path and making me weak.

Earlier in this new chapter of illness, we discovered I was anemic. Infusions have helped bring my levels into the low-normal range, but I won’t know if I’m actually recovering until sometime in the new year. I can wait for that. What I can’t wait for is a new biologic to help my body function again. I even had to bite the bullet and request another Medrol dose pack. My flare is so bad that even the skin on my face is swollen and red.

After talking with my rheumatologist, we decided on a new infusion. The issue? I don’t feel capable of driving 1.5 hours in my current condition. On top of the RA symptoms, I’m still dealing with nausea, dizziness, vomiting, and bone-deep fatigue—not exactly ideal for a long solo trip. So my doctor and her staff helped me locate a local infusion center within my insurance network.

My rheumatologist’s office reached out to the clinic, and the clinic attempted to submit the prior authorization… but it was denied before they could even accept me as a patient.
Why?

Because the clinic provides the medication, but my PBM insists that I can only receive it if they provide the medication.

Uh, what?

I am now being told I need a “carve-out” for permission to access a drug my doctor prescribed—at a clinic my insurance already covers. I’m going on week two of trying to find a single human being who will help me get the medication I need. Insurance says there shouldn’t be any issue. My specialty pharmacy insists no prior authorization was ever submitted. The clinic insists “a woman named Theresa from the PBM refused to put it through because I can’t get medication from anyone but them.”

Make it make sense.

To top it off, two of the three people I spoke with during my full-day insurance-phone-call-a-thon told me, “You’re lucky you know how to fight for yourself.”

Lucky?

I’m battling a serious illness and battling my insurance at the same time.
Am I lucky to have insurance?
Am I lucky to have multiple autoimmune diseases?
Or am I “lucky” because I understand the system well enough to force progress?

I wish someone would invent a healthcare system that didn’t require chronically ill patients to fight tooth and nail for basic quality of life.

That would be lucky.